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

justinreilly

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Thoughts About ME blog by Jeanette Burmeister alleges the following. I have asked CAA for confirmation and explanation immediately.

http://thoughtsaboutme.com/2013/09/...g-signatories-to-withdraw-endorsement-of-ccc/

CFIDS Association Asking Signatories to Withdraw Endorsement of CCC

Posted on September 28, 2013 by Jeannette--Amped up. Ready to go. (TM)

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.
 

taniaaust1

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This shouldnt surprise anyone, Ive always thought she may be a plant and part of the conspiratory out there surrounding this illness as we all know she worked for the CDC on ME/CFS for over 10 years before moving into the role of scientific director for the CFIDS assoc (a move Ive never felt comfortable about esp since we all know the CDC has covered up ME since the 1980s). She's played the role well in the top position of this big org (if she didnt, she would of been kicked out long ago). Of cause they wont do "advocacy" except if it suited them and their own "agenda" of keeping confusion around our illness.

For anyone interested in her history see http://phoenixrising.me/interviews-...sociation-of-the-america-by-cort-johnson-1107

So is it surprising that she's now working against ME/CFS patients best interest by trying now to work against us just when we are at the very point in which we could end up having things become much better for us? These people will step in and stop things if they see the tide is about to turn for us, she gets paid a ton of money in her role (which in itself Ive always found interesting when there is so little money for ME/CFS).

One of the big reasons that things dont move forward for our illness, is that a lot of our own orgs do not truely support us (have been infiltrated etc). Im glad that true colours are blaringly showing on this occassion.
 

Esther12

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There were things about the IOM project which sounded bad and reminded me of other times when patients have been screwed over, but I'm far from convinced that the Canadian criteria are great either. I could have been supportive of something like the iom project if it had been entirely transparent, and committed to fully addressing patient concerns - as it is, I don't have any confidence in it.
 

Sasha

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I asked Jennie Spotila if she had seen this and she responded on her blog:

http://www.occupycfs.com/2013/09/26/trust/#comment-39827

I have seen the actual letter Jeannette is talking about. It does not ask the signatories to change their position. It asks IF they have changed their minds after the IOM announcement. I do not know what the Association’s position is at this point.​
That said, the letter could have been more neutrally worded than it is. And it’s not surprising that one or more of the 35 signatories would share the letter with others given how volatile the situation is right now.​

jspotila - hope it's OK to repost that.

I think it's an important distinction and I think it's important to keep things accurate.

justinreilly, Kina - I think the title of this thread should be changed to 'CFIDS Association asking expert signatories about their position now on endorsing the CCC'.
 

justinreilly

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I would still like to know what CAA and Vernon's interest/involvement in the IOM deal is!

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.

I would also like to see a copy of the letter made available to everyone so we can confirm what was said.

I think the title of this thread should be changed to 'CFIDS Association asking expert signatories about their position now on endorsing the CCC'.
I personally can't change the title of the thread (unless something has changed since last time I checked), an admin must do that. By putting Jeanette's blogpost title in quotes I was meaning to simply alert people to the existence and title of that blogpost. I didnt mean to imply that the statement was factually true. In retrospect I could have done that better.

However, I dont think the title should be changed to what you are suggesting. There is a difference in understanding between Jeanette and Jennie about what the letter said that is unresolved. You are assuming that Jennie's understanding is correct and Jeanette's is incorrect, but we dont know that. I guess a way to resolve it is to add something like "Burmeister Claims" to the title of this thread.
 
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I've changed the title, I'd have liked to include that this is with regards to the IOM announcments, but there is a limit to the length.

On to the topic at hand, I don't necessarily believe that the IOM is going to do a bad job. What worries me is not the IOM contract, but the lack of transparency in the decision making.
The HHS don't seem to want to empower the community (which involves being completely transparent, uniting and guiding the community to state their needs and recommendations and then taking action based on these recommendations). I don't want the HHS to 'withdraw' the contract, I just want them to start taking the community seriously. That includes consulting the community in depth when it comes to their final recommendations on case definitions.
 

