Saturday, June 30, 2012


A preview of a new mitochondrial study by John McLaren Howard, Sarah Myhill and Norman Booth appeared in the past few days. The study can be found at In the interest of education and information sharing I am posting an older post on this team and their research into mitochondria and ME. 

From June 11, 2011: 
Recent events have gotten me to focus again on mitochondria and its relation to ME. None of the following is presented as medical advice or guidance. I am not a doctor and I do not want to be one. On the other hand, it is worth noting that those with ME are "on their own" when it
comes to medical diagnosis and treatment. The situation for ME sufferers is worse than the 19th century, when physicians at least would ply their trade.

Dr. Sarah Myhill's website, perhaps the most extensive ME website on the internet, has ample information on the critical role that mitochondria play in ME. It is a great starting point. Another informative article is by Dr. David Bell, and can be found in his Lyndonville News here. Dr Bell, an excellent clinician trying to find answers, has had a long-standing interest in the role of mitochondria in ME.

Various clinicians - Dr Joseph Brewer, Dr Sarah Myhill, Dr Paul Cheney - believe that mitochondrial irregularities play a part - perhaps a very large part - in ME/CFS. You can read an article by Dr. Myhill here. In this article Dr. Myhill outlines how mitochondrial failure plays such a very big role in ME. (Incidentally not everyone has caught on to this idea.)

Dr. Myhill collaborated with Dr. John McLaren Howard and Dr. Norman Booth in an important study published in January 2009. This paper, which can be viewed here, was presented by Dr. Booth at the IACFS conference in Reno, NV in 2009. A short article on these three researchers is available here.

Dr. John McLaren Howard is a real unsung hero in ME research. Dr. Howard co-founded Biolab in London (with Dr. Stephen Davies). Prior to retiring from Biolab a few years ago, Dr. Howard pioneered some very important testing in the area of mitochondria and ME. He has continued to do these tests at Acumen lab in Cornwall. His son Mark continues to work as Manager of Biolab.

Dr Myhill's website gives a good explanation of what Acumen is looking for in their testing.

The test itself is relatively easy to do. I believe my daughter was the first person from the US to do this test, back in 2007. In crude terms the test measures ATP function (the rate at which it is recycled into cells) and the efficiency with which ATP is made from ADP. Further testing looks at various blockages to the transport of ATP and ADP. Here is an example of an ATP results page:

The blood test requires one heparanised and one EDTA tube, shipped ambient via Fedex to Acumen lab in the UK. USA Fedex shipments have to be sent to Acumen labs, c/o Cameras Plus, 17A Gold Street, Tiverton, Devon UK EX16 6QB. The samples have to be shipped "international priority" which will get them to Dr. Howard in 48 hours. They need to be shipped in an insulated pack with the proper paperwork. Fedex will help with the international shipping label. They will not help with the packaging in any way. A triplicate copy of an international waybill needs to be filled out in a specific way, the process of which can also be learned through the Fedex site. If the blood is drawn into the correct tubes, if the shipment is packed according to international Fedex procedures, if the paperwork is filled out properly, the sample will breeze through customs to Acumen labs in a timely fashion. Some care has to be taken in these matters.

The test can be done through Dr. Myhill. She will write a particularized summary that is very useful. She has seen hundreds of these tests and works closely with Dr. Howard.

Rich van Konynenburg's thoughts (always welcome) on mitochondria and ME can be seen on the Phoenix Rising forum. This ME/CFS information site was founded by Cort Johnson. This website provides us all with much needed information and connections - and is an ongoing, necessary resource. Not a day goes by that I do not read it.

The big question is, once the specific mitochondria problems are identified, can these deficiencies be rectified? As with all matters with ME, the proof is in the pudding. It is trial and error - but at least the patient has a target, and a means of measurement and tracking. Many people have been helped by this test and its targeted treatment.

Is it possible that such sharp and diverse minds as Myhill, Cheney, Howard, Booth, Bell, and Brewer can be gathered around a subject - mitochondrial failure - and that there be nothing there? No, I do not think so.

The interesting thing about mitochondria dysfunction or illness in general is that it is viewed as a disease - as opposed to ME, which is viewed as nothing. At the moment there is broad attention being paid to mitochondrial diseases and mitochondrial dysfunction, and this reality opens up an entire area on to which ME might be able to piggyback. One of the greatest hopes for ME patients is that something will slop over from another research area - HIV, cancer, mitochondria, MS, stem cell - and inadvertantly land in the lap of ME.

