“A “spin room” …. is an area in which reporters can speak with debate participants and/or their representatives after a debate. The name refers to the fact that the participants will attempt to “spin” or influence the perception of the debate among the assembled reporters.”—Wikipedia
Today, the CFIDS Association of America (CAA) released a statement about its position on the HHS IOM contract. I know people will tell me (again) to stop being surprised. But I do like to give folks the benefit of the doubt and I do tend to be taken aback when something does not add up. And things certainly do not add up here.
First of all, as an organization that announced 2.5 years ago to be “transforming from a patient support and advocacy organization to one laser-focused on stimulating and supporting research,” it sure is knee-deep (emails, phone calls, blog post, Facebook posts) in this advocacy issue, as it has been with others since its big transformation announcement.
But what mainly piques my interest is the fact that the CAA quite obviously is assuming that the IOM contract will go forward despite the fact that the open expert letter is still in place. It is true that Dr. Bateman has, in her statement of yesterday, changed her support for the adoption of the CCC and her opposition to the IOM contract. But apparently, none of the other 34 signatories of the expert letter have followed suit. The letter is still in place and all the other experts are presumably still very much standing by it. One person changed her mind. One! It seems to be an overreaction of the CAA to go from that to “ok, we are done here.” A reaction that is not at all in the patients’ best interest!
Moreover, we have not heard from Secretary Sebelius yet in response to the open expert letter. Why assume that she will not be convinced by the overwhelmingly persuasive argument that it’s unreasonable to spend—in the case of a grossly underfunded disease—around $1 million on an IOM contract (that’s usually a ballpark estimate for IOM contracts) for the creation of a definition by non-experts for which there is no need since we have the expert-endorsed CCC readily available? The CAA is jumping the gun here and one can’t help but wonder if this is an attempt to demoralize patients and advocates and cause them to drop their support of their experts. If the CAA just repeats often enough that the IOM contract is a done deal, it will become a self-fulfilling prophecy because opposition will dwindle.
My plea to patients and advocates out there: Don’t fall for it! The open expert letter is the strongest tool we’ve had in years, maybe ever. Finally, our experts have come together and a majority agrees that the CCC should be adopted (and updated from time to time based on the latest findings) and that the IOM contract should be abandoned. Our experts need our support and gratitude now more than ever. Starting to think about which patient representative should be on the IOM committee is dangerous and exactly what the CAA wants us to do. It’s counter-productive. Instead, it is in our best interest that there be no IOM committee for the creation of a disease definition. Our energy needs to go into making sure of that.
I questioned the CCA’s position on its Facebook page hours ago, but the CAA has not replied. In fact, my comment seems to be no longer on the page. Granted, with the slew of Facebook issues, this could be merely a technical or temporary problem. I don’t know.
The CAA expressed understanding today of patients’ and advocates’ opposition to the IOM contract. However, it does not address the most obvious reason for this opposition, the terribly botched work of the Gulf War Illness (GWI) IOM committee on treatment, which turned a perfectly fine name, Gulf War Illness, into a completely offensive, non-descript, meaningless and, thus, harmful name, chronic multi-symptom illness (CMI), for which it recommended graded-exercise therapy, cognitive-behavioral therapy and antidepressants and which mentioned the same “treatments” for “ME/CFS.” Both Suzanne Vernon, Scientific Director of the CAA, and Fred Friedberg, President of the IACFS/ME, are on the IOM committee for the disease definition of what’s tragically now called CMI. Neither Vernon nor Friedberg are experts on the disease. Both are on the NIH Special Emphasis Panel (SEP) that reviews grant applications for “ME/CFS,” an extremely powerful position to hold. Fred Friedberg is a psychologist who has been receiving signifiant amounts of money from various NIH institutes for the study of coping techniques for “ME/CFS”:*
Fiscal year 2008: $230,603 from NINR, “Fatigue Self Management in Primary Care, Efficacy, Credibility and Economics,” project #: 1R01NR010229-01A1, State University of New York Stony Brook
Fiscal year 2009: $230,603 from NINR, “Fatigue Self Management in Primary Care, Efficacy, Credibility and Economics,” project #: 5R01NR010229-02, State University of New York Stony Brook
Fiscal year 2010: $228,297 from NINR, “Fatigue Self Management in Primary Care, Efficacy, Credibility and Economics,” project #: 5R01NR010229-03, State University of New York Stony Brook
Fiscal year 2011: $259,641 from NINR, “Efficacy of Home-Based Self-Management for Chronic Fatigue,” project #: 2R42NR010496-02, Warren Stress Management”
Fiscal year 2011: $66,864 from NICHD, “Efficacy of Home-Based Self-Management of Chronic Fatigue, ” project#: 2R42NR010496-02, Warren Stress Management
Fiscal year 2013: I am unaware of the amount of funds Dr. Friedberg may have received for fiscal year 2013.