Iquitos

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The primary point is this contract isn't needed and is a waste of money for doing something that isn't needed. $1 million to come up with a standard that is already in existance and has been used successfully. All HHS needs to do is direct CDC to stop using all those old, never-adequate definitions and adopt the CCC.

The secondary point is that, par for the course, HHS is not respecting patients and REAL researchers by farming out this contract on the sly and ignoring knowledgeable researchers. Of course anyone who knows the history will suspect their motives. I certainly do.

Worst of all is that if it goes as planned, we wait ANOTHER 18 MONTHS, just to get criteria for diagnosis and research. This is just a continuation of the abomination that we must have 6 months of illness before we can even get a diagnosis. It's a delaying tactic.

IF HHS had been honest in dealing with this community, it would have put this contract out there for the likes of the 35 signers to apply for, get, and finish in a few months -- exactly what HHS/CDC doesn't want.

IF IOM is not as dishonest as HHS, it will immediately employ the 35 signers to do this job, let them finish it in 2-3 months and submit the results immediately and NOT WAIT for 18 months of our lives to be wasted on this diversion.
 

Sasha

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I would still like to know what CAA and Vernon's interest/involvement in the IOM deal is!

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.

I would also like to see a copy of the letter made available to everyone so we can confirm what was said.
I completely agree!

By putting Jeanette's blogpost title in quotes I was meaning to simply alert people to the existence and title of that blogpost. I didnt mean to imply that the statement was factually true. In retrospect I could have done that better.
I didn't mean to criticise, justinreilly - I realise you were copying Jeanette's blogpost and that she will have posted in good faith.

However, I dont think the title should be changed to what you are suggesting. There is a difference in understanding between Jeanette and Jennie about what the letter said that is unresolved. You are assuming that Jennie's understanding is correct and Jeanette's is incorrect, but we dont know that. I guess a way to resolve it is to add something like "Burmeister Claims" to the title of this thread.
I've been offline for a few hours and see that the title has been changed already. That's a good point you make that it's unresolved - I suppose I was assuming that Jennie's take would be more accurate because she states that she's actually seen the letter and I don't know if Jeanette has. I'll post a comment on her blog. Hopefully we'll soon know! I'll leave the title in your hands in the meantime (it takes a message to a moderator to get it changed, which is why I tagged Kina - it's also possible to report your own post asking for a title change).

Sorry if I've mucked up your thread! :oops:
 

Sasha

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Jeanette has kindly responded to my question:



my response to jennie’s point that asking IF they changed their mind is different than asking them TO change their mind was this:​
I respectfully disagree, Jennie. Technically it’s different. Yes. But it’s not different in spirit. Why would anybody think that the signatories changed their mind just days after the letter without any change in circumstances? Makes no sense. It’s pressure being applied hoping somebody will flinch and it will all unravel from there. And that’s exactly how it is perceived by the signatories, which is probably why it was reported to me the way it was.​
Being lawyers, we can argue about words. But I believe the substance of their “outreach” is quite clear.​
I respect the fact that Jeanette has a different take on this but personally I think it's more than a technical difference. The experts' email crossed with an email from HHS giving what was presumably intended to be reassuring detail about how the IOM would implement its contract so it doesn't sound unreasonable to me to ask the experts if that new information has had any effect on their view: in fact, I think several people expressed their confusion about what we should do next, given that these two messages had crossed in the mail. Whether it's reasonable that it's the CAA asking this question, given that I thought that they had publicly said that they'd give up advocacy, is another matter (and perhaps not a trivial one).

How one interprets the motive behind the CAA's question to the experts is a separate issue, and I can understand the intense suspicion that many people feel around that, given the history. But I think it's important to be clear on the facts of what the CAA has asked of the experts. Interpretation of that is then the next stage.

