Thursday, May 19, 2011

Statement for InvestinME

Unfortunately, because of circumstances, I am unable to attend the InvestinME conference taking place May 20, 2011. I was asked by Invest in ME to write about the current ME/CFS situation in the USA. The following is my contribution that was presented in the conference brochure. I did not really have enough time to thoroughly work on it so I would welcome any additions or improvements that others might like to add in the comments section. It is worth reminding the reader how very important this conference is and how much direction comes out of the efforts of the directors of InvestinME including Richard and Pia Simpson. If one wants a prototype for an ME/CFS conference, here it is.

Statement:

A month ago President Obama was asked a question about Chronic Fatigue Syndrome at a news conference. The question came from Courtney Miller, the wife of CFS advocate and patient Robert Miller. For one second, ME/CFS hit the big-time. Obama answered that he had heard of Chronic Fatigue Syndrome but "did not know much about it". He said, "he would look into it". If Obama has heard of CFS, no doubt it was from Senator Harry Reid of Nevada. If Obama sincerely wants to know more about CFS, he only needs to ask his friend Senator Reid. Senator Reid was instrumental in the formation of the Whittemore Peterson Institute in Reno, Nevada. Senator Reid is the best friend of ME/CFS in the US government.

In the last year and a half, the patient voices of ME/CFS have become more spirited, consolidated and articulate. This is a very important development. This elevated collective voice can be seen in many blogs, posts, message boards and advocacy groups. Significant among blogs are those of Mindy Kitei (cfscentral.com) and Jamie Deckoff-Jones (treatingxmrv.blogspot.com) and XMRV Global Action Facebook page (http://www.facebook.com/pages/XMRV-Global-Action/216740433250). There are many worthy blogs and voices. Forums on phoenixrising.me and mecfsforums.com have many strong and clear voices. To be further convinced of the strength of these patient voices one only needs to read the current testimonials of ME/CFS patients that will be presented on May 12, 2011 at the CFSAC conference. All this increased vocal and written activity can be directly attributable to the WPI and their effort to find a cause for ME/CFS. The publication in October 2009 of an association of the retrovirus XMRV with ME/CFS ignited a broad and increased interest in this illness. The publication of this fine study stirred great interest, one that went way beyond the particulars of XMRV. The paper was a real jolt - and with ongoing repercussions.

In the past year, Amy Marcus of the Wall Street Journal and David Tuller of the NY Times each have written a series of articles on ME/CFS and on the scientific struggles that surround the association of a retrovirus (or virus) with this illness. In doing this both of them have painted a broader picture of the devastation of this illness. These articles have had nationwide coverage in the United States, and have brought ME/CFS to a higher consciousness for many people. These articles and this coverage of ME/CFS can also be directly attributed to the efforts of the Whittemore Peterson Institute. The October paper has fueled a discussion on the cause or potential cause of CFS/ME that has never been seen before at this level. Lombardi and Mikovits raised the stakes.

Meanwhile the battle over XMRV continues. In the larger picture, XMRV is a detail. The battle really is about another issue - and it is a furious fight to the death. The issue centers on whether ME/CFS is either directly virally induced or an immunological problem that is virally induced. For 25 years there have been great efforts to sink any association of ME/CFS with viruses, (or bacteria, for that matter). Very few people have been looking for such a cause, but very many people have made great efforts to squash any viral cause association. One would have to wonder why? What is the real issue here? It is difficult to comprehend. Do these people just have an individual stake in their absurdities or are there larger forces at work here? Why is there so much hostility towards this disease and the patients who suffer from it? Why is there so little research into the illness and into potential treatments, some of which are currently available?

The recent NIH State of Knowledge conference did very little to advance anything meaningful. A number of government and academic scientists did meet in the same room and exchange ideas - which are always a good idea. However, the NIH meeting itself came to no conclusions, no attempt was made to put the pieces together, no plan was made for future research to address gaps in our knowledge (as promised in the introduction to the meeting) and most importantly, no funding for research was proposed. All of this has to be seen as "by design" - or incompetence. More can be read about this on my blog, cfspatientadvocate.blogspot.com, with particular attention to the longer report that was actually not written by me.

One recent positive sign involving the government was the presentation of Dr. A. Martin Lerner at the October 2010 CFSAC Science Day meeting. Dr. Martin Lerner was invited to make a presentation on his treatment data involving antivirals in selected ME/CFS patients. I believe this was the first time that the government sponsored a talk on a potential treatment for a subset of ME/CFS patients. However, neither the HHS nor the CDC has recommended Dr. Lerner's treatment for any patients, continuing their position that there is no known cause for this illness and no known treatments.

While it is clear that the surge in articulating the seriousness of this illness can be attributed to the WPI, Judy Mikovits, Vincent Lombardi, Annette Whittemore and others, this is not to say that important research and treatment are not ongoing in other areas of the United States.