[Update November 1, 2013:
Fiscal year 2007: $99,885 from NINR, “Efficacy of Home-Based Self-Management of Chronic Fatigue, ” project#: 1R41NR010496-01A1, Warren Stress Management
Fiscal year 2012: $340,383 from NINR, “Efficacy of Home-Based Self-Management of Chronic Fatigue, ” project#: 5R42NR010496-03, Warren Stress Management
Fiscal year 2012: $28,041 from NINR, “Efficacy of Home-Based Self-Management of Chronic Fatigue, ” project#: 3R42NR010496-02S1, Warren Stress Management
These amounts are possibly, maybe even likely, not the entire amounts Fred Friedberg received for his study of coping strategies.]
I find it astounding that our government who basically has no money to award to our researchers for bio-medical research has spent these incredible amounts on the study of coping mechanisms, an area that is pretty much “researched out” when what we desperately need is bio-medical research. Can you imagine what Dr. Peterson, e.g., would have been able to do with these kinds of grants researching pathogens, NK cells or cytokines?!
Suzanne Vernon is reportedly about to be appointed to the IOM committee for the “ME/CFS” disease definition, which, if true, creates a conflict of interest for the CAA to have an official position on the issue of the IOM contract at all. Yet, this is also not addressed by today’s CAA statement. If it’s not true, why not say so? I’d love to be wrong on this. If it’s true, why not comment on why, in the CAA’s opinion, this does not create such a conflict? But most importantly, why the quest for so much power over the fate of ME patients in the hands of just two individuals, Suzanne Vernon and Fred Friedberg? With such concentration of power without any checks and balances, why would patients possibly be concerned? Without addressing any substantive concerns, the CAA’s statement is meaningless. It’s spin.
The CAA also, after a lot of pressure from the patient community, made available the letter it sent to the experts. According to the CAA letter, Suzanne Vernon spoke to Dr. Bateman and Dr. Bateman explained her reasoning for changing her position and suggested that Suzanne Vernon contact the other signatories. Curiously (as noted by another alert patient), the copy of the posted letter was addressed to “Cindy.” No other Cindy or Lucinda or Cynthia signed the letter. It seems implausible that Dr. Bateman would have been sent this letter given that it referred to her own position. Just saying.
*****
* I am quoting these numbers and other data to the best of my abilities. The cognitive challenges of this disease make it entirely likely that I transposed some numbers/letters or otherwise not quoted some of the grant information correctly. Should that be the case, please be assured it wasn’t done intentionally.
Thoughts About M.E. 
I agree very strongly! Let’s continue to rally behind our experts and insist that CCC be adopted immediately and the IOM contract be dropped! I hope that there will be some signup page or other mechanism ASAP where other experts, advocates, patients, and patient orgs can sign this letter too!
we need to keep bombarding Congress and HHS with emails. If anyone can contact press/health blogs that would be great too!
Jeanette, Thank you for staying on top of this crucial issue!
Thank you, Jeannette, for your efforts on behalf of real M.E. patients. I agree with everything you have said here. I hope patients will not fall for the CAA spin this time! Isn’t 25 years of abuse by our governments and our so-called “patient organizations” enough?
Yes, Jeanette, thanks for keeping this up. I just got an email from the CAA about the IOM contract to come up with a “case definition, diagnosis, research, treatment,” whatever and an explanation that Dr. Bateman and others were changing their minds. (Sorry, but ME/CFS brain and I can’t be more specific than that or remember more than that.)
I wrote a comment on the CAA website where comments to this post can be written. I don’t really get the CCC definition fine points, but I’m with all of you on this, so I couldn’t get into that. But I did write this reply, and wonder if it will be there tomorrow.
My reaction is this: ME/CFS has diagnostic criteria. This disease has symptoms with which I was diagnosed 25 years ago, and subsequently, which have been utilized to diagnose hundreds of thousands of people. The definition and symptoms have appeared on numerous websites, in books on this disease and in countless other documents.
This disease does not need another case definition, especially when adequate ones exist. More funds don’t need to be spent to come up with yet another case definition or criteria for diagnosis. If this weren’t the case, I nor countless others would not have been diagnosed.
All of us who suffer from this disease can list the symptoms and a “case definition” in our sleep!
What we need is much more research and government funding for it.
Dr. Ian Lipkin, the “Microbe Hunter,” is researching possible causes and biomarkers at Columbia University. His studies cry out for funding, yet because of cuts in scientific and medical funding by the government, and because this disease is still not in the news or seen as a serious health threat to the population, research isn’t being federally funded — or it gets a fraction of what’s needed.
