A Dark Vision

December 19, 2009

Posted by Cort Johnson

Hilary Johnson, beloved CDC headhunter is raking  the CFIDS Association over the coals again.  Once again she’s taking no prisoners. In her last blog on the CAA she called the organization the Bechtel of the CFS community and accused them of inciting a ‘pogrom’. In this blog she proclaims CAA is the CDC and vice versa .

Osler’s Web was a tour de force of journalistic acumen – a remarkable achievement for anyone let alone someone with this disease. Yes, it left no room for honest but wrong researchers coming to grips (badly) with a mysterious problem; but even if Hilary put her own spin on them the facts were there.

But are they now? Hilary Johnson spun a dark web in Osler’s Web but she’s spinning a much darker one now.  An author can only do so much to damage a taxpayer financed independent federal agency but an author can certainly affect a patient supported organization’s ability to function.  The CAA’s credibility is the coin of its realm, ruin that and you ruin the organization – and everything it has the potential to accomplish.

So when one swings ones axe at the CAA one should take care that one is lopping off the right limbs.  But is Hilary ‘taking care’ or is she just swinging?  Do her blogs on the CAA  illuminate or obscure?  Should the the patient community sign onto her dark vision? This look at Hilary’s latest diatribe suggests not.

“Did it become all about them, and not about you, when the CFIDS Association sought to position itself as a kind of mini-research institute, a provider of grants to scientists, with former CDC scientist Suzanne Vernon the arbiter of what was and was not worthy science?”

The Suzanne Vernon: CDC Connection – Hilary apparently believes that having Dr. Suzanne Vernon help determine which projects the CFIDS Association funds means the organization is not about ‘you’ (the patient) but is about them (the organization). Let’s  be very clear about this – the problem with Suzanne Vernon for Hilary is that she formerly worked at the CDC ( ie in aformer CDC scientist Suzanne Vernon) .  How else to understand her and other bloggers who refuse to allude to Dr. Vernon without putting her in the context of the CDC?  How else could  creating a ‘mini-research institute” mean the CAA is no longer about patients”  Its all about Dr. Vernon and her former connection to the CDC.  In Hilary’s World its not what you do but who you knew.

What has Suzanne Vernon done since she left the CDC? The CAA’s  research program is now funding cutting edge research focusing on  mitochondrial brain problems, the gastrointestinal system, aberrant muscle receptors, nitric oxide and the vascular system and more. None of these projects bear any resemblance to the CDC’s research program.

The CAA’s decision to employ outside researchers to review the grants first actually insulated the CAA from an important part of the review process. Add to this Dr. Vernon’s project to create a collaborative engine for ME/CFS research (the International Research Network) and you understand why she was the only person, aside from Annette Whittemore, to receive a standing ovation at the IACFS/ME conference in Reno. If Hilary Johnson doesn’t appreciate Dr. Vernon’s efforts the ME/CFS research community does.

“She (Kim McClear) has failed to use her access, her voice, in any way that might have been helpful; instead, she has identified with government officials and their problems instead of your problems; she’s made it easy for them to keep you quiet and (and sick), all the while assuring you in that unctuous, phony PR patter that she’s on top of things.”

Kim McCleary – This statement, most of athisll stands out “She (Kim McCleary) has failed to use her access, her voice, in any way that might have been helpful”.

What an amazing statement! In her 2 decades of work Kim McCleary has failed to be ‘in any way…(to be) helpful” to ME/CFS patients. This is a dark vision indeed. In fact, Kim McCleary has a substantial record of achievement at the federal level and elsewhere.

  • Creation of the Federal Advisory Committee on CFS (CFSAC) and then fought off attempts to disband it
  • Pressured CDC to create the first ever Media Campaign on any disease. This resulted in a multi-year campaign that reached millions of Americans with the message that CFS is real and serious disorder
  • Pressured the CDC to create the Provider Education program including the physician toolkit, exhibits at numerous scientific conferences and the Train the Trainer program involving Dr. Lapp, Dr. Freidman, Dr. Jason and others.
  • Pressured the Social Security Administration to create specific rules on CFS. CFS is now one of the few diseases to have a specific ruling on it.
  • Used Senator and Congressman to dig up documents on the CDC over the past two years. Created the most substantive and rigorous examination of the CDC’s CFS research program on any organization. Called for new leadership at the CDC and the program to be moved to a new division. Slammed the programs poor productivity and its focus on sexual abuse, cognitive behavioral therapy and the empirical defintion.
  • This doesn’t include the Physician Education program, the Research Initiative, the recent Banbury Conference, the budding International Research Network with its emphasis on sharing ideas, data and samples and speeding up the pace of research.

