Sunday, March 20, 2011

The Shell Game

I reread the March 12, 2011 Wall Street Journal article that was written by Amy Dockser Marcus. Ms. Marcus has been covering this story now since June and she seems intent on continuing the coverage. I look forward to future articles. There is a story here. I have various objections to this article but I will let someone else articulate the major drawback of the article.

Two days ago a comment was posted on Dr. Speedy's website, reposted from the comments section of the WSJ and it deserves to be read - by anyone who is interested in a clearer picture of reality. (I do not know this person, but wish I did.) Why can't this writer DY write for the WSJ?

The comment follows:

DY:"I have great respect for Amy Dockser Marcus as a journalist and am grateful for her interest, and that of the Wall Street Journal, in issues regarding ME/CFS and the retrovirus XMRV. However, this latest article is seriously flawed. 

The basic premise of this article - that patients are pushing for faster research and impatient with the normal scientific process - is fallacious, and unfortunately is a complete distortion of what has really been going on. The reality is that patients haven't been pressuring anyone to make researchers "work faster", they have been pressuring government agencies for more funding of high quality research that is faithful to the scientific method. 

The main agency in charge of funding extramural research is the NIH, for which Dr. Le Grice works. Some months ago there was a grassroots patient initiative in response to the abysmally low funding ME/CFS research has received from the NIH for over two decades. In the light of the enormous potential significance of the XMRV/MRV findings by WPI, NCI, Cleveland Clinic, FDA and NIH scientists, it seemed all the more obscene that NIH funding for CFS continues to trail that for conditions like hay fever and erectile dysfunction. Patients during this brief initiative were emailing, calling, or faxing the offices of the director of the NIH (Dr. Francis Collins) and one or two other government health officials. 

Dr. Le Grice is reported to have complained to a patient during the CFSAC meeting at that time that he didn't need Francis Collins calling him up asking what was going on. He raised the same points then - that patients just didn't understand that they were (somehow) slowing down his research by forcing him to answer such phone calls or emails. This is an absurd argument, even on its face, and an obvious example of institutional spin. Neither Dr. Le Grice nor any other researcher was targeted by that patient campaign, and if he was contacted by Dr. Collins or other officials one wonders what the reason could have been, as patients did not ask to speed up existing research, but to increase funding of new research - not to harass any scientists, but to pressure government officials to finally give this disease, and a potentially causative pathogen, the funding they deserve. That campaign ended soon afterward and there hasn't been an organized one since; so why is Dr. Le Grice's complaint being featured now, months later, on the front page of the WSJ, as if it was (1) still relevant and (2) accurate to begin with? 

I urge Ms. Dockser-Marcus and other journalists who want to report on ME/CFS patient advocacy efforts and concerns to engage with a broader range of patients, most of whom carry out what advocacy they can over the internet; many can be found by browsing patient blogs, forums, and activist Facebook pages. Without such input, a journalist cannot get an accurate picture of what is really happening, nor of its proper historical context. 

Among other things, patients and their families have been clamoring for funding for the WPI, which has had several grant applications inexplicably rejected by an NIH grant review panel (which, by the way, includes a number of dentists and psychologists with no training in molecular biology, immunology or virology); without such funding, patients with limited resources have been struggling to scrape together relatively small sums of money for the WPI themselves. In this case and for ME/CFS research in general, the problem isn't one of science being prevented from taking its own time, it's one of science being prevented from taking place at ALL. In direct contradiction to the theme of this article, it is the patients who are the ones fighting - all too often against government resistance - to give scientists a chance to research this disease. The terrible underfunding of ME/CFS research, including the bizarre dismissal of WPI grant applications, is itself a scandal worthy of a front page article in the WSJ." 

The real question is why does a patient have to sort all this out - especially on a subject that is so basic. What is the disconnect here - and why? My answer? This is all part of a continuing "disinformation" trailing after this illness. Even those partial towards this illness have trouble seeing it.