Several national mitochondrial disease websites can be viewed here and here.

The proposed intervention, tailored by the physician to the particular needs of the patient, revolve around what is know as the "mitochondria cocktail". Dr. Myhill stumbled upon mitochondria support through the research of Dr. Stephen Sinatra, the American metabolic cardiologist. The mitochondrial cocktail consists of various supplements. These include NAD, Co-Q10, d-ribose, carnitine, Idebenone, b2 (riboflavin), b1 (thiamine), creatine, and magnesium and b12 injections. A good webpage that covers some of these supplements is this Medscape article. Each patient's cocktail is particularized - either by a physician or by trial and error. The experienced patient, whether with lyme or ME or both, will be able to tell what works for them, and what doesn't, thus devising their own balanced protocol.

Sunday, June 10, 2012

One Voice - Dr Joan Grobstein's written testimony for CFSAC, June 13, 2012

The following is the written testimony of Dr. Joan Grobstein for the upcoming CSFAC meeting this week in Washington DC. Dr. Grobstein will be offering her verbal testimony on Wednesday June 13, 2012. Dr. Grobstein has testified in front of this committee for a number of years now. A video of her testimony in 2010 can be found here.  Please note that there is a disclaimer at the end of her written testimony. 

CFSAC June 2012 Written Testimony
Joan Grobstein, M.D.

This is a very hopeful time in the history of Myalgic Encephalomyelitis and the mis-named Chronic Fatigue Syndrome.  I will call this disease ME/CFS, for lack of a better term.  Despite many obstacles, we have come a long way in the past few years, and the way forward is beginning to become clearer.  We now have most of what we need to make significant and rapid progress.  We have a workable definition.  Thanks to researchers at the Pacific Fatigue Laboratory and the University of Utah, we have two measures of the most characteristic and disabling symptom, post-exertional malaise and exhaustion.  We have information about several treatments that are not only effective in at least some patients, but also help to clarify the etiology or etiologies of the disease.  Rituximab and antivirals as well as less well-studied but effective treatments have changed the game.  We can begin to imagine a future very different from our past, a future where patients will be quickly diagnosed and presented with a choice of therapies based on solid evidence of efficacy.

            What is holding us back from this brighter future?  What we are lacking is support from the scientific and medical communities and from our government.  We need to change our current reality.  In order to do this we must step back from gazing at our bright future and re-enter the darkness of our past.  We need to examine the scientific and medical arms of our government and challenge them to make necessary changes based on the information that is now available.

            What is our current reality and what could be our future?  It is best to examine our current obstacles agency by agency, acknowledge the past reality and look for a way forward.


            The CDC has created two definitions for this disease which effectively make it impossible to study.  The empiric (2005) definition has been shown to be so flawed that even the CDC appears to have abandoned it, although they are still spending scarce research dollars to try to justify it.  Briefly, that definition is overly broad;  it includes many people who do not have ME/CFS, so any research is unlikely to come up with significant conclusions about people who do have ME/CFS.  The more commonly used Fukuda (1994) definition also has at least two significant flaws:  it does not make the cardinal symptom, post-exertional malaise, mandatory for the diagnosis, and it requires patients to be sick for at least six months before diagnosis.  This is like an insurance company sending an adjustor to the scene of an accident six months after the accident occurred.  There will be no evidence that the accident occurred, so it will be easy to deny coverage for an accident that never occurred.  Because of the Fukuda definition it is unlikely that a single pathogen, if it exists, will ever be found.  It is also unlikely that a toxic cause for an immune deficiency could ever be found, because a toxin will likely disburse in six months.  The Canadian Consensus definition and the International Consensus definition are both acceptable definitions.  The empiric and Fukuda definitions are not acceptable definitions.

            The CDC has recently arranged a series of phone conversations with advocates.  One of the stated goals of these conversations was to increase a sense of trust between the CDC and the patient community.  There are many reasons that patients do not trust the CDC, not the least of which is their failure to adequately investigate past outbreaks.  If the CDC continues to use the empiric or the Fukuda definitions it is highly unlikely that any outbreaks will be reported or investigated.  There is evidence that outbreaks are continuing to occur, at least in families but probably also in communities.  However, because of inaccurate definitions, people are not getting diagnosed with ME/CFS for at least six months, if at all.  By the time they are diagnosed any chance of finding the original pathogen or toxic exposure (the most likely causes of geographic outbreaks) is gone.  If the CDC wishes to regain the trust of the patient community they must abandon the Fukuda and empiric definitions.  We cannot “agree to disagree” on this issue, as Dr. Unger has suggested.  The CDC is still spending our tax dollars on studies to justify these definitions.