Personally (again), I feel that an opportunity for our experts to confirm their opposition to the IOM contract in the face of the new information from HHS about the specifics of the project, if that is indeed the experts' position, would be a valuable thing for us. We need clarification, given that the two messages crossed. We don't want HHS claiming by default that the experts' concerns have now been addressed.
 
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The primary point is this contract isn't needed and is a waste of money for doing something that isn't needed. $1 million to come up with a standard that is already in existance and has been used successfully. All HHS needs to do is direct CDC to stop using all those old, never-adequate definitions and adopt the CCC.

The secondary point is that, par for the course, HHS is not respecting patients and REAL researchers by farming out this contract on the sly and ignoring knowledgeable researchers. Of course anyone who knows the history will suspect their motives. I certainly do.

Worst of all is that if it goes as planned, we wait ANOTHER 18 MONTHS, just to get criteria for diagnosis and research. This is just a continuation of the abomination that we must have 6 months of illness before we can even get a diagnosis. It's a delaying tactic.

IF HHS had been honest in dealing with this community, it would have put this contract out there for the likes of the 35 signers to apply for, get, and finish in a few months -- exactly what HHS/CDC doesn't want.

IF IOM is not as dishonest as HHS, it will immediately employ the 35 signers to do this job, let them finish it in 2-3 months and submit the results immediately and NOT WAIT for 18 months of our lives to be wasted on this diversion.
For anyone on the fence: IOM would be using its own process to select study participants, and that process is one that actually works against selecting a study group composed solely of ME/CFS experts. The IOM prides itself on bringing together "recognized experts from diverse disciplines and backgrounds who might not otherwise collaborate." It values "different experiences and perspectives". "A point of view or bias is not necessarily considered a conflict of interest". It could easily select well-known UK psychiatrists whose views we are all familiar with.

Below is the IOM study selection process. It's well worth-while reading.

http://nationalacademies.org/studyprocess/index.html#st2
 

snowathlete

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For anyone on the fence: IOM will be using its own process to select study participants, and that process is one that actually works against selecting a study group composed solely of ME/CFS experts. The IOM prides itself on bringing together "recognized experts from diverse disciplines and backgrounds who might not otherwise collaborate." It values "different experiences and perspectives". "A point of view or bias is not necessarily considered a conflict of interest". It could easily select well-known UK psychiatrists whose views we are all familiar with.

Below is the IOM study selection process. It's well worth-while reading.

http://nationalacademies.org/studyprocess/index.html#st2
I don't want the IOM to do it full stop. It is too big a risk at this stage and with the history of the illness for us not to know at the outset who is going to be involved in drafting this definition. It could be a total disaster if someone like the IOM gets it and I don't trust them to get it right and involve the right people, or even some of the right people. They do have a recent track record with the GWS business too where they absolutely screwed those patients over.
 

Firestormm

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23 September 2013

...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.

Should the contract be awarded to the IOM, the CFIDS Association is committed to actively calling for the IOM to establish a committee that is in line with the CFSAC recommendation.

The CFIDS Association believes that any review of current clinical diagnostic criteria should include requirements to validate and operationalize the Canadian criteria [1].

Further, the clinical case definition must be useful in primary care as well as tertiary care settings. Diagnostic criteria that define core symptoms will increase the diagnostic certainty, increase the likelihood of identification and validation of biomarkers and can provide the guidance needed to develop safe and effective treatments for ME/CFS – which is central to our mission to make ME/CFS understood, diagnosable and treatable.

ME/CFS patients are severely ill and urgent action is required. Development of gold standard diagnostic criteria would help address several of the highest recommendations from the CFSAC in the areas of research, education and policy. Objective diagnostic criteria that can reliably define the core symptoms is an important step towards the identification of the causes and cures of ME/CFS...
My own comment from the other thread:

If the contract proceeds - which I think it will - it will be interesting to hear from the experts what their thoughts are now. They wrote the letter and requested signatures before it was known that the contract had been granted. Unfortunate perhaps that the two crossed - both being published on the same day: but we are where we are. So where do we go now? Isn't there a webinair in November? I think so - though perhaps we'll hear more before then. Let's face it something like this review has been called for and was on the cards for many many years. Might be time to try and make the best of it and prepare to give evidence/form collaborations/present a united front by detailing what is wanted and why...​
Makes sense to me to ask the experts where they might stand in light of the developments.
 