Various long-term ME/CFS clinicians have continued the struggle to understand this illness and what might work as treatments. Their good work has continued. This includes the practice of Dr. Dan Peterson, who recently made a presentation in Calgary. Dr. Peterson continues to work with some success with the drug Ampligen, as do Dr. Charles Lapp and Dr. Lucinda Bateman. Hemispherx sponsored an important conference on Ampligen in ME/CFS, detailing new studies and attempts to increase efficacy of the drug. Dr. Paul Cheney continues to work on his own treatment protocol, sharing treatment and research ideas with other clinician/researchers, including Dr. Kenny de Meirleir - and also the WPI. Dr. Cheney is doing experimental work with GcMAF and also with Stem Cells. Dr. Joseph Brewer has been working with HIV, ME/CFS and Lyme patients for many years and is interested in new treatment protocols, examining in particular biological associations between CFS and HIV patients, looking for commonalities. Dr. Brewer, too, is interacting with others. Dr. Patricia Salvato has also worked extensively with ME/CFS patients and HIV patients. She, too, is examining a broad treatment protocol based on emerging ideas combined with her vast clinical experience. There certainly are those in the ME/CFS field, including myself, who believe ME/CFS is best characterized or described as "non-HIV AIDS". Dr. Derek Enlander, who also has his eyes and ears open to new treatment protocols, is perhaps starting his own Ampligen trial. Dr. Enlander worked closely with Dr. Kerr, until Dr. Kerr was stripped of his academic job and was forced to end his very promising ME/CFS research. Dr. John Chia continues to work with enteroviral involvement in ME/CFS, building his research - with possible new treatments coming in the next couple of years.

Several researcher/clinicians have opened their own ME/CFS clinical/research operations. The first is Dr. Jose Montoya at Stanford who runs the Stanford CFS clinic. Dr. Montoya is working on a large study ferreting out the relationship of a host of pathogens associated with ME/CFS. He is working with Ian Lipkin on this study. Another is Dr. Andreas Kogelnick of Mountain View CA. Dr. Kogelnick will be speaking at the 2011 InvestinME conference. The third is Nancy Klimas in Miami FL who combines a clinical practice with a research effort that she shares with Mary Ann Fletcher and Broderick Gordon. No systematic framework is in place for these clinician/researchers to work together. No one, except for the WPI, even seems to think about this. For instance the WPI, Dr. Klimas and Dr. Montoya are all working on a cytokine array to identify patients with this illness. No one seems to have an interest in or even an awareness of, what the other is doing. As my daughter characterizes it, ME/CFS is the Wild West of illnesses.

Sparked by this InvestinME conference, more researchers and clinicians are talking to each other - and exchanging research and treatment possibilities. The positive that can be taken away is that there are many very smart and dedicated people working on this illness - additional candidates to get involved emerged at the NIH State of Knowledge conference, particularly Dr. Michael Dean, and Dr. Theoharis C. Theoharides.

We do not want to forget the contributions made by Rich van Konynenburg and his ideas about methylation blockage/glutathione depletion, Dr. Kenny de Meirlier's work with GcMAF, Marian Lemle's hypothesis of H2S involvement in ME/CFS, and Jill Belch’s important research at the University of Dundee and the important work being done with Rituxamab in Norway - to mention a few. I apologize to those whom I might have left out.

The biggest problem in ME/CFS is the public and "behind the scenes" working of what I would call the "dark force". These are the many people with "black haloes" who want to submerge these ME/CFS patients for the next 25 years - as they have done for the last 25 years. Who are these people? They are many, and it would take up too much space to name them. Some are now even dead, to be replaced by new heartless people. Since October 2009 a fresh and resourceful concerted effort is being made to stop all meaningful research into the cause or treatment of this illness. This is a continuing phenomenon and again one must ask why? What is behind this hostility and indifference to a broad and deeply suffering patient population? There are many people who seem to enjoy the negative positions that they can take relative to ME/CFS - and very few who will stick out their necks, and actually try to do something with this illness. Certainly the US government has made it clear that they are not going to directly grapple with this illness. The aggravated, grinding, mean-spirited, indifferent attacks on this illness are ongoing. Does this happen in other diseases? The answer is no, this situation is particular with ME/CFS. Why?

The bottom line is the negative forces have been splendidly successful in blunting any momentum forward with this illness. Great confusions have been generated, with many attendant sideshows of power and ego involvements that are difficult to comprehend. What are the stakes of the game that is being played?

Meanwhile a few patients taking selected antiretroviral drugs show improvements. In talking to Dr. Dale Guyer about a year ago, I mentioned that some patients were going to start taking antiretroviral drugs. Dr. Guyer suggested that he felt these medications certainly might work for a subset of ME/CFS patients, even though one does not know exactly what the drugs are hitting. Dr. Guyer has no problem realizing how sick these patients are.

