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

[alex3619]

On consensus, it all comes down to who is doing the consenting, and what do they know?

 

[Nielk]

The thing: when all is good and done and the IOM presents their finding...in 18 months, who has the most to lose by a set of loose diagnostic criteria with a psych slant?

 

[Ecoclimber]

Looking down the road, trickle down patient symptoms, research and treatment from the VA to DHSS. Does this sound familiar?
Gulf War illness advocates skeptical of institute panel

VA will label it as psychiatric, or, as it has done most recently, lump it into the category of "chronic multisymptom illness." That category includes veterans with post-traumatic stress disorder, which is caused after exposure to trauma, or traumatic brain injuries.

"I am very concerned as an ill Gulf War veteran that IOM Gulf War committees and the board overseeing them are disproportionately made up of individuals predisposed toward views of Gulf War Illness that do not reflect current scientific knowledge, including the idea that it is fundamentally psychiatric or psychosomatic," wrote Anthony Hardie, a Gulf War vet and Research Advisory Committee on Gulf War Veterans' Illnesses, in a letter to the institute.

The Research Advisory Committee was formed after Congress found VA had focused most, if not all, of its attention on psychiatric causes of the illness, which affects about 250,000 veterans of the 1991 Persian Gulf War that drove Iraqi forces from Kuwait.

Since then, researchers have found changes in the veterans' brains that signify physical degeneration, possibly caused by environmental exposure. Other studies have determined that a greater number of troops than initially thought may have been exposed to small doses of Sarin gas after the Air Force bombed an Iraqi chemical factory.

Symptoms include fatigue, muscle pain, cognitive issues, rashes and irritable bowel syndrome.

Last month, committee members accused VA of an attempted gutting of their group, claiming that half of their members were to be replaced and that their chairman, James Binns,was being pushed out.

Secretary of Veterans Affairs Eric Shinseki has altered the charter of an independent board to research Gulf War Illness, cut its budget and limited the board's independence, according to a directive Shinseki signed last month.
"I have discussed these issues with the secretary and have directed the staff to implement a few actions regarding the committee," said Jose Riojas, Shinseki's interim chief of staff, in a May 16 letter to James Binns, the group's director. "In summary, I have directed that one-half of the members remain and one-half be replaced in accordance with VA policy," Riojas wrote.\

Paul Sullivan, a former VA official who now works as a veterans' advocate.
Sullivan also wrote the legislation that created the Research Advisory Committee (RAC) on Gulf War Veterans' Illnesses.
"They are retaliating by firing the chair, removing half the members, and reducing the scope of the committee," Sullivan said. "Without a doubt, it is a complete gutting of the board."

A 2012 report by the group also said that VA staff was working to reverse those findings. For example, a survey VA sent out to Gulf War veterans focused on psychiatric issues, rather than physical exposures.
"It has been accepted science since 2004 that Gulf War Illness is not a psychiatric problem, when Secretary (Anthony) Principi on the recommendation of the RAC forbade further research based on the premise that it was caused by stress," Binns wrote in a letter to Riojas. "It is extremely alarming to see hard-line staff seeking to undermine this knowledge."

Eco

 

[Roy S]

It seems that our beloved Master Wessely has had a bit of involvement in Gulf War Syndrome.

http://www.meactionuk.org.uk/Arise-Sir-Simon.htm

 

[justinreilly]

I completely agree, but I would put it slightly differently:

All disease advocacy/research organizations are born into and exist within an inherent state of conflicted interest. Any positive strides made in understanding/treating/curing the disease in question will necessarily have a corresponding, negative impact on the longevity and usefulness of these organizations. In other words, the success of their mission destroys their purpose.

Therefore, there is no need to pinpoint exact conflicts of interest within these organizations. Their mere existence is enough to presume they are conflicted unless they demonstrate persistently, aggressively, and concretely that they are actually committed to their own obsolescence.

