tag:blogger.com,1999:blog-48956045948968142892024-03-20T02:20:12.867-07:00CFS Patient Advocateconsuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.comBlogger90125tag:blogger.com,1999:blog-4895604594896814289.post-77661057416025399932021-10-25T18:24:00.002-07:002021-10-25T18:24:28.708-07:00Interview with Dr. John Chia<p></p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/LSucgoEvoUQ" width="320" youtube-src-id="LSucgoEvoUQ"></iframe></div><br /> <p></p>consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com0tag:blogger.com,1999:blog-4895604594896814289.post-54366162748642628482017-08-11T13:09:00.001-07:002017-08-11T17:39:45.121-07:00CBD<div class="MsoNormal">
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This post is preceded by 2 posts on sleep. These three posts are
designed to be viewed together. <o:p></o:p></div>
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I started to get interested in medicinal marijuana about
five years ago. There were a few examples of ME/CFS patients who used various marijuana
medicinals for pain, inflammation and sleep.<span style="mso-spacerun: yes;">
</span>Most resided in states where medical marijuana was legal or about to
become legal. <o:p></o:p></div>
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Cannabis has over 70 cannabinoids of which the most well
known is THC, the psychoactive part of the plant.<span style="mso-spacerun: yes;"> </span>A second component or cannabinoid has
recently received a good deal of attention. It is CBD or cannabidiol. CBD
is believed to have various medicinal activities.<br />
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The Federal government
continues to list marijuana as a schedule 1 drug. One very great consequence of
this is that research into marijuana is severely and intentionally restricted.
With more states legalizing marijuana, the bigger states are starting to do
some research into this plant. Research continues in <a href="https://www.usnews.com/news/best-countries/articles/2017-04-11/israel-is-a-global-leader-in-marijuana-research">Israe</a>l, Spain, UK and
Italy, but it is, predictably, underfunded. <o:p></o:p></div>
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Anyone who wants to engage this subject is going to have
to proceed on their own, guided by trial and error. <o:p></o:p></div>
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In reality there are two allied plants, cannabis and hemp.
Cannabis is loaded with THC, while hemp has very little. Both have a great many
other cannabinoids including CBD, CBN, CBG, and CBDa. <o:p></o:p></div>
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CBD from marijuana has always been touted as the gold
standard of CBD. Some propose that in order to be effective CBD needs to have a
certain amount of THC with it. Marijuana CBD is restricted
to states where marijuana is legal. It appears that <a href="http://www.marysmedicinals.com/">Mary's Medicinals</a> makes good products. <o:p></o:p></div>
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About five years ago, there were only a few companies that
produced CBD from hemp. These CBDs were legal, but their quality was challenged
by many, including the marijuana CBD makers. Also the FDA objected to the claims of some of these hemp CBD producers.<o:p></o:p></div>
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It remains to be determined if hemp CBD is as good as
marijuana. However, certainly things have radically changed in the last few years; there has been an astonishing amount of sophisticated hemp CBD that is available through the Internet. Hemp
CBD is legal in all 50 states. <o:p></o:p></div>
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<span style="font-family: "times" , "times new roman" , serif;">There is a growing body of positive anecdotal information of hemp CBD
use, but there is very little of what one might call real science. This
might change but I wouldn’t hold my breath. The main claim for both forms of
CBD is that they reduce pain and diminish anxiety. Hemp CBD has been called
“calming drops” by my own daughter. <o:p></o:p></span></div>
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<span style="font-family: "times" , "times new roman" , serif;">The question remains. Will CBD be useful to ME/CFS patients?
We are about to find out, as more patients are giving this a try. As with
almost everything with this illness, the process is wholly trial and error. Additionally, every treatment must be individualized. <o:p></o:p></span></div>
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<span style="font-family: "times" , "times new roman" , serif;">The present choice in high grade, organic hemp CBD is quite
surprising. At one end one finds <a href="https://marysnutritionals.com/product/remedy-oil/">Mary’s Nutritionals pure CBD</a>. This has been
heated and refined to take all terpenes and additional cannabinoids out of the solution, leaving only pure refined CBD oil. This oil is at the expensive end of
the spectrum. One can find similar CBDs at RSHO with their <a href="https://hempmedspx.com/product/real-scientific-hemp-oil-x-4oz-1000mg-gold-label-liquid-bottle/">RSHO-X</a> - no trace of
THC, pure organic hemp CBD. At the other end of the spectrum is raw unadulterated, unheated hemp
CBD, also organic, some grown in the US.<span style="mso-spacerun: yes;">
</span>A good example of this can be found at <a href="https://nuleafnaturals.com/collections/all">Nu-Leaf</a>. These products have CBDa and CBD along with terpenes and all the cannabinoids in
the hemp plant, producing what is referred to as the "entourage effect". The entourage effect is the supposed but unknown interaction of all the cannabinoids and terpenes working together. In
between, and cheaper, is a heated, partially refined CBD that can be settled on in various places. Read about this at <a href="https://www.endoca.com/en/p68-buy-cbd-oil-drops-3-percent-cbd-hemp-oil-drops-300mg-cbd-drops">Endoca</a>.<o:p></o:p></span></div>
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<span style="font-family: "times" , "times new roman" , serif;">As there are arguments as to whether THC is necessary to make
things go, so there are arguments between the use of pure refined hemp CBD oil versus the
raw plant oil with all the terpenes and host of cannabinoids that work together to create the “entourage effect”. The positive way to
look at this is that there are many options to try. <o:p></o:p></span></div>
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<span style="font-family: "times" , "times new roman" , serif;">In addition to oil, there are pastes, extracts, pills, crystals, gels and
suppositories. This industry has exploded. Put a Google alert on hemp CBD and
start reading.<o:p></o:p></span></div>
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<span style="font-family: "times" , "times new roman" , serif;">The rationale for using CBD in ME/CFS lies in the thought that
ME/CFS might be connected to an Endocannabinoid Deficiency. <a href="http://www.the-scientist.com/?articles.view/articleNo/49810/title/Grass-Routes/&utm_source=hs_email&utm_medium=email&utm_content=54367701&_hsenc=p2ANqtz9h2It2aR1o1sXAHA0QxzLmmzoFqiqz_PNlwMqVnV8PTzvOtRsGkEsJB4n5BkOWxdHnO8S1AgAQXl74U7nEQf9LZbqUeQ&_hsmi=54367701///">Here is an article</a> on the Endocannabinoid system.<span style="mso-spacerun: yes;"> </span><a href="https://www.projectcbd.org/article/cannabinoids-and-mitochondria">Here is another</a> one. Finally, here is <a href="https://www.projectcbd.org/science/cannabis-pharmacology/dr-ethan-russo-cbd-clinical-endocannabinoid-deficiency">an interview with Dr. Ethan Russo </a>on CBD and Endocannabinoid Deficiency.</span></div>
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<span style="font-family: "times" , "times new roman" , serif;"><o:p></o:p></span></div>
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<span style="font-family: "times" , "times new roman" , serif;">The study of the Endocannabinoid system can be said to have
begun by the Israeli scientist Raphael Mechoulam with the discovery of the
psychotropic cannabinoid THC in the mid-1960’s. (Dr. Mechoulam remains the
foremost marijuana researcher in the world.) Further research identified the
brain receptor CB1 in the early 1990s, quickly followed by the discovery of a
second receptor CB2 located throughout the human body. With these discoveries
the Endocannabinoid System was identified, leading to discoveries that this
very system helps regulate a host of processes in the body - and the awareness
that deficiencies might have some connection to chronic illness. </span></div>
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<span style="font-family: "times" , "times new roman" , serif;"><o:p></o:p></span></div>
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<span style="font-family: "times" , "times new roman" , serif;">With so many dysregulations and disconnects in this strange
illness of ME/CFS, it is worth considering that these patients suffer also from
Endocannabinoid Deficiency System. The supposition is that these deficiencies,
these Endocannabinoid deficiencies, can be corrected – with CBD or other cannabinoid items. Certainly
the symptoms of Endocannabinoid Deficiency seem to shadow ME/CFS symptoms. <o:p></o:p></span></div>
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<span style="font-family: "times" , "times new roman" , serif;">There is additional study and use of other cannabinoids from
hemp and cannabis for seizures, sleep, pain, anxiety, migraines, wound healing,
and the rest. You name it and some cannabinoid is reputed to help treat it.
THCa is in the raw cannabis plant. If one heats THCa it converts to THC. The
straight marijuana plant can be treated in a cold fashion (unheated) - and
the THCa preserved. THCa is a non-psychoactive compound, which is reputed to
have many of the qualities of CBD. CBN is another interesting cannabinoid. CBN
can be increased in the marijuana plant material by aging the main product, exposing it
to sun and light for a long time – months. Converted into a medicinal, either a
tincture or a salve, CBN is reputed to have high sedative effects. Others say
that the sedative effect of this aged product comes from the aged terpenes. CBG
is another cannabinoid that is gaining interest, also for the same properties –
its calming and sedative properties. <o:p></o:p></span></div>
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<span style="font-family: "times" , "times new roman" , serif;">My main interest at the moment is in these various
cannabinoids as sleep enhancing agents. Not to beat a dead horse, but a good
sleep sensor is very helpful in seeing changes wrought by different compounds
in different arrangements. A pulse and oxygen saturation monitor also could be
helpful, in conjunction with low-dose oxygen. A sleep sensor can separate out
and determine sleep initiation, sleep duration, length of sleep entirety or
sections of sleep. This can be immediately obvious and adjustments made based
on the sensor readings. <o:p></o:p></span></div>
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<span style="font-family: "times" , "times new roman" , serif;">So the world is working its way back to cannabinoids, which
does not make everyone happy. There is a great battle going on, and it is not
difficult to identify its outline and terrain. Where this will go we do not
know. The surprising thing is that cannabinoids have been used as medicinals
for thousands of years before being put out of business in the US in 1934 and
then really put in the slammer by Richard Nixon in the mid-1970s.</span><o:p></o:p><br />
<span style="font-family: "times" , "times new roman" , serif;"><br /></span><span style="font-family: "times" , "times new roman" , serif;">Both ME/CFS physicians Paul Cheney and John Chia have used CBD with their patients. </span><br />
<span style="font-family: "times" , "times new roman" , serif;"><br /></span>
<span style="font-family: "times" , "times new roman" , serif;">Here is an <a href="https://bengreenfieldfitness.com/2015/06/how-to-use-cbd-oil/">additional blog</a> that has information on CBD.</span><br />
<span style="font-family: "times" , "times new roman" , serif;"><br /></span>
<span style="font-family: "times" , "times new roman" , serif;">What is written about is educational in nature. It is not medical advice. Please consult your physician (if you have one) for medical advice. </span></div>
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consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com0tag:blogger.com,1999:blog-4895604594896814289.post-58374344771608510152017-08-04T20:05:00.000-07:002017-08-04T22:02:40.969-07:00Sleep in ME/CFS<div class="MsoNormal">
<span style="font-family: "times";"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times";">The sensor helps gather some important objective information - when the patient goes to sleep, when she is awake, her heart rate and movement, when the patient awakes. One can quibble that the measurement of various types of sleep are only estimations, but I maintain that over time one gets an idea about what one might be able to do to improve sleep. Certainly, over time, one can decipher a better night's sleep from a worse night's sleep. One can detect patterns of improvement or regression. One can ask why and try various supplements or drugs. </span></div>
<div class="MsoNormal">
<span style="font-family: "times";"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times";">Let me make some suggestions as to what might
help. None of this should be taken as medical advice. I am not a doctor and
have never had the slightest interest in being one (although I have taught a
number of terrific doctors!).</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "times";">Vasoactive Intestinal peptide<o:p></o:p></span></b></div>
<div class="MsoNormal">
<span style="font-family: "times";">Vasoactive Intestinal Peptide
(VIP) is a neuropeptide with a host of activities in the human body. In ME/CFS,
<a href="http://iacfsme.org/PDFS/Brenu-Pathomechanisms-Spring2010-7-30.aspx">it was studied by Don Staines</a> about ten years ago.</span> Very little follow up study in ME/CFS has been done of this neuropeptide. One wonders why. <span style="font-family: "times";">Both Dr. Paul Cheney and Dr.
Ritchie Shoemaker used it in their practices with varying success (until they
retired). Dr. Shoemaker describes it<a href="http://www.survivingmold.com/docs/VIP_published_3_2013.pdf"> here,</a> as it applies to CIRS. It appears to have broad activity. Dr. Cheney believes it helps reboot the deranged sleep cycle in the illness. The idea is
that it needs to be taken from 9-18 months to have effect. VIP is
taken in very small amounts by mouth several times a day. </span><span style="font-family: "times";">VIP can be procured by prescription from one compounding pharmacy in the US. Various testimonials</span><span style="font-family: "times";"> can
be found on VIP activities in ME/CFS by searching online, although not a whole
lot is available. VIP is a vasodilator that seems to potentiate other drugs or
supplements. It is believed to help with sleep. As part of
the Cheney protocol <a href="http://www.prohealth.com/library/showarticle.cfm?libid=19231">it is described here</a>. This is from several years ago. </span><span style="font-family: "times";">Testing VIP levels can be
done at ARUP labs. Other labs appear to be unreliable.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "times";">B12<o:p></o:p></span></b></div>
<div class="MsoNormal">
<span style="font-family: "times";">In the last two or three years,
I have learned about transdermal or liposomal delivery of various items,
including B12. B12 can be very effective when injected, either methyl or hydroxyl
or both. However, for certain patients, injections present a real problem. One
very nice solution is the transdermal <a href="http://b12oils.com/">b12 oils</a>, made in Australia. They can purchased through b12oils.com. This company makes an adenoysl
B12 spray as well as both methyl and hydroxyl and various other combinations,
including a transdermal b-complex. The oils are delivered by a predetermined
sized spray to be rubbed directly on the skin. There are several discussions of b12 oils on <a href="http://forums.phoenixrising.me/index.php?threads/transdermal-b12-oils.33172/">Phoenix Rising</a>. This product increases B12 on an OAT test. B12 is closely linked to B2. One can also buy or make several different
liposomal b12s. Liposomal products generally are better absorbed. Taking methyl b12
can help with sleep. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "times";">Magnesium <o:p></o:p></span></b></div>
<div class="MsoNormal">
<span style="font-family: "times";">A number of years ago I
began looking around for ways to get magnesium in the body other than through
pills or injections. I came upon a magnesium sulfate cream made by <a href="http://www.kirkmangroup.com/magnesium-sulfate-cream-113-gm-4-oz.html">KirkmanLabs</a>. This is effective for short durations, perhaps an hour or two. Ultimately,
I explored how to make transdermal magnesium myself. This
could be both cheaper and allow me to make larger amounts. Through the internet
I have learned to make a transdermal magnesium chloride cream that allows a
serious uptake of magnesium. It is especially helpful if applied prior to sleep. It is relatively inexpensive, and it works. Applied in enough volume to the skin, magnesium
is critical in putting a person on the road to sleep. Its duration of activity
seems to be two hours at the most. To further increase magnesium, I have learned to make emulsified or liposomal products. Specifically, I
have learned how to liposomalize magnesium threonate. This really helps taken prior to sleep or during the night, and it lasts considerably
longer than the lotion. In my view, magnesium is a key to solid sleep. Various liposomal magnesium </span><span style="font-family: "times";">products can be bought online or from compounding pharmacies. They tend to be expensive. </span><br />
<span style="font-family: "times";"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "times";"><br /></span></b></span>
<span style="font-family: "times";"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "times";">5-htp, SAM-e, Uridine</span></b></span></div>
<div class="MsoNormal">
<span style="font-family: "times";">It is very difficult to determine what might help slow wave sleep. A few supplements have some anecdotal testimonies. Among
these are 5-htp and SAM-e and Uridine. All are mentioned as increasing deep or slow wave sleep. Both of these can be put in a
protocol and tested against a sleep sensor. One can quickly determine in a few
weeks whether a particular item might improve sleep. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "times";">Piracetam<o:p></o:p></span></b></div>
<div class="MsoNormal">
<span style="font-family: "times";">Piracetam is a prescription
drug in Europe. In the USA, it is available as a supplement. It was the first
of what are known as nootropics. Piracetam is widely studied but not in ME/CFS. It is hard to believe that there is so little research on this substance in ME/CFS. However, there is some good information on Piracetam
on various sites. The first is cfsremission and can be read <a href="https://cfsremission.com/treatment/symptom-mitigation/core-piracetam/">here</a>. Scroll down on this<a href="http://www.fiikus.net/?cfstreatment"> page</a> by Maija Haavisto and read what she says. The third is included in a book and website by Erica Verrillo <a href="http://cfstreatment.blogspot.com/p/supplements.html">here</a>. In certain cases, Piracetam can have a
profound affect on sleep. As is usual, the opposite can happen also. Two more widely employed studies on Piracetam and oxidative stress can be found <a href="http://journal.frontiersin.org/article/10.3389/fnins.2010.00044/full">here</a> and <a href="https://www.ncbi.nlm.nih.gov/pubmed/16284628">here</a>. Piracetam can be liposomalized. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "times";">Other items <o:p></o:p></span></b></div>
<div class="MsoNormal">
<span style="font-family: "times";">Other items that are worth
testing for sleep are GABA/theanine liposomal spray, glycine, l-ornithine, melatonin, valerian
root, bacopa, and others. All need to be tested as trial and error. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "times";">Drugs<o:p></o:p></span></b></div>
<div class="MsoNormal">
<span style="font-family: "times";">Several drugs are suggested
for restoring deep sleep in ME/CFS. Among these are Trazadone and Xyrem. I
don’t not know much about Trazadone, but I myself would be worried about a
dependency on an anti-depressant. Many drugs are double-edged swords. Some believe that severe ME is the result of