Denise

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As Liz Willow says --- IOM can choose a very diverse group for the project.
In addition, I imagine that the project Statement of Work can influence the scope of the project also.

Last week Tom Kindlon pointed to http://editorsupdate.elsevier.com/i...-research-the-rule-rather-than-the-exception/ which I found to be an interesting read on bias in research...

The HHS project announcement was skillfully (I don't mean this in a positive way --- at least for our views) crafted and included this bullet point-
"the IOM committee will include approximately 15 members with expertise in the following areas: epidemiology; clinical medicine/primary care and other health care fields, particularly with expertise in ME/CFS, including neurology, rheumatology, immunology, pain, infectious disease, behavioral health, cardiology, endocrinology; and scientists and physicians with experience in developing clinical case definitions."

which makes it look as though the committee will be comprised of people with all sorts of ME expertise. But if one re-formats that bullet point, using the semi-colons as "break points" -- it ends up looking like this:


"· the IOM committee will include approximately 15 members with expertise in the following areas:
epidemiology;
clinical medicine/primary care and other health care fields, particularly with expertise in ME/CFS, including neurology, rheumatology, immunology, pain, infectious disease, behavioral health, cardiology, endocrinology;
and scientists and physicians with experience in developing clinical case definitions."

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

Esther12

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For anyone on the fence: IOM would be using its own process to select study participants, and that process is one that actually works against selecting a study group composed solely of ME/CFS experts. The IOM prides itself on bringing together "recognized experts from diverse disciplines and backgrounds who might not otherwise collaborate." It values "different experiences and perspectives". "A point of view or bias is not necessarily considered a conflict of interest". It could easily select well-known UK psychiatrists whose views we are all familiar with.

Below is the IOM study selection process. It's well worth-while reading.

http://nationalacademies.org/studyprocess/index.html#st2
It all depends on specifics, and on trust.

With XMRV, we suddenly saw a load of virologists with little/no interest or knowledge in CFS looking into things like case definitions, and a lot of what they said was really sensible and helpful. If the IOM were to bring in really bright, moral independent experts, that could be great.

I have very little faith that this is what will happen. They way they've gone about things makes it look like another stitch up, and attempt to screw patients with vague criteria that can lump together all sorts of people and dump them with behavioural interventions.

Who is deciding on the experts? What oversight is there? What commitment to transparency is there? How many patient representatives will be involved, and how?
 
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IOM is a private, non-profit organization. It does not have to listen to anyone it doesn't want to. All it has to do is fulfill its contractual obligations.

Neither HHS nor IOM have shown us the Statement of Work which would give us a bit more information. The HHS' announcement (really a press release) may or may not reflect that important document.
 

Ember

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We don't want HHS claiming by default that the experts' concerns have now been addressed.
This concern was expressed to HHS:
We strongly urge you to abandon efforts to reach out to groups such as the Institute of Medicine (IOM) that lack the needed expertise to develop “clinical diagnostic criteria” for ME/CFS.... This effort threatens to move ME/CFS science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable.
In its announcement, HHS doesn't commit to appointing any ME/CFS experts (or individuals with ME/CFS expertise) to the IOM committee. Instead, it commits to having IOM choose from among “other health care fields,” particularly those fields considered to have expertise in ME/CFS. Those fields include neurology, rheumatology, immunology, pain, infectious disease, behavioral health, cardiology, endocrinology. Expert clinicians and researchers will be asked to make suggestions for nominees to the committee:
To accomplish these tasks, the IOM has also agreed that:

· the IOM committee will include approximately 15 members with expertise in the following areas: epidemiology; clinical medicine/primary care and other health care fields, particularly with expertise in ME/CFS, including neurology, rheumatology, immunology, pain, infectious disease, behavioral health, cardiology, endocrinology; and scientists and physicians with experience in developing clinical case definitions. The IOM will ask interested parties, including expert clinicians, researchers and patient advocates, to make suggestions for nominees to the committee.