    CAA IS CDC/ CDC IS CAA - Not only has Kim McCleary done ‘nothing’ to help patients she runs an organization that runs hand in hand with the CDC.

    “the CFIDS Assocation is CDC, and vice versa”, “Their (the CAA’s) sister agency CDC”

    This statement is almost breathtaking in its audacity.  It assumes that CFS patients are either ignorant of the CDC trials over the past year or don’t care.  Below are just some of the resources  that document on the CAA’s ‘assault’ on the CDC over the past year and a half or so.

    XMRV

    “Vernon and the CFIDS Association fell all over themselves in an effort to caution that XMRV will probably apply only to a “sub-set;” it may be a “passenger;” the patients weren’t well characterized; there must be co-factors, in other words, it’s multi-factorial. “

    While lauding the discovery the CAA also cautioned, as did virtually every other professional organization,  that the original study was limited to a specific subset of patients and most of all that it was a first study. As you can see below they were in some pretty good company.

    ME Association

    “Further and much larger studies must be carried out using people with well defined ME/CFS in different countries. This work should include people at different stages of the illness…and in all degrees of severity. Different international laboratories, with solid experience in dealing with retroviral research, need to test for evidence of XMRV. The bottom line to this interesting research is that it currently raises more questions than answers”

    MERUK – UK – a prominent ME/CFS research and support group in the UK

    “Chief among these concerns cause and effect: the researchers’ work has shown a suggestive, significant association between the presence of XMRV and a diagnosis of ME/CFS, but this is far from proof that the virus has a direct or even indirect role in the development or maintenance of the illness. XMRV might prove to be simply a passenger virus carried by an immune-depressed ME/CFS patient population, with little or no influence on the illness.”

    Dr. Coffin

    “First is, of course, to establish what the real role of the virus is in this disease…whether the virus is the cause of the disease or a passenger, or just a geographic coincidence of infection with the disease, all of this remains to be established.”

    The CAA’s Multi-factorial Blunder - With regards to the XMRV being multifactorial – apparently an huge faux paus in Hilary’s book, here’s Dr. Peterson on that subject at the CFSAC meeting in Oct.

    Question: do you still consider that a possibility that the XMRV could be the single infectious agent of causing (CFS)?

    Dr Peterson: My feeling is there have to be cofactors.

    Hilary wants XMRV to be what it isn’t yet – the answer. Until studies replicate the WPI’S findings and extend the results to the rest of the ME/CFS community we won’t know how far XMRV reaches. Polls on the Phoenix Rising website are just getting going but in the very early results more people are testing negative than positive to XMRV.

    The CAA’s ‘Hate’ of Infectious Diseases

    “Besides, XMRV is an infectious, cancer-causing retrovirus, and we know how they hate infectious diseases.”

    CFIDS Association Grants for Pathogen Research. The CAA has been funding research for over 20 years. Here are some I’m aware of off the top of my head.  It doesn’t appear that they hate infectious illnesses at all…

    • Elaine DeFreitas – retrovirus
    • Dr. John Martin – Mystery virus
    • Epstein Bar Virus – Ronald Glaser
    • Endogenous Retroviruses – Brigette Huber – “Results from Huber’s pilot study have shown a strong correlation between infectious agents and CFS.” From the description of the study.
    • The title of the Banbury Conference the CAA produced was ‘From Infection to Neurometabolism’.

    The CAA’s Unwillingness to Pressure the FDA to Develop New Drugs

    “With the other hand, it (the CAA) would be demanding clinical trials and drug development at FDA, instead of warning you it might take years for therapies to be developed.”

    Hilary would have the CAA demand that the FDA develop drugs for CFS! After all if they were a real patient organization they would do that – of course they would! The only problem is that FDA doesn’t develop drugs – they evaluate drugs – the drug companies make them.  (Imagine the conflict of interest if the FDA developed drugs and then was in charge of determining whether to sell them or not.) I for one am glad that the CAA isn’t  demanding that the FDA develop drugs for this disease.