negative drug reactions - and. from my own situation, I would tend to believe this. Xyrem is a
miracle drug for some patients, with ME/CFS and otherwise. It was studied a few years back by
Klimas, with favorable results. Xyrem is capable of putting some patients into
regular and sustained deep sleep. It can bring significant benefit to ME/CFS patients, provided they can tolerate the drug. As with many drugs, Xyrem appears to lose
efficacy over time - and it also seems to have various unpleasant side
effects for some, including heightened daytime anxiety and driving hunger. Xyrem is heavily regulated and controlled by Jazz Pharmaceuticals, which holds a monopoly. Back when it was held by Orphan drugs, Dr. Enlander was interested in doing trials for ME/CFS. In the 1990s, GBH could be procured in a health food store for $30. Xyrem now costs thousands of dollars. It is prescribed mostly for Narcolepsy and Cataplexy. By definition one cannot have narcolepsy without cataplexy. In my opinion, ME/CFS is a cataplexic illness. All patients should qualify for taking this drug. I have seen this work in certain patients and it is impressive. In 2009, Klimas was onto this treatment, but she seems to have been discouraged by the difficulties in procuring it. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "times";">Low dose oxygen<o:p></o:p></span></b></div>
<div class="MsoNormal">
<span style="font-family: "times";">For years ME/CFS patients
have taken nasal oxygen. Generally it seems to relax patients and help
prepare them for sleep. Oxygen at higher levels is believed to be toxic to
ME/CFS. At lower levels it works in a paradoxical fashion, as recently described
by Dr. Paul Cheney. The closer one can<span style="mso-spacerun: yes;"> take low-dose</span> oxygen to sleep time, the more effective it can be. Certainly a trial of taking low-dose oxygen during the first part of the night is warranted. It seems to blunt awakenings caused by a stress response to low oxygen saturation. One can get a hint of this on a sleep sensor program. More particularly, oxygen
saturation can be measured by a simple device placed on the finger and wrist at night. This device measures oxygen saturation and heart rate, so that the problem can be identified. It appears that a good number of patients respond well to low-dose oxygen during sleep. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "times";">And then there is hemp and marijuana based CBD</span></b><br />
<span style="font-family: "times";">These CBDs, along with CBN and THCa, and maybe CBG are incredibly promising as a sleep treatment in ME/CFS. I will write a bit about this in my next post.</span></div>
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consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com0tag:blogger.com,1999:blog-4895604594896814289.post-92062308902303025852017-06-03T13:56:00.003-07:002017-06-04T19:28:42.705-07:00Dr. John Chia and Enterovirus. Old hat? Nope - a key. <br />
Recently, the 12th <a href="http://investinme.org/">Invest in ME</a> conference in London ended. This ME/CFS conference is three days of serious research discussion and presentations. It is one of the best conferences on difficult diseases. The sponsors Richard and Pia Simpson exert an extreme effort to put on this conference, a conference which expands in scope every year. These two individuals are extraordinary people.<br />
<br />
One wonders, with all the comprehensive research at this conference, if Dr. Chia and his Enteroviral research were even mentioned at the Invest in ME conference conversations this year?<br />
<br />
Is it possible that the low level of response to his research will continue indefinitely? Let's hope not.<br />
<br />
Dr. John Chia knows that enteroviruses are a cause of ME/CFS.<br />
<br />
I first met Dr. John Chia at the Invest in ME conference many years ago. Dr. Chia made a presentation on enterovirus and ME/CFS. He has made several other presentation at Invest in ME and I have written about him before, <a href="http://cfspatientadvocate.blogspot.com/2010/02/dr-john-chia-researcher.html">here </a>and <a href="http://cfspatientadvocate.blogspot.com/2014/04/ad-astra-per-aspera-dr-john-chias-ideas.html">here</a> and <a href="http://cfspatientadvocate.blogspot.com/2013/02/hanging-fire-dr-john-chia.html">here</a> and <a href="http://cfspatientadvocate.blogspot.com/2014/04/more-on-enteroviruses-and-mecfs.html">here</a>.<br />
<br />
Recently I came upon the <a href="https://www.nih.gov/sites/default/files/research-training/initiatives/mecfs/rfi-healthcare-professionals-researchers.pdf">NIH RFI </a>request sent out this spring. Various people responded and the publication of responses <a href="https://www.nih.gov/sites/default/files/research-training/initiatives/mecfs/rfi-healthcare-professionals-researchers.pdf">can be found here</a>. Dr. Chia's is the third response down, talking about his subject - enteroviral involvement in ME/CFS. The real question is if anyone - specifically the NIH - will pick up the thread.<br />
<br />
Dr. Chia made a three-hour presentation on Enteroviruses at the IACFS/ME conference in the fall of 2016. In it, he makes the case that he has been making for many years now.<br />
<br />
Dr. Chia keeps working on enteroviruses involvement in ME/CFS. He is undeterred and is committed to continue until there is a solution. In the meantime, Dr. Chia treats patients with oxymatrine. A certain percentage respond. He also uses Epivir in some cases. More recently he recommends dihydroquercitin and specifically Swanson's Russian Rejuvenator. Dihydroquercitin appears to inhibit coxsackie b4 virus and stabilizes mast cells. It has various other activities - anti-inflammatory, neuroprotective, combats oxidative stress - that you can read about online. It suppresses the release of histamine.<br />
<br />
Dr. Chia has no problem with the recent metabolome data coming from Naviaux, seeing it as a step in the process of ME/CFS. He believes that a number of drugs might modulate the cellular function in the brain but eventually the viral replication or related mechanisms will have to be inhibited. This will come with anti-virals against coxsackie B and Echo viruses. It is known that two European companies are working on a anti-viral coxsackie drug, but they keep their work very quiet. The companies working on this have extra motivation now, knowing that their market for this drug is greater than originally thought.<br />
<br />
By sheer chance, my daughter started doing the ARUP coxsackie antibody test in 2005. Only in 2007 did I hear Dr. Chia state the importance of doing this specific test. My daughter's antibodies to CVB4 and CVB3 have been at the top of the range for ten years. To me this means something, as opposed to many other test results, which are indeterminate. I know a lot of people with ME/CFS - and a good number of doctors who try to treat it. To all of them I urge doing the coxsackie antibody test via neutralization at ARUP. Amazingly, I have yet to convince one patient or one doctor to do this test. This in itself says something - and it is not good. It appears that they just do not want to know.<br />
<br />
More can be read on Dr. Chia and enteroviruses on the <a href="http://forums.phoenixrising.me/index.php?threads/enteroviruses-revisted.14478/">Phoenix Rising forum</a> and <a href="http://forums.phoenixrising.me/index.php?threads/have-the-results-of-dr-chias-me-cfs-interferon-treatment-actually-proven-enterovirus-causes-me-cfs.44086/">another one on PR here.</a><br />
<br />
There are a number of interesting responses in the NIH RFI cited above. For instance check out Dr. William Weir's response. It is the second one from the top.<br />
<br />
<br />consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com0tag:blogger.com,1999:blog-4895604594896814289.post-84427297055847182292014-12-31T19:14:00.000-08:002015-01-01T15:15:50.970-08:00This time of year - and Severe ME/CFS<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
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<span style="color: #1f242d; font-family: Times;">It is that time of year again.
Holiday time and the New Year is the saddest season for ME/CFS patients. While
the dance of life goes on for many people, ME/CFS patients feel the heightened
sense of abandonment and despair. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">We need to try to do more to
relieve their suffering. <o:p></o:p></span></div>
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<br /></div>
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<span style="color: #1f242d; font-family: Times;">I have felt for a long time that
the key to the illness – should there be a key – lies with the severely ill.
These patients at ground zero of this illness need to be studied - and studied
in depth. <o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">This is more possible today than
any time prior. There are commercially available tests that could uniformly be
applied to this patient group. I could list some of them, but I will forgo this at this time. And then there are the research tests that would
delve even deeper. <o:p></o:p></span></div>
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<span style="color: #1f242d; font-family: Times;">Please excuse the repetition as I
quote a few items from my previous blog posts.<span style="mso-spacerun: yes;">
</span>As Stravinsky said, some things need repeating. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">“It is my belief that we,
collectively, have to look more closely at the most severely ill ME patients.
It is my belief that they harbor, in their severity, the keys to this illness.
Most doctors do not see the most severely ill. Dr. Kenny De Meirleir, in his trips
into Norwegian homes, treats the very ill. Dr. Paul Cheney and Dr. David Bell also have
occasionally seen the severely ill. Perhaps others have - and hats off to them.
<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">But, by and large, the severe patient is isolated from everyone. The severely ill ME patients cannot get
to a doctor's office. They languish in darkened rooms, cut off from reality,
isolated and often abandoned, and without medical care. It appears that no one
cares a whit about them. It is these patients on whom we have to focus our
attention - both for their sake and for ours. More effort has to be made to
"get in close," although this, in itself, is difficult under even
the best of circumstances.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d;">I know of a number of these
patients. They have the willingness to participate, through testing, in
their own </span><span style="color: #1f242d;">potential</span><span style="color: #1f242d;"> betterment - provided that the severity of their situation is taken
into consideration. Many already have had testing for immune function, NK cell activity,
cytokine disregulation, gut dysbiosis, brain scans and so forth. Consistent
testing needs to be applied to these patients using existing parameters - if
only to set the stage for future possibilities that will soon arise.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">Most people do not want to take a
look in this direction. Most people turn away - including doctors. It is time
to toughen up - and to consider these patients, and what they are going
through. Testing of the moderately ill has not brought clarity.
We need to brace up, take a good look and then move in close. While it is
difficult it is the only decent and humane thing to do.”<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">“Until those at the center of this
illness - those in darkened rooms - are depicted, embraced and understood,
nothing will happen at the government level.<o:p></o:p></span></div>
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<br /></div>
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<span style="color: #1f242d; font-family: Times;">In order to set the tone, videos of
severely ill patients should be presented at the beginning of any government or
private conference on ME/CFS. </span><span style="font-family: Times;"><span style="color: #82552c; mso-bidi-font-family: Times;"><a href="https://vimeo.com/ondemand/22513/24683179" target="_blank">Voices from the Shadows</a></span></span><span style="color: #1f242d; font-family: Times;">, Josh Biggs' and Natalie Boulton's very fine film (or
similar videos), should be mandatory - to set the stage and to get the
participants in the right frame of mind.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">There is clear evidence that the
government has no interest in this. Multiple times they have been given the
opportunity to present visual evidence of the severity of the illness, and they
have said no. The government is content to give a grieving altar to the
moderately ill and leave it at that.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">The very, very ill have big problems.
Everything around them represents a threat to their health. They need to be
protected at every level – protected from doctors, from roofers, from plumbers,
from realtors, from neighbors, from movement, from noise and vibration, from
friends, from family, from hospitals, from water, air, chemicals, mold – from
everything.”<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">“And what about the others - what
about the really sick ones?<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">There is really only one way to
present this illness, and it needs to be done more often. The face of this
illness lies in the presentation of the severely ill patients. This is one of
the real values of </span><span style="font-family: Times;"><span style="color: #37291b; mso-bidi-font-family: Georgia;"><a href="https://www.youtube.com/watch?v=LvweCk44WHs" target="_blank">Laurel's CFSAC video </a></span></span><span style="color: #1f242d; font-family: Times;"><a href="https://www.youtube.com/watch?v=LvweCk44WHs" target="_blank">testimony </a>in October 2009. She did us a very great favor to
make this video, visually and audibly describing her condition. This courageous
and heartrending video that has so much power and dignity. We need to see more
of these kinds of videos - images and pictures of the severely disabled. This
is where the visual information lies - down near the bottom.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">"Walled up:<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">Imagine a patient who cannot stand,
who has extreme fatigue and must live a horizontal life. Imagine a person who
is functionally blind from light sensitivity and eye muscle fatigue and wears a
blinder 24/7. Imagine how this blindness might further limit this person's
ability to move. Imagine this person with sound sensitivity so bad that they cannot tolerate the phone ringing or dogs barking outside. Imagine a person whose skin
is sore and sensitive to the touch. Imagine a person who cannot focus their
thoughts, has short term memory deficit, or can't speak clearly because of
neurological deficits ("brain fog"). Imagine a person who has seizures,
spasms and twitches. Imagine a person who has lost their sense of smell - or
has hypersensitivity to smells. Imagine a person who cannot speak, or cannot
speak above a whisper. Imagine a person with a feeding tube, IV medication, and
oxygen. Imagine living in a world where things coming in and things going out
don't happen. Take a good look. This is ME/CFS at the core. My friends in the
UK call it ME. It is worth noting that all ME/CFS patients are on a continuum,
shifting whimsically up or down the scale over the years.”<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">Incidentally these severe patients
have measurable abnormalities that characterize the illness.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">I have written about the film
Voices from the Shadows here. Allow me to quote one part of this <o:p></o:p></span><span style="color: #1f242d;">review.</span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">“</span><span style="color: #1f242d; font-family: Times;">And yet the
film does focus on "those who do not back away" - the caregivers.
These caregivers are trying valiantly to save their loved ones, but the stress
is in their eyes, in their movements. It is a very difficult position to be in,
<b style="mso-bidi-font-weight: normal;">to chose to move in close</b> and
support the very ill patient. Moments of interchange between the caregiver and
patient are excruciatingly poignant and painful. This illness is terrible for
the patients. It robs them of much of life's normal activities and interaction,
and yet the caregiver, in his or her giving, suffers terribly also - and this
film delivers that message. A properly balanced interaction between caregiver
and patient - something that is extremely difficult to get right - is depicted
with extraordinary sensitivity by these filmmakers.’</span><span style="color: #1f242d; font-family: Times;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">"Natalie Boulton has also done us a
great favor in writing and editing her fine book, <i><a href="http://www.investinme.org/LostVoicesBook/IiME%20Lost%20Voices%20home.htm" target="_blank">Lost Voices</a>, </i>a
gathering or set of stories and pictures of severely ill UK ME patients. The
book was published by </span><span style="font-family: Times;"><span style="color: #37291b; mso-bidi-font-family: Georgia;"><a href="http://investinme.org/" target="_blank">InvestinME </a></span></span><span style="color: #1f242d; font-family: Times;"><a href="http://investinme.org/" target="_blank">i</a>n 2008. It gives the clearest picture currently available of
this illness, and is the most valuable resource for coming to terms with its
reality. Otherwise there are various videos on youtube made by patients, and by
the providers of these very sick patients. Many of the older videos that I viewed
years ago - ones that were quite frightening to me - have disappeared off the
internet. Soon we will have additional contributions in this area, and they
will be welcomed for what they are - clear documents of the core of this ME/CFS
illness.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">This, of course, is not an easy
subject. It is a delicate issue - this severe private illness that takes place
in darkened rooms - and from many points of view. But I think we have to have
the courage to put pictures and videos - with clear explanations - out into the
world in order to show the serious consequences of this illness. This illness
needs a face, a real face.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">I was in the conference hall in
London several years back when Dr. Kenny de Meirleir showed videos of
desperately ill, bed bound patients in Norway. The video was extreme, showing a
patient lying in a bed in a darkened room, with a feeding tube, wearing a
blinder and ear protectors. The sheets were suspended above the patient due to
intolerance of the weight and pain of the sheets. It was a riveting, terrifying
video, an image straight out of Dante. At the same time, Dr. de Meirleir had a
young woman speak about her "walled up" sister, who she had not seen
in four years - even though they lived in the same house. It was easy to sense
that this presentation shocked the audience, an audience consisting of patients
or those familiar with the illness. It was as if Dr. de Meirleir had done
something inappropriate. But for me, it was a revelation, and that moment has
percolated in my mind ever since.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">How can this illness be presented
to the uninformed - doctors, researchers, journalists, friends and families -
in a profound way? I think you have to go "to the core". It is like
going inside of the smashed nuclear reactor and viewing the exposed fuel rods.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">Certainly, at the moment, the face
of this illness has not registered with the public at large, and listing a long
list of symptoms is not going to cut it. I want a video in my hand that depicts
the "very bottom" - a video that I can hand to Dr. Harvey Alter and
say : "Dr. Alter, take a look at this." - and hand it to any number
of people with the same intention. There is a need to provoke people into the
recognition of the true devastation that this illness inflicts on patients -
and caregivers.”<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">Such were some of my comments from
the past. If I ever had a conspicuous idea about this illness it is to study
the severity of it. Hopefully things are about to change in this regard and I
will write more about this soon. <o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">In the meantime, I have five or six
ME/CFS friends who have made substantial improvement in the last few years.
