A Dark Vision
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.
The Suzanne Vernon: CDC Connection
“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?”
- 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.”
- 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 definition.
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.
“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.
“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”
- 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.”
The CAA’s Multi-factorial Blunder
“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.”
- 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
CFIDS Association Grants for Pathogen Research.
“Besides, XMRV is an infectious, cancer-causing retrovirus, and we know how they hate infectious diseases.”
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…
The CAA’s Unwillingness to Pressure the FDA to Develop New Drugs
- Elaine DeFreitas - retrovirus
- Dr. John Martin - Mystery virus
- Dr. Grossberg - retrovirus
- 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’.
“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.
- 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.