In the specific case of the CAA, I don't think they've done anything (since their very early days) that could reasonably be construed as indicative of a genuine alignment with the patient community. They are fully in the business of self-preservation at our direct expense. Where they've managed to not be outright hostile to efforts at advancing an understanding of the disease, they've done little more than vacuous busywork and insidious undermining by "strengthening alliances" with government agencies that are themselves historically and actively hostile toward this disease.

Undoubtedly, this post will be criticized as "mean" or "unfair," but it is precisely the attitude and outlook motivating such criticisms which ensures that this community will continually subvert itself by unreservedly granting allegiance to false and unworthy saviors.

I agree, that's well put. There is always a conflict of interest in these circumstances. Most orgs are able to overcome it, but it still exists. I too have not seen much evidence that CAA has overcome it.

 

[Nielk]

CAA statement:

http://www.research1st.com/2013/10/02/the-cfids-association-statement-on-the-h-h-s-iom-contract/

The CFIDS Association Statement on the H.H.S. IOM Contract

ASSOCIATION NEWS, PERSPECTIVE, POLICY MATTERS, RESEARCH NEWS | 02. OCT, 2013 BY LEIGH REYNOLDS | 0 COMMENTS
Background:
On Monday, September 23, 2013 Health and Human Services (HHS) announced its decision to award the Institute of Medicine (IOM) a contract to conduct a study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). This study grew out of the 2012 CFSAC recommendation to the Secretary to convene a workshop to “reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS.”
The IOM committee will meet over an 18-month period. The project scope has been identified to include stakeholder input, include practicing clinicians and patients. As stated on the announcement received through the CFSAC listserv, the scope of work promises, among other things, to use a consensus-building methodology and to develop an outreach strategy to disseminate the definition nationwide to health professionals.
According to the announcement, expert clinicians, researchers and patient advocates will be asked for suggestions for nominees to the committee. At least one open meeting will be planned to enlist comments and concerns from patients, family members and other caretakers, health educators, health care professionals, and advocacy groups (with an open phone line and email available to those who cannot attend in person.) Existing literature, study results and current data will inform the process. Read the full announcement HERE.
Shortly after this announcement was made, a letter signed by 35 clinicians and researchers was sent to HHS Secretary Sebelius, calling for the repeal of the IOM contract and the immediate adoption of the Canadian Clinical Consensus*. Read the letter HERE.
The CFIDS Association was not aware of the letter until it was made public. As noted in our earlier statement, our support of the IOM contract was contingent upon the contract meeting specific criteria, which the HHS announcement addressed. In an effort to better understand the intent of the signed letter from the 35 experts, we reached out to the signatories for further information and input. Our first call was to Dr. Lucinda Bateman, as one of the most respected clinicians in the US.
Dr. Bateman explained that the letter writing effort began when there was little information and early skepticism about the IOM contract. She now believes that the IOM effort as described more comprehensively in the announcement on September 23rd is a positive course of action. Read her most recent statement on the issue HERE.
Position:
The CFIDS Association takes every response and each call to action extremely seriously. We do not make any of these decisions in a vacuum, but draw on the expertise of many. We sought information to better understand all viewpoints on the IOM contract, so we reached out to the remainder of the signatories via email seeking their input. Several signatories stand firm by the letter. Several signatories thought the IOM contract could work. All of them expressed a deep desire to help the patient community. We will use these conversations to help guide us on how best to engage HHS and IOM as the study moves forward.
We all acknowledge the need for evidence based, broadly accepted clinical and research tools that can accurately include or identify all subsets of the broad heterogeneous group that presents under any case definition of ME/CFS. We feel that the Canadian Clinical Consensus* can be optimized as a clinical case definition by applying a standardized methodology of execution, through validation of criteria, and a nationwide dissemination to health professionals.
In order to move forward more swiftly and to achieve better understanding, diagnosis and treatments, we must broaden support for ME/CFS research at all levels. As Dr. Bateman states,