Most had the illness at a moderate to serious level and were disabled in one
way or another, suffering serious consequences to their lives. Each of them
pursued various avenues to betterment and there was no commonality to what
brought them to some betterment - and a couple to substantial betterment. <span style="mso-spacerun: yes;"> </span>No commonality, and yet they have the same
illness. Their diverse treatments included antibiotics, acupuncture, Valtrex,
methylation supplements, uv light therapy, thyroid regulation, dietary changes, Chinese herbs, jin shin jyutsu, ozone therapy - and cannabis.<span style="mso-spacerun: yes;">
</span>Each had to find their own path through trial and error. This is an important bit of information. <o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1f242d; font-family: Times;">Yesterday I read this <a href="http://www.cbsnews.com/news/medical-mystery-genetic-clue-solves-toddlers-debilitating-illness/" target="_blank">article</a>,
which I found of interest.<o:p></o:p></span></div>
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consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com4tag:blogger.com,1999:blog-4895604594896814289.post-61993770197472195602014-04-25T08:58:00.000-07:002014-04-25T11:58:52.236-07:00More on Enteroviruses and ME/CFS<br />
A few recent comments on the history of research into enteroviral involvement in ME/CFS are worth highlighting. These comments come from Dr. Charles Shepherd and from Hip, of the <a href="http://forums.phoenixrising.me/index.php" target="_blank">Phoenix Rising forums. </a>Hip contributes multiple, important observations to the Phoenix Rising forum and his ideas are always insightful.<br />
<br />
From Charles Shepherd:<br />
<br />
"I have now met and listened to Dr. Chia on several occasions and I was at the IACFS/ME conference in San Francisco - where he again presented his findings relating to persisting enteroviral infection. I agree with Tony Komaroff that these findings cannot simply be dismissed and we do need another independent group of virologists to see if they can replicate these findings. I have made these points in my own detailed summary of the conference - which is now being prepared for publication. At present, the balance of evidence (much of which was done in the UK by Professor John Gow and colleagues in Glasgow) relating to persisting enteroviral infection in ME/CFS is against any such link. But I think we should adopt a position of 'the jury is still out' on persistent enteroviral infection in ME/CFS until someone has tried to replicate what is a very thorough and interesting piece of virology research."<br />
<br />
From Hip:<br />
<br />
"Hi Charles Shepherd,<br />
<br />
I believe Professor John Gow primarily looked for enteroviruses in the muscles of ME/CFS patients. However, generally speaking, muscle symptoms such as muscle pain are not that common in ME/CFs, whereas gut and of course especially neurological symptoms (e.g. brain fog, sound sensitivity) are the norm. Thus unless you look for enteroviruses in the areas where the symptoms exist, i.e. gut and nervous system or brain, you may not find much evidence for these viruses. Dr. Chia looked in the gut, and found a strong association between ME/CFS and enterovirus infection; but ideally I think you would want to look in the brain and nervous system (in postmortem studies), because neurological symptoms are really the core of ME/CFS. It is known that when enteroviruses like coxsackie virus B enter the brain, they form a persistent infection of the <a href="http://www.ncbi.nlm.nih.gov/pubmed/24027313" target="_blank">astrocyte cells</a> and the neural <a href="http://www.ncbi.nlm.nih.gov/pubmed/21471247" target="_blank">progenitor cells</a>. So these perhaps are the areas where we should be looking for enteroviruses in ME/CFS. Two brain autopsies on deceased ME/CFS patients did indeed find enterovirus in the brain.<br />
See:<br />
Viral Isolation from Brain in Myalgic Encephalomyelitis (A Case Report) 2001 J. Richardson <a href="http://www.oocities.org/vitamvas/viralfm.html" target="_blank">www.oocities.org/vitamvas/viralfm.html </a><br />
Enterovirus in the Chronic Fatigue Syndrome 1994. McGarry F, Gow J, Behan PQ. <a href="http://www.ncf-net.org/library/enterovirusincfs.htm">www.ncf-net.org/library/enterovirusincfs.htm</a><br />
<br />
Also, it is now known that enteroviruses such as coxsackie virus B form two distinct types of infections in the body: first the normal lytic enterovirus infection, and second the noncytolytic enterovirus infection. The latter resides purely within human cells, and is not easily detected. Nevertheless, Dr. Chia, and other researchers such as Dr. Nora Chapman, suggest these hard to detect noncytolytic enteroviruses may play a significant role in ME/CFS. Thus ME/CFS studies need to search for both lytic and noncytolytic enteroviruses in ME/CFS patients.<br />
<br />
Hi Charles Shepherd,<br />
<br />
Also, if you look at the list of enterovirus studies by British researchers from 1983 to 2001 (which includes Prof. Gow's studies), these all found a pretty strong association between ME/CFS and enteroviruses such as coxsackie virus B. This list of enterovirus studies can be found <a href="http://forums.phoenixrising.me/index.php?threads/m-e-caused-by-enterovirus.27794/page-4#post-437074%E2%80%A8%E2%80%A8" target="_blank">here</a>.<br />
<br />
As far as I can see, there seems to be solid and consistent evidence over several decades for the role of enteroviruses in ME/CFS."<br />
<br />
Thanks again to Hip and Dr. Charles Shepherd<br />
<br />consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com1tag:blogger.com,1999:blog-4895604594896814289.post-65810307360529375342014-04-15T09:28:00.000-07:002014-04-15T16:03:55.701-07:00"ad astra per aspera" - Dr. John Chia's ideas taking hold<br />
<span style="font-size: large;">("ad astra per aspera" - "a rough
road leads to the stars")</span><br />
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Several summaries have emerged of the IACFS/ME
conference, for those who are interested in the details. The first is the
transcription of Dr. Komaroff's summary at the end of the conference. We have <a href="http://www.mecfsforums.com/wiki/Anthony_L._Komaroff,_MD;_Summary_3/23/2014" target="_blank">Patricia Carter of ME/CFS</a> forums to thank for this. Another summary is by Dr. Charles
Lapp. It can be found <a href="http://drlapp.com/news/me-letter-march-2014/" target="_blank">here</a>. </div>
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Several paragraphs in each summary caught my
interest and both deal with a favorite subject of mine: Dr. John Chia and his
research into Enterovirus and ME/CFS.<o:p></o:p></div>
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From Patricia Carter's transcription of Dr.
Komaroff:<o:p></o:p></div>
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"Dr Chia reported again at this meeting, as he
has in the past, the expansion, the latest summary of data from a remarkable
report and a remarkable amount of work, Enterovirus Antigen and nucleic acid
found in biopsy samples from stomach in cases and control subjects. Finding very
marked differences in the frequency of both antigen and nucleic acid in CFS
patients compared with controls. He then also reported that when you took
the biopsy specimens that these tests suggested contained enterovirus and
injected them into mice that, in fact, you found when you sacrificed the
mice, evidence of enteroviral infection, a virus in the mouse, indicating
that this thing lit up looking like it might be an infectious agent of the
biopsy tissue actually produced an infection in another animal. <o:p></o:p></div>
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To me, these results are very impressive, but it's
also depressing to see that, to my knowledge, no academic enterovirologists
have sought to try to reproduce this, not even in bulk, to take the samples
that already have been collected at enormous effort by Dr. Chia and test them
themselves to see if they get the same results that Dr. Chia does. It's a great
shame and I hope it changes." <o:p></o:p></div>
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In fact two of the infected mice died over a weekend, one on a Friday, one on a Monday. "If they do not believe in death, then what do they believe in?" At least one enterovirologist, and perhaps two, have worked with Dr. Chia's samples.</div>
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And then there is this from Dr. Lapp:</div>
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"Dr John Chia is an infectious disease specialist and pathologist from Lomita CA. He and his son contracted CFS/ME and were found to have enterovirus infections in their stomachs (see his article in the <a href="http://jcp.bmj.com/content/early/2007/09/13/jcp.2007.050054.short" target="_blank">Journal of Clinical Pathology</a>, Jan 2009. After treatment with a Chinese herbal called oxymatrine (there is no other known therapy for EV) both have recovered and stayed well. Dr. Chia reported to us on further EV studies from his lab. To demonstrate the infectiousness of EV, Chia injected the lysate (Osterized tissue or homogenate) from 24 EV-positive human stomach biopsies into immune deficient SCID mice. When the mice were later sacrificed, 13 out of 20 were positive for EV in their spleens, but only 1 of 10 control mice were positive. However, Chia could not culture the virus from any of the spleens suggesting that although the infections were transferred, incomplete viruses were formed in the receiving mice. In a second study, Chia obtained pathology specimens from 27 women with CFS/ME who had undergone total hysterectomy or salpingo-oophorectomy for chronic pelvic pain. 24 or 27 specimens stained positive for EV, whereas none of 15 healthy control specimens were positive. Three SCID mice were injected from EV-positive specimens and the mice were sacrificed at either 2 or 5 weeks. Spleens and fallopian tubes stained positive for EV at both 2 and 5 weeks, although spleen stain was less obvious at 5 weeks. Western blot studies of all mouse fallopian tubes demonstrated enteroviral proteins. (Ed. note (Lapp) Dr. Chia is making a strong case for enterovirus as a common trigger for CFS/ME, and these studies imply that the infection is transferable. I found it interesting that chronic pelvic pain was localized to the infected fallopian tube in his patients, and that surgery relieved the pain. Sadly, no one else has taken on the task of confirming Dr. Chia's studies. Also there is no known antiviral therapy for EV - just an ill tolerated herbal preparation. Hopefully someone with Chia's expertise will investigate this further and confirm these important findings!)"</div>
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It has been seven long years since <a href="http://jcp.bmj.com/content/early/2007/09/13/jcp.2007.050054.short" target="_blank">Dr. Chia's important paper</a> of potential enteroviral involvement in ME/CFS. No one has significantly picked up on his study. As the backbone of his work, Dr. Chia has studied and revisited the history of ME especially in the UK. He has personally re-ignited important and forgotten associations. Dr.Chia is not coming out of nowhere on this. </div>
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"We need to declare EV as one of the causes of ME/CFS. It has been 30 years!"</div>
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"Enteroviruses need to be accepted as one of the causes of this illness this year, or else we will wait another ten or more years before a drug will be available for this disease. You need to ask the researchers at Stanford and at the meeting why they are not working on enteroviruses."</div>
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I personally have witnessed several virologists flatten Dr. Chia's work. A prominent virologist (regarding Dr. Chia's work, which I had sent him) gave this blunt assessment: "It's crap". There is evidence that this prominent virologist might have altered his views - and perhaps might be willing to help.<br />
<br />
We need to move on beyond these attitudes and find out what Dr. Chia is finding. Dr. Chia himself says: "I have spent considerable time trying to convince that I am right. Now it is time for others to prove that I am wrong."</div>
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After this IACFS/ME conference it seems that things are turning in a more positive direction for Dr. Chia's stupendous efforts in trying to get at this nasty illness. For those interested, there is more information on <a href="http://quixoticmeblog.blogspot.com/2014/04/dr-c-is-frustratedunderstandably.html" target="_blank">Patrick W. Calvins' Quixotic blog. </a></div>
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And then there is the recent very exciting news regarding new drugs for Hep C. One drug, <a href="http://online.wsj.com/article/PR-CO-20131206-909494.html" target="_blank">Sovaldi</a>, from Gilead was approved by the FDA and is both well tolerated and extremely successful in treating Hep C. Two more amazing Hep C drugs are in the pipeline, one from Abbot and another from Bristol-Myers. There is some hope that one of these drugs might be effective against enteroviruses. "If this proves true, it will make all the difference in the world".</div>
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So there is some urgency here, and some real hope - but only if Dr. Chia's work is followed up on. </div>
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<!--EndFragment--><br />consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com6tag:blogger.com,1999:blog-4895604594896814289.post-19369281955757603222014-03-30T12:19:00.003-07:002014-04-01T03:43:22.073-07:00Dr. Joseph Brewer and Mycotoxins, an update<br />
Dr. Joseph Brewer of Kansas City was one of the physicians who did not attend the recent IACFS/ME conference. Dr. Brewer is an infectious disease doctor who has been working with AIDS, Lyme and ME/CFS patients for a very long time. Over the years he has become interested in various treatments for ME/CFS - and has been open to thinking about associated subjects such as Mitochondrial impairment (or down regulation) or Mycotoxin involvement - to describe two of his recent interests.<br />
<br />
About two years ago now, Dr. Brewer stumbled upon Mycotoxins and their potential involvement in ME/CFS. Dr. Brewer and his associates, Dr. Thrasher and Dr. Hooper, published their first paper on Mycotoxins and ME/CFS in April 2013. It can be view <a href="http://www.mdpi.com/2072-6651/5/4/605" target="_blank">here</a>. In this study, Dr. Brewer reveals finding 93% (104 of 112) of his patients positive for one of three mycotoxins (there are hundreds of mycotoxins) through a test at <a href="http://www.realtimelab.com/" target="_blank">Real Time Labs</a> in Carrollton TX. 55 controls yielded no positives.<br />
<br />
The Real Time Labs test is a urine sample for Ochratoxin A, Aflatoxin and Trichothecenes (MT). (Real time labs will soon have a blood test for gliotoxin, a mycotoxin associated with Aspergillus.) The initial test costs about $700 and appears to be partially reimbursable. On Dr. Brewer's initial study Ochratoxin A showed up the most, although a good number of patients had more than one and some had "the trifecta" - of all three. Dr. Brewer feels that mycotoxins are not good for patients to have in their bodies - and that they represent a major factor in their ME/CFS illness.<br />
<br />
Dr. Brewer reports that these mycotoxins impair mitochondria function and interfere with cell membranes. Loss of mitochondrial function can cause detoxification problems with other toxins. Poor detoxification might have something to do with clinical response.<br />
<br />
Dr. Brewer's previous experience with mold or mycotoxins was non-existent. He is an infectious disease doctor who looks for bugs and tries to kill them. In no way can Dr. Brewer be described as a "mold doctor".<br />
<br />
In December 2013, Dr. Brewer, Thrasher and Hooper published a second paper on Mycotoxins and their connection to chronic illness - <a href="http://www.mdpi.com/2072-6651/6/1/66" target="_blank">"Chronic Illness Associated with Mold and Mycotoxins - Is Naso-Sinus Fungal Biofilm the culprit?"</a> In this study they laid out their case based on examination of existing literature, citing case studies.<br />
<br />
Faced with this high percentage of his patients with potential mycotoxin involvement, Dr. Brewer was both surprised and perplexed. He began treating some of his patients with heavy duty anti-fungal infusions. In time, again through researching the literature, Dr. Brewer concluded that the most likely reservoir for the mycotoxins was the sinuses. This involved a bit of guesswork. It is Dr. Brewer's thesis that these mycotoxins get into the body and colonize in the sinus. Once colonized and protected by a biofilm, the body cannot get at them and they just stay there forever. It is his belief that they have to be rooted out. He finds in his patients that the exposure can be from the distant past, up to 20 years ago. From Dr. Brewer's point of view, focusing on the sinuses in no way excludes other reservoirs harboring the mycotoxins - the gut, stomach and lung.<br />
<br />
Dr. Brewer began treating his patients with nasal Ampho B - and he started getting results. Dr. Brewer works with a nasal drug delivery company called <a href="http://www.aslrx.com/" target="_blank">ASL pharmacy</a>. They have a nasal delivery system called Nasa-touch which atomizes the medicinals. In time Dr. Brewer added another nasal drug to bust up biofilms that he believes are harboring the mycotoxins. This is nasal EDTA in combination with surfactant, an ingredient in Johnson's Baby Shampoo.<br />
<br />
Two side effects of this treatment are noted. One is that the Ampho B can cause nasal irritation and even mild nosebleeds in a few cases. The second is that the treatment often causes a strong herx reaction as the mycotoxins are exposed and the drug kills them. In both situations, Dr. Brewer moderates or cuts back the treatment and all cases have been manageable.<br />
<br />
Dr. Brewer has been surprised, astonished really, by the results of treatment. In his first 100 patients treated, 70% showed improvement, including six whose symptoms completely resolved, including all symptoms of their larger illness.<br />
<br />
With treatment, the successful patient's urine Ochratoxin A will go down to zero in a matter of some months. The Trichothecenes (MT) takes longer but it too will diminish with treatment.<br />
<br />
Three quarters of the patients treated had preexisitng sympotms of sinus problems. One quarter did not. Both segments showed equal improvement.<br />
<br />
Dr Brewer has continued testing and treating more patients. He has now tested 350 patients, 325 of whom are positive for one or more mycotoxins. More Trichothecenes (MT) have been showing up recently in his patient population. He is now treating up to 200 patients and I believe another paper will be coming out soon. Dr. Brewer reports that those patients who have fully resolved and ended treatment tend to relapse and have to go back on treatment.<br />
<br />
Dr. Brewer's absence at the recent IACFS/ME meeting has already been noted. How could this happen? How could the emergence of a target for treatment not be acknowledged at this conference? This is all the more unusual in that Dr. Brewer published his first paper a year ago and then gave <a href="http://cfspatientadvocate.blogspot.com/2013/10/normal-0-false-false-false-en-us-ja-x.html" target="_blank">an exciting presentation </a>at the Lyme conference in October 2013. In this situation, there seems to be a target, a treatment that is relatively benign - and Dr. Brewer is getting results. Doesn't this warrant more attention? Wouldn't it be interesting to find out what is happening here?<br />
<br />
Of course, in spite of this, there was quite a lot of discussion of the subject of Mycoyoxins in the hallways of the IACFS/ME conference.<br />
<br />
Regarding mycotoxins and ME/CFS we have to ask some questions. The most obvious one concerns the validity of the testing at Real Time labs. At the moment this seems the only lab that does mycotoxin testing. Dr. Ritchie Shoemaker has not been overly excited with this test, or with the idea of nasal colonized mycotoxins. If it isn't mycotoxins that are being knocked out, what is the activity of Dr. Brewer's treatment? A 70% response rate of over 100 patients is impressive. Dr. Brewer himself says that he has never seen such success with a single treatment.<br />
<br />
Meanwhile other physicians are beginning to test their patients. A West Coast physicians group has tested over 100 ME/CFS patients for mycotoxins at Real Time labs - and are getting the same high positive results. Preliminary reports on Dr. Cheney's testing of his patients also indicates a high positive response, especially for Trichothecenes. Even Dr. Ian Lipkin indicated that mycotoxins were dangerous, and warranted looking at in ME/CFS. Other physicians, Dr. Chia, and Dr. Enlander, are aware of Dr. Brewer's work and have been encouraged to test their patients.<br />
<br />consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com26tag:blogger.com,1999:blog-4895604594896814289.post-77363774879118728982014-03-25T22:38:00.000-07:002014-03-26T12:53:32.127-07:00IACFS/ME - and then Mission Delores<div class="separator" style="clear: both; text-align: center;">
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At the end of this year's IACFS/ME meeting I headed out on foot to the Mission District and to visit an old favorite: Mission Delores. Over the years, I have come here often, as well as many of the other missions up and down the coast of California. (The mission system was sort of the CDC of the late 18th and early 19th centuries)<br />
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Mission Delores and its cemetery are featured in a mistily mysterious scene in Hitchcock's "Vertigo" - one of my favorite films. I am going to watch it again when I get home.<br />
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The day was sunny and warm and the sweet smell of dope wafted through the air in the Mission District - as the locals were seeking their medicinal or medical improvements. Crowds of people flocked to a local park to see a concert of the Rollin' Snows or the Scoobie Doos.<br />
<br />