            Another way for the CDC to regain the trust and respect of the patient community is to adopt the Canadian Consensus definition of ME/CFS (or the similar International Consensus definition) and to use it to begin doing the epidemiological, longitudinal and laboratory research that is necessary to address the massive personal and financial cost of this disease to the American economy.

            The CDC is also spending very scarce research dollars on studies that have no possibility of helping patients or protecting communities from this disease.  Rather than working to discover what is helping patients to recover or where the sickest patients are, the CDC is spending money to document that people who feel very sick are not particularly interested in card games.  This would be laughable, if we could ignore the people with ME/CFS who are unable to leave their homes and are receiving no medical care at all and no help from CDC research.  The CDC should be spending its money (our taxpayer money) on epidemiological and longitudinal studies that can lead to diagnostic tests and therapies and that can protect our communities against this disease.  That is their mission.

            What can the CFSAC do to facilitate more effective research at the CDC?  It can ask for semiannual reports of what projects are ongoing at the CDC and what are the budgets for each.  In 2009 one of its recommendations stated that “the CFSAC rejects the empirical case definition”.  It is vitally important that it repeat this recommendation and emphasize to the Secretary that the Canadian and Consensus definitions are far better definitions than either the empiric or Fukuda definitions.  There is no time to waste continuing to use faulty definitions.  These definitions are damaging to patients.  Finally, it can ask to have input into a new 5 year plan for the CDC which includes epidemiological and longitudinal studies.

            In addition, the CDC website continues to disseminate false and misleading information to physicians and the general public.  CFSAC should ask that the Toolkit be removed from the website immediately.


            The NIH funding level for this disease is 5 percent of the funding level for multiple sclerosis, a disease which affects half as many people as ME/CFS.  There should be a Request for Proposals with a dollar amount attached that is at least equivalent to the amount spent on MS.  There are several obvious studies that need to be done right away.  The Lights have received funding to continue their study of gene expression changes associated with post-exertional malaise.  Other laboratories should be funded to attempt to reproduce their findings, with the goal to develop and validate a diagnostic test.  In addition, money should be available to the Pacific Fatigue Laboratory to validate a second diagnostic test, and there should be an additional study to see if these two modalities correlate.  Dr. Lipkin is funded to look for a single pathogen, but funding should be made available to examine the possibility that more than one pathogen may act synergistically to initiate this disease.  We also need studies to see how orthostasis is associated with post-exertional malaise.  Can the Lights gene expression changes be seen after prolonged standing rather than exercise?  Following the success of rituximab therapy in some patients, it is also obvious to look again at the immune system and try to figure out why rituximab works.  In addition, cognitive dysfunction is one of the most disabling aspects of ME/CFS.  Can cognitive dysfunction be correlated with orthostasis, post-exertional malaise &/or viral infection?  These possibilities are only the beginning.  There are numerous other questions that must be studied, remembering that results will only be interpretable if the patient population is appropriately defined.

            The grant review process for ME/CFS at the NIH needs to be improved.  It is hard for anyone outside the scientific community to fully appreciate the problems in this area.  However, it is clear from comments made at CFSAC meetings by multiple researchers, many very experienced, that the process is not functioning well.  An inquiry by the leaders of the NIH into why this is happening and how to make improvements is necessary.

            ME/CFS does not belong in OWRH.  It is not a “woman’s disease”.  It should be housed in one of the Institutes, probably NIAID or NIND.  Again, direction and involvement are needed from Dr. Collins and the leaders of the Institutes to find the best place for ME/CFS research to be centered.  There are certainly other multi-system diseases studied at the NIH that can serve as examples.

            Accountability for funding of ME/CFS projects at the NIH needs to be improved.  Pat Fero and Charlotte von Salis have found evidence that somel money allocated for ME/CFS is actually being used to study other diseases.  Of course, this is not acceptable, especially given the relatively small amount allocated to ME/CFS research. 