“This is an opportunity to build a strong federal base of support from NIH/IOM. This opens the door to validation, funding and future research based on clear identification of gaps in our knowledge, review of our current evidence base, and creative thinking about how to move forward.”​

Now that the full statement of work is available from HHS, the Association is reviewing it to see how all stakeholders can best engage in the process. Together we must work to ensure the best experts are placed on the committee and that the patients have as strong a voice as possible. Together we must respond to the committee’s results, promising strong opposition if they fall short. Our shared goal is to ensure the IOM contract results in a quality clinical case definition that can be used nationwide and will move things forward.
We understand that some patient advocates remain passionately opposed to the IOM contract. Because they have been marginalized, they fear that critical insights from ME/CFS patients and experts will be disregarded. Because they have not always been heard, they are concerned that their words on this issue will fall on deaf ears in the IOM process. In the past, ME/CFS has been minimized, reduced to a mental condition or simply being tired. There is understandable fear and a justified lack of trust that history will repeat itself.
However, we must find better ways to communicate, work together, and build support for ME/CFS research. We will not always agree on specific issues but we all have a common goal: to solve ME/CFS. Now that the IOM contract is in place, we encourage constructive dialogue amidst the many different views held by patients, clinicians, and researchers. We will continue to consult with leading researchers, clinicians, patient advocates and activists to make the best and most informed decisions. Let’s build an open and respectful dialogue that moves us all forward. Millions of lives depend on it.

 

[JohnnyD]

What a bunch of BSing double speak...

So, CFIDS Assoc has Bateman on their side. Who else? The score looks to be: 34 to 1 , the "A" Team is winning.

 

[Nielk]

Interesting too how they left out what has been happening to GWI at the hands of the same IOM.
With all these political maneuvers, it has become more apparent to me who is most com Ed Ed about the future of the patients. It is about us, isn't it?

 

[Bob]

If the IOM contract is going ahead, despite our protests, my opinion is that our community should engage fully with it, and protest against it at the same time if necessary. Just my opinion, at the moment.

 

[Esther12]

What good can come of this?

I'm genuinely interested to know how anyone thinks that this could lead to things being better for patients.

 

[Ember]

What a bunch of BSing double speak...

They write, “As noted in our earlier statement, our support of the IOM contract was contingent upon the contract meeting specific criteria, which the HHS announcement addressed.” But their earlier statement reads:

The CFIDS Association considers clinical diagnostic criteria to clinically define ME/CFS a monumental and valuable undertaking. Any such effort should establish a committee consistent with the CFSAC recommendation; i.e. composed of experts in ME/CFS, with input from ME/CFS patients and advocates, who can assess the evidence in an unbiased, balanced and objective manner in order to comprehensively evaluate the current diagnostic criteria and make recommendations for operationalization and validation (emphasis added).

How could the CFIDS Association be satisfied that the HHS announcement addressed these "specific criteria?"

 

[JohnnyD]

Yes, indeed. CFIDS Assoc should be pressed regarding IOM's definition of GWI because THAT is the IOM track record. It is not a good track record.

my opinion is that our community should engage fully with it, and protest against it at the same time if necessary.

That's what has been done for the last 20 years and it has gotten absolutely nowhere. The CFS/ME Experts have made a definitive statement - they have reached consensus on CCC, period. In fact CCC is what they've been suing - they've rejected the CDC's Fukuda criteria long ago. The Experts have made this stance OPENLY. It is unprecedented in this disease. The ME community needs to take advantage of this momentum, of this united open position, and not accept anything less.

 

[Nielk]

I's sure the fact that Dr. Lucinda Bateman is on the scientific advisory board of the CAA has nothing to do with the fact that after CAA called her she retracted her position.

 

[JohnnyD]

Yeah right. Score s still 34 to 1.

 

[Ecoclimber]

After the last few years of advancement in legitimizing this illness among the scientific community, CAA actions is so irresponsible because it places the patient population at risk once again in being marginalized by the medical profession. Their actions are reprehensible.