The IACFS/ME conference ended Sunday afternoon. The IACFS/ME conference was four, very long days, running March 20-23. Always I find this conference too long - and too broad in its reach. I suppose I understand why the planners do this, as they have a large constituency to please or honor - but they include so many items that I consider to be auxiliary. To me parts of this conference are like watching a bad movie over and over - or falling to one's death off a very tall building.<br />
<br />
I come to these conferences as an observer - to watch and listen. I don't think of myself as a participant, but more of an outsider or outlier. I am in the process of my own illness discovery. I figure that I represent my daughter, who cannot be here.<br />
<br />
Over time I have learned to be very selective in going to lectures. This time I think that I went to five. I am happier just looking at the poster papers, and talking to old and new friends. This is my fourth IACFS/ME, and it functions as a touchstone of sorts. I just wish it were more focused. I have learned what a focused conference can be. I saw it at the Stanford Conference, I see it at Mt. Sinai, and I see it every year at the Invest in ME conference in London.<br />
<br />
Am I giving a mixed message here? Yes I am giving a mixed message.<br />
<br />
Dr. John Chia delivered two important talks. It has been seven years since Dr. Chia's <a href="http://www.enterovirusfoundation.org/pdfs/research/CFS-is-associated-with-CEI-of-stomach.pdf" target="_blank">pivotal paper </a>was published showing enterovirus protein found in stomach tissue of ME/CFS patients. No one has followed up with this paper. It just sits there with its weight of ME history leaning on it. Meanwhile Dr. Chia continues his superb research - on his own, in virtual isolation. Dr. Chia gave two talks in a section on "Virology Research", chaired by Dr. Jose Montoya. (I hope that Dr. Montoya was listening.) The first talk was entitled "Chronic pelvic pain (CPP) in patients with ME/CFS is associated with chronic enterovirus infection of ovarian tubes" and the second was entitled "Pathogenesis of chronic enterovirus infection in ME/CFS - in vitro and in vivo studies of infected stomach tissue". Regarding the second study, "Of 24 mice injected with VP1+, and RNA+ stomach biopsies, 2 died in two weeks and13/20 (66%) spleen specimens tested positive for VP1 where 1 of 10 controls tested positive for VP1 by immunoperoxidase staining."<br />
<br />
("If they do not believe in death, then what do they believe in?"). Of course there is the possibility that these mice died of sneezing fits - or committed suicide.<br />
<br />
There was considerable interest during the question period and Dr. Chia answered a host of questions. He also made a <b>hard-nosed </b>presentation, and defense, of his research over the years, stating that "I have spent considerable time trying to convince people that I am right. Now it is time for others to prove that I am wrong". Perhaps soon we will finally be able to answer this question, whether Dr. Chia is right or wrong. I am betting on his being right.<br />
<br />
Dr. Maureen Hanson's team gave a talk, "Plasma cytokines in ME/CFS patients and controls before and after a cardiopulmonary exercise test." Dr. Sonya Marshall-Gradisnik's team gave a presentation on NK cells. There has been a string of <a href="http://cfspatientadvocate.blogspot.com/2013/09/blues-skies-in-mn-nk-cell-function.html" target="_blank">exciting research</a> coming out of this lab. Dr. Gradisnik will also be making a presentation in May at the <a href="http://www.investinme.eu/agenda.html" target="_blank">Invest in ME </a>conference.<br />
<br />
It seemed a great oversight that <a href="http://cfspatientadvocate.blogspot.com/2014/01/dr-carmen-scheibenbogen-berlin-charite.html" target="_blank">Dr. Carmen Scheibenbogen </a>was not giving a talk or a poster paper. I don't think she was even here. I could say the same about other UK or European researchers. Nothing was presented or mentioned about Dr. Joseph Brewer's recent work in mycotoxins. This seemed a slight oversight. Dr. Brewer made a <a href="http://cfspatientadvocate.blogspot.com/2013/10/normal-0-false-false-false-en-us-ja-x.html" target="_blank">recent presentation</a> at the Lyme conference in October and will follow up at the next ILADS conference. So someone besides myself must know of his existence?<br />
<br />
Where were research concerns involving gut ecology, the metabolome, mitochondria, lipid membranes (Yes, it was great to see Dr. Garth Nicholson's poster paper), mycotoxins and a host of important subjects? What world do these people live in? What illness are they studying?<br />
<br />
The strength of this conference lies in its poster papers. This year there were several exciting presentations. I took note of Dr. Maureen Hanson's gut biome study in ME/CFS. Dr. Hanson will be giving a talk at the <a href="http://www.investinme.org/IIME-Newslet-1309-02%20Conf%20Events14.htm" target="_blank">Invest in ME conference </a>this May. She will be able to trade notes with <a href="http://cfspatientadvocate.blogspot.com/2013/06/professor-simon-carding-phd.html" target="_blank">Dr. Simon Carding</a>, who is also working on a gut biome study in ME/CFS. Dr. Hanson reminded me that her colleague, <a href="https://micro.cornell.edu/people/ruth-ley" target="_blank">Dr. Ruth Ley</a>, works mostly in the gut biome arena. Incidentally, there seems to be a percolating effort to have ME/CFS patients do their biome study through <a href="http://ubiome.com/" target="_blank">Ubiome</a>. The objective would be to publish their own biome study. Is this a good idea or what? - and it all sounds vaguely<a href="http://cfspatientadvocate.blogspot.com/2013/02/citizen-scientists.html" target="_blank"> familiar</a>.<br />
<br />
There was another study out of Griffith University of the team of Dr. Sonya Marshall Gradisnik. Nancy Klimas and her group had an entire host of poster papers. I hope these poster papers become readily available.<br />
<br />
The most interesting poster papers were two by Dr. Paul Cheney. Dr. Cheney has always contributed one or two important poster papers. One yearns for Dr. Cheney to be given a chunk of time to make a full presentation of his ideas. Dr. Cheney does best in three-hour slots of time, so he could have a morning session, a break for him to rest for a half-hour (but does he need it?), and then an afternoon session. This could go on for two or three days. And then maybe we could have a comprehensive conversation of what might be happening in this illness. But, of course, this is not going to happen. Instead we have to content ourselves with Dr. Cheney's self-published studies, and with Dr. Cheney's riveting explanations in front of his poster paper. He gives it willingly and repeatedly.<br />
<br />
Asked what he does for his patients, Dr. Cheney says that "he stabilizes them".<br />
<br />
I witnessed a few snippy engagements and comments, which are always interesting to me - and which I will keep to myself. I watched old adversaries be cordial and even respectful to each other.<br />
<br />
The conference awards dinner had an especially good feeling to it. Nancy Klimas got a top award, which she certainly deserves. Dan Peterson gave the Keynote Address and took us on a stroll down memory lane. He described the history of IACFS/ME meetings, in the process recognizing many individuals in the audience, including Hillary Johnson, <a href="http://www.amazon.ca/My-Mother-Ruth-Hillary-Johnson/dp/0312267630" target="_blank">the gifted writer</a>. Dr. Peterson showed a short video with 1990's video snippets of the early heroes in this struggle - Komaroff, Cheney, Bell, Klimas and Peterson himself. It was a hoot to see Nancy Klimas as a young clinician/researcher. This video was a lot of fun. Dr. Peterson has a special skill, either natural or developed, of getting the flow going in a positiive direction.<br />
<br />
I was surprised, really surprised - and pleasantly surprised - to see Pia and Richard Simpson of Invest in ME receive an award. Never were there two people who have less interest in awards. Instead, they are interested in science - and money to fuel research. So if you have extra money, after giving to John Chia's<a href="http://www.evmedresearch.com/" target="_blank"> EV Med Research</a>, write a big check to Pia and Richard Simpson and <a href="http://investinme.org/" target="_blank">Invest in ME</a>.<br />
<br />
Now that Richard and Pia have been recognized by IACFS/ME for their stupendous efforts, maybe the steering committee of the IACFS/ME group can select a group of "Important People" to actually make the journey to the upcoming Invest in ME conference - and thus learn a bit about how to organize a meaningful conference.<br />
<br />
One thing that always, always irritates me about this IACFS/ME conference is the lack of attention to the severely ill. In fact, I have trouble connecting the severity of my daughter's illness with <b>anything</b> that happens at this conference. I do not think that most of the people who attend this conference have the slightest clue as to the true nature of this illness. They look at the half-sick, always at peak times, and draw their conclusions - if they only did a little more exercise.<br />
<br />
And it is my belief that they do not want to know. I have observed the displeasure incurred by Dr. Kenny De Meirleir at an Invest in ME conference for presenting videos of very seriously ill patients from Norway, and for the testimony of a young woman who lived in the same house with a severely ill sister and had not seen her sister for four years. And then there is the whole anxiety about showing <a href="http://The day was sunny and warm and the sweet smell of dope wafted through the air in the Mission District - as the locals were seeking their medicinal or medical improvements. Crowds of people flock to a local park to see a concert of the Rollin' Snows or the Scoobie Doos. The IACFS/ME conference ended Sunday afternoon. The IACFS/ME conference was four, very long days, running March 20-23. Always I find this conference too long - and too broad in its reach. I suppose I understand why the planners do this, as they have a large constituency to please or honor - but they include so many items that I consider to be auxiliary. To me parts of this conference are like watching a bad movie over and over - or falling to one's death off a very tall building. I come to these conferences as an observer - to watch and listen. I don't think of myself as a participant, but more of an outsider or outlier. I am in the process of my own illness discovery. I figure that I represent my daughter, who cannot be here. Over time I have learned to be very selective in going to lectures. This time I think that I went to five. I am happier just looking at the poster papers, and talking to old and new friends. This is my fourth AICFS/ME, and it functions as a touchstone of sorts. I just wish it is more focused. I have learned what a focused conference can be. I saw it at the Stanford Conference, I see it at Mt. Sinai, and I see it every year at Invest in ME conference in London. Am I giving a mixed message here? Yes I am giving a mixed message. Dr. John Chia delivered two important talks. It has been seven years since Dr.Chia's pivotal paper was published showing enterovirus protein found in stomach tissue of ME/CFS patients. No one has followed up with this paper. It just sits there with it's weight of ME history leaning on it. Meanwhile Dr. Chia continues his superb research - on his own, in virtual isolation. Dr. Chia gave two talks in a section on "Virology Research", chaired by Dr. Jose Montoya. (I hope that Dr. Montoya was listening.) The first talk was entitled "Chronic pelvic pain (CPP) in patients with ME/CFS is associated with chronic enterovirus infection of ovarian tubes" and the second entitled, "Pathogenesis of chronic enterovirus infection in ME/CFS - in vitro and in vivo studies of infected stomach tissue". Regarding the second study, "Of 24 mice injected with VP1+, and RNA+ stomach biopsies, 2 died in two weeks and13/20 (66%) spleen specimens tested positive for VP1 where 1 of 10 controls tested positive for VP1 by immunoperoxidase staining. ("If they do not believe in death, then what do they believe in?"). Of course there is the possibility that these mice died of sneezing fits - or committed suicide. The was considerable interest during the question period and Dr. Chia answered a host of question. He also made a hard-nosed presentation, and defense, of his research over the years, stating that "I have spent considerable time trying to convince people that I am right. Now it is time for others to prove that I am wrong". Perhaps soon we will finally be able to answer this question whether Dr. Chia is right or wrong. I am betting on him being right. Dr. Maureen Hanson's team gave a talk, "Plasma cytokines in ME/CFS patients and controls before and after a cardiopulmonary exercise test" Dr. Sonya Marshall-Gradisnik's team gave a presentation on NK cells. There has been a string of exciting research coming out of this lab. Dr. Gradisnik will also be making a presentation in May at the Invest in ME conference. It seemed a great oversight that Dr. Carmen Scheibenbogen was not giving a talk or a poster paper. I don't think she was even here. I could say the same about other UK or European researchers. Nothing was presented or mentioned about Dr. Joseph Brewer's recent work in mycotoxins. This seemed a slight oversight. Dr. Brewer made a recent presentation at the Lyme conference in October and will follow up at the next ILADS conference. So someone besides me must know of his existence? Where were research concerns involving gut ecology, the metabolome, mitochondria, lipid membranes (Yes, it was great to see Dr. Garth Nicholson's poster paper), mycotoxins and a host of important subjects? What world do these people live in? What illness are they studying? The strength of this conference lies in its poster papers. This year there were several exciting presentations. I took note of Dr. Maureen Hanson's gut biome study in ME/CFS. Dr. Hanson will be giving a talk at the Invest in ME conference this May. She will be able to trade notes with Dr. Simon Carding, who is also working on a gut biome study in ME/CFS. Dr. Hanson reminded me that her colleague, Dr. Ruth Ley, works mostly in the gut biome arena. Incidentally there seems to be a percolating effort to have ME/CFS patients do their biome study through Ubiome. The objective would be to publish their own biome study. Is this a good idea or what? - and it all sounds vaguely familiar. There was another study out of Griffith University of the team of Dr. Sonya Marshall Gradisnik. Nancy Klimas and her group had an entire host of poster papers. I hope these poster papers become readily available. The most interesting poster papers were two by Dr. Paul Cheney. Dr. Cheney has always contributed one or two important poster papers. One yearns for Dr. Cheney to be given a chunk of time to make a full presentation of his ideas. Dr. Cheney does best in three hours chunks of time, so he could have a morning session, a break for him to rest for a half-hour (but does he need it?), and then an afternoon session. This could go on for two or three days. And then maybe we could have a comprehensive conversation of what might be happening in this illness. But, of course, this in not going to happen. Instead we have to content ourselves with Dr. Cheney's self-published studies, and with Dr. Cheney's riveting explanations in front of his poster paper. He gives it willingly and repeatedly. Asked what he does for his patients, Dr.Cheney says that "he stabilizes them". I witnessed a few snippy engagements and comments, which are always interesting to me - and which I will keep to myself. I watched old adversaries be cordial, and even respectful to each other. The conference awards dinner had an especially good feeling to it. Nancy Klimas got a top award, which she certainly deserves. Dan Peterson gave the Keynote Address and took us on a stroll down memory lane. He described the history of AICFS/ME meetings, in the process recognizing many individuals in the audience, including Hillary Johnson, the gifted writer. Dr. Peterson showed a short video with 1990's video snippets of the early heroes in this struggle - Komaroff, Cheney, Bell, Klimas and Peterson himself. It was a hoot to see Nancy Klimas as a young clinician/researcher. This video was a lot of fun. Dr. Peterson has a special skill, either natural or developed, of getting the flow going in a positiive direction. I was surprised, really surprised - and pleasantly surprised - to see Pia and Richard Simpson of Invest in ME receive an award. Never were there two people who have less interest in awards. Instead, they are interested in science - and money to fuel research. So if you have extra money, after giving to John Chia's Enterovirus Foundation, write a big check to Pia and Richard Simpson and Invest in ME. Now that Richard and Pia have been recognized by IACFS/ME for their stupendous achievements, maybe the steering committee of the IACFS/ME group can select a group of "Important People" to actually make the journey to the upcoming Invest in ME conference - and thus learn a bit about how to organize a meaningful conference. One thing that always, always irritates me about this IACFS/ME conference is the lack of attention to the severely ill. In fact, I have trouble connecting the severity of my daughter's illness with anything that happens at this conference. I do not think that most of the people who attend this conference have the slightest clue as to the true nature of this illness. They look at the half-sick, always at peak times, and draw their conclusions - if they only did a little more exercise. And it is my belief that they do not want to know. I have observed the displeasure incurred by Dr. Kenny De Meirleir at an Invest in ME conference for presenting videos of very seriously ill patients from Norway, and for the testimony of a young woman who lived in the same house with a severely ill sister and had not seen her sister for four years. And then there is the whole anxiety about showing Voices from the Shadows. It is a very profound and great video, but it is seen as a downer. Well, this illness is a downer. There is something so frightening about the core of this illness - from which almost everyone turns away. A little of this "ground zero"can be seen in Natalie Bouton's and Josh extraordinary film, Voices from the Shadows. Dr. Montoya has enough sense to show it at the Stanford Conference. (Dr. Montoya understands, he has learned this.) These totally isolated human beings hold the key - or a key - to the essential nature of this strange and devastating illness. Why are they not studied? Why does everyone turn away? Can we move forward if we are a bunch of cowards? If one is careful, blood, urine, saliva and feces can be removed from these patients (in some cases). If one wants to know what tests to do, I and others can tell you. The efforts here at the conference and elsewhere to engage or embrace the severe ME patient is pathetic - really pathetic - and this means something. Maybe this is all an age-related problem? Maybe I am just unable to see all the connecting parts at this conference and put them together? I will have to ask others if this is the problem. In the meantime, I am in a hurry. I am not interested in the one-hundred year fix. I am less interested in stasis and more interested in dynamism, as reflected perhaps in what Dr. Skip Pridgen announced yesterday. Was Dr. Pridgen at this conference? A number of clinicians do not go to this conference - Dr Eric Gordon, Dr. Kenny De Meirleir, Dr. Ritchie Shoemaker, Dr Derek Enlander, and Dr. Joseph Brewer. One has to ask why?" target="_blank">Voices from the Shadows</a>. It is a very profound and great video, but it is seen as a downer. Well, this illness is a downer.<br />
<br />
There is something so frightening about the core of this illness - from which almost everyone turns away. A little of this "ground zero"can be seen in Natalie Boulton's and Josh Bigg's extraordinary film. Dr. Montoya had the wisdom, the courage to show "Voices" at the Stanford Conference. (Dr. Montoya understands, he has learned this.) These totally isolated human beings hold the key - or a key - to the essential nature of this strange and devastating illness. Why are they not studied? Why does everyone turn away? Can we move forward if we are a bunch of cowards? If one is careful, blood, urine, saliva and feces can be removed from these patients (in some cases). If one wants to know what tests to do, I and others can tell you.<br />
<br />
The efforts here at the conference and elsewhere to engage or embrace the severe ME patient is pathetic - really pathetic - <b>and this means something</b>.<br />
<br />
Maybe this is all an age-related problem? Maybe I am just unable to see all the connecting parts at this conference and put them together? I will have to ask others, back in NY, like Jay Spero, if this is the problem, if this is my problem. In the meantime, I am in a hurry. I am not interested in the one-hundred year fix. I am less interested in stasis and more interested in dynamism, as reflected perhaps in <a href="http://www.tuscaloosanews.com/article/20140322/NEWS/140329927" target="_blank">what Dr. Skip Pridgen</a> announced yesterday. Was Dr. Pridgen at this conference?<br />
<br />
A number of serious clinicians did not go to this conference - Dr Eric Gordon, Dr. Kenny De Meirleir, Dr. Ritchie Shoemaker, Dr Derek Enlander, and Dr. Joseph Brewer. One has to ask why?<br />
<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/bDwPJ5IaJ2g" width="420"></iframe><br />
<br />
<br />consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com12tag:blogger.com,1999:blog-4895604594896814289.post-51602536527688203702013-11-23T12:22:00.000-08:002014-01-22T19:49:33.686-08:00Mt. Sinai ME/CFS conference – November 20, 2013<!--[if gte mso 9]><xml>
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The second conference at the Mt. Sinai ME/CFS Center was
held on Wednesday, November 20, 2013. (The first conference was two years ago.) This
year’s conference was an upbeat, almost exuberant affair, a set of fine lectures
capped by a question and answer period. Dr. Derek Enlander organized the
conference and presided over it with his usual charming and respectful guidance.
