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.

More on Enteroviruses and ME/CFS

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 Phoenix Rising forums. Hip contributes multiple, important observations to the Phoenix Rising forum and his ideas are always insightful.

From Charles Shepherd:

"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."

From Hip:

"Hi Charles Shepherd,

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 astrocyte cells and the neural progenitor cells. 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.
See:
Viral Isolation from Brain in Myalgic Encephalomyelitis (A Case Report) 2001 J. Richardson www.oocities.org/vitamvas/viralfm.html 
Enterovirus in the Chronic Fatigue Syndrome 1994. McGarry F, Gow J, Behan PQ. www.ncf-net.org/library/enterovirusincfs.htm

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.

Hi Charles Shepherd,

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 here.

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."

Thanks again to Hip and Dr. Charles Shepherd

"ad astra per aspera" - Dr. John Chia's ideas taking hold

("ad astra per aspera" - "a rough road leads to the stars")

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 Patricia Carter of ME/CFS forums to thank for this. Another summary is by Dr. Charles Lapp. It can be found here. 

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.

From Patricia Carter's transcription of Dr. Komaroff:

"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. 

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." 

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.

And then there is this from Dr. Lapp:

"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 Journal of Clinical Pathology, 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!)"

It has been seven long years since Dr. Chia's important paper 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. 

"We need to declare EV as one of the causes of ME/CFS. It has been 30 years!"

"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."

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.

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."

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 Patrick W. Calvins' Quixotic blog. 

And then there is the recent very exciting news regarding new drugs for Hep C. One drug, Sovaldi, 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".

So there is some urgency here, and some real hope - but only if Dr. Chia's work is followed up on. 

Dr. Joseph Brewer and Mycotoxins, an update

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.

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 here. 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 Real Time Labs in Carrollton TX. 55 controls yielded no positives.

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.

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.

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".

In December 2013, Dr. Brewer, Thrasher and Hooper published a second paper on Mycotoxins and their connection to chronic illness - "Chronic Illness Associated with Mold and Mycotoxins - Is Naso-Sinus Fungal Biofilm the culprit?" In this study they laid out their case based on examination of existing literature, citing case studies.

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.

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 ASL pharmacy. 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.

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.

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.

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.

Three quarters of the patients treated had preexisitng sympotms of sinus problems. One quarter did not. Both segments showed equal improvement.

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.

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 an exciting presentation 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?

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.

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.

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.

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?

Mt. Sinai ME/CFS conference – November 20, 2013

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.

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.

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.

The speakers, limited to five, included clinicians and researchers.

The first speaker, perhaps the most dazzling (in the general sense), was Dr. Eric Schadt. If you want to be amazed, check out this talk from the last conference, recorded by my son Peter Cairns. 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 various immensely complicated networks of disease, 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.

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.

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.  

 

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.

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.

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.

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. 

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. Courtagen 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 Dr. Richard Boles, whom I had heard about several years ago from Dr. Joseph Brewer. 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.  

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.

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. 

By lunchtime, we had had two lectures – the amazing and the surprising. What could be a better start?

The remarkable Hillary Johnson, author of "My Mother Ruth", came to me in the middle of the conference and said that it reminded her of the Invest in ME 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.

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.

The lectures after lunch were directed towards clinical practice.

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.

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.

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 Neuroimmune Center at Nova University 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.

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.

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.

Lost in the shuffle of the last few years is the cytokine profile 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?

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 elsewhere.

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 Dr. John Chia’s 2007 study 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.

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), Robert Naviaux (metabalome), Patricia Kane (lipid membranes), John McClaren Howard (mitochondria, lipids), Marco Ruggiero (GcMAF) and others. 

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.

Marian Lemle asked a question about her hypothesis 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. 

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.

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.

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 a precious moment, 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.