    Conclusion – Hilary’s latest blog  on the CAA is full of overblown rhetoric and  contains mis-statement after mis-statement. One could easily ask when it became all about Hilary’s anger.

    I believe there are things to discuss regarding the CAA  but Hilary’s vision is too dark for that to occur. Like the CAA or not they have produced results. Whether they should’ve produced different results or done X or Y instead of Z is something that can and should be debated. But it can’t as long as Hilary’s anger drenched vision holds sway.

    22 comments

    { 21 comments… read them below or add one }

    Mary Schweitzer December 20, 2009 at 2:12 pm

    Hey guys – Can we have some Peace on Earth Good Will Towards Men?

    The way things are now, I feel like I fell into the Pirates of the Carribean, with ships lobbing cannon fire over my head as I disappear down a whirlpool.

    Shalom?

    Mary Schweitzer

    Reply

    Vickie December 20, 2009 at 2:16 pm

    Cort, what Hillary is really guilty of is being honest. There are so many mistakes in your own take on this that I can’t begin to address them all. One is the researcher you correctly say the CAA funded is John Martin but his “mystery virus”, as you called it (he called it a “stealth virus” has already been found by researchers at a medical school in Hawaii. He was using the test for ciguatera and he had not found any “virus” at all. I got tested for that (the test is available to the public) and they already found what is it is really a biomarker for. I could go on and on just as you did, but it seems a waste of time since it is you that do not have all your facts correct. While Hillary may hold a different viewpoint than your own, she has her facts correct just as she always has.

    Vickie

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    admin December 20, 2009 at 2:24 pm

    Its a tough call. I don’t know if ignoring a piece which for me exemplified just the opposite of ‘Good Will’ wouldn’t just make the situation worse in the long run.Too bad it came during XMAS that’s for sure. I clearly don’t recognize Hilary’s good will in that blog. I just see anger. I certainly don’t understand where she’s coming from…Maybe I should search harder. Maybe that should be my lesson.

    Too bad it came during XMAS that’s for sure.

    Sorry about that Whirlpool!

    Reply

    Kim December 20, 2009 at 2:26 pm

    Two L’s in Hillary.

    Reply

    admin December 20, 2009 at 8:08 pm

    Thanks Kim! :)

    Reply

    admin December 20, 2009 at 2:34 pm

    Dr. John Martin’s virus at the time was a mystery virus and to my understanding still is but that gets far afield from the topic of this blog. This blog wasn’t about what kind of virus Dr. Martin found but whether Hilary was incorrect when she said that the “CAA hates infectious diseases”. Based on the fact that they’ve funded studies into numerous pathogens would you say that Hilary’s statement is true? Does the CAA hate infectious diseases?

    Please let me know of more mistakes.

    Reply

    Chris Heppner December 20, 2009 at 3:30 pm

    I have a hunch that one thing at play here is the difference between the free status of being a patient, a researcher, or a journalist, all categories free to project what they would like in an ideally constituted universe, and the status of being an administrator of an institution that exists as one among many institutions that also have some power in the world as presently constituted. Johnson is a free research journalist, free to express her anger at an organizational world not ideally set up to answer her–our–needs. She has a sharp pen through which to articulate that anger and frustration.
    Cort is leader of an organization–OK, an independent and free organization, but a kind of organization, that has to include many elements, and deals with many other organizations. Vernon is leader of an organization that has to deal with other organizations that currently have a good deal of power. She could resign in despair, or make the best of what power she has, and work to enlarge that power. It sounds to me as if that is what she is doing. As patients maybe we need both things–Johnson’s ability to voice our anger and frustration, Cort and Vernon’s ability to push things for our betterment in a world still dominated by people like Reeves at places like the CDC. It should not be too hard for us to recognize that all three may be working for us, and that from time to time the different energies that they represent are going to clash a bit. In the long run, all three are probably doing their best to further our interests. At least that is my peacemaking and grateful view right now.
    The situation reminds me a bit of the current reaction to Obama; some are expressing disappointment and dismay at how little he has actually accomplished. My question to them would be: given the present state of the American voting population, and given the present distribution of powers, would anyone have been able to accomplish more? I frankly doubt it, while sharing in a sense of let-down over the health bill and Copenhagen.
    Chris.