<o:p></o:p></div>
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Various people, patients mostly, spoke positively to me of “the focus" of the conference and of the variety of information that it
presented. Of course the packed room included many of Dr. Enlander’s patients -
but there were also patients of Dr. Peterson and, I presume, of Dr. Klimas. One
had the feeling that a number of the attendees had not previously attended a conference like this. At the end of the day it seemed as though many people did not want to
leave. <o:p></o:p></div>
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A number of factors coalesced in this particular situation. Dr.
Enlander, the sponsor and originator of this conference (aided mightily by Dwight
Merriman, a major donor), is on the faculty of Mt. Sinai. This important medical
center in NYC promotes the Mt. Sinai ME/CFS Center, which, in turn, is a huge
platform upon which to operate a conference venue and to project information about
this illness ME/CFS. <o:p></o:p></div>
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The speakers, limited to five, included clinicians and
researchers. <o:p></o:p></div>
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The first speaker, perhaps the most dazzling (in the general
sense), was Dr. Eric Schadt. If you want to be amazed, <a href="http://cfspatientadvocate.blogspot.com/2011/11/mt-sinai-mecfs-conference-dr-eric.html" target="_blank">check out this talk</a> from
the last conference, recorded by my son <a href="http://www.cgap.org/photos-videos" target="_blank">Peter Cairns</a>. Dr. Schadt has big plans
for data assembly and manipulation. He works on various projects with various
collaborators, all at the same time. Dr. Schadt, always dressed informally in
his own private uniform, seems to be in a hurry. One wonders how much he knows
about ME/CFS - and the feeling that I get is that he applies a schema from an allied
chronic illness to ME/CFS. Nevertheless, he laid out <a href="http://www.kdd.org/kdd2013/wp-content/uploads/2013/02/Eric-Schadt-KDD-2013-IPE.pdf" target="_blank">various immensely complicated networks of disease,</a> explaining the complexities and “perturbations”
(a great word) along the way. It was all quite exciting. One wonders how much
he works on our illness - and the big question is, how can we get him to do more
work on ME/CFS? He seems propelled in a direction that would be extremely helpful.
Certainly he is not lacking in enthusiasm, and is brimming with confidence. <o:p></o:p></div>
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Of particular note was his work with a technical
collaborator, Dr. Joel Dudley, to find a drug for an existing illness (IBD),
using their computational techniques. Through their elaborate process Joel
Dudley identified Topiremate, an anti-seizure drug, to treat IBD in rats. No one
previously had come close to thinking of using this drug for IBD. In another
instance a previously unassociated tri-cyclite drug was found to be effective
in a certain lung cancer with the results being published in Cancer Discovery.<o:p></o:p></div>
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The implication is that such a drug discovery process could
be applied to ME/CFS. My suggestion would be to have Dr. Schadt and Dr. Dudley work
on a drug-targeting project for ME/CFS, something that might be both quick and specific. For
instance, imagine the possibilities if Dr. Schadt’s technology could interrogate
particular cell lines from a tightly constructed cohort of ME/CFS patients. <o:p></o:p></div>
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Next up was Dr. Judy Mikovits, who gave another of her
amazing “outside of the box” lectures. It was also a surprising lecture, at
least to me, who was not expecting her to touch on this subject. But this is a wonderful thing about this
researcher – she goes where she wants to go and always with the patients in
mind. The reader might remember that Dr. Mikovits was jailed two years ago as
she prepared to come to NY to give a presentation to the first Mt Sinai ME/CFS conference. At that time a great pall descended on this well-attended
conference, as most conference attendees reacted with deep sadness to the very astonishing strangeness of the jailing of a researcher. At least
for this second Mt. Sinai conference day, many participants were pleased to see
Dr. Mikovits speak – and it was a triumph, another masterstroke of Dr.
Enlander. In fact, many of the attendees had come exclusively to hear Dr.
Mikovits’ talk. I was among them. <o:p></o:p></div>
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Dr. Mikovits, without a job and without money, has continued
over the past several years to attend professional conferences (cancer, GcMAF, mitochondria, lipid, lyme, ME/CFS) and to unleash
her immense curiosity in the direction of this illness. She makes unusual,
dynamic and wide ranging observations. We need to have more minds like hers at
work towards our betterment. <o:p></o:p></div>
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Speaking of curious and fine minds, it was just a year ago
that my friend Rich van Konynenburg died.
He gave a fine presentation at the last Mt. Sinai conference and his
presence today was and always will be sorely missed. Two years ago, Dr. Enlander showed his
stripes by inviting Rich to give his first, or one of his first, presentations
at a major conference. For years, I had observed Rich get marginalized in
various situations –and his important ideas relegated to the periphery of
conferences - but he always persevered. He was a wonderfully gifted and
intelligent man, and when I think of his absence I want to weep. <o:p></o:p></div>
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Dr. Mikovits chose this moment to revisit an old topic, a
topic that for all intents and purposes was seen as having been put to
bed. Dr. Mikovits’ lecture was an update
on events since the Lipkin paper on XMRV. In today’s lecture, Dr. Mikovits
presented various papers, some older, some newer that – and in a straight-line
fashion - strung together the case that allowed the door to be reopened on a retroviral fingerprint in this illness. It was quite a talk, adjusted to the
audience level, but still difficult to absorb. <o:p></o:p></div>
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Towards the end, Dr. Mikovits touched briefly on one of her
recent investigations - aberrant mitochondrial
workings at the genetic level. She is investigating genetic testing for
indications of secondary mitochondrial dysfunction that has shown up in a few
ME/CFS or ME-like patients. <a href="http://courtagen.com/" target="_blank">Courtagen</a> is the company that does this testing.
This test might very well identify an important part of this illness - with the possibility of immediate treatment. The medical director of Courtegan is <a href="http://www.courtagen.com/company-executiveteam.htm#rick_boles_cmo" target="_blank">Dr. Richard Boles,</a> whom I had heard about several years ago from <a href="http://cfspatientadvocate.blogspot.com/2013/10/normal-0-false-false-false-en-us-ja-x.html" target="_blank">Dr. Joseph Brewer</a>. Dr.
Boles is an innovator. The hope is to
form a collaboration with Courtagen, where they would run a small trial on severe
ME/CFS patients. <o:p></o:p></div>
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To me, Dr. Mikovits has the most “out of the box” thought
process in this illness world. In order
to move this along, I think she needs to have more input into future conferences. Like Rich van Konynenburg, she has “a feel
for this illness”, much of it springing from her work in cancer. <o:p></o:p></div>
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Dr. Mikovits and Dr. Schadt should have the opportunity to sit down for extended talks. Together, with the help of others, they might be able to crack a part of this illness. </div>
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By lunchtime, we had had two lectures – the amazing and the
surprising. What could be a better start?<o:p></o:p></div>
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The remarkable Hillary Johnson, author of <a href="http://www.amazon.com/s/ref=nb_sb_noss_1?url=search-alias%3Dstripbooks&field-keywords=hillary+johnson" target="_blank">"My Mother Ruth"</a>,
came to me in the middle of the conference and said that it reminded her of the
<a href="http://investinme.org/" target="_blank">Invest in ME</a> conference in the UK, both in its ambience and its
seriousness. Hillary was spot on. The
Invest in ME conference is patient driven, which almost guarantees intensity
and focus. These UK folks, primarily Richard and Pia Simpson, make things happen,
without all the attendant crap of an ME/CFS Industry conference. If one wants
to run an effective, hard-hitting conference, I would advise following the
Invest in ME model. <o:p></o:p></div>
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Dr. Derek Enlander has done this. Perhaps it is inadvertent - but this Mt.
Sinai conference had the same combination of clarity, variety, limited bullshit
and consolidation of different aspects of research and treatment. Could the conference have been improved? -
Yes, it could, but it was an amazing effort as a second conference - and this
bodes well for any such future endeavors. <o:p></o:p></div>
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The lectures after lunch were directed towards clinical
practice. <o:p></o:p></div>
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Dr. Dan Peterson gave the first presentation. Each time I
hear him give this talk, he seems to reach a higher level of eloquence
concerning an array of difficulties of this illness. Dr. Peterson appears to me
to want to be as clear as possible regarding his treatment of virally reactivating patients. These patients, clearly identifiable,
represent 15% of his patients. I believe that he is mindful of his legacy and
wants his lifetime of work to be continued by others. Of course this is a noble sentiment. He
touched on Ampligen, Vistide, and Valcyte, all heavy-duty anti-virals that
sometimes bring near complete recovery to selected patients. Of course the
drugs work extra magic in his hands, as he has such a feel for this. I have
personally met patients undergoing these treatments who have returned to work. Towards
the end, Dr. Peterson confessed that he and his colleagues at large (clinicians) have not given or not been able
to give proper care to these very sick and disabled patients. There was a sense of humility in what he said,
something that you do not hear expressed very often.<o:p></o:p></div>
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Dr. Derek Enlander himself gave his usual polished,
informative presentation, outlining his treatment protocol that has brought so
much success to many patients. The room seemed to be full of his patients, in
various stages of recovery. Dr. Enlander
presented a brief view of his upcoming research into the limbic system and
announced a Spect Scan collaboration with Dr. Byron Hyde. These isotope scans look like they could be a new insight into the limbic system. Do not be surprised
to see Dr. Hyde on the next conference program. <o:p></o:p></div>
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The last speaker was Dr. Nancy Klimas. Earlier
in the day, she had been at a CFI think tank discussion at Columbia - and thus missed most of
the day’s presentations. She started her
talk by promoting the new <a href="http://www.nova.edu/nim/" target="_blank">Neuroimmune Center at Nova University</a> in Florida,
which she heads up. Dr. Klimas has recruited various top-notch people from
around the country including Gordon Broderick, one of my favorite researchers,
and another, Mary Ann Fletcher, who had the guts to speak up in defense of our
favorite advocate Eileen Holderman at the last CFSAC meeting. I have always appreciated Dr. Fletcher’s work, but my opinion of her rose sky-high in these few revelatory seconds. <o:p></o:p></div>
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This is some enterprise that Dr. Klimas has consolidated - and
let us hope that she can move things along, particularly in terms of research.
She has a knack of getting grants, particularly through piggybacking ME/CFS
onto Gulf War illness research. <o:p></o:p></div>
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Further into her talk, Klimas spoke about various
immunological aspects of this illness. I have seen variations of this
presentation quite a few times now, but for many in the audience this was a new
and exciting experience. Personally, I
have never understood her cytokine profile - and the great difference between
it and the separate efforts conducted by Dr. Montoya, Dr. Lipkin and Dr.
Mikovits. For instance Klimas does not seem to pick up elevated IL-8 in her
patient cohort. To me, elevated IL-8 is
almost a signature in itself of this illness. Conversely, she routinely gets
elevated IL-5, which is almost non-existent in other ME/CFS cytokine panel
cohorts studied. This makes one wonder what she is seeing and in what patient
group. <o:p></o:p></div>
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Lost in the shuffle of the last few years is <a href="http://www.ncbi.nlm.nih.gov/pubmed/21576403" target="_blank">the cytokine profile </a>that came out of the WPI in 2011. In spite of its attachment to the
defunct XMRV, this profile functions equally well if the letters XMRV are
removed. This study certainly gave impetus to Dr. Jose Montoya in his search for a
signature, and I am convinced that Dr. Ian Lipkin’s cytokine work is going to
reflect a similar signature, or at least be something built on the WPI
work. How could it not be?<o:p></o:p></div>
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Dr. Klimas went on to claim that we have, virtually, a
biomarker in this illness right now. I
found this somewhat disingenuous, and I do not think many
people actually believe this. Certainly we can look forward to Dr. Jose
Montoya’s studies in this regard, which will be presented in time. Dr. Montoya
has told me that he continues working on this, is making progress, but that he “wants
to get it right”. Also we can look
forward to publication of Lipkin’s work on cytokines that should emerge soon.
Most important to me is the work on NK cell and other immunological markers, a
potential “fingerprint” of this illness, coming out of the work of Dr. Sonya
Marshall-Gradisnik and Dr. Don Staines at Griffith University in Australia. I
have written on some of this <a href="http://cfspatientadvocate.blogspot.com/2013/09/blues-skies-in-mn-nk-cell-function.html" target="_blank">elsewhere</a>.<o:p></o:p></div>
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Dr. Klimas went on to complain about replication and
promoted the idea of “you replicate my work and I will replicate yours”. To me, not
having replicating studies in ME/CFS is a big problem. In my opinion the first
and foremost trial to try to replicate is <a href="http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/CFS,%20chronic%20stomach%20enterovirus,%20JCP,%20Chia%20et%20al.pdf" target="_blank">Dr. John Chia’s 2007 study </a>on
enteroviral involvement. Not having an attempt to replicate Dr. Chia’s findings
actually interferes with progress towards a solution of a significant part of
this illness. It has great negative consequences for patients. Dr. Chia is left entirely to conduct this
research on his own. Dr. Klimas should try to replicate Dr. Chia’s
work - and then we can turn later to replicating something of her lab. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It was great to hear the various clinician attitudes and nuances
for treatment – the more the better as far as I am concerned. One longs to hear
others - especially Drs. Cheney, Chia, Brewer, Gordon, and Horowitz. And then there
are other outside of the box researchers - Richard Boles (mitochondria), <a href="http://medgenetics.ucsd.edu/faculty/Pages/robert-naviaux.aspx" target="_blank">Robert Naviaux</a> (metabalome), Patricia Kane (lipid membranes), John McClaren Howard (mitochondria, lipids), Marco Ruggiero (GcMAF) and others. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There was a short question period at the end of the
conference with the various presenters as well as Frank Ruscetti, Ashok Gupta,
and Christian Becker. The panel ended with various questions to and statements
or answers from the panelists.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Marian Lemle asked a question about <a href="http://phoenixrising.me/wp-content/uploads/H2S1.pdf" target="_blank">her hypothesis </a>that H2S
plays a major role in ME/CFS and whether anyone made a connection with this. She must have been pleased that Dr. Enlander mentioned sulfur metabolism. From what I could see, Marian drew a blank from the rest of the panel. Her thesis is a good one and should be pursued. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Howard Bloom made an eloquent statement about being locked
in a darkened room for five years with this illness – and the attendant
emotional catastrophe of total isolation. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Dr. Frank Ruscetti, fielding a difficult question about
government (NIH) support for this illness, gave a fine, partial answer (by
necessity) that concluded with his belief that funding for this illness will
have to come from private foundations. I could not have agreed more and what he
said was very important - coming in the final minute of the day. So this was a great conference from the first
minute - to the last.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It is my opinion that the question period could have been
extended for another half hour. There were at least ten people with hands
raised when the conference ended - and the interest to engage the panel was
growing. Many patients husband their energy and resources to get to this
conference, and for them it is <b>a precious moment</b>, a unique contact with
individuals that are elevated in their minds.
