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CFIDS Association asking expert signatories about their current position on endorsing the CCC

Nielk

Senior Member
Messages
6,970
This is too great of an issue to sweep under the rug. This is not a play. This is real life with real consequences. As I wrote in my article HHS moves are devious. They took the recommendation of CFSAC and totally switched it around (bait and switch game).

Had they followed up on CFSAC's recommendation, we would have had a workshop under the umbrella of CFSAC composed of real ME/CFS experts who have years of experience like the 34 who signed the letter to HHS. This is how other diseases are defined.

Disease have never been defined by the IOM. It is this venue that is outrageous! This is not what CFSAC asked for and to pull a trick on us and make it sound as if that's true is truly demeaning to our intelligence.

It is only currently that the IOM has been tasked to redefine GWI, or should I more accurately call by the name IOM has just revised to "chronic multisympton illness" (CMI ). Look at the panel they IOM has chosen for them, regardless of the fact that GWI patents have been outspokenly protesting this.

Now is the time to fully protest this, before the damage has been done. We have not heard a reply yet from Sebelius for the letter of our clinicians. Our clinicians I'm sure have taken this action of writing this letter to HHS not too lightly. Why do you think they took this strong stand against a government agency? This could seemingly harm their future chances of getting government funding. Yet, they were willing to take this real risk! It's because they understand the great possible danger to their patients if this action bears fruit.

As far as the CAA is concerned, they plead (in their letter) with the 35 that we need to speak in one voice yet, that is exactly what the 35 did. By one voice, they mean their voice (CAA's).
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Emailing the National Research Council Governing Board Executive Committee, should probably be one of our next steps

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.

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

http://www.nationalacademies.org/includes/nrc_organization_01012013.pdf
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
"Spinnng Around". Another excellent post by Jeannette:

http://thoughtsaboutme.com/2013/10/03/spinning-around/

Spinning Around

“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 years 2012/2013: I am unaware of the amount of funds Dr. Friedberg may have received for fiscal years 2012 and 2013.

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.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Ember - This is where I saw Dr. Bateman on CFIDS' scientific advisory board. Is this wrong?
Ember is correct. The name has been changed from Scientific Advisory Board to Research Advisory Council to reflect that there are more than just scientists on it. Ember's link seems current, while yours is a PDF from 2011, though maybe CAA is erroneously still linking to it too. So, Cindy Bateman is no longer on that Committee. I noticed also that Vincent R. Isn't on there any more.
 

Nielk

Senior Member
Messages
6,970
Ember is correct. The name has been changed from Scientific Advisory Board to Research Advisory Council to reflect that there are more than just scientists on it. Ember's link seems current, while yours is a PDF from 2011, though maybe CAA is erroneously still linking to it too. So, Cindy Bateman is no longer on that Committee. I noticed also that Vincent R. Isn't on there any more.


Thanks for that clarification.
 

beaker

ME/cfs 1986
Messages
773
Location
USA
As far as the CAA is concerned, they plead (in their letter) with the 35 that we need to speak in one voice yet, that is exactly what the 35 did. By one voice, they mean their voice (CAA's).

Shakes head.
How did it get so crazy. Who is really pulling the strings over there ?What happened to the stance that they were going to be a research group and not be involved in advocacy anymore ? Too bad they couldn't of stuck to that.
 

Ember

Senior Member
Messages
2,115
Unless something has changed that I am unaware of the IOM contract is only for a clinical definition. The research definition is still up to the CDC, though its implied they want to do yet another clinical definition - its a clear waste of effort to do this twice.
Yes, of course, the IOM contract is for a clinical case definition only. But when it comes to the research definition, the NIH has convened an Evidence-based Methodology Workshop "to address the issue of case definitions appropriate for ME/CFS research." Dr. Unger, on the other hand, seems to be working on a case definition for both clinical and research purposes, the CDC's so-called “data-driven” case definition.

This definition work is currently being carried out by the American government not twice, but thrice:
As it seeks to address the needs of health providers, patients and their caregivers, the Committee will consider the various existing definitions and recommend consensus clinical diagnostic criteria for this disorder....