    Reply

    admin December 21, 2009 at 5:11 pm

    Thanks for that insightful post Chris. We are not in an ideal universe and tradeoffs will, of course, have to be made. A great discussion would concern whether the CAA has made the right tradeoffs. At least in that discussion we could come to a common ground that the CAA lead by Kim McCleary is committed to furthering ME/CFS patients interests, and then we could discuss the pros and cons of how she and they have gone about it. What a different discussion that would be!

    That is not the discussion we generally see on the web. We see inflammatory posts such as Hilary’s that assume the worst about that organization and quickly take the discussion to the lowest denominators; instead of, for instance, differing over strategy they promote the idea that the CAA is not ‘for the patients’; a phrase that has come up again and again.

    Hilary’s rhetoric is so extreme and so inflammatory that I don’t see her trying to move the CAA in a certain direction at all- as gadflies traditionally do. I see her as trying to end discussion with the CAA – not start one.

    Thanks for your post!

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    Jacob December 20, 2009 at 4:07 pm

    My biggest grip with the CAA is with what I view as unethical salaries for their senior staff. Every dollar counts like a million when it comes to funding research on this illness.

    It would take me at least 14 years to earn as much as their highest paid employee does in 1 year. I have to do it while struggling through illness while this CAA employee can live in luxury off patient donations.

    I used to send money each year until I found out. Now I can’t believe I what conditions I lived through while my money went to pay luxury salaries.

    Reply

    admin December 20, 2009 at 7:48 pm

    Believe me I know where you’re coming from Jacob. The most I’ve earned in the past 8 years is about $3500. A huge gulf exists between what most of us can earn and what any working professional does. I have been told from people who are acquainted with managerial salaries that the salaries of the CFIDS Association employees are about what’s expected if believe it or not, perhaps a bit low.

    Reply

    Vickie December 20, 2009 at 4:57 pm

    I don’t have enough time nor patience to mention all the mistakes made but I’ll throw out a couple more…Elaine DeFreitas never said she found a retovirus but actually said she found a retoviral-like link. I attended an AACFS conference (it was not yet the IACFS) that replicated her work and an oral presentation was made. And the Banbury Conference concluded there was no link to a retovirus in this illness. Back to Martin, he never called what he found a “mystery virus” but did, clearly, call it a stealth virus and does to this day. That, too, was disproven using the same tests he was using. Hillary is not not incorrect that the CAA hates infectious diseases. Most charities know better than to find an infectious link to what they represent or even a real causal entity. That’s part of history. It’s an inconvenient fact of most charities. Truth is often brutal. You feel that Osler’s Web was factual. How did the CAA report on the historical novel?
    Vickie

    Reply

    admin December 20, 2009 at 8:06 pm

    None of your comments Vickie pertain to the gist of my blog. Its not important for the purposes of THIS discussion whether Dr. DeFreitas called it a retrovirus or a retroviral-like link – or what the CAA called it or what I called it – that is not what Hilary Johnson was complaining about. She asserted that the CAA hated infectious pathogens. Can you say that that’s true given the fact that the CAA has numerous times funded studies on pathogens?

    I’d like conversation focused as much as possible to the subject of the blog – which was whether or not Hilary’s ‘vision’ of the CFIDS Association is (a) accurate or (b) is fruitful. I submit that neither are true; that Hilary has an inaccurate view of the CAA that is in the long run damaging.

    Instead of discussing whether or the CAA is the CDC we could discuss the pros and cons as Chris suggested, of attempting to utilize the resources of the federal government to get the word out about ME/CFS (taking the system over from within – Kim McCleary’s approach) or of becoming a very patient centric organization (taking the system over from without – Marc Iverson’s approach) . Both are valid approaches – both have their pluses and minuses – but you can’t get to THAT discussion when you’re caught up in statements like CAA is the CDC or the CAA hates infectious diseases. I think that’s VERY unfortunate for us all.