Patient questions are generally well articulated and diverse, polite and
interactive. It is my belief that things –ideas, insights - come back the other
way too and in unexpected fashion. I hate to say it, but
panel members also need input - and some of these articulate patients might
harbor insights that are useful to others, especially to medical practitioners.
As far as I am concerned, they can never know enough about this disease and its
peculiarities - and where else to get it but from the horse’s mouth. <o:p></o:p></div>
<!--EndFragment-->consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com12tag:blogger.com,1999:blog-4895604594896814289.post-73515947671584632202013-11-13T16:53:00.001-08:002013-11-13T17:07:36.874-08:00Yellow Soup<br />
There was another fantastic and interesting <a href="http://www.citypages.com/2013-11-13/news/mysteries-of-the-microbiome/" target="_blank">article </a>on Dr. Alexander Khoruts today. It appears in City Pages, is entitled The Forgotten Organ (Mysteries of the Microbiome) and was written by Chris Parker. This fellow Dr. Khoruts, based right here in Minnesota, amazingly, is, along with Dr Thomas Borody, the most dynamic individual in this emerging field.<br />
<br />
He took a 14th century idea, known as Yellow Soup, and updated it to the 21st century. Many people are standing back, wondering how such a "Progressive idea" could emerge in our own time. (This is a bit of a joke.)<br />
<br />
I first read about Alexander Khoruts and his work a good number of years ago. He is <a href="http://www.med.umn.edu/gi/faculty/khoruts/home.html" target="_blank">right here</a> in Minnesota at the University of Minnesota. He is a world leader in fecal transplantation and it is exciting to have him working so close by to where I live in Minnesota. Minnesota is not known to be a state that is aware of or gives legitimacy to ME/CFS (an understatement), so the possibility that a treatment for ME/CFS might emerge here is welcome news.<br />
<br />
<a href="http://www.guardian.co.uk/science/2013/mar/31/bacteria-faecal-transplant-gut-mary-roach-gulp" target="_blank">Here</a> is an article on Dr. Alexander Khoruts, from the Guardian. As usual, the comments are interesting and informative.<br />
<br />
A more immediate scientific observation regarding short term fatty acids in the gut can be found <a href="http://www.riken.jp/en/pr/press/2013/20131114_1/" target="_blank">here</a>.<br />
<div>
<br /></div>
consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com0tag:blogger.com,1999:blog-4895604594896814289.post-70849234859735743792013-10-31T11:30:00.001-07:002013-10-31T16:52:27.358-07:00Mount Sinai ME/CFS conference - November 20, 2013<br />
Dr. Derek Enlander is chairing an ME/CFS treatment conference at Mount Sinai in New York City on Wednesday, November 20, 2013. This one day conference will include presentations by Dr. Nancy Klimas, Dr. Dan Peterson, Dr. Judy Mikovits, Dr. Eric Schadt and Dr. Enlander himself. A panel discussion including the speakers as well as Dr. Frank Ruscetti and Christine Becker will occur at the end of the day. The emphasis will be on communication and interaction.<br />
<br />
(The conference takes place in the Academy of Medicine, 1215 Fifth Avenue. Registration fee is $150 for physicians and $50 for patients. The conference runs from 11-4.)<br />
<br />
It is my obervation that this conference is an outgrowth of a Simmaron research discussion held prior to the ME/CFS FDA meeting in May. At that time, Dr. Dan Peterson generously organized a pre-meeting open-format treatment discussion involving both Dr. Klimas and Dr. Enlander, along with a number of other clinicians, researchers and patients. The discussion was a lively one, and free-wheeling, just the kind of discussions necessary to push ideas along. Dr. Peterson's early morning meeting was the only item of real interest at this FDA conference and it is my feeling that this Mount Sinai conference is an attempt to build on that Simmaron discussion.<br />
<br />
This is the second conference arranged by Dr. Enlander and the ME/CFS Center at Mount Sinai. Dr. Enlander is one of a very few physicians who is attached to a major university hospital doing research on this difficult illness. The last Mount Sinai ME/CFS Center conference was held two years ago and featured several very powerful and important lectures. Foremost was a talk by Dr. Eric Schadt that can be found <a href="http://cfspatientadvocate.blogspot.com/2011/11/mt-sinai-mecfs-conference-dr-eric.html" target="_blank">here</a>. Additonally Rich van Konenynberg gave a fine presentation on his mehtylation blockage/glutathione depletion ideas. Rich, who died a year later, is sorely missed by the patient community and many others who experienced the very rare character of this man. Rich's fully articulated three-hour lecture in Sweden can be found <a href="http://cfspatientadvocate.blogspot.com/search?q=van+konenynburg" target="_blank">here</a>. Dr. Kenny De Meirleir's often referenced talk on GcMAF can be found <a href="http://cfspatientadvocate.blogspot.com/2011/11/mt-sinai-mecfs-conference-de-meirleir.html" target="_blank">here</a>. Dr. Enlander himself gave a <a href="http://cfspatientadvocate.blogspot.com/2011/12/mt-sinai-mecfs-conference-dr-enlander.html" target="_blank">fine presentation</a> of his treatment strategy.<br />
<br />
It is well known that Mount Sinai received a generous research gift from one of Dr. Enlander's patients, thus fueling the ongoing ME/CFS research at this center. It is less well known that these conferences at Mount Sinai, with all their very great importance, are constructed on a shoe string. It is time for someone else to step forward and help with this conference, especially considering the reality that very few of these kinds of discussions are ongoing in the field of ME/CFS treatment. This conference has very great potential to expand and ignite substantial treatment discussions - but someone is going to have to help Dr. Enlander in order for this conference format to reach its full potential.<br />
<br />
For those readers who are not familiar with Dr. Enlander, here is a short radio interview with <a href="http://www.blogtalkradio.com/thecoffeeklatch/2013/10/25/dr-derek-enlander--canary-in-a-coal-mine" target="_blank">him</a>.<br />
<br />consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com4tag:blogger.com,1999:blog-4895604594896814289.post-15411412014424197502013-10-17T17:03:00.001-07:002015-09-18T13:01:55.404-07:00ILADS/San Diego <!--[if gte mso 9]><xml>
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I am heading to San Diego for the ILADS conference on
October 18-20. ILADS is a four-day conference on Lyme disease, its diagnosis
and treatment. ILADS has their own dogma, attached to the long term use of antibiotics in treating Lyme and its coinfections. This is a long and large conference - and it has the feeling of representing "an Industry". It is always well attended by practitioners or
researchers who have a big stake in the Industry (Professionals). In this way it is very
similar to the IACFS/ME conference that is held every two years. Both
conferences take a very broad approach in attempt to represent various constituencies.
The results are mixed - as this approach to conferences always lacks focus.<br />
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Patient-driven conferences
like Invest in ME or the Physician’s Roundtable are completely different. There is no Industry to
be supported. The Mount Sinai ME/CFS conference in November 2011 also took a more focused approach both in terms of
subject and duration. There will be another Mount Sinai ME/CFS conference on
November 20 chaired by Dr. Derek Enlander and including Dr. Nancy Klimas, Dr.
Dan Peterson, Dr. Judy Mikovits, Dr. Eric Schadt and Enlander himself. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At this ILADS conference I will try to ferret out what I
can, what is useful to me.</div>
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<br /></div>
<div class="MsoNormal">
I am very interested to hear Dr. Richard Horowitz lead a section
on treating multiple infectious diseases. This will be an extended preview of
his <a href="http://www.amazon.com/Why-Cant-Get-Better-Solving/dp/1250019400/ref=sr_1_1?ie=UTF8&qid=1382026850&sr=8-1&keywords=why+can%27t+I+get+well" target="_blank">book</a> “Why Can’t I get Better? – Solving the mystery of Lyme and Chronic Disease”,
which will be available on November 17. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
Dr. Horowitz takes a broad view, embracing the complexities
of these difficult illnesses with an umbrella framework that<b> includes both viral and bacterial
infections.</b> He tries to think outside of the box and has shown a great
curiosity over many years now. A recent lecture can be found <a href="http://funmedwebinars.wistia.com/medias/w3n7cymstt" target="_blank">here </a>sponsored by
Xymogen. In spite of the commercial aspect of this presentation, it advances his
basic notions.</div>
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<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Dr. Burrascano will give an update on the Advanced Labs
culture test. This is an important test and the CDC seems to want it to not
exist.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Dr. Joseph Brewer will present a lecture on <a href="http://cfspatientadvocate.blogspot.com/2013/04/dr-joseph-brewer-and-mycotoxins.html" target="_blank">mycotoxins involvement in ME/CFS</a> and his ongoing ideas of how to treat this. To me this is
an important subject and I look forward to hearing Dr. Brewer.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
Eva Sapi will provide an update on her Biofilm research. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Dr. Andy Kogelnik of the Open Medicine Institute will give a
talk entitled, ”Clinical Research Networks: A Paradigm for Understanding
Chronic Illness”. Dr. Kogelnik and the OPI/MERIT initiative have big plans. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Various researchers will present immunologic side of Lyme
disease – testing and treatment. (I
wonder if they know of the research of <a href="http://cfspatientadvocate.blogspot.com/2013/09/blues-skies-in-mn-nk-cell-function.html" target="_blank">Dr. Sonya Marshall-Gradisnik</a>?)<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There always seems to be such a great disconnect between the
Lyme community and the ME/CFS world. For me this is very hard to understand, as
they seem to overlap so much. In a remarkable post, Cort Johnson brings us information that <a href="http://www.cortjohnson.org/blog/2013/10/16/simmaron-research-foundations-special-chronic-fatigue-syndrome-project/" target="_blank">Simarron</a> is looking for tick-born illnesses in Dr. Peterson’s samples. I wonder why it has taken so long. I have never heard Dr. Peterson mention
anything of tick born illness. Maybe
Lipkin is finding something in this regard?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I have always been surprised at not ever seeing Dr. Horowtiz at a ME/CFS conference. He should be center stage. I did see Dr. Burrascano at a WPI conference
in Reno in the summer of 2010, brought there by the phenomenon of XMRV. Since
then a few ME/CFS physicians make an appearance at the ILADS conference, fueled
by the larger viral and immunological research of Dr. Judy Mikovits. Presenters at
ILADS have included Dr. Joseph Brewer,
Dr. Jose Montoya, Dr. Neil Nathan and Dr. Kenny De Meirleir. (A De Meirleir
lecture on GcMAF, similar to the one presented at ILADS last year, can be found
<a href="http://cfspatientadvocate.blogspot.com/2011/11/mt-sinai-mecfs-conference-de-meirleir.html" target="_blank">here</a>. GcMAF in Lyme disease has not been seen since Dr. Klinghardt proclaimed it a wonder drug several years ago. )<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It has always been a mystery to me that at ME/CFS
conferences, no mention is made of Lyme. This even holds true for the Invest in ME
conference. Maybe it is time for getting Lyme doctors to ME/CFS conferences.
Maybe Dr. Horowitz should make a presentation at the Mount Sinai Conference?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Among the many attendees at ILADS will be Dr. Judy Mikovits,
Dr. Chitra Bhakta, Dr. Eric Gordon, and Dr. Karen Vrchota. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p></o:p></div>
<!--EndFragment-->consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com4tag:blogger.com,1999:blog-4895604594896814289.post-81394496538538473272013-09-11T20:00:00.000-07:002013-09-11T21:08:09.413-07:00Blue Skies in MN (NK cell function)<!--[if gte mso 9]><xml>
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I was pleased to receive the <a href="http://www.investinme.org/IiME%20Conference%202013/IiMEC8%202013%20DVD%20Order.htm" target="_blank">DVD of the Invest in ME conference.</a> The Invest in ME conference was held in London in late May and is the premier research conference on ME/CFS. It is useful for me to watch a number of these lectures again - as I missed much during the conference day. It is an overwhelming concentration of information. Yesterday I watched Dr. Andy Kogelnik's presentation on the Open Medicine Institute. Today I viewed the lecture by Dr. Don Staines. It is a fine little talk and seeing it the second time ratcheted up my understanding of the great importance of this research. Dr. Staines is associated with the NK cell research going on at Griffin University in Australia. He was standing in for Dr. Sonya Marshall-Gradisnik, who was unable to make the conference at the last moment. Dr. Marshall-Gradisnik, working in collaboration with Dr. Dan Peterson and<a href="http://simmaron.org/" target="_blank"> Simmaron Research</a>, was scheduled to give an update on her work. Dr. Staines gave an overview of the work being done in Dr. Marshall-Gradisnik's lab on NK cells and other immuological aspects of ME/CFS.<br />
<br />
Dr Staines demonstrated that Dr. Marshall-Gradisnik's studies revealed a clear impairment of NK cell function in ME/CFS, as well as a consistent reduction in NK cell lysis. <a href="http://www.ncbi.nlm.nih.gov/pubmed/22571715" target="_blank">This study</a> points to low NK cell cytotoxity in this patient population. He went on to characterize a number of other immunuological impairments, including aberrant NK bright cells. These impairments across a variety of compartments form a fingerprint of this illness. (Interestingly Dr. Ian Lipkin suggested very much the same thing on September 10, 2013.)<br />
<br />
Dr. Staines indicated that much rides on the outcome of this research by Dr. Sonya Marshall-Gradnisnik. Dr. Marshall-Gradnisnki and Griffith University recently presented five papers at the International Conference of Immunology in Milan. <a href="http://www.frontiersin.org/10.3389/conf.fimmu.2013.02.01039/event_abstract?sname=15th_International_Congress_of_Immunology_%28ICI%29" target="_blank">This paper</a> examines Neutrophil function in ME/CFS. <a href="http://www.frontiersin.org/10.3389/conf.fimmu.2013.02.01009/event_abstract?sname=15th_International_Congress_of_Immunology_%28ICI%29" target="_blank">This one</a> focuses on T cell dysregulation. <a href="http://www.frontiersin.org/10.3389/conf.fimmu.2013.02.01010/event_abstract?sname=15th_International_Congress_of_Immunology_%28ICI%29" target="_blank">A third </a>examines Dendritic cells and Monocytes. Hopefully more will be published soon. I myself put great weight on the importance of this ongoing research and believe it will give a clear avenue into this illness, its diagnosis and treatment.<br />
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(Interestingly, in reading about Dr. Staines, I notice that he has done extensive research on Vasoactive Intestinal Peptide and ME/CFS, mostly about eight years ago.) </div>
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Meanwhile, back in my world of practicality, I track NK cell functionality in my
daughter using the <a href="http://www.questdiagnostics.com/testcenter/TestDetail.action?tabName=OrderingInfo&ntc=34184" target="_blank">Focus lab NK cell functional assay</a> (LU30). <o:p></o:p></div>
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Last week I was speaking to Dr. Derek Enlander and
I asked the him the following question: “Over the years, I have noticed that
a modest increase in NK cell function reflects patient betterment. Do you find this in your patients?” Dr Enlander answered, “Yes, absolutely.”<o:p></o:p></div>
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The key question is, can NK cell functionality be
increased? <o:p></o:p></div>
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It is my experience that MAF 314 raises NK cell functionality
to a modest degree over time. No one at this time understands much about the activity of MAF or GcMAF but, in some patients, it does something to strengthen the immune system. My daughter’s NK cell functionality over the past
two years is tracked in these NK cell functional assay numbers: 17, <b>21,
34, 29</b> and 15 (norm is 9-170). The
numbers in bold are when the patient was taking MAF 314. Since stopping MAF
314, the patient has returned to baseline NK cell function of 15. Since stopping or taking a break in MAF 314, patient
betterment has diminished in some regards. In other ways, improvement seems to have been maintained. <o:p></o:p></div>
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Various other compounds are promoted as improving NK cell
function. Primary among these is Isoprinosine. Additionally one might list Zadaxin, l. Shirota (Yakult)), AHCC, Panax ginseng, LDN, Modified Citric Pectin, MGN 3, Epicor,
Avemar, Ashwagandha, and ReishiMax (Ganoderma lucidum).<o:p></o:p></div>
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Dr. Nancy Klimas uses both AHCC and Isoprinosine, but there is no published indication of the benefit of these treatments.<o:p></o:p></div>
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<a href="http://cfspatientadvocate.blogspot.com/2013/05/linda-tannenbaum-at-investinme-2013.html" target="_blank">Linda Tannenbaum </a>is running a small trial on Moringa
oleifera. Moringa is rumored to increase NK cell functionality. <o:p></o:p></div>
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Dr. Derek Enlander has formulated a compilation of various
compounds reputed to raise NK cell function. This product is called Long Acting Natural Killer (LANK) and, in time, its activity relative to NK cell function
will be tracked in his patients. <o:p></o:p></div>
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I would be interested if anyone has had success in raising
NK cell functionality, documented by LU 30 testing. I know of one patient
whose NK cell function increased dramatically on anti-retrovirals. <o:p></o:p></div>
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Here is <a href="http://www.healthtalk.umn.edu/2013/05/13/masonic-cancer-center-researchers-develop-an-improved-process-for-nk-cell-production/" target="_blank">a recent article</a> about NK cell work at nearby University of Minnesota. <a href="http://www.sciencedaily.com/releases/2013/09/130906101334.htm" target="_blank">Here </a>is another recent NK cell function study.<br />
<br />
I would recommend purchasing <a href="http://www.investinme.org/IiME%20Conference%202013/IiMEC8%202013%20DVD%20Order.htm" target="_blank">this modestly priced DVD from Invest in ME</a>. A number of the talks are fascinating and illuminating, especially, as I said, with more than one viewing. I am particularly interested in reviewing the presentations of Dr. Amolak Bansal from Epsom and St. Heller University Hospital and also Dr. Carmen Scheibenbogen of Berlin Charite.<br />
<br />