ME/CFS is a complex, neuro-immune illness that is very likely infectious in nature, and is associated with profound immunological dysfunction. There is an existing means by which this patient population can be accurately identified -the Canadian Consensus Criteria - and cytokine/NK cell panels that can identify those with these immune dysfunctions. These patients have abnormal areas of white matter on spect scans, diastolic dysfunction, aberrant proteins in ttheir spinal fluid, viral activation, and most likely a retrovirus and perhaps more than one. These patients lead a non-life ("a living death") for many years and then die an early death, 25 years short of average life expectancy. The pattern does not vary much. Certainly some people get better, often transiently, but few people who meet the Canadian criteria return anywhere near to their former selves, especially if left untreated. I personally would like to meet one patient who has completely recovered from this neuro-immune illness. Some say that those who escape have gone back into society and gotten lost in the crowd. I say those who have disappeared are more likely to be six feet under or entombed in darkened rooms.

At the risk of sounding ungrateful, I don't think this article by Amy Marcus does the patients suffering with this terribly dangerous illness - like my daughter- any good. In fact I think this kind of article is better not written, because it's not true, as DY has pointed out. It's very, very important to report the truth about this disease, because there has been so much inaccurate reporting in the past.

The press (and others, including virologists) have a field-day presenting the current (and past) interest in this devastating disease as nothing more than an all or nothing pitched battle that pits patients against researchers, researchers against doctors, patients against patients, and researchers against researchers. This has been going on for a long time now, and seems endemic to the illness. For this illness to move forward, this particular brand of roiling attached to this illness has to stop. It is not an accurate picture of this illness world. Instead it is a fantasy/construct, designed to further marginalize this illness. It is fundamentally abusive towards the patients with this illness. Why are so many professionals not interested in this illness? Have they all taken the "poison pill"? Why is there so much hostility directed towards these patients?

From a journalistic standpoint, fishing around in these various cellpools of personality disputes does a great disservice to trying to develop a clear storyline. This disease is dangerous and debilitating and it is that subject matter that should draw attention - not this other crap. Any other presentation suggests some searching for less than the truth. In reporting this disease one has to take the extra time to not fall into the "shell game" trap. It has been around for a long time, and it is tiresome to see it again. In this case, it involves moving people's attention around from conflict to conflict so that they lose track of the truth of the seriousness of the disease and the importance of funding research.

Drawing from my own notes, I have this say about Dr. Le Grice at the CFSAC meeting:
I sat in the CFSAC room and had to endure the disingenuousness of Le Grice's performance that was laced with prejudices. He had a lot to say about "scientific work on what isn't, instead of what is". He seemed a ringer, proposing a research program for morons. I cannot imagine that he liked his assignment. I am sure he is a much more interesting man in "real life". However, our new dear friend Le Grice is right you know. Research does go slow. It takes time. Everything actually takes time. Sculpture takes time. Learning a language takes time. This we know - things take time. Dr. Le Grice tells us that much has happened in the past year and a half. Again Dr. Le Grice is correct. Much has happened. An amazing amount of things have happened. What Dr. Le Grice neglects to add is how many of "these things that have happened" are patently negative, designed to disrupt. How much progress could have been made if the science had been left to the serious people, and the meddlers had stepped back into their rat holes where they belong. Academia, including science, is a game, and there are those who play the game well - whether they win or lose. Thank heavens for these people. But there are others - and in great abundance in modern life - who do not play the same game. They play a new game, a game that was invented in the late 1960's, and which places short-term goals above long-term goals and rewards assholes. I am sorry to report this, but it is true. From Dr. Le Grice I need more information before placing him in one category or another. Certainly at this point, having seen him in action, I do not believe him. So let's just say that the jury is out on Dr. Le Grice and turn our attention elsewhere, and maybe for good.

Incidentally it is my belief that bloggers can say anything that comes to their mind. This is part of blogging. The best ones try to verify their facts. It is not a good habit for virologists to say anything that comes into their heads. Journalism is different - and journalist have to conform to a certain standard of behavior - and responsibility.