The Committee should review the efforts that have already been done, including the 2003 ME/CFS Canadian Consensus Definition, the 2007 NICE Clinical Guidelines for CFS/ME, the 2010 Revised Canadian ME/CFS Definition, the 2011 ME International Consensus Criteria, and data from the ongoing CDC Multi-site Clinical Study of CFS. Also the committee should communicate and coordinate with the Office of Disease Prevention at NIH regarding their ongoing Evidence-based Methodology Workshop for ME/CFS in an effort to minimize overlap and maximize synergy. The coordination with NIH should assure that relevant information is shared and the key messages are coordinated. (Emphasis added.)
Lois Ventura, Co-Founder of National Alliance for Myalgic Encephalomyelitis, writes in her September 30 letter to HHS, NIH, CDC, and Elected Officials, “'Minimizing overlap' is a contradiction. Having such a Workshop itself is maximizing overlap! The definitions are done – let us move forward, not stall out again, or worse, move backwards!”
 

akrasia

Senior Member
Messages
215
One of the best things about the expression of no confidence by M.E. experts is that it removes the usual reflexive scorn and dismissal of "crazy" patients from the debate.

Someone should ask Ian Lipkin just what he said to Tom Frieden and Anthony Fauci. And more importantly, what they said to him.

The determination by our masters to continue with the project suggests they have to make a renewed effort to control the narrative of science and m.e. It's not that I think this augurs well, I don't, but the why this why now question seems appropriate.

Our doctors, to my dismay, have shunned politics and have never really asserted themselves forcefully, preferring to try to influence outcomes by participation and cooperation with the government. That they feel emboldened to do this now and to speak with such cogency is a very good sign.

War was declared on us long ago by institutional medicine. Pretending that we are equal partners in this process is fantasy. By not accepting the marginality and alienation patients have had to contend with, the CAA from Stephen Straus onwards colluded with the institutions that have caused
so much misery. Even if we grant the good intentions of Suzanne Vernon, her belief that she can exert any influence on the IOM process seems absurd. How well did she do for the veterans?

Lucinda Bateman, whom I respect, has recanted her support for the statement of no confidence, writing,

"We have, with blood sweat and tears, in small painful increments, and with the help of XMRV and the CFSAC, finally captivated the honest attention of the CDC, Social Security, Secretary of Health, the general public, a few wealthy donors, our elected officials, and now the FDA, and to some degree the NIH."

At this late hour, how anyone can believe in the "honest attention" of the CDC et al. is beyond me.



 

readyforlife

Senior Member
Messages
137
Thanks for that clarification.

So the CFIDS.ORG website is out of date? So when I click on leadership to check out who is on their board of directors and scientific advisory board these people are not current? Or just the scientific advisory board people?
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Akrasia, I sometimes shake my head at the stuff Bateman says about "fatigue" and GET etc., but to say that the "honest attention of CDC" has been captured is insane; the CDC CFS program is obviously the exact opposite of "honest" and honesty.
 

asleep

Senior Member
Messages
184
So the first ever use of such an IOM contract resulted in definitive diluting and whitewashing of GWI, a disease that is clearly a very politically inconvenient fallout from the military-industrial and pharmaceutical industries. It appears to be nothing short of an all-hands-on-deck political coverup (or, rather, further obscuring in plain sight) from the highest levels.

One can't help but wonder what high level agency players really know about ME and its political ramifications, given that we are so honored to be granted only the second ever one-way ticket to permanent political purgatory.
 

readyforlife

Senior Member
Messages
137
Just finished reading Jeannette's blog, spinning around
http://thoughtsaboutme.com/2013/10/03/spinning-around/

She posted that Suzzanne Vernon is reportedly about to be appointed to the IOM committee. If that's true that makes me think that CAA has known all along about this contract.

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.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
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.
 

asleep

Senior Member
Messages
184
Do any petitions exist in opposition to the IOM contract and/or the CAA? If not, I propose the creation and wide dissemination of the following two separate petitions:

  1. Repudiation of the IOM contract and disavowal of any resulting creations/guidelines/proposals, including:
    • Affirmation of support for the ME/CFS expert clinician letter to Secretary Sebelius and its proposal to adopt the CCC as the working case definition.
    • Rejection of the legitimacy and wisdom of proceeding with the IOM contract in defiance of this joint recommendation by the bulk expert ME/CFS clinicians.
    • Declaration of boycott and withdrawal of all support (financial or otherwise) from any organizations that lend support and/or credence to the IOM contract.
    • Preemptive boycott of all clinicians who adopt the output of the IOM contract (if it proceeds to fruition) in their clinical practices.
  2. Disavowal of the CFIDS Association of America (CAA), including:
    • Repudiation of the right of the CAA to purport to speak and/or act on behalf of the ME/CFS patient community and oneself as a patient.
    • Vote of no confidence in the entire CAA organization, including Suzanne Vernon and the entire Board.
    • Affirmation that the CAA acts solely for its own benefit, which frequently results in its acting in direct opposition to and to the detriment of the larger ME/CFS patient community.

Thoughts? Additions?
 

Ecoclimber

Senior Member
Messages
1,011
Remember that the Government is shut down. Most Congressional staff members are on furlough.