            What can CFSAC do to promote a more effective program for ME/CFS at the NIH?  Ask for reports at every meeting on the number of grants, the amount of money allocated and the topics studied.  Convene a panel of people who have experience with the NIH grant process to make recommendations about the ME/CFS grant process and make sure that the recommendations are implemented.  Make sure that the NIH has a process in place to ensure that funding for ME/CFS is actually being used for ME/CFS projects.  Ask for a specific, appropriate allocation of funds.  Insist that responsibility for ME/CFS be housed in one of the Institutes, and that the highest officials at NIH be involved in and committed to the decision about which Institute is appropriate.  Finally, the NIH must insist that all funded studies use the Canadian Consensus or International Consensus definition.


            There is apparently only one drug currently under consideration for the treatment of ME/CFS at the FDA, and it has been under consideration for several years.  Part of the problem has been the definition of the disease, which has made it difficult to demonstrate positive benefits from drugs.  It is important that the FDA insists that the Canadian or International Consensus definitions be used in drug trials.  It is also important that the FDA expedite approval for diagnostic tests as they are developed with NIH funding.

            One of the obvious problems at the FDA is that ME/CFS has been placed in six different divisions over the past several years.  This has meant that no division has developed the expertise to properly evaluate therapies, diagnostic tests or devices for ME/CFS.  Like at the NIH, involvement at the highest levels of FDA is needed to find an appropriate, permanent place for issues related to ME/CFS.

            FDA action is dependent on the activity of researchers funded by the NIH, CDC and other groups who find possible therapeutic agents and diagnostic tests relevant to this disease.  FDA needs to be prepared to handle requests for evaluate them.  CFSAC can encourage preparation by insisting that the FDA use an appropriate definition in its evaluations and have a process to expedite evaluations.  ME/CFS patients have been waiting for a very long time.

Other Issues

            It is very important that the CFSAC provide input about the new DSM-5 criteria.  I am no expert on this matter and cannot speak about it in any informed way.  I I refer you to Mary Dimmock and Suzy Chapman, who understand this issue .  I urge CFSAC to formulate an appropriate comment about the DSM-5 as one of your recommendations at this June, 2012 meeting.  This is very important to patients.

            It is important to note that CFSAC itself has significant problems at this time.  According to the website there are four vacant seats on the Committee, including the post of Chairman.  This is a huge problem.  Without a Chairman who is communicating with the Secretary and with Dr. Koh?  How can there be any continuity or institutional memory of all that patients and other experts have taken the trouble to communicate to the Committee if seats are unfulfilled?  There could be four additional experts providing input to the Committee?  Who is responsible for ensuring that there are a full complement of members.  At this point, it is hard to believe that there is any commitment on the part of our Government to provide or listen to advice about ME/CFS.

            In addition, it is important to note that the process involved in attending meetings and submitting testimony is getting more opaque and difficult for patients.  It is inherently difficult for patients to attend meetings, and it behooves the staff to make it as easy as possible.  The meeting this time is one month later than usual, and there was very late notification of how and when to submit testimony.  There was inconsistency and confusion about the date for testimony submission.  The agenda was not posted by the promised date of June 4, 2012, making it difficult for patients to make plans.  When I notified the staff that I intend to attend the meeting I received no acknowledgement, despite information that seating would be limited.  I also received the following instruction about the meeting: Any object carried by the visitor that is deemed inappropriate will be confiscated and disposed of by the security staff (italics mine).  I asked for advice about what objects would be considered “inappropriate” and have received no reply.  This appears to violate my constitutional right to protection from unreasonable search and seizure.  This is hardly a friendly atmosphere for an exchange of ideas between a government and its citizens about a serious disease.

            I started this testimony with the idea that this is a time for hope.  However, it is not surprising that patients and their families feel quite discouraged at this point.  It seems as though we are still dealing with many persistent problems:  despite the State of the Knowledge meeting, which occurred more than a year ago, total NIH funding for ME/CFS continues to be much lower than diseases with a similar impact on quality of life.  The number of studies funded is also low.  There is no plan for progress, no consensus on what are the most promising avenues for study.  While patients with the means to get to a doctor who offers effective therapies  are quite likely to improve now, many patients still struggle to even get a diagnosis and cannot find a knowledgeable doctor or cannot get to one or cannot pay for one. 

            Why is this?  We don’t have the information we need to develop an approach to ME/CFS that can be taught to large number of doctors.  There is no support for clinical research.  The doctors who are beginning to know how to treat this disease have no funding for data collection.  They are inundated with patients.  They have waiting lists that are years long.  They have no time to publish their findings, and no financial support to do so.  Where is our government?  Where are our scientific and medical leaders?

