CBD

This post is preceded by 2 posts on sleep. These three posts are designed to be viewed together.

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.  Most resided in states where medical marijuana was legal or about to become legal.

Cannabis has over 70 cannabinoids of which the most well known is THC, the psychoactive part of the plant.  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.

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 Israel, Spain, UK and Italy, but it is, predictably, underfunded.

Anyone who wants to engage this subject is going to have to proceed on their own, guided by trial and error.

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.

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 Mary's Medicinals makes good products. 

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.

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.

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.

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.

The present choice in high grade, organic hemp CBD is quite surprising. At one end one finds Mary’s Nutritionals pure CBD. 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 RSHO-X - 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.  A good example of this can be found at Nu-Leaf. 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 Endoca.

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.

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.

The rationale for using CBD in ME/CFS lies in the thought that ME/CFS might be connected to an Endocannabinoid Deficiency. Here is an article on the Endocannabinoid system. Here is another one. Finally, here is an interview with Dr. Ethan Russo on CBD and Endocannabinoid Deficiency.

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. 

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.

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.

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.

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.

Both ME/CFS physicians Paul Cheney and John Chia have used CBD with their patients. 

Here is an additional blog that has information on CBD.

What is written about is educational in nature. It is not medical advice. Please consult your physician (if you have one) for medical advice. 

Sleep in ME/CFS

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. 

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!).

Vasoactive Intestinal peptide

Vasoactive Intestinal Peptide (VIP) is a neuropeptide with a host of activities in the human body. In ME/CFS, it was studied by Don Staines about ten years ago. Very little follow up study in ME/CFS has been done of this neuropeptide. One wonders why. Both Dr. Paul Cheney and Dr. Ritchie Shoemaker used it in their practices with varying success (until they retired). Dr. Shoemaker describes it here, 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. VIP can be procured by prescription from one compounding pharmacy in the US. Various testimonials 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 it is described here.  This is from several years ago. Testing VIP levels can be done at ARUP labs. Other labs appear to be unreliable.

B12

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 b12 oils, 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 Phoenix Rising. 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.

Magnesium

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 KirkmanLabs. 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 products can be bought online or from compounding pharmacies. They tend to be expensive. 

5-htp, SAM-e, Uridine

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. 

Piracetam

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 here. Scroll down on this page by Maija Haavisto and read what she says. The third is included in a book and website by Erica Verrillo here. 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 here and here. Piracetam can be liposomalized. 

Other items

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.

Drugs

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. 

Low dose oxygen

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 take low-dose 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. 

And then there is hemp and marijuana based CBD
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.

This time of year - and Severe ME/CFS

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.

We need to try to do more to relieve their suffering.

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.

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.

Please excuse the repetition as I quote a few items from my previous blog posts.  As Stravinsky said, some things need repeating.

“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.

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.

I know of a number of these patients. They have the willingness to participate, through testing, in their own potential 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.

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.”

“Until those at the center of this illness - those in darkened rooms - are depicted, embraced and understood, nothing will happen at the government level.

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. Voices from the Shadows, 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.

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.

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.”

“And what about the others - what about the really sick ones?

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 Laurel's CFSAC video testimony 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.

"Walled up:

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.”

Incidentally these severe patients have measurable abnormalities that characterize the illness.

I have written about the film Voices from the Shadows here. Allow me to quote one part of this review.

“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, to chose to move in close 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.’

"Natalie Boulton has also done us a great favor in writing and editing her fine book, Lost Voices, a gathering or set of stories and pictures of severely ill UK ME patients. The book was published by InvestinME in 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.

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.

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.

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.

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.”

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.

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.  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.  Each had to find their own path through trial and error. This is an important bit of information.

Yesterday I read this article, which I found of interest.

IACFS/ME - and then Mission Delores

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)

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.

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.

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 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.

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 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."

("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.

There was considerable interest during the question period and Dr. Chia answered a host of questions. 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 his 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 myself 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-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.

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 IACFS/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 EV Med Research, 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 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.

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 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.

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, 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 what Dr. Skip Pridgen announced yesterday. Was Dr. Pridgen at this conference?

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?