    Reply

    Vickie December 21, 2009 at 9:47 am

    I beg to differ, Cort. When one uses erroneous statement to support their own ideas, it does pertain to what they are saying. While Hillary Johnson has an opinion, she backed it up with facts. Your own opinion may differ but using nonfactual comments to back it up is disgraceful. Do you remember the first federal committee, the CFS Coordinating Committee, that was abruptly shut down? How can you possibly say Kim began the second one? Facts, please! The media campaign was on “CFS” and, like the educational program, watered down all the scientific facts (or completly eliminated them) for CFS just as the educational program did and just as the newest CDC clinical defintion does. You complain about Hillary’s “mistatements” yet your own blog is so full of falsifications and now you try to say I’m not addressing the blog. Yes, Cort, I am addressing it. Why hasn’t Kim Kenney or her organization addressed some of the most important science found about this illness? Why didn’t they actually spend a million dollars for research when they took in so much more for research? Facts, please, or do not base your opinions on things not proven. While everyone is entitled to an opinion, putting it forward based on half-truths or outright false information is a big problem. Addressing pathogens that have already been proven NOT to be causal is a real problem whether or not they are pathogens. Reread Osler’s Web or study history yourself to find out why you’re way off the mark. Kim’s organization funded less than a million dollars worth of research and some of it was on Epstein-Barr Virus. The NIH was quite annoyed, years ago, when they had called this an Epstein-Barr Virus and it was proven not to be. Fact: funding more research into a pathogen that has already proven not be causal won’t do much to help any patient with this illness.

    Vickie

    Reply

    admin December 21, 2009 at 4:56 pm

    The CFIDS Assn played a major role in both getting the CFSAC going and then fighting off attempts to disband. I engaged in one of their activities to fight off its dismissal.

    Vickie you’re raising many issues that are not in the blog. The blog concerned whether or Hilary was being truthful when she said the CAA was the CDC, or that their research program was not for the patients or that the CAA hated infectious diseases, etc.

    The blog was not on whether it was worth it to trade off a somewhat watered down approach to CFS for millions of dollar of federal funds for advertising that this is a real and serious disease. That’s a good discussion and I wish that Hilary was interested in having THAT discussion but she’s not.

    Hilary is not saying that the CAA took in a million dollars and then only spent part of it on research; she’s saying that because Suzanne Vernon (ex CDC researcher) is in charge that the CAA is not doing research ‘for the patients’. I guess thats true if you think mitochondrial problems in the brain, endogenous retroviruses, vascular problems and nitric oxide, etc. are not important subjects in ME/CFS but I disagree.

    With regards the $1 million dollar Research project the CAA also had to find a way to pay for Dr. Vernon’s salary – possibly for several years and to fund their own research inputs such as the three day Banbury Conference the helped get the researchers together.

    I would note that for 25 years researchers have been addressing pathogens that are not causal – the CAA is hardly alone in that; no one until recently possibly the WPI has gotten this close to causality. I think Dr. Lerner and Dr. Montoya would disagree with you, though, about EBV’s potential seriousness in this disorder.

    Reply

    Eva December 21, 2009 at 3:01 pm

    The XMRV study was not limited to a specific subset of patients,just ones that met the specific diagnostic criteria. And those who were upset with the CAA’s response were not upset for their caution, but the manner with which they expressed it.

    I wish this would all stop. It doesn’t seem like it serves anyone to have a angry post from Hillary about the CAA met with a critique from Cort. Can we just please stop?

    Reply

    admin December 21, 2009 at 4:39 pm

    The problem is that stopping the discussion with Hilary’s blog leaves us in a where the CAA is accused things like BEING the CDC , and of doing no good work, and of hating infectious diseases, etc. etc. I think when extreme statements like that are made then they must be called them out – otherwise they settle into concrete over time. Whatever disagreements one might have with the CFIDS Association characterizing them like that it’s simply not fair.

    This was not a post I ever wanted to write. I dread writing these posts – taking on an icon of the ME/CFS movement is not a way to win friends and influence people – but the alternative is to let inflammatory statments like that lie unanswered and in my book that’s bad news for all of us.

    I’m not clear as to the difference between limiting a study to a specific subset of patients supposed to limiting it to specific diagnostic criteria (ie patients with immune abnormalities, very low VO2 max scores, etc.). Whatever the case that was a distinct group of quite ill patients – in her talk on XMRV Dr. Bateman said she thought about 10% of her patients were as ill if as those patients.