            Progress in the diagnosis and treatment of ME/CFS is within our grasp.  We have the tools, foremost among them diagnostic criteria, diagnostic tests and effective therapeutic agents.  It is time to move forward.  Thank you for your dedication to the effort to improve the lives of people with ME/CFS.


"I am posting this testimony, because there has been little 
information available about the upcoming CFSAC meeting. In the 
testimony I say that the CFSAC hasn't announced the new members and 
Chairman or the agenda. That was true when I wrote it--there was 
nothing on the website until shortly after the deadline for submitting 
written testimony. All of the information is there now. CFSAC did 
not adhere to its own stated deadline to post the agenda by June 4. 
This failure made it impossible for people to respond to the specific 
issues on the agenda in their written testimony. Also, we have no 
information about what expertise the new members bring to CFSAC, so we 
don't know how much we have to educate them to bring them up to speed.

My testimony, as always, does not address all the important issues. 
There is not enough room in five pages of written testimony, or in 
five minutes of oral testimony, to address all the issues. By posting 
this testimony early on the internet, it is my hope that other people 
who may be providing testimony in person at the meeting will be able 
to elaborate on these thoughts and/or address other extremely 
important areas of concern. Because the definition issue is an agenda 
item on the afternoon of the second day, I think it is important that 
everyone who provides testimony in any form include at least a simple 
statement that both the empiric and Fukuda definitions are not 
acceptable definitions, and that patients support the Canadian and 
International Consensus definitions."

Tuesday, June 5, 2012

InvestinME conference June 1, 2012

On Friday, June 1st, I was up early on a fine London day. It was the day of the 7th annual InvestinME conference. My hour-long early morning walk down through Green Park, St James Park, past the Horse Guards and along Birdcage Walk to the conference venue was exquisite. It gets me focused on what is to be a long day of intense listening and looking.

Some of the speakers at the InvestinME conference were familiar faces; some were not.  Several of the new ones came from fields outside of ME/CFS, an attempt by the organizers to draw connections to other areas of research.

The focus of this year’s conference was “Is ME/CFS an autoimmune illness?” The focus on autoimmunity stemmed from the work of Dr. Oystein Fluge and Dr. Olav Mella with Rituximab. Rituximab rules the day - although there were also other hopeful signs in research.

I will focus on a few of the presentations, knowing that full information will shortly be available in the form of a DVD of this conference. InvestinME sells this DVD at an affordable price and tries to get it as widely dispersed as possible.  They want to get this research out there.

Early in the day, Dr. Sonya Marshall-Gradisnik gave a fascinating talk entitled “Current Knowledge of Immunological Biomarkers in ME/CFS”. It focused on her work with NK cells. She works with a group at Bond University in Australia. Dr. Marshall-Gradisnik is a collaborator of Dr. Peterson with Simmaron. Her important research papers are listed here. Her lecture reiterated the litany: low NK cell numbers and function, low perforin, and a decrease in NK lysis in ME/CFS. Much of her study involves looking a t-regulatory cells and taking a further look at gene expression. She mentioned that some of her findings might point to autoimmune problems in ME/CFS. Further work is being done to come up with a marker for ME/CFS. She emphasized that her work is directed towards developing a combination of immunological markers.  She did say that NK cell function does not correlate with severity of illness. It occurred to me that Dr. Marshall-Gradisnik should be connected to Dr. Miriam Merad at Mt. Sinai ME/CFS Center, who also works in Immunology – and I made the suggestion.

Of the two Norwegians, Dr. Mella spoke first, outlining the Rituximab study published in fall of 2011. This study was first presented at the 2011 InvestinME conference, and Dr. Mella did us the favor of giving his presentation of the study again. This initial presentation gave Dr. Fluge the platform on which to build  - and to speak of more recent research.

Dr. Fluge gave new information on finding maintenance doses for patients on Rituximab, as the effects of the drug go away over time. They are running an open label maintenance trial for 28 patients, including patients from the first placebo group.  He showed a number of slides of different particulars in doing this. Most of this information continued the positive flow of the use of Rituximab in this patient population.  Dr. Fluge does not know why these patients relapse, but he wants to find out. They also want to find out why there is latency between treatment and improvement. A separate small pilot trial with five severely ill patients has encountered its own set of problems, many involving logistics of delivering the drug to this very sick patient group. Dr. Fluge also indicated that these patients might very well benefit from some sort of pretreatment prior to being given Rituximab. Dr. Fluge also mentioned a trial for non-responders with Etanercept.