Let’s have a Manhattan Project to research this disease, put government funds into it get to the cause and biomarkers, and then treatment. But “case definition” and “diagnostic criteria” — please, let’s not reinvent the wheel yet again. Too much is at stake.
Research and treatments now!
Your comment is awaiting moderation.
Spot on, Jeanette!
Thank you so much for your attention and effort on this most crucial of issues.
I agree that this may be the most important development in decades and that the CAA response is, while predictable based on the past, is reprehensible. It shows that organization is nothing but a tool of the government, which until recently was Vernon’s employer, along side Bill Reeves and Beth Unger.
Thanks for exposing the fact that Dr. Friedberg has received over $1 million of taxpayers’ money to push the psychiatric agenda while the government healthcare bureacracy claims it doesn’t have the money to investigate the biomedical facts of the disease.
There are so many conflicts of interest in this fiasco it resembles a flow chart of a group with a very obvious agenda — stop any meaningful research about the physical aspects of mecfs.
I remember something like 6 or 8 months ago Dr. Friedberg was awarded another NIH grant in the $500 – 800K range to study “coping with fatigue.” I thought, “ohhh, that’s why he has been saying nice things about Unger in the newspaper.”
Emailing the National Research Council Governing Board Executive Committee, should probably be one of our next steps
[quote]
Study Process Overview…
Stage 1: Defining the Study…
The statement of task, work plan, and budget must be approved by the Executive Committee of the National Research Council Governing Board. This review often results in changes to the proposed task and work plan. On occasion, it results in turning down studies that the institution believes are inappropriately framed or not within its purview.
[/quote]
http://nationalacademies.org/studyprocess/
National Research Council
Ralph J. Cicerone, Chair
C.D. (Dan) Mote, Jr., Vice Chair
Bruce B. Darling, NAS/NRC Executive Officer
James F. Hinchman, NAS/NRC Deputy Executive Officer & NRC Chief Operating Officer
Click to access nrc_organization_01012013.pdf
Well if there was any doubt before it’s pretty clear that CAA is a shill for HHS. Shame on them. Is there a national organization that represents the real views of experts and patients? I have’t found one yet and if there isn’t, it’s time there as one.
Well done, Jeannette! And I agree with Justin–there should be a formal way put into place that the rest of us can get behind the open letter as well and let the DHHS know that we are all on the same page.
thansk, guys. my brain is absolutely fried. i believe somebody whom i trust 100% is working on that formal way. once it’s in place, i will let help spread the word.
ok, i have 50-minutes to take a shower and get to the infusion room (and maybe eat). this will be interesting b/c i am hit hard.
Great!
The letter by Lois Ventura of NAME is spot on (if a little repetitive, but since they haven’t gotten it the first thousand times they’ve been told, I can understand the desire to repeat).
Click to access 2013GovtHeedOurExperts2.pdf
Thanks Jeanette for all you do and keeping us updated. It sounds like exactly what’s been happening here. Money wasted on studying fatigue and self management thanks to the psychiatric lobby and no money for biomedical research. The treatment for GWI is exactly the same treatment that is advocated here for ME. It’s beyond shameful. I’m sorry that you have been going through so much and hope things slowly get a little better for you.
Not sure the details but I think that study from ’11 for home based hocus pocus was for $600 large:
http://medicine.stonybrookmedicine.edu/psychiatry/news/Friedberg_NINR
Sorry… but the likes of Fred Friedberg would be pumping gas off the Long Island Expressway if he couldn’t saddle up to the trough for useless studies surrounding ME.
This community needs to put more pressure on CAA and IACFS. We don’t need “friends” like this.
I have responded to PANDORA’s Position statement:
CCC must be adopted now!
I read with much interest your Position Statement on ME/CFS Criteria. I heartily agree with all of it- with one big exception: I believe it is absolutely crucial that we all insist as a united front, along with the already published “letter by the 35 experts” and many emails of patient advocates, that the CCC be immediately adopted. We need to immediately end the harm that Fukuda, Reeves and Oxford are doing and that can only be realistically achieved by HHS immediately adopting the CCC.
Of course, your other suggestions such as workshops to create an even better definition with bio markers and subgrouping, etc., are very on point and important, but we must focus on getting CCC immediately adopted first (and then we can improve on it). I hope you will amend your position statement to reflect this (and join on as a signatory to the letter of the 35 experts, both in a seperate letter to HHS and by signing on by the formal process that is said to be forthcoming for all those interested to endorse the letter of the 35 experts). United we can do this!
Thank you for your consideration.