Eco

 

[Firestormm]

Ecoclimber with the contract having now been awarded, what action would you advocate then?

The patient community could continue with their preferred course - my assumption - expressed by the '35' i.e. the CCC and nothing else (although the CCC will need to be operationalised). And it could do so via engagement with the IOM.

Or it could seek to influence the IOM into appointing those to the panel it would most like to see there e.g. perhaps those who contributed to the CCC and/or ICC.

My point is that now we surely need to get over our distaste: and move onto the next stage. What would you suggest we do next as a positive course of action? We can't hope to hold back the tide.

 

[Nielk]

Ecoclimber with the contract having now been awarded, what action would you advocate then? The patient community could continue with their preferred course - my assumption - expressed by the '35'. And do so via engagement with the IOM. Or it could seek to influence the IOM into appointing those to the panel it would most like to see there e.g. perhaps those who contributed to the CCC and/or ICC. My point is that now we surely need to get over it: and move onto the next stage. What would you suggest we do next as a positive course of action? We can't hope to hold back the tide.

Historically, the IOM prides itself on the diversity of the make-up of their panels and that they act independently. One only needs to look at the panel they chose for GWI. They will look at the nominees and then pick a very diverse group. They seem to be inclined to have a heavy portion from behavior sciences, psychologists and psychiatrists.

I have no idea where people seems to think that we can pressure them as to who to pick. That is not the way their process works. They need to uphold their esteemed name. I will be surprised if from the panel of approximately 15, there will be more that 5 ME/CFS experts.

Why is it that HHS waited until the pen what wet, to inform us of this contract? They were afraid of a protest and didn't give us any time to properly address it, This is transparent democracy?

We are on the rollercoaster and there is no way of stopping it.(imo)

 

[Nielk]

This is the panel that IOM picked for GWI (CMI) case definition.

http://www.scribd.com/doc/150270391/Panel-Members-Biographies-IOM-GWI-CMI-Case-Definition-Panel

 

[Ember]

Or it could seek to influence the IOM into appointing those to the panel it would most like to see there e.g. perhaps those who contributed to the CCC and/or ICC.

What gives you the confidence that any of those experts, aside perhaps from Dr. Bateman, would serve?

 

[Ecoclimber]

For the CFIDS organization and all patient advocacy organzations, members of the CFSAC, all clinicians and researchers, patient organizations openly oppose, boycott and disassociate themselves from the IOM committee to redefine this illness until there is absolute assurance that the board clearly represents the views of the ME/CFS clinicians and researchers and accepts in the record the 4,500 published scientific research articles to date. By being a participant, they legitimatize the process.

The same scenario occurred with Gulf War Veterans and GWS. Patient pools were expanded to include non Gulf War Veterans, Scientific data was completely ignored by the clinicians and researchers involved with the GWS the patient community, informaion from the Congressional Research Advisory Committee were ignored. The outcome was already determined before the board convened. GWS was to be redefined as CMI. Given the fact of the similarity of the symptoms in GWS and ME/CFS, the outcome is already predetermined. The information disseminated by the CFIDS is no different than the information received by the GWS patient community. Behind the scenes, decisions have already been made and this is just a facade, an appearance to legitimatize the redefinition before the public.

The only other definition the IOM has taken on is on Gulf War Illness. The chairman of the project and former Institute of Medicine President, Dr. Kenneth Shine, said he couldn’t remember the last time the OMI produced a definition. They’re not exactly experts… Only three of the sixteen panel members had any experience in GWI, and of those, only Suzanne Vernon didn’t have a psychological bias toward it.

In Jennie Spotila blog, she analyzed the double meanings and lack of specificity in the statements by DHSS in the Statement of Work Document.
http://www.occupycfs.com/2013/09/30/the-statement-of-work/

This is similar to the Pace deception in the UK. It seems as though Wessely's influence as reached across the pond!

Eco