The great hope of Dr. Fluge and Dr. Mella is that they will be funded for a larger trial of 140 patients and that they can gather more information.  Dr. Mella and Dr. Fluge will publish some studies after this summer. They have done a lot of experiments on immune measurements, autoimmunity and so forth. Some of the work shows negative finding and this too will add to the picture. Their general attitude is very upbeat and they are hopeful that further research will offer more answers.

They have no further proof that ME/CFS is an autoimmune illness. This supposition remains a theory and they are working hard to prove it – or to find out what other mechanisms might be driving the success of Rituximab. Another possibility, advanced by Dr. Kogelnik, is that the b-cells might be harboring EBV and that this viral load is lowered with Rituximab. Dr. Kogelnik is using Rituximab with antivirals, mainly Valcyte.

Dr. James Baraniuk has his own way of talking and it is very good – and amusing. Dr. Baraniuk returns from last year and this was good to see. He is another researcher with big ideas, and will only be restrained by diminished resources. Fortunately Dr. Baraniuk seems to be grinding along, doing what he does best – research. His research publications can be found here.  Dr. Baraniuk works on proteomics. His talk covered various aspects of the brain and migraines. He spoke of treatment with triptans. He spoke of “central sensitization” and emphasized that the dorsal horn of the spinal cord central is essential. He referred to areas where we find the ultimate lesions in ME/CFS and the loss of white matter in the brain stem. He spoke of a cascade- an inability to organize sensations. He stated that “default mode pathway” (zoning out) would play a part in this illness. Dr. Baraniuk works quietly away, and one suspects he has the capacity of hitting a homerun with his research.

Dr. Dan Peterson gave his usual fine talk. His objective was to point out the various research projects initiated in the last year. Certainly the Rituximab research is exciting - but there are other things going on, and Dr. Peterson listed them.  While emphasizing that many of the issues of the past remained unresolved – etiology, for instance – many other things are changing. He emphasized the increase in positive basic research and acknowledged that "a silver lining has perhaps emerged from the black cloud" of ME/CFS research of the past year. He pointed out the benefits and drawbacks of translational research concepts. He reviewed all new research projects in the last year, casting a great veil of optimism over the situation. The first study he described was the Lipkin XMRV study, mispronouncing Mikovits name several times in the process. This study's results are to be released June 30th. The results are a forgone conclusion.

Next Dr. Peterson mentioned the CFI’s pathogens discovery project, revealing the difficulties in gathering samples and information in this type of study. This was an enlightening moment to me, learning more about the nightmare of complex “designed” studies. The third study presented was the Bond-Simmaron NK cell pilot study, to which he is directly attached. The fourth was a CFIDS Association research projects. He went though all five projects of the “Research Institute without Walls”. The last project that he mentioned was the CASA project of the CDC.

In his overall thrust, Dr. Peterson is quite correct: this is a heady time for ME/CFS research.

I was surprised that he did not include the new ME/CFS research initiative at Mt. Sinai. This research center under the guidance of Dr. Derek Enlander includes Ila Singh, Miriam Merad and Eric Schadt.  For sure, Dr. Peterson is aware of this project, so it’s non-inclusion was a point of interest to me.

The big surprise for me in this conference day was Dr. Andreas Kogelnik.  Dr. Kogelnik’s name first surfaced in his working at Stanford with Dr. Jose Montoya on the Valcyte Roach trial. He holds degrees in medicine and in bioengineering/bioinformatics.  It seems that we don’t need to worry about this fellow’s academic qualifications.

A few years back, Dr. Kogelnik opened the Open Medicine Clinic in Mountain View, CA, and his clinic has collaborative relations with several local hospitals. At his clinic, Dr. Kogelnik is very aggressive in research and treatment - and he has a clear, though flexible, direction. At the moment he is doing a small pilot trial with Rituximab to see if he can get positive results. He is also using Valcyte and has plans for other studies. He noted the recent published trial on Ampligen and hopes that the CDC might be turning the corner with this additional treatment.

The first thing that struck me about Dr. Kogelnik is that he is very young for an ME/CFS clinician. Most of these personalities are older folk, so it is good to see a younger clinician/researcher being so active, confident and aggressive. He is what you could call a welcome new face. He does not seem to be inhibited by the larger problems in the ME/CFS world and is intent on keeping his eye on the ball and moving forward. Much is expected of him and let us hope for the best.