All this leads me to restate the obvious. It is important that another conference be established on the model of Invest in ME - one day private discussions, one day of public lecture. The subject needs to be "Treatment Now". We have watched for eight years as the Invest in ME conference has consolidated and expanded research into ME/CFS - and a similar effort now needs to be made in discussions and presentation of available treatments. A worthy goal would be to formulate a clear diagnostic and treatment protocol for newly diagnosed patients. At this point, with the possibility of standardized treatments, it makes no sense to delay any more on this issue. Enough people have suffered with lousy treatment early on and Dr. Lipkin's talk yesterday indicates what most of us already know: the first few years are critical for intervention in order to blunt the negative progress of this illness. Also more effort needs to be given to those vast number of patients who are severely ill, unable to get proper medical care and ignored in almost all clinical trials. These severe patients hold the key to this illness and they should both be attended to and studied. </div>
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<!--EndFragment-->consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com3tag:blogger.com,1999:blog-4895604594896814289.post-85411082576846311992013-08-16T21:40:00.000-07:002021-10-24T09:22:16.989-07:00Striker drugs or terrain modulation?<div class="separator" style="clear: both; text-align: center;">
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<br />
<br />
Here in Minnesota, I try to escape the role of a patient advocate for a few hours and recapture my own reality. Often I go into the Minneapolis Institute of Art, a very deep and broad collection that takes you into unexpected realms. The museum is always near empty. I am not complaining about this, but it does say something about the larger "culture" in which we live.<br />
<br />
I have many favorites here and I visit them each time as if they were old friends, which indeed they are. The above portrait by Goya is high on my "favorites list" and represents for me what doctoring is about - in this age or any age.<br />
<br />
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It is entitled "Self-portrait with Dr. Arrieta". Goya painted it in 1820 in appreciation of his physician, who saved his life. The inscription at the bottom, painted in oil paint, reads, "Goya gives thanks to his friend Arrieta for the expert care with which he saved his life from an acute and dangerous illness which he suffered at the close of the year 1819 when he was seventy-three years old. He painted it in 1820."<br />
<br />
This painting speaks for itself - with subtleties that reveal themselves on close and repeated viewing. In this world of ME/CFS, there are a number of doctors who match Goya's idea of Dr. Arrieta, both for skill and devotion. One of them is Dr. Dan Peterson, who was recently interviewed by Debra Waroff on <a href="http://www.youtube.com/user/MECFSAlert" target="_blank">ME/CFS Alert</a>. As quickly as this twenty-minute video appeared on the internet, it disappeared - for unknown reasons. ProHealth has a written transcript of the interview <a href="http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=18258" target="_blank">here</a>.<br />
<br />
I stood by chance in a room with Dr. Peterson at the IACFS/ME conference in Reno, NV, in 2009, and witnessed an outpouring of love for this physician from his patients. It was a powerful moment, perhaps the most moving public testament that I have ever seen. Since then I have had the opportunity on a number of occasions to see Dr. Peterson making presentations and lobbying for more research into this nasty illness, ME/CFS.<br />
<br />
At the FDA meeting this spring in Bethesda I stumbled into the room where Dr. Peterson was sponsoring, along with <a href="http://simmaronresearch.com/" target="_blank">Simmaron Research</a>, a small, informal but powerful roundtable discussion regarding treatment. Other physicians were present, including Dr. Nancy Klimas and Dr. Derek Enlander, both of whom provide support and care in the old-fashioned manner of Goya's Dr. Arrieta. The discussions were both lively and informative and more interaction between well-meaning clinicians should be taking place. This specific (pre-FDA meeting) gathering was entirely the result of Dr. Peterson's effort, spending his own time and money to make this happen. Dr. Peterson is a generous soul.<br />
<br />
In recent years Dr. Peterson has reached out to establish research and treatment relationships with many other people, most noteworthy being Dr. Andy Kogelnik of the <a href="http://openmedicineinstitute.org/" target="_blank">Open Medicine Institute</a>. This looks to be a fruitful collaboration.<br />
<br />
I have witnessed similar but larger discussion formats instituted by <a href="http://investinme.com/" target="_blank">InvestinME </a>each year now, where they gather a large group of researchers and physicians in one room to have day-long discussions.<br />
<br />
In March, Dr. Peterson made a presentation of a clinical study of his use of Vistide in ME/CFS. An article on the use of this drug by <a href="http://cortjohnson.org/" target="_blank">Cort Johnson </a>can be found <a href="http://simmaronresearch.com/2013/04/peterson-conference-presentation-reports-vistide-cidofovir-effective-in-treating-chronic-fatigue-syndrome-mecfs-patients-with-hhv6-and-hcmv-infections/" target="_blank">here</a>. Vistide is a heavy-duty antiviral drug that needs to be carefully managed. Dr. Peterson has by far and away the most experience with this drug - and also with Ampligen. Dr. Peterson uses other modalities, also that are in the category of what I would call "striker drugs". They are designed to knock the hell out of a target and allow (or hope to allow) the immune system to get back on top of whatever. I myself have met a number of individuals who have gone through Dr. Peterson's treatments and come out the other side being able to build a better life. On the other hand, I wonder how many patients "blow out" on his treatments?<br />
<br />
In looking at Debra Waroff's fine interview I found myself wanting to ask how Dr. Peterson determines that a particular patient would qualify for treatment with Vistide - or for that matter with Ampligen? He obviously makes his decision based on viral titers and other tests - and on his clinical judgement. The specifics interest me.<br />
<br />
It is noteworthy that in this short interview Dr. Peterson does not speak of lyme disease or its coinfections, nor does he address mycoplasmas or mycotoxins.<br />
<br />
Debra Waroff speaks of Dr. Peterson as the "Father of CFS". In this she is partially correct, as there were two fathers of CFS - the other being Dr. Paul Cheney. Each of these physicians has continued, in straight-line fashion, their separate pursuits of the diagnosis and treatment of this illness. The manner in which they diverge in their approach is worth noting, as their angles of approach are so different and almost seem unbridgeable. One might even believe that they are dealing with two different illnesses. And yet their patient cohorts must be similar, both involving patients coming from all over the world.<br />
<br />
If Dr. Peterson utilizes heavy duty drugs to strike a particular target ("a serious drug for a serious illness"), Dr. Cheney eschews this, leaning more in the direction of "terrain issues", the larger contextual field in which the illness pathology operates ("The microbe is nothing, the terrain is everything"). The language of Dr. Cheney does not intersect at all with Dr. Peterson's. With Dr. Cheney there is no mention of Valtrex, or Ampligen, or even Acyclovir. Instead, from Dr. Cheney we hear terms like bison cell-signalling factors, trophic factor, Vaso Intestinal Peptide, adult stem cells, MAF 314, GcMAF, BLAK water, Isoprinosine (Inosine) - all used variously in an effort to alter the terrain instead of directly striking an approximate or assumed target. When Dr. Cheney does bring out the "big guns" to attack a virus it is Artesunate or Colloidal Silver.<br />
<br />
Dr. Cheney's ideas are presented in<a href="http://cfspatientadvocate.blogspot.com/2013/04/paul-cheney-lecture-march-22-2013.html" target="_blank"> a lecture</a> in another post on this site. The ideas presented in this lecture are totally fascinating. Dr. Cheney has a very individualistic diagnostic device in his IVRT echo machine, a device to which he is seriously tethered. So far very few people seem to be paying attention to Dr. Cheney's important diagnostic and treatment criteria. This is not understandable to me, this marginalization of perhaps the most acute and complex mind in the field. One hopes that Dr. Cheney's impressive work does not go in the direction of Dr. Jay Goldstein's.<br />
<br />
While Dr. Cheney maintains a relatively withdrawn or private image (in spite of attending many conferences), he does have important interactions with various clinicians - for instance Dr. Shoemaker, Dr. De Meirleir, and many others outside of the typical ME/CFS arena.<br />
<br />
Interestingly, Dr. Cheney also does not talk much about lyme disease. When he does, he is indecisive, as if he is unable to decide where this bacterial element resides in the larger picture.<br />
<br />
These two physicians, these two "fathers of CFS" - Dr. Peterson and Dr. Cheney - represent the extremes. It is as if they are in an unspoken contest to get at this illness - from decidedly different directions, from poles as far apart as possible. The world created by the tension between these divergent approaches is totally fascinating. It is in the dynamism - the crunch - of these two approaches that progress is going to happen.<br />
<br />
My conclusion, in watching the unfolding diagnosis and treatments in ME/CFS, is that more treatment discussions need to take place, particularly regarding this dynamic of drugs versus terrain modifications. Many other clinicians - Guyer, Enlander, Klimas - live in the world in between, adopting items from both ends of the spectrum.<br />
<br />
There is a great need to have conferences or retreats where treatments are discussed. Some clinicians give an indication of being able to play well in the playpen while others have not. This of course can present problems.<br />
<br />
A treatment conference should be held inviting Shoemaker, Enlander, Cheney, Klimas, Peterson, Horowitz, Brewer, Chia, Lerner, Montoya, Bhakta, De Meirleir, Kogelnik, Mikovits and others. The Invest in ME format of one day for private discussions and one day for public lectures is decidedly the best. It would be important to first develop a clinical treatment protocol for newly diagnosed patients. (Additional attention should be given to the severely ill patients, who hold the key to this illness.) There are diagnostics and interventions that can be done now. If these clinicians waver in their confidence in being able to do this, I and other advocates and patients could give them some good starting points. Many of us have learned the hard way. <br />
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<br />consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com7tag:blogger.com,1999:blog-4895604594896814289.post-31166033961425876652013-08-08T12:06:00.002-07:002013-09-13T09:01:12.241-07:00Laurel B.'s ME/CFS video<br />
Here is a re-edited version of Laurel B's fine ME/CFS video. Laurel has done a service for us all in making this essential video.<br />
<br />
<br />
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<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/LvweCk44WHs" width="420"></iframe>consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com2tag:blogger.com,1999:blog-4895604594896814289.post-65416045993373553082013-05-30T03:44:00.000-07:002013-05-30T09:58:59.073-07:00Moving a Severe ME patient<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span style="font-size: 14pt;">I was at
the recent FDA meeting. Whether it is this meeting or any other government
meetings, no mention is ever made of severely ill ME/CFS patients. No depiction
of the real severity of the illness is recorded or given. There seems to be a
constitutional allergy to depicting "the core of this illness".</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14pt;">This is
true of government bureaucrats as well as patients, advocates, physicians, and
clinicians – everyone. Many "half-sick", ambulatory patients give eloquent and
heartfelt testimonies at government grieving altars. Regardless of the
sacrifice on the part of patients, this information does not seem to impress
anyone. Nothing happens. This is a
longstanding reality. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14pt;">It is a
structural problem – not embracing the deep seriousness of the illness. No one wants
to go there. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14pt;">ME is a
dangerous, debilitating, life-destroying illness of a frightening dimension.
The government’s half-baked response to this illness shows great disregard - and manifests
incredible cruelty towards patients with this serious illness.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14pt;">Until those
at the center of this illness - those in darkened rooms - are
depicted and embraced and understood, nothing will happen at the government level. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14pt;">In order to
set the tone, videos of severely ill patients should be presented at the
beginning of any government or private conference on ME/CFS. <a href="http://voicesfromtheshadowsfilm.co.uk/" target="_blank">Voices from the Shadows</a>, Josh Biggs' and Natalie Boulton's very fine film (or similar videos ), should be mandatory - to set the stage and to get
the participants in the right frame of mind. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14pt;">There is
clear evidence that the government has no interest in this. Multiple times they
have been given the opportunity to present visual evidence of the severity of the illness, and
they have said – no. The government is
content to give a grieving altar to the moderately ill and leave it at that.<o:p></o:p></span><br />
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14pt;">The very, very ill have big problems. Everything around them represents a threat to their
health. They need to be protected at every level – protected from doctors, from
realtors, from neighbors, from movement, from noise and vibration, from friends,
from family, from hospitals, from water, air, chemicals, mold – from everything. <o:p></o:p></span><br />
<span style="font-size: 14pt;"><br /></span>
<span style="font-size: 14pt;"><iframe allowfullscreen="" frameborder="0" height="281" mozallowfullscreen="" src="http://player.vimeo.com/video/34099309" webkitallowfullscreen="" width="400"></iframe> <a href="http://vimeo.com/34099309">Dr. David Bell & ME/CFS patient</a> from <a href="http://vimeo.com/mecfspatients">ME/CFS patients</a> on <a href="http://vimeo.com/">Vimeo</a>.</span><br />
<span style="font-size: 14pt;"><br /></span>
<span style="font-size: 14pt;"></span><br />
<div class="MsoNormal" style="font-size: medium;">
<span style="font-size: 14pt;"><span style="font-size: 14pt;"><iframe allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/LvweCk44WHs" width="400"></iframe></span></span></div>
<div class="MsoNormal" style="font-size: medium;">
</div>
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br />
<span style="font-size: 14pt;"><a href="http://thecornerroom.tumblr.com/post/49622381915/a-move" target="_blank">My daughter</a>
recently wrote about her May 2012 move from one apartment to another. She
writes her blog posts excruciatingly slowly - mostly from memory, using a voice
recorder, and typing on a keyboard without using her eyes. Among other things, my daughter suffers from photophobia and hyperacusis. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14pt;">This 2012
apartment move was the first time my daughter had been out of the house since
April 2010. She has been out of the house twice in seven years.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14pt;">In April
2010, in a similar coordinated operation, we took her to a neuro-ophthalmologist. I was concerned about her eyes. (I still am.) My eldest son flew in from Baltimore and, along with a MN friend, we drove my
daughter the 12 minutes to the doctor's office. My daughter lay in the back seat
of a Chevy sedan. As I was helping my daughter out of the car she said that she
felt “like she had been beat up”. (I
learned something there.) We rolled her into the office on a wheel chair. The
office staff was compliant. They lowered the shades and turned off the lights. The
neuro-ophthalmologist did the first half of an eye exam and found nothing
remarkable. When the doctor left the
very small office for a few minutes, my daughter got out of the examination
chair and lay on the floor on a mat that we had brought with us. This seemed
to disarm the doctor. A few minutes later we were back in the car, heading home.
Once back in her apartment, my daughter recovered slowly - taking nine weeks to
reach baseline. Moving an ME/CFS patient is a precarious business. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14pt;">While this
trip was difficult, and costly in terms of recovery, my feeling was
that at least we had gained one doctor in MN. This turned out to be a delusion - as
this physician proved unwilling to deal with my daughter through an advocate. Pleas
to do so from another more compliant physician fell on deaf ears. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14pt;">Recently I
have learned from an ME/CFS friend a little more about moving severe ME patients.
Here is my friend’s explanation:<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 14pt;">“A car trip with CFIDS can be
exhausting and unsafe, yet necessary to get to medical appointments. Lying
across the back seat with no seat belts is highly uncomfortable and unsafe and
the average backseat is rarely flat and small cars aren’t wide enough for a
horizontal adult. Although a front passenger seat can be tilted back, it does
not go completely horizontal and often is uncomfortable as well and the
seatbelt can actually be dangerous to use with the passenger seat tilted
down. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 14pt;">After many months of research I
decided to put an ambulance cot with seat belts in my van. I worked with an
ambulance outfitter and we removed one of the back seats in my
Honda Odyssey and then bolted the ambulance cot through the floor.
This van-with-cot and harness seat-belt innovation has greatly improved my
ability to get to medical appointments even if they are far away and even,
though rarer, to occasionally make a nonmedical trip. It has made car travel
possible in two very different, but equally critical ways:<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 13.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 13.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1a1a1a; font-size: 14pt;">1) It allows for long trips in both
comfort and safety and one can also switch to the front passenger seat to be
upright for a while. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 13.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1a1a1a; font-size: 14pt;"><br /></span>
<span style="color: #1a1a1a; font-size: 14pt;">2) It also allows a CFS patient who
can drive a few miles to have the ability to rest at any point during the trip
as you can pull over and get in back and rest as long as needed before
continuing the trip or errand. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 14pt;">I was able to sell my old car for the same price I bought
a 1996 second hand Honda Odyssey and I was lucky to get a free ambulance cot
that had been removed in an upgrade. My only cost was the $200 installation.