    Yes some people at a number of complaints regarding how the CFIDS Association handled the XMRV situation. I would submit though, that the problem was more a question of tone than of content; the CAA’s content was quite similar to that of some other professional organizations and they have apologized several times for any mistakes they made.

    Reply

    Eva December 21, 2009 at 5:01 pm

    They “limited it to specific diagnostic criteria” in order to have patients with CFS, not a certain KIND of CFS. That’s the difference. Presumably the Canadian and CDC definitions would cover all subsets. So it is misleading to say they did it on a specific subset, unless your subset is “people who meet the diagnostic criteria for the disease.”

    I also don’t think it’s useful to offer forum polls as counter-evidence to a rigorous scientific study, especially given how political all of this is. Implying that those might cast doubt on this study seems a little…unhelpful.

    Reply

    admin December 21, 2009 at 5:25 pm

    Thats only if you diagnose CFS in a specific way and in a way that has never been done in a research study. According to your criteria 90% of Dr. Bateman’s patients would not have CFS. The Science paper stated that the patients were diagnosed with CFS according to the following critieria; they met the CDC definition, the Canadian Consensus definition and that they had RNase L, cytokine and V02 max abnormalities and they were disabled. That is not a typical ME/CFS patient.

    Nancy Klimas just did a cytokine study in which ME/CFS patients demonstrated an opposite cytokine pattern! There’s nothing the matter with bringing your sickest patients forward for the first study; that’s how research is generally done and that’s what Dr. Peterson did. It does not mean, though, that those patients are necessarily representative of the broad swath of ME/CFS patients. It doesn’t mean that they’re not either – it means that we just don’t know – we’ll have to wait for further studies for that answer. That was the CAA’s position and MERUK’s position – its really the only tenable position that I can see – but Hilary took the CAA to task for stating that.

    The forum polls are indeed quite rough and perhaps I shouldn’t have put them in there. They are, however, our only guide to the results that at least some patients are getting. They don’t cast doubt on the study at all -they attempt to pick up in a rough way the results from the ME/CFS community at large.

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    Alan Gurwitt December 28, 2009 at 2:13 pm

    Almost from the beginning of CFS patients organizing in small or larger groups there have been disagreements, sometimes friendly but too often unfriendly because the disagreements became nasty and personal. That sniping killed two groups that I was aware of, the death of one destroying an opportunity to debate issues with Simon Wessely and Michael Sharp. In another instance two organizations in the U.S. that should be working together are not doing so. The challenge as always is is to constructively disagree without becoming mortal enemies expending energies in a continuing duel. In response to Cort Johnson’s questions I agree that Hillary Johnson’s latest blog was so negative about the CAA that she lost me. (She formerly was a hero in my mind). I don’t know about her specific accusations but the tone of total denigration without any recognition of some significant positive actions destroyed any possibility of a constructive dialogue and coordination. We have had far too much of that. If we can’t work together we are shooting ourselves in our collective foot and driving off potential recruits.

    Reply

    Debbie Anderson January 5, 2010 at 12:00 am

    This pissing contest needs to stop..the ones you are hurting are the very ones you all say you are fighting for….cannot any of you get it through your heads that people are dying…if you are not part of the solution, you are part of the problem…and I don’t see any solutions being offered by anyone, except for the WPI. Twenty five years is long enough for this crap

    Reply

    admin January 5, 2010 at 2:23 pm

    If you look out there Debbie we don’t have many friends and we have even fewer groups that work for us. If you think that ignoring comments like Hillary made is helpful to the CFS community we’ll just to have to disagree. If you think that Hilary’s blog is going to make this disease go away any faster I will greatly disagree. In fact I would argue just the opposite – that its going to slow down our progress and lengthen the amount of time we all have to deal with this disorder.

    Personally I want an organization that will dig into the CDC’s problems, that will produce a good physician education program, that will do innovative research, that will create an International Research Network. I want to see those kinds of things happen and that’s why I wrote the blog – not because I wanted to engage in a pissing contest with Hillary Johnson. (Believe me, that’s one of the last things I want to do. :))

    Reply

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