I would like it noted that I did not mention Judy Mikovits, Annette Whittemore, the Whittemore Peterson Institute or XMRV in this blog post (excepting in the quote, which was not me)


  1. I wish DY would write for the WSJ too. Reading ADM's article last week felt like a sucker punch in the stomach. I was hoping DY would comment and when he did I felt some relief. Thanks for reposting here and for bringing to the attention of others who many not have seen it.

  2. Thank you Chris for telling it like it is! The CFSAC this year should be revealing...will Le Grice be there? Will Koh, who promised to keep us informed as to the DHHS's intentions? Will Collins come in and reassure us that the WPI will be funded? Will Fauci vomit on the cameras?

  3. I've never been so disappointed in so many advocacy organizations at one time . Can no one get the correct message out to ADM that this disease kills people . Has left my friends in wheelchairs and beds. It's not just patients who have lost faith in the Collins and Fauci. Le Grice was on board and said We are treating this as in the early days of HiV but I don't want to cause panic . He subsequently was shoved in a corner and told not to come out until he figured out how to make sure XMRV had nothing to do with CFS. Hello is anyone getting this . They know ! They saw it , they were in that very private meeting . Fauci doesn't want anything to get in the way of his HIV days and his best buddy Strauss! This is illegal , unethical and we should be demanding a congressional hearing and not just for NIAID for the CDC and the CAA who have negligently and inappropriately psychosonatized a real disease called M. E.

  4. I didn't finish my post . I have zero faith in the advocacy community except WPI. I know they can't do one more thing but I would thank the Goid lord if they threw their necks on the line , their hat in the ring and stopped the ridiculous pandering to Unger, Collins and Fauci and stood up for the patients and testified. Thank you Judy, thank you Max, thank you Vinnie and thank you WPI we would still be sitting around talking about how this disease is very serious but it's a mystery , no biomarkers, no treatments . Except it's bull. There are 4,000 reviewed papers on this real disease . Changes in many different body systems . Chris I unit you for fighting hard and advocating on behalf of what is right . Sorry I'm not joining any coallition until it's a coallition for Truth.

  5. Spot on as usual, but I would like to add that I wished DY (Dr Yes) or yourself would write for the WSJ or the Chicago Trib for that matter.

  6. Thank you Chris.

    Oganisations that I think put out the right message are these.

  7. I agree. Bravo DY (Dr. Yes).

    Patricia Carter

  8. CFS is the shell game. CFS has psychologized and buried the real disease, which is ME. those with Me should never be diagnosed with CFS, and Me/CFS doesn't solve it. ME is NOT CFS and they should not be linked or combined. ME/CFS is a term for a definition that was published in Canada that is a mixture of both. Saying ME/CFS is... makes no sense logically or medically. People use it to mean different things, then there's CFS/ME. We never really know what anyone is talking about. None of the US groups get it right. The CAA is for CFS, then Pandora/MCWPA promote and put out all the ME/CFS misinformation, and then there are faux "ME" groups that are really about promoting or using the Canadian definition, (but this is not an ME definition). Until we consistently use specific definitions with specific terminology, not interchangeably or overlapping or all the various hybridizations, nothing will change.

  9. "the 'shell game' . . . involves moving people's attention around from conflict to conflict so that they lose track of the truth of the seriousness of the disease and the importance of funding research."

    Yes. This.

  10. Well said, Tio.

    Thank you Chris and Dr. Yes.

  11. The government is an expert at pitting one side against another. It's a shell game they run all the time with various issues, e.g. global warming, healthcare, the budget, etc. Everyone knows there are hundreds of lobbyists in D.C. every day making sure that legislators know what corporations want and providing "incentives" to carry out corporate interests (it's called corruption.)

    Those corporate interests are driven by one thing - profit. And the greed is limitless. They've run the numbers, and CFS won't bring in the cush they need to climb on board. So government throws us 5 mil every year, holds a few meetings, and expects us to be happy.

    So do we keep pressuring government to do the right thing? Yes, but without expectation.

    And what can we do to raise needed research dollars? We need to generate ideas, take the best and move forward.