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

[Ecoclimber]

We have seen the IOM results of what the diagnostic criteria and treatment guide for another patient community, The veterans of the Gulf War. Treatment guide by the IOM committee notes that the best available evidence from studies of treatments for CMI and related health conditions demonstrates that veterans who have CMI may benefit from such medications as selective serotonin reuptake inhibitors and serotonin norepinephrine reuptake inhibitors, and from cognitive behavioral therapy, which has been shown to reduce symptoms. Other interventions and approaches hold promise for treating CMI but lack robust scientific evidence of their effectiveness. For this reason, the VA should fund and conduct studies of interventions, such as biofeedback, acupuncture, St. John’s wort, aerobic exercise, motivational interviewing,and multimodal therapies!

This treatment option was in direct contrast to the Congressional mandated Research Advisory Committee even though the IOM stated that these men and women were exposed to biological and chemical toxins, depleted uranium, particulate matter and infectious agents and the IOM acknowledge them as contributors, and it found it found most compelling the scientific evidence that the prime culprits were neurotoxins — in overused insecticides, experimental anti-nerve gas pre-treatment pills, and sarin plumes from the Air Force’s bombing of an Iraqi weapons plant!

It is ludicrious that a panel of scientists with absolutely no background nor experience with the ME/CFS patient community, shown absolutely no prior interest in this community to date, never treated ME/CFS patients and has shown a complete lack if not disdain and marginalization over the past decades for ME/CFS patients. It is devoid of common sense that this panel has more expertise than the clinicians/researchers that have been using the CCC and ICC primer over the last decade and who oppose this plan.

The CAA only supports a very small portion of the ME patient community and does not speak on behalf of the majority of 17 million patients worldwide. Over the past two decades, it has not produced the results needed for our community.

The question is whether the CAA or any of the associates will benefit financially from this contract...a definite conflict of interest? I would rather CAA focus on increasing their rating among charitable organizations which tends to belie the dysfunctional nature of this organization.

This is a bog posting by an attorney who is also a ME/CFS patient
CFIDS Association Asking Signatories to Withdraw Endorsement of CCC

I would object to CFIDS behind the back manuvering by posting your objections on thier Facebook Page
https://www.facebook.com/CFIDSAssn

Eco

 

[Andrew]

Interesting that IOM would recommend SSRIs while also saying other treatments lack robust scientific evidence. I just did a search on Pubmed, and I found zero studies of SSRIs being used with Gulf War syndrome.

 

[Ember]

And that makes it look, to me, less likely that the IOM project will "have to be" staffed with numerous ME experts.

As Jennie points out in her analysis of the Statement of Work, “Not only does the SOW not require that a majority of the committee be subject matter experts, it doesn’t even require more than one of them.”

 

[justinreilly]

I don't think this has been mentioned here yet, but thanks to floydguy for elsewhere noting that Vernon and Fred Friedberg are on the IOM's committee to define "Chronic Multisystem Illness" aka GWI.

http://www.scribd.com/mobile/doc/150270391

 

[alex3619]

Two classic methods to get committees to give results you want is to stack the members, and to limit the terms of reference to only those things that will give you the result you want. Both appear to be in play for IOM. Though the specific terms of reference for a ME/CFS definition are not yet known, it is likely they will resemble the GWS terms, and we saw how that turned out. They might get this right, they will probably promise they will get this right, but if they do not fulfill that promise, if they fail, and we allow it to happen, the cause of ME and CFS advocacy may be set back decades. Only diagnostic biomarkers and a robustly demonstrated cause will help us then.

 

[alex3619]

I don't think this has been mentioned here yet, but thanks to floydguy for elsewhere noting that Vernon and Fred Friedberg are on the IOM's committee to define "Chronic Multisystem Illness" aka GWI.

http://www.scribd.com/mobile/doc/150270391

I saw Friedberg there, and we should be asking him for his opinion on all this, but I did not see Vernon. Is there another source for Vernon?

 

[justinreilly]

I saw Friedberg there, and we should be asking him for his opinion on all this, but I did not see Vernon. Is there another source for Vernon?

She's the last one listed. It's in alphabetical order.

 

[justinreilly]

I have also now asked CAA for the letter and how much Vernon and/or CAA will be paid for being on the IOM Gulf War Illness panel.

 

[MeSci]

Just been notified of this link, which looks relevant, criticising Unger and supporting Snell.