Dr. Kogelnik generates a huge sense of optimism. He believes that the “mainstream is getting interested” in ME/CFS research. He thinks that the biomedical and treatment possibilities are reaching a critical mass. This was the general feeling from a variety of participants in this conference. It is certainly true that there is, emerging from the downfall of XMRV, a high and broad level of research. Whether it will disappear into the pit of all previous disconnected, discombobulated research, we will see in time.

Perhaps the most intuitive thing that Dr. Kogelnik has done is to collaborate with Dr. Peterson. These two have formed a close and warm collaboration. Drawing on the resources of an older, experienced clinician/researcher is a natural and savvy move. It also indicates that Dr. Kogelnik is not overly hubristic, and has enough sense to learn critical matters from another person. I am sure it has great benefit to Dr. Peterson also, who must, about this time, be looking for some "continuity into the future" for his work and experience.

In fact, the entire direction of the Open Medicine clinic is towards outreach and collaboration. Their attitude is inclusive; they want to bring people in. The clinic wants to do studies and accumulate data to share with other institutions. (Somehow this all sounds familiar.) Dr. Kogelnik gives every indication that he will carry through with this. With collaboration and inclusion in mind, Dr. Kogelnik is sponsoring an invitation-only research meeting in NYC in June. While the agenda of this meeting is not published, the subjects can easily be nosed out.

A few more thoughts:
It is always surprising that so few Americans go to this conference, and/or that so little attention is given to InvestinME in the United States. It makes no sense to me. This conference is the place to be if you want to learn what is happening in biomedical research into this illness.

Two other ME/CFS clinician/physicians have indicated to me privately that they both, and separately, have come to understand the etiology of this illness. I present this to suggest that there are additional things happening. Hopefully there will be publications.  

The most interesting thing for me about these conferences is meeting patients and patient advocates. Many of both are in attendance at these InvestinME conferences and they play a big part in its success. The patients and advocates have a reality about them that is very special, and to come into contact with them is like an epiphany for me.  They harbor certain undiluted truths, and, frankly, too little attention is awarded to their experience and knowledge. Often at these conferences, the clinician or researcher seems to be in ascendance; they are the “Important Personages”, and often they have difficulty “dropping the mantle”. But I know better. It has long been my feeling that many ME/CFS physicians have no real idea about this illness and its devastations. Often they remain in a self-protected mode, hunkered down in their little groups. (Certainly there are exceptions. I saw Dr. Kenny De Meirleir today. He came in, rolling his little bag straight from a trip to Australia, Later this week he is off to Norway, where, among other things, he will visit severely ill patients.)

In contrast to this is the reality of patients and advocates, who are at ground zero of this illness - and it shows in their grace, humility, intelligence and shared values, acquired through living very close with this horrible illness. Each is inching, often on their own, towards betterment. It is a privilege to meet these people at this conference, where their attendance is encouraged and their participation is critical.

In the future I would like to see a conference devoted entirely to treatment, attended by clinician and clinician/researchers (no pure researchers). I would like to see a large group of physicians wrestle together over the efficacy of present treatments, of which there are many. There is great need for a general treatment protocol, particularly for newly diagnosed patients. Such a conference could also focus on pilot studies of treatments that might be useful and form the basis for the accumulation of data. I believe there is a great amount of clinical experience that could make a meaningful consolidation of treatment options. Of course, egos would have to be checked at the door – but is this possible? The NIH, of course, should have done this many years ago, but they have declared that they are “indifferent” to the fate of ME/CFS patients. They have failed this patient community, so it is going to depend on private resources to move forward with treatment.

A report on the conference from InvestinME can be found here

Saturday, June 2, 2012

InvestinME roundtable discussion - May 30-31, 2012

Each year more and more science on ME/CFS comes out of the InvestinME conference in London. This conference is the brainchild of Richard and Pia Simpson. They started InvestinME in order to elevate serious biomedical research into this illness and to combat the vicious political efforts to minimize or destroy the physiological underpinning of this illness.

What these two individuals have accomplished in seven years is truly astonishing. How these two individuals have been able to bring this to fruition is beyond comprehension. I cannot see how they are able to do what they do. Clearly, it is a labor of love - and year-by-year, it is bearing fruit.

Much of the success of this conference stems from the fact that it is organized by individuals directly "attached to the illness". The inspiration comes from deep down, from the heart - and this conference has none of the trapping of other or larger ME/CFS conferences that are managed by the government (in US) or “professional” organizations that have constituent groups to please. InvestinME is interested in one thing: serious biomedical research into this nasty illness called ME/CFS. They will do anything necessary to facilitate this happening.