· the IOM, in addition to the committee meetings, will sponsor open meetings to enlist the comments and concerns of patients, family members and other caretakers, health educators, health care professionals, and advocacy groups. During these meetings, an open phone line and email address will be available to those who cannot attend in person.
Merely soliciting suggestions from experts for nominees to the committee and adding open meetings to elicit comments and concerns could not be construed by HHS as their having addressed the expressed concerns.
 

Hope123

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1) I have seen the CAA letter and did not like the way it was worded (minor point) or the implications of it (more concerning).

2) Jeanette B.'s point about conflict of interest is a salient one. Follow the money, folks. I haven't checked it yet but look at who was on the GWI IOM Committees and who might end up on an IOM ME/CFS Committee. Could people's views be influenced by more than science -- e.g. money, power, ego, etc.?

3) I respect IOM -- with other illnesses and issues -- not so sure about GWI and ME/CFS especially since the IOM GWI committee has already come under fire for their first report on GWI. There were concerns from GWI vets and some scientists on the CFSAC-equivalent of GWI that too many panelists/ experts were invested in GWI being an psychological illness.

In addition, the GWI IOM report has some parts about ME/CFS which I have heard were not favorable. Haven't had the chance to read it. The original doc is linked below and also Mary Dimmock's article summarizing concerns:
http://www.prohealth.com/library/showarticle.cfm?libid=18314
http://books.nap.edu/openbook.php?record_id=13539&page=R1

Both these aspects make me wonder if ME/CFS will get a fair shake from IOM or will it be treated the same as GWI?
Do we need history repeated?

Forbes article: http://www.forbes.com/sites/rebeccaruiz/2013/06/28/inside-the-effort-to-define-gulf-war-illness/

4) IOM will likely employed an "evidence-based" process to come up with definitions/ treatment recommendations. The problem is in ME/CFS, we don't have enough evidence of the right types yet (e.g. a really good trial on pacing) to come to the right conclusions. With the "evidence" out there already, we will end up getting recommended GET/ CBT. This is what happened with the NICE Guidelines in the UK, which, unfortunately, our friends across the pond have had to deal with.

[BTW, if anyone wants to, read up on the pitfalls and perils of "evidence-based medicine."]
 

Esther12

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3) I respect IOM -- with other illnesses and issues -- not so sure about GWI and ME/CFS especially since the IOM GWI committee has already come under fire for their first report on GWI. There were concerns from GWI vets and some scientists on the CFSAC-equivalent of GWI that too many panelists/ experts were invested in GWI being an psychological illness.

In addition, the GWI IOM report has some parts about ME/CFS which I have heard were not favorable. Haven't had the chance to read it. The original doc is linked below and also Mary Dimmock's article summarizing concerns:
http://www.prohealth.com/library/showarticle.cfm?libid=18314
http://books.nap.edu/openbook.php?record_id=13539&page=R1

Both these aspects make me wonder if ME/CFS will get a fair shake from IOM or will it be treated the same as GWI?
Do we need history repeated?

Forbes article: http://www.forbes.com/sites/rebeccaruiz/2013/06/28/inside-the-effort-to-define-gulf-war-illness/
Doesn't look good to me.

A few CFS bits, eg here: http://books.nap.edu/openbook.php?record_id=13539&page=97

Moves on to Somatic Symptom Disorder with uncritical references to Shorter's work. It looks like a wikipedia approach, rather than a critical and sceptical picking apart of the claims being made.

That they've decided to create 'Chronic Multisymptom Disorder' does not inspire any confidence.