 

[Ecoclimber]

The IRS Form 990 includes several questions focusing on accountability and transparency, such as questions about the composition of the board of directors, and questions specifically designed to elicit whether the organization has a written conflict of interest policy, procedures for managing conflicts, a whistleblower protection policy, and a document retention policy. For more background on nonprofit governance and the revised Form 990, visit the Council of Nonprofits’ website resources on Governance

A conflict of interest policy should (a) require those with a conflict (or who think they may have a conflict) to disclose the conflict/potential conflict, and (b) prohibit interested board members from voting on any matter that gives rise to a conflict between their personal interests and the nonprofit’s interests. Beyond those two basics, it is helpful for each nonprofit to determine how conflicts at the board and staff level will be managed. Keep in mind that the revised 990 asks not only about whether the nonprofit has a written conflict of interest policy, but also about the process that a nonprofit uses to manage conflicts as well as how the nonprofit determines whether board members have a conflict of interest.

Suzanne D. Vernon of the CAA should expressly convery to the patient community if she is receiving any renumertion from the IOM contract or based on any compensation received proceeded to encourage ME/CFS clinicians/researchers from withdrawing their letter in opposition. If so, this a clear breach of IRS Form 99 conflict of interest on behalf of a non-profit.

Why is the CAA so determine to make this happen?
Eco

 

[Firestormm]

I have also now asked CAA for the letter and how much Vernon and/or CAA will be paid for being on the IOM Gulf War Illness panel.

According to Jennie and her latest blog, and taken from the IOM website I believe, members of a panel are not paid, other than reimbursed for travel etc.

 

[Ecoclimber]

According to Jennie and her latest blog, and taken from the IOM website I believe, members of a panel are not paid, other than reimbursed for travel etc.

According to Jennie Spotila, the contract award to the IOM was $ 1millon dollars. On another blog post, an attorney stated on her blog

CFIDS Association Asking Signatories to Withdraw Endorsement of CCC

"I know this for a fact, but can’t disclose my source:

The CFIDS Association of America (“CAA”) has contacted at least some, maybe all, of the 35 signatories of the letter addressed to the HHS regarding the adoption of the CCC asking them to withdraw their endorsement of the Canadian Consensus Criteria (“CCC”). Also, Suzanne Vernon/the CAA is a beneficiary of the IOM contract. The CAA sent their requests yesterday and asked the signatories to comply by noon today.

This is puzzling not only because it is directly and brazenly adverse to the patients’ interest, but also because the CAA claims to be purely a research organization now and not an advocacy group anymore. Yeah, right. And the deadline: I mean, really?!

Ms. Vernon’s involvement with the IOM contract is a blatant conflict of interest in asking the signatories to reverse course.

I have to say: It would be hard for me to be more disgusted at this point."

 

[Firestormm]

According to Jennie Spotila, the contract award to the IOM was $ 1millon dollars. On another blog post, an attorney stated on her blog

CFIDS Association Asking Signatories to Withdraw Endorsement of CCC

"I know this for a fact, but can’t disclose my source:

The CFIDS Association of America (“CAA”) has contacted at least some, maybe all, of the 35 signatories of the letter addressed to the HHS regarding the adoption of the CCC asking them to withdraw their endorsement of the Canadian Consensus Criteria (“CCC”). Also, Suzanne Vernon/the CAA is a beneficiary of the IOM contract. The CAA sent their requests yesterday and asked the signatories to comply by noon today.

This is puzzling not only because it is directly and brazenly adverse to the patients’ interest, but also because the CAA claims to be purely a research organization now and not an advocacy group anymore. Yeah, right. And the deadline: I mean, really?!

Ms. Vernon’s involvement with the IOM contract is a blatant conflict of interest in asking the signatories to reverse course.

I have to say: It would be hard for me to be more disgusted at this point."

Eco, the letter content has been discussed elsewhere, and indeed Jennie has seen it also, and stated that it asks the experts what their position is in light of the contract being awarded. Not sure if it has been reposted on this thread or not, but it's here somewhere.

Can you indicate where Jennie mentions the cost of the contract? Thanks. This does not of course alter what I said - which was taken by Jennie from the IOM website - that panel members are not paid. There is bound to be a cost for completing this work over 18 months of course there is: I'd like to see more detail of that and confirmation that it is $1million, is all I was asking.

 

[Bob]

Eco, the letter content has been discussed elsewhere, and indeed Jennie has seen it also, and stated that it asks the experts what their position is in light of the contract being awarded. Not sure if it has been reposted on this thread or not, but it's here somewhere.

The contents of the CAA's letter have been discussed earlier in this thread.
I don't think the letter has been made public yet though, has it?

 

[Firestormm]

The contents of the CAA's letter have been discussed earlier in this thread.
I don't think the letter has been made public yet though, has it?

No. Sorry Bob I was referring to Jennie's comment being reposted.

 

[jspotila]

I have also now asked CAA for the letter and how much Vernon and/or CAA will be paid for being on the IOM Gulf War Illness panel.

The IOM website states that panelists are not paid.