It has become apparent that the WPI is developing a framework to try a number of protocols or combo protocols on patients in limited trials. Because of a lack of funding, it is possible that they might just bypass trials and start treating patients and building data. Dr. Judy Mikovits pointed out quite clearly that the WPI was not going to wait another two years to move on to the treatment of these sick patients. They feel that there is a very sick patient population of ME/CFS patients that can clearly be identified. They feel that there are the means by which these patients' immune function can be measured and tracked. They feel that there are treatments to try both on the side of pushing back pathogens and on regulating the immune system. Some of these treatments already exist, some are experimental, and some are coming down the line. From the WPI’s perspective, everything is in place to start treating these patients. The WPI is also actively looking for clinicians, researchers and drug companies to help in this effort.

The question now is will the United States government help or hinder the WPI's efforts? All signs right now indicate that the government will hinder the advance of knowledge about ME/CFS. At the end of the NIH State of Knowledge Workshop there was no indication of further plans to accomplish the stated goals of the Workshop: to identify gaps in knowledge and make a plan to solve identified problems. There is also no indication that agencies responsible for health care delivery in the United States have plans to improve the deplorable situation patients face when they try to find a doctor knowledgeable about ME/CFS. Until the U.S. government shows clearly that they are going to address these issues, patients have few choices. We must continue to support those researchers and institutions that are working independently, especially the WPI, who ignited the field in 2009. It is as yet a small spark, but we must nurture it until the causes and treatment of this disease are found.

12 comments:

  1. Thanks for this great summary, Chris!

    I'm sorry to hear you are not attending the conference. We will very much miss your take on things!

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  2. Excellent.

    Only one thing: the testimonies were on May 10 and 11. Lobby Day and meetings with Congressional Representatives was on May 12th.

    Besides the WPI, to me, the work Dr. Montoya is doing will add to the knowledge base regarding pathogens or co-factors involved in the perpetuation of ME/CFS. The fact that Lipkin is working with him is encouraging.

    If only the dedicated ones you have mentioned could have their own think tank and work together for just six months; heaven.

    Thank you for taking the time to give this commentary to IiME; I have pre-ordered the DVD being made of the conference. Can't wait.

    Blessings on you and your loved ones.

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  3. Thank you very much Chris for writing this piece. Your advocacy work is invaluable. Many thoughts to you and your family.

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  4. Thanks Chris. Disappointed to hear that you couldn't make it to London. Would have liked to read your take on the proceedings.

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  5. Excellent as usual. I really appreciate your voice. Thanks for taking the time to write this.

    Thank-you, thank-you, thank-you.

    Lynn

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  6. ME/CFS IS the biggest problem, and patients and groups are creating these problems for themselves. Talking about CFS that is really ME but it really is not will not make a wit of difference. And then making up this ME/CFS term and meaning only undermines us and our credibility even further. ME is not CFS, as it exists by definition (which is what matters scientifically; this is a fact, so ME/CFS makes no sense. If an illness excludes that which we have then we do not have that illness, so all the hype and hoopla doesn't mean much of anything. We may be creating heat but not much light. The ME/CFS ads are doing little other than branding a term, much as the CAA did with CFS. It will do nothing to educate but will add to the confusion.

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  7. Excellent summary, PA. Do we know the official reasons given for why Dr. Kerr was stripped of his academic job?

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  8. Thanks PA, and am very sorry you could not get to Invest in ME conference. I have had ME for thirty years and there has been NO published research in that time on a scientifically valid set of ME patients. The plethora of CFS studies just perpetuate the confusion, see The Hummingbirds Foundation for ME for data and bibliography. The ME epidemics continue.

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  9. Agree with all the positives mentioned above and also want to say how grateful I am for your blog, PA. I frequently learn something new from your writings and feel a sense of belonging and comfort not found elsewhere. (Hope you're taking care of yourself first and foremost, however.)

    Two names to add to your list are Dr. David Bell for his continued pediatric research and journalist, Llewellyn King, who has become a champion for ME/CFS.

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  10. Osler's Web details the evidence which brought a new syndrome into existence.
    The "Raggedy Anne Disease" which was under scrutiny by the Holmes committee was said by the ME literate doctors who were present, that this illness possessed all the primary determinants of ME. An assessment agreed upon by the CDC itself, who publically said so, and whose statements appeared in newspapers of the day.
    Of course, the new exotic tests ordered by Dr Cheney and Dr Peterson added even more to the database.
    So in essence, "CFS" is, from a scientific point of view, "ME+".

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  11. Don't give up!

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  12. I am a patient of Dr Derek Enlander, I am on treatment with GcMaf which is providing me with a reduction in fatigue and brain fog, the first time in ten years that I see a positive change
    Chris

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