In its seventh annual conference in London on June 1, InvestinME found its sharpest focus yet. Having attended five conferences, this fact was quite apparent to me.

In the past few years the conference has expanded beyond the intense one day of presentations. In 2009 they added a dinner with a guest speaker. This allowed for more informal discussion amongst participants. The 2009 dinner featured a talk by Hilary Johnson entitled "The Why" - A Speech in London. Those of you who saw this talk will remember it. Hillary is such a fine writer. Those of you who want to read a terrifically emotionally compelling book should buy her second book -My Mother Ruth. It is really, really good.

Later, or simultaneously, a day-before afternoon brainstorming session amongst presenters was added. These events allowed for a rich exchange of ideas on various ME/CFS scientific subjects. The organizers' idea was to put serious researchers in a room and let them go at it. This and the dinner provided expanding social interactions amongst participants, allowing for more informal exchanges of ideas and inclining people towards forming collaborations. Often it is in such settings that connections are made and scientific relationships are forged – provided that the participants are open to such exchanges. InvestinME does everything they can to make this happen, seeking out “like-minded” individuals, those willing to engage this complex illness in an interactive fashion. A great example of this is Dr. John Chia, who was invited back this year but felt he did not have enough new data to present. InvestinME is an inclusive organization. They want to bring people in.

Over the last two years, this pre-conference format has been expanded, and this year there were two full days of private discussions amongst the participants and invited guests. These scientific discussions focused on ME/CFS as an autoimmune illness, an idea that was generated by the Norwegian Rituximab study of one year ago. The Clinical Autoimmunity Working Group included the conference participants as well as some of the very best in the field of immunology and autoimmunity.

The CAWG included Dr. Don Staines, Dr. Dan Peterson, Dr. Andreas Kogelnik, Dr. James Baraniuk, Professor Hugh Perry, Professor Maria Fitzgerald, Dr. Sonya Marshall-Gradisnik, Professor Indre Ljungar, Dr. Mario Delgado, Dr. Oystein Fluge and Dr. Olav Mella. Also attending were Dr. Noel Rose, Director of Autoimmune Disease Research at Johns Hopkins, and Professor Stephan Miller. Brief profiles can be seen here.

Several of the immunology/autoimmunity invitees had no previous experience with ME/CFS. The idea was to draw on their rich experience with autoimmunity and to try to find connections to ME/CFS.

The pre-conference dinner this year was attended by about 40 invited guests. In a very moving moment, a candle was lit in memory of a 19-year-old Norwegian woman with ME/CFS, who had recently died in her sleep. Following the candle lighting, Norwegian journalist Jorgen Jelstad gave a quietly firm and inspiring talk about the importance of words in describing, depicting or characterizing this illness - "Words Matter".  Hopefully, copies of this speech will be available to others. His talk had the great theme of optimism to it. Jorgen has written a book in Norwegian on ME/CFS entitled “De Bortgjemte” (The Hidden Ones).

To me it seemed as if Jorgen Jelstad picked up and amplified the reverberations that were circulating in the dining room that evening - and that were equally on full display at the conference the next day. Optimism ruled the day in a way that I have never seen before. The message that was brought forth over and over is that serious ME/CFS research had "turned a corner" and good things are going to happen in the near future. A talk by Dr. Dan Peterson the next day emphasized this point. 

This type of research meeting sets a very important precedent, one that needs be continued - and it will be. Several other such efforts in the past have died on the vine, and this is very sad. This heightened InvestinME effort is a breath of fresh air.

It has come to my attention that Dr. Andreas Kogelnik is sponsoring a private research discussion in NYC in June on various important matters in ME/CFS treatment and research. I am sure that there will be some public mention of this exciting event. It is also expected that the Mt. Sinai ME/CFS Center will be holding another conference this year, and maybe they too will adopt this format of concentrated private discussion among “like-minded” people. In this fashion, things might actually happen, and we can avoid some of the pitfalls of the past.

It should not go unnoticed that two very fine writers - Hillary Johnson and Jorgen Jelstad - have bookended these recent InvestinME conference dinners. We can speak of heightened and serious research and that is very good. But we cannot forget the voices that guide us, guide us emotionally through this torn landscape, delivering inspiration, direction and, most importantly, the history of this very serious illness. Great thanks needs to be given for these voices.