 

[Ecoclimber]

Eco, the letter content has been discussed elsewhere, and indeed Jennie has seen it also, and stated that it asks the experts what their position is in light of the contract being awarded. Not sure if it has been reposted on this thread or not, but it's here somewhere.

Can you indicate where Jennie mentions the cost of the contract? Thanks. This does not of course alter what I said - which was taken by Jennie from the IOM website - that panel members are not paid. There is bound to be a cost for completing this work over 18 months of course there is: I'd like to see more detail of that and confirmation that it is $1million, is all I was asking.

A question was asked in one of the comments sections...too tired to flush it out but here is some of the thread
I’m curious if CAA and/or Dr. Vernon have a financial interest in the IOM contract as Jeanette states. Can you comment?
I would also like to have the letter be made public so we can all see what was said and resolve this difference in understanding, but I suppose that CAA should really produce it rather than you since they sent it.

It is interesting that CAA has been blogging on all of the developments in this controversy, but has curiously not posted/announced that the 35 luminaries wrote a protest letter. In their extensive coverage, I think they mentioned once in passing that some patients didnt like the idea of an IOM contract. They also have still failed to disclose whether the organization and/or Vernon has some substantial financial interest in the awarding of the contract.

Rebecca Fromdaforums
September 28th, 2013 at 15:40 | #21
Reply | Quote
The CAA does have a financial interest in the IOM contract in the sense that a broader case definition of CFS would provide CAA a larger base of donors.
The Fukuda definition applies to ~ one million Americans, the Reeves-Vernon definition (“operationalized” Fukuda) to about four million. If IOM redefines CFS to capture millions more Americans, CAA will represent a much larger base of “patients” from whom it can collect money.
I agree CAA should release the letter.

Eco
It should be in the Federal Register somewhere but someone mentioned it on some blog somewhere.

 

[jspotila]

Can you indicate where Jennie mentions the cost of the contract? Thanks. This does not of course alter what I said - which was taken by Jennie from the IOM website - that panel members are not paid. There is bound to be a cost for completing this work over 18 months of course there is: I'd like to see more detail of that and confirmation that it is $1million, is all I was asking.

I don't think I ever mentioned the cost of the contract, since I don't know it for a fact. I have heard that IOM studies run around $1 million, but the cost (obviously) will vary based on the task. I have heard several numbers tossed around for the ME/CFS IOM study, but I have no documentation of the actual amount. I would like to see it. And the last line of the SOW I posted last night states that "IOM shall furnish the complete list of project sponsors and their funding amounts."

 

[jspotila]

A question was asked in one of the comments sections...too tired to flush it out but here is some of the thread
I’m curious if CAA and/or Dr. Vernon have a financial interest in the IOM contract as Jeanette states. Can you comment?
I would also like to have the letter be made public so we can all see what was said and resolve this difference in understanding, but I suppose that CAA should really produce it rather than you since they sent it.

It is interesting that CAA has been blogging on all of the developments in this controversy, but has curiously not posted/announced that the 35 luminaries wrote a protest letter. In their extensive coverage, I think they mentioned once in passing that some patients didnt like the idea of an IOM contract. They also have still failed to disclose whether the organization and/or Vernon has some substantial financial interest in the awarding of the contract.

Rebecca Fromdaforums
September 28th, 2013 at 15:40 | #21
Reply | Quote
The CAA does have a financial interest in the IOM contract in the sense that a broader case definition of CFS would provide CAA a larger base of donors.
The Fukuda definition applies to ~ one million Americans, the Reeves-Vernon definition (“operationalized” Fukuda) to about four million. If IOM redefines CFS to capture millions more Americans, CAA will represent a much larger base of “patients” from whom it can collect money.
I agree CAA should release the letter.

Eco
It should be in the Federal Register somewhere but someone mentioned it on some blog somewhere.

Is this question for me, Eco? I think our posts crossed, but as I said above, I do not know how much the IOM contract will cost. I've heard that IOM studies usually cost around $1 million, but I'm sure that varies a lot.

Regarding whether the CAA or Dr. Vernon have a conflict of interest re: IOM, I have to point out that no one has offered any documentation showing that they do. When I was on the Board (until the end of 2011) the Association had a very robust conflict of interest policy, and the Board was vigilant for conflicts. I assume that is still the case, particularly in the absence of documentation to the contrary. Also, IOM does not pay its panelists.

Regarding the statement that the Association has a general financial interest in a broader definition because it will allow them to raise more money, that doesn't make much sense. If that were true, then EVERY organization that serves our patient population would have the same conflict of interest. So does PANDORA or WPI or Mass CFIDS or PR have a conflict of interest because a broader definition would help them raise more money? I don't think so.

 

[alex3619]

She's the last one listed. It's in alphabetical order.

Ahh, it was a computer glitch, my list stopped prior to her name.