The cot is outfitted with pillows and a lightweight blanket and sleeping
bag. A stick-on-protection film on the window reduces the sunlight. The
original ambulance mattress was pretty hard so it's helpful to add a medium
density latex 2” topper which can be cut to size.”</span><span style="font-size: 14pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 14pt;"><br /></span></div>
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<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 14pt;"><br /></span></div>
<div class="MsoNormal">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1Sc3C2iVBRo4IAnKNGWLpf_YgrVECc6iRy0qaCQtxgRtOPLN5BLgy-dDM6ZOEX7tNc2KRqpGHTqcVB9vlJRCkrXo5dsvyAjk6WWxX4vavUBa-aD9L9HnfTxQUbMG8CsOKUeniz4vYkoqO/s1600/IMG_0916.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1Sc3C2iVBRo4IAnKNGWLpf_YgrVECc6iRy0qaCQtxgRtOPLN5BLgy-dDM6ZOEX7tNc2KRqpGHTqcVB9vlJRCkrXo5dsvyAjk6WWxX4vavUBa-aD9L9HnfTxQUbMG8CsOKUeniz4vYkoqO/s1600/IMG_0916.jpeg" /></a></div>
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<div class="MsoNormal">
<span style="font-size: 14pt;">Circumstances
now lead us to contemplate moving my daughter from Minnesota to Philadelphia.
This is a much more complicated process and there is very little information to
guide us, to help us to make decisions. One has to be extremely careful with a
severely ill ME patient. Movement, sounds, smells, sights, vibration, touch can
all be destructive for the patient – and not just in an incidental manner. I
will write more about this later. <o:p></o:p></span></div>
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<!--EndFragment-->consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com4tag:blogger.com,1999:blog-4895604594896814289.post-60610781893926240382013-05-09T19:33:00.000-07:002013-05-09T19:33:17.101-07:00Mindy Kitei at the FDA<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/WaAsvW8tef4" width="425"></iframe>consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com6tag:blogger.com,1999:blog-4895604594896814289.post-89594032008863326732013-04-23T07:02:00.000-07:002021-10-13T16:58:37.457-07:00Paul Cheney lecture - March 22, 2013<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/dHO6-q6WGT4" width="420"></iframe><br />
<br />
Here is the first part of a Paul Cheney lecture given in North Carolina on March 22, 2013. It is entitled "Compassionate Use Treatment of Chronic Fatigue Syndrome using both chemical and probiotic (MAF 314) forms of GcMAF".<br />
<br />
The lecture was given at the Forsyth Center Maya Angelou Center for Women's Heatlth and Wellness in Winston Salem, NC. It was sponsored by the <a href="http://www.cfsfms.org/" target="_blank">Winston Salem Chronic Fatigue Syndrome, Fibromyalgia and Lyme disease support group.</a><br />
<br />
The lecture was free to the public.<br />
<br />
Teresa Simmons provides this title of one of the lectures: "Chronic Fatigue Syndrome as a cellular energy disorder related to poor redox buffering followed by progressive complications arising from a low cardiac energy system related to energy-linked cardiac diastolic dysfunction". The title itself gives a clue of what the viewer will engage in these videos.<br />
<br />
Dr. Cheney has evolving and innovative treatments and this lecture will present his latest ideas. Thanks to Teresa Simmons for this video presentation of this important lecture.<br />
<br />
Dr. Cheney gives public presentations every few years, encapsulating his unique treatment ideas and protocols. His lectures are long, usually three hours, and complex. They invite repeated viewing as they encompass so much information and presented in his inimitable manner.<br />
<br />
Great progress is being made in the availability of research and treatment ideas in these complicated illnesses. I saw the 2009 lecture of Dr. Cheney in VA, which was only available to the wider audience on a DVD at a significant cost. Times are changing and now others worldwide have access to Dr. Cheney's latest thinking. Maybe other clinicians will view this and connect the dots - adding in and testing out some of Dr. Cheney's ideas. And maybe some ideas will flow the other way, from the outside into Dr. Cheney's brain, made possible by the information disseminated in this lecture video.<br />
<br />
The second and third part are here.<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/IWwZQUgaRJU" width="420"></iframe><br />
<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/cB2gm6FRUIE" width="420"></iframe><br />
<br />consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com6tag:blogger.com,1999:blog-4895604594896814289.post-50527624708564722072013-03-31T11:35:00.000-07:002013-03-31T11:35:00.843-07:00Alexander Khoruts, M.D.<br />
I first read about Alexander Khoruts and his work a good number of years ago. He is <a href="http://www.med.umn.edu/gi/faculty/khoruts/home.html" target="_blank">right here</a> in Minnesota at the University of Minnesota. He is a world leader in fecal transplantation and it is exciting to have him working so close by to where I live in Minnesota. Minnesota is not known to be a state that is aware of or gives legitimacy to ME/CFS (an understatement), so the possibility that a treatment for ME/CFS might emerge here is welcome news.<br />
<br />
<a href="http://www.guardian.co.uk/science/2013/mar/31/bacteria-faecal-transplant-gut-mary-roach-gulp" target="_blank">Here</a> is an article on Dr. Alexander Khoruts, from the Guardian. As usual, the comments are interesting and informative.<br />
<br />
<br />consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com1tag:blogger.com,1999:blog-4895604594896814289.post-47913981345657446742013-03-24T10:34:00.002-07:002013-03-24T10:37:48.792-07:00Jessica's Story - Severe ME<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/NL7YbpYVVz0" width="420"></iframe><br />
<br />
Here is a video of Jessica, a young woman with Severe Myalgic Encephalomyelitis. Jessica has been bedbound for seven years. The video is entitled "Seven Years in the Making", and depicts the realization of her Birthday Wish.<br />
<br />
Here is another film on Jessica entitled "The World of One Room". These powerful films highlight Myalgic Encephalomyelitis at its most fundamental core and we must thank Jessica for giving us this extraordinary view into her world. These videos are important.<br />
<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/VH-puNCQxh4" width="420"></iframe>consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com11tag:blogger.com,1999:blog-4895604594896814289.post-46363169377175932462013-02-25T18:26:00.002-08:002013-02-26T07:37:00.986-08:00"Hanging Fire" – Dr. John Chia<!--[if gte mso 9]><xml>
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<span style="font-size: 14pt;">I remember
well the ME/CFS researcher Jonathan Kerr. Many people might not remember that
he wrote a paper on enteroviral involvement in ME/CFS, a copy of which can be found </span><span style="font-size: 14pt;"><a href="http://www.cfids-cab.org/cfs-inform/Virus/kerr07.txt" target="_blank">here</a></span><span style="font-size: 14pt;">.</span></div>
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<span style="font-size: 14pt;">“The role
of enterovirus infection as a trigger and perpetuating factor in CFS/ME has
been recognized for decades.”<o:p></o:p></span></div>
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<span style="font-size: 14pt;">Soon after
this, Jonathan Kerr "was disappeared" from ME/CFS research. I wonder where he is?
I miss his efforts on our behalf. The more I think about his departure, the sadder I
get. In the last few years we have lost a number of serious ME/CFS researchers.
These losses have been distressing. <o:p></o:p></span></div>
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<span style="font-size: 14pt;">On a less
disturbing note, we might put forth the idea that ME/CFS research has never
been so broad and far-ranging as it is today. Some would say that we are making
progress, and that hope stands right around the corner (probably leaning against
a wall, whistling - or smoking a cigarette). <o:p></o:p></span></div>
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<span style="font-size: 14pt;">In this
world of optimism, one astonishing item continues to be set aside or ignored:
<b>the enteroviral association with ME/CFS established by Dr. John Chia</b>. Something
needs to be done about this. Dr. John Chia's <a href="http://www.enterovirusfoundation.org/pdfs/research/CFS-is-associated-with-CEI-of-stomach.pdf" target="_blank">critical work</a> should be put center
stage. Dr. Chia holds in his hand a key to unlock a part of this illness. <o:p></o:p></span></div>
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<span style="font-size: 14pt;">Recently
there has been a fine set of video interviews with this unsung hero of ME/CFS. Part one can be seen <a href="http://www.youtube.com/watch?v=NhU-G0loqtY" target="_blank">here</a> with the others following. These interviews
are conducted by Llewellyn King, who speaks with a knowledge and ease that is
admirable. Llewellyn King’s series <i><a href="http://www.youtube.com/user/MECFSAlert/featured" target="_blank">ME/CFSAlert</a></i> has focused on many clinicians and researchers. However, this
four-part interview with Dr. John Chia is the best. It is worth viewing these
videos more than once - for the key points to sink in. <o:p></o:p></span></div>
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<span style="font-size: 14pt;">Ten years
ago, Dr. Chia’s son Andrew became sick with what turned out to be ME/CFS. In
his desire to help his son, Dr. Chia did what many smart people do - he turned
to the past (history) - and studied the early literature of ME. Things fell into place for Dr. Chia as he reviewed the older, known connection of ME/CFS to enteroviruses.
Enteroviruses fit the picture. <o:p></o:p></span></div>
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<span style="font-size: 14pt;">Early clinicians
in the field, especially Ramsey and Richardson, suspected enteroviral
involvement. This belief held particularly true in the UK, where the disease is
known by its proper name - Myalgic Encephalomyelitis (ME). <o:p></o:p></span></div>
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<span style="font-size: 14pt;">If one wants
to get a real fright about the seriousness of this illness and what enteroviruses
can do in the human body, read John Richardson’s <a href="http://www.amazon.com/dp/0789011271" target="_blank">“Enteroviral Medicated EncephalomyelitisSyndrome Pathologies”</a>.<o:p></o:p></span></div>
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<span style="font-size: 14pt;">In time, the
pursuit of an enteroviral association with ME/CFS lapsed. There are several
reasons for this. <o:p></o:p></span></div>
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<span style="font-size: 14pt;">In 2007 Dr.
Chia and his son Andrew Chia reignited this enteroviral idea and published a paper demonstrating a strong association
of enteroviruses in ME/CFS. The
surprising and convincing aspect of their study was that they were looking at
real human tissue – stomach biopsies. This is hardly ever done in ME/CFS
research.<o:p></o:p></span></div>
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<span style="font-size: 14pt;">As a
researcher/clinician, Dr. Chia has constructed a world of his own. He has gathered
his profound insights through making no great new discovery. He has just
connected the dots. His studies are the product of persistent, dogged effort. As
he says, his work is not sexy. Dr. Chia and his son continue to build research
into enteroviral involvement in ME/CFS. <o:p></o:p></span></div>
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<b><span style="font-size: 14pt;">Since his paper was published in 2007,
no one has tried to substantiate or replicate his work. Why? How can his be? <o:p></o:p></span></b></div>
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<span style="font-size: 14pt;">Dr. Chia
has left “something of significance” for us sitting on the table in plain
view. To get further with this it needs
to be taken up by someone else. No thinking is involved. All it needs is the hard work of
replication.<o:p></o:p></span></div>
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<span style="font-size: 14pt;">(InvestinME
has done a great service in elevating Dr. Chia’s research. They invite him to
speak each year. Unfortunately, his research efforts are at a standstill with
his ideas gaining no traction. What is Dr. Chia supposed to do – replicate his
own study?)<o:p></o:p></span></div>
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<b><span style="font-size: 14pt;">Anyone familiar with the research
world of ME knows the implications of nailing down one corner of the illness
through substantiating an association with an infectious agent. Let me repeat that: if you nail down one
corner of this illness with an infectious agent, you nail down the whole thing.
<o:p></o:p></span></b></div>
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<span style="font-size: 14pt;">Instead, everyone
wants to go in their own direction and solve this illness on their own. Is that
the idea? - Everyone comes up with their own idea that will never be
substantiated? Is this how real science is done today? Does the ME/CFS research
world have to be that constricted?<o:p></o:p></span></div>
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<span style="font-size: 14pt;">Why doesn’t
the Whittemore Peterson Institute (WPI), Mt Sinai
ME/CFS Center, Ben Natelson, Peterson’s Simarron Research Foundation, Klimas’
Nova Institute for Neuroimmune Medicine, the Chronic Fatigue Initiative,
Kolgenick’s Open Medicine, Jose Montoya at Stanford, or the CAA, step up to the plate and substantiate Dr.
Chia's work? <o:p></o:p></span></div>
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<span style="font-size: 14pt;">The most
likely person to pursue the enteroviral connection in ME/CFS is Ian Lipkin at
Columbia. Lipkin has an inquisitive nature. I would be surprised if he is
doing tissue biopsies, which seems the way to go. <o:p></o:p></span></div>
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<span style="font-size: 14pt;">It is time
for someone to make a serious effort to replicate Dr. Chia’s work - and to find out what exactly it means. <o:p></o:p></span></div>
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<b><span style="font-size: 14pt;">Nothing would get the government
agencies or the drug companies interested faster than scientifically
demonstrating a viral association to ME/CFS.</span></b><span style="font-size: 14pt;"><o:p></o:p></span></div>
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<span style="font-size: 14pt;">You can
petition the government as long as you want but nothing will
change until the science is built in a coherent fashion. Giving them a
replicated study of Dr. John Chia’s work would be a very good first step. It
would put a sudden halt to the research merry-go-round of the last twenty-five
years. </span><br />
<span style="font-size: 14pt;"><br /></span>
<span style="font-size: 14pt;">Whoever participates in this will get a very big feather in their cap. </span><o:p></o:p></div>
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<!--EndFragment-->consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com17tag:blogger.com,1999:blog-4895604594896814289.post-26189414813523967572013-02-18T15:23:00.001-08:002013-02-18T15:24:37.241-08:00Dr. John Chia with Llewellyn King<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/QGRwyrnuDLs?list=UUxrPmgVwJ7-gLqZJK_qLeFg" width="420"></iframe><br />
<br />
Just today I was speaking to a friend about Llewellyn King's gifts at interviewing people. Here is another example of his fine work, another section of an interview with Dr. John Chia. Dr. Chia is one of the very finest minds working in the field of ME/CFS.consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com1tag:blogger.com,1999:blog-4895604594896814289.post-37207105457290318432013-02-01T10:14:00.001-08:002013-02-01T10:16:19.395-08:00Dr. John Chia with Llewellyn King, 3rd section<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/A1h0elEhSO0" width="420"></iframe><br />
<br />
Here is the third section of a very fine interview with Dr. John Chia. The interview is conducted by Llwellyn King. Mr. King does us a great service in conducting these <a href="http://www.youtube.com/user/MECFSAlert" target="_blank">ME/CFS Alert</a> interviews, and presenting ME/CFS information with such clarity. Clarity is something that is in short supply in this illness.<br />
<br />
This interview should be required viewing material for anyone who is interested in this illness. Dr. Chia has a firm grasp on a very significant aspect of this complex illness. His ideas are attached to solid evidence - also something that is in short supply in this illness. It is always surprising to me that more clinicians and researchers are not assisting Dr. Chia and his ideas, which incidentally are not new ideas, but take us back to the very first studies of this illness in the UK.<br />
<br />
It would be nice to have some validation of Dr. Chia's ideas through other clinical studies involving other clinicians and researchers. Perhaps I am just not privy to this information, but it seems that Dr. Chia is working on his own here - and to me this is a problem, as he has what looks like a significant part of the answer.<br />
<br />
I wonder what Dr. Chia would think of <a href="http://cfspatientadvocate.blogspot.com/2013/01/anatabloc-for-inflammaging.html" target="_blank">Anatabloc</a>? I wonder if he uses it with his patients?<br />
<br />
I have written in other posts about Dr. John Chia - for those who might be interested.consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com0tag:blogger.com,1999:blog-4895604594896814289.post-18400000984016794112013-01-11T14:26:00.002-08:002021-10-24T09:18:18.729-07:00More with Dr. John Chia - Llewellyn King Interview<iframe allowfullscreen="allowfullscreen" frameborder="0" height="315" src="http://www.youtube.com/embed/I44G-tGgLNE" width="420"></iframe>
Here is the second part of an ME/CFS Alert interview with Dr. John Chia. Llewellyn King does such a fine job at interviewing his subjects, proving that interviewing is an art. And his subject here, Dr. Chia, is about the best. Dr. Chia has done a great deal of clinical research characterizing a significant insult or pathogen in many ME/CFS patients - enteroviruses (various coxsackie and echo viruses). Here Dr. Chia speaks about treatment with oxymatrine (Equilabrandt), which seems to work in about 50% of cases.<br />
<br />
I wonder if any hepatitis drugs in the pipeline would be useful for enteroviruses?<br />
<br />
I also wonder if there is some manner in which oxymatrine could be made to be beneficial in a higher percentage of patients - a pretreatment of some sort with diet, gut ecology, and MAF-like substances. Any number of other ways to help lower the collective burden on the immune system might raise the success rate of oxymatrine. Dr. Chia seems to be such an innovator and so individualistic in his thinking - one would have to believe he is thinking along the lines of how to improve efficacy of the one weapon that he has against enteroviruses.consuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.com3