I contacted and talked to Senators and staff members that sit on the Congressional appropriations committee that oversee the NIH and CDC budgets. We will see if any pressure comes from them.

CAA​
I'm curious on why the CAA is so involved in this since they stated awhile back that they are no longer will focus on advocacy but research? And, they are going through a transitional period.

The CAA does not represent nor speak on behalf of the majority of the worldwide ME/CFS patients. Their importance is greatly overstated

The most compelling ME/CFS scientific research and break through over the last 10 years was not on behalf of the CAA efforts. The advancements came from private donations, private foundations, university research labs and at major research labs across this country and around the world. Whenever there was a major breakthrough, the CAA position has been neutral at best.

Coaliation Between GWS and ME/CFS​
Tom Hennessy literally gave his life for patient advocacy. Tom was one of the firsts, before most scientists, to recognize that Gulf War Illness is similar to ME/CFS. Because of the similarities among the diseases, the necessity to reduce misconceptions, and the call for a stronger activism voice, Tom conceived of advocating for all of these illnesses together, along with fibromyalgia, environmental illness and chronic tick-borne infections. He suffered from quite a few of these ailments for many years.”

On the Larry King Show, That show got pretty heated when I claimed that “many of our brave veterans are returning with very similar symptoms as all these ‘alleged whiney white women’ who can NOT handle stress!” I went on to say, that “If these highly educated, mostly male, stunningly victorious soldiers who only fought for four days, could come down with this terrible illness, then maybe the NIH and the CDC will be forced to stop telling lies about it.”
http://www.cortjohnson.org/blog/201...m-hennessy-fierce-advocate-memorial-tomorrow/

If the symptoms for GWS is very similar to ME/CFS patient community. Why would the IOM illness criteria differ from the GWS in defining the illness as CMI?

If you read the DHSS SOW document, the various statements are very similar to the promises made to the GWS patient community and we know the result from the VA IOM committee.

Guarantees were made to the GWS patient community that member selection to the VA IOM would be based on input by GWS researchers, GWS clinicians, patients, and patient advocates. They lied

Guarantee were made that scientific research and information from the Congressional mandated Advisory Research Committee would be allowed and considered. They lied

They diluted the pool of patients to include current veterans. In reality, the composition of the board was predisposed to psychiatric criteria and treatment protocal so that medical treatment and disability payement would be reduced.


Call it what you want, dog and pony show, smoke and mirrors, bait and switch tactics by the DHSS. How many fruitless years has the patient community tried to change the CDC toolkit, the name of this illness, how many patients and their families, researchers and clinicians gave testimonies at the CFSAC meetings to a disinterested board members? What has been the result over the years? NADA

Committees were formed and researchers/clinicians came up with the CCC and later the ICC ME criteria. The CDC and the DHSS refused to accept as a toolkit for practitioners.

I sense that this is a behind the scenes ploy or alignment to have Wessely policies on GWS and ME implemented here in the United States. Instead of PACE it will be CBT/GET. Tradeoffs are made between governments.

An independent board of distinguish’ scientists, IOM board is a clever tactic, a ruse, to legitimatize ME/CFS as a psychiatric illness. It will be etched in the minds of the American people and the medical establishment as the final arbiter on this illness.

Eco
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Do any petitions exist in opposition to the IOM contract and/or the CAA? If not, I propose the creation and wide dissemination of the following two separate petitions:

  1. Repudiation of the IOM contract and disavowal of any resulting creations/guidelines/proposals, including:
    • Affirmation of support for the ME/CFS expert clinician letter to Secretary Sebelius and its proposal to adopt the CCC as the working case definition.
    • Rejection of the legitimacy and wisdom of proceeding with the IOM contract in defiance of this joint recommendation by the bulk expert ME/CFS clinicians.
    • Declaration of boycott and withdrawal of all support (financial or otherwise) from any organizations that lend support and/or credence to the IOM contract.
    • Preemptive boycott of all clinicians who adopt the output of the IOM contract (if it proceeds to fruition) in their clinical practices.
  2. Disavowal of the CFIDS Association of America (CAA), including:
    • Repudiation of the right of the CAA to purport to speak and/or act on behalf of the ME/CFS patient community and oneself as a patient.
    • Vote of no confidence in the entire CAA organization, including Suzanne Vernon and the entire Board.
    • Affirmation that the CAA acts solely for its own benefit, which frequently results in its acting in direct opposition to and to the detriment of the larger ME/CFS patient community.
Thoughts? Additions?

I think the third bullet point in number two will create problems. The first two bullet points are sufficient.

The first proposition its a statement of advocacy intent. That should be made clear I think.