Sincerely,
Justin Reilly, esq.
If somebody could tell me where to email a letter, please let me know.
EXCELLENT response by Justin!!!!!!! To THE POINT—enough of the PURPOSEFUL blockades being put up to keep ME/CFS in the closet (house bound or bed bound as the case may be)– seriously ILL for decades with ordinary life stolen from us. ENOUGH!!!!
Thank you for all your hard work to keep us updated!!! When you stated that
“Suzanne Vernon is reportedly about to be appointed to the IOM committee for the “ME/CFS” disease definition”
I emailed the CAA to ask them if this is true and they replied back with this.
“The IOM committee has not yet been formed and we do not have any information on who will be on the committee at this time . The announcement states, “The IOM will ask interested parties, including expert clinicians, researchers and patient advocates, to make suggestions for nominees to the committee.” All members of the committee will be volunteers who donate their time.”
I hope I don’t see her name on the list of specialist for “ME/CFS” disease definition. I hope even more this whole thing gets shut down!!
If Vernon shows up on the list it will make me think that the CAA knew from the beginning about this contract.
yes, she would be doing this out of the goodness of her heart. of course 😉
i am still operating based on the assumption that the secretary of health and human services will rescind the IOM contract since our experts asked her to. everything else is completely unreasonable. why the CAA assumes otherwise really makes one wonder, huh?!
Perhaps the government has put a great deal of money into this but the patient community is unaware of that fact? After all, just the abstract that the National CFIDS Foundation had in their newsletter last spring that tells about the risk of cancer doesn’t seem to have been noticed by many. But that doesn’t excuse all that you’ve written about in such depth. Thank you for that.
I wrote to CAA’s board:
Please forward to CAA Board of Directors
Please cc to CAA Officers and Public Relations/Outreach Director
Members of the Board:
Let me first express my appreciation for the apparent strides CAA has made in the last year or so. In my eyes, these include steps like removing the CDC toolkit and other misinformation from your website, your increased focus on an apparently (to my mind, which has quite limited scientific literacy) well-thought out research plan, the use of “ME” in ME/CFS, increased communication with patients, the inclusion of PEM/PER/PENE as a requirement for contributions to your biological sample bank, the installation of a new CEO, and perhaps other initiatives of which I am unaware.
In my strong and well-considered view, there is still great improvement to be made. I am writing you now because of your expressed support of the contract between HHS and IOM for a new clinical case definition for ME. A few months ago, many organizations and patients signed a petition to HHS to change the name of the disease back to ME and to immediately adopt the CCC. More recently, a great number of patients have contacted HHS and Congress to demand that the CCC be immediately adopted and that the IOM contract not be signed (and now cancelled). As you know 35 (now 34) of the very top ME researchers and clinicians in the world wrote to HHS demanding the same thing- no IOM contract and immediate adoption of CCC.
You are well familiar with the reasons for these demands (If you wish to be reminded, I simply refer you to the letter by the 35, now 34 experts). You stand virtually alone among stakeholders in your approval of the IOM contract. I now strongly request that you change your stance for the good of the whole community.
A year or two ago, in response to a deluge of criticism by patient activists/experts, CAA announces that it was now focused as a “laser” on research and was no longer a patient advocacy organization. I strongly object to your coming out now into the public arena as a supposed patient advocate, by doing such things as stating your support for the IOM contract, contacting the 35 signatories to subtly influence them to change their views, and it seems, responding to members of congress and the press as a patient organization.
The announcement by HHS of the IOM contract did very little to address the concerns of patients, clinicians and researchers, despite your claims and those of HHS to the contrary. The contract is at fundamental odds with the request for a stakeholder definition meeting by CFSAC and will be loaded with non-experts who will almost certainly screw things up royally (especially apparent in light of IOM’s recent Gulf War Illness report). Please reconsider your position, I beg you, for the good of everyone.
I very much welcome contact from any or all of the board for friendly discussion. In any event, I look forward to a timely response. Thank you for your consideration.
Sincerely,
/s/
Justin Reilly, esq.
from Wildaisy on mecfsforums:
http://www.mecfsforums.com/index.php/topic,17834.15.html
[quote]
Reply #16
I have contacted as many of the people who signed the Open Letter to Dr. Sebelius as I was able to, and I have gotten some answers. Some people were not contacted by the CAA. Some were contacted and refused to withdraw their support from the CCC. If I receive permission, I’ll post their responses.
It is absolutely clear to me from what they have told me that the CAA was, indeed, attempting to get these signers to withdraw their support from the CCC and to support the CAA in its support for the IOM contract.
[/quote]
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Happy to read these latest updates; thank you for your work in these contacts, Justin Reilly.
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