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

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I am not sure that Bateman can be criticized for issues on IOM diagnostic criteria and poor research definitions. I thought it was the CDC who are doing the research definition, and the IOM is doing the clinical definition. However the CDC is refusing to use our best test, the 2 day CPET test. So both studies look flawed.
 

Ecoclimber

Senior Member
Messages
1,011
This was posted on response to my comment from another blog which I found interesting.

"Gulf War and Health is a sick read. IOM openly started with Fukuda’s crap; then, like IDSA does with Post-Lyme, they talk about CMI, CFS, FM, as IBS as distinct wastebaskets without clearly telling the difference. Lots on somatization, pain thresholds, stress (i.e., child abuse), and anti-depressants though, with a mention of inflammation and the HPA and “gut-brain” axes just to say it’s not all in their heads but it’s not the war’s fault.

I didn’t see anything at IOM’s site specifying who selects panelists. Of 15 for that report, five were psychiatrists/psychologists, two had a GI pedigree, three were neuros/rhemies, and the rest were epies, pharmies, or just general docs or health policy types. One was Airborne and another from Walter Reed, but few had any military interest. No one was versed in chemical warfare or radioactivity. GW I researchers like Golomb, Haley, and Barinuik were left out. In fact, page 1 notes that “GW” includes I and II. So it’s not just the media’s fault that today’s vets are confused, also claiming to have GWI; it’s VA’s intent. It may not be Shinseki’s intent, but after that congressional testimony he’s cleaning out the wrong house.

Our docs made it very hard for us to recommend them ourselves. Dr. Batemann may get some research money, but she’s not enough to greatly influence the definition outcome alone. CAA thinks they’re in with DoD; big deal. DoD’s been in no hurry to help."

I see correlation to this current contract from what was stated above.
Eco
 

Ecoclimber

Senior Member
Messages
1,011
This was posted as a response to my comment I made on another blog which I found interesting.

"Gulf War and Health is a sick read. IOM openly started with Fukuda’s crap; then, like IDSA does with Post-Lyme, they talk about CMI, CFS, FM, as IBS as distinct wastebaskets without clearly telling the difference. Lots on somatization, pain thresholds, stress (i.e., child abuse), and anti-depressants though, with a mention of inflammation and the HPA and “gut-brain” axes just to say it’s not all in their heads but it’s not the war’s fault.

I didn’t see anything at IOM’s site specifying who selects panelists. Of 15 for that report, five were psychiatrists/psychologists, two had a GI pedigree, three were neuros/rhemies, and the rest were epies, pharmies, or just general docs or health policy types. One was Airborne and another from Walter Reed, but few had any military interest. No one was versed in chemical warfare or radioactivity. GW I researchers like Golomb, Haley, and Barinuik were left out. In fact, page 1 notes that “GW” includes I and II. So it’s not just the media’s fault that today’s vets are confused, also claiming to have GWI; it’s VA’s intent. It may not be Shinseki’s intent, but after that congressional testimony he’s cleaning out the wrong house.

Our docs made it very hard for us to recommend them ourselves. Dr. Batemann may get some research money, but she’s not enough to greatly influence the definition outcome alone. CAA thinks they’re in with DoD; big deal. DoD’s been in no hurry to help."

I see correlation to this current contract from what was stated above.
Eco
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
I just lost a lot of respect for Lucinda Bateman. Here's her comment about what kind of criteria we need: http://www.offerutah.org/hhsiom.html. I'll pull out one part:

We-- as providers, scientists, patients, advocates-- have communicated our concerns about the Fukuda case definition and have asked for action regarding the need for a clinical case definition and a less broad research case definition, and this a response to our request. While I believe that the Canadian Definition is more appropriate and user friendly in the clinical setting than any other existing alternative, in no way do I believe that any current ME/CFS case definition is the best we can do. We can do better in 2013 than we did in 2003 and 1990-94. I would like to have 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 CFS. Why not find terms and definitions to identify our obvious subsets?---post-viral fatigue with POTS, acute versus chronic onset, mid-life catastrophic illness, pain predominant illness, cognitive impairment predominant, mainly immune or any other alternate subgroup, if we can build an evidence base or biomarkers to support it?

This is ridiculous. The reason being that for years most of the research has been done using the fatigue-centric Fukuda definition. So where is she going to get all this science-based research, if not from a body of science where Fukuda dominates. The whole idea of pushing for the CCC is so we will have science on which we can draw conclusions.
 

Ember

Senior Member
Messages
2,115
I thought it was the CDC who are doing the research definition, and the IOM is doing the clinical definition.
Dr. Unger seems to be working on a case definition for both clinical and research purposes:
CDC has begun a multi-site clinical assessment of chronic fatigue syndrome (CFS) to characterize patients with CFS or myalgic encephalomyelitis (ME) in clinical practices of clinicians with expertise in CFS/ME.

The study will examine the differences and similarities between CFS/ME patients in the clinical practices of experienced CFS clinicians. We are using a standardized approach for data collection, meaning that all clinic sites will use the same type of forms or instruments to gather information. This will help us to describe the differences and similarities among CFS patients. The data collected using a standardized approach from expert clinical practices will be used to address the CFS case definition. Ultimately, this study aims to improve how we measure illness domains of CFS. This may allow patients to be sub-grouped to improve therapy and allow the underlying biology to be discovered.
The NIH has convened an Evidence-based Methodology Workshop "to address the issue of case definitions appropriate for ME/CFS research."
 
Messages
8
http://thoughtsaboutme.com/2013/10/03/spinning-around/

...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!...

...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....
 

rosie26

Senior Member
Messages
2,446
Location
NZ
I just lost a lot of respect for Lucinda Bateman. Here's her comment about what kind of criteria we need: http://www.offerutah.org/hhsiom.html. I'll pull out one part:





This is ridiculous. The reason being that for years most of the research has been done using the fatigue-centric Fukuda definition. So where is she going to get all this science-based research, if not from a body of science where Fukuda dominates. The whole idea of pushing for the CCC is so we will have science on which we can draw conclusions.

I agree Andrew

What a headache ! This would just make things messier. How would they even know if they got the subsets truly right. Wait till we get some science based evidence. Just leave things be for now. Have they got nothing better to do at the moment. Throw money at research instead. That is what we need right now.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
http://thoughtsaboutme.com/2013/10/03/spinning-around/

...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!...

...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....

How?

As I said above, if the 'community', is in agreement (broad agreement), with the experts, that the CCC should be taken on board in it's entirety: how are you going to cancel a contract that is now in place?

And how might you effectively advocate with the IOM should you determine that the contract cannot now be cancelled?

I think you need to start considering what it is about the CCC - aside from the expert's opinion - that you determine is better or more appropriate than e.g. carrying out a review, other criteria, and awaiting/using the results from the CDC work?

You might want to form a collaborative with the experts who remain committed to the letter that they wrote and/or ask them why they think the CCC is most appropriate.

The CCC will also need to be operationalised, the methodology of a standard clinical guideline needs writing; something perhaps that the IOM/HHS can be/should be left to do, but which patients and clinicians will also want to influence.

And wouldn't you want this opportunity to try and lobby for a removal of the term Chronic Fatigue Syndrome?

Someone needs to start doing something proactive and not protesting in a way that will isolate this community even more.

The protests from GWI veterans did not prevent the IOM doing what they did and that you find so reprehensible.

If the CAA are likely to be the most involved of all organisations with this exercise; then consider a suitable means of making your considered views known to them.

I would hope that CAA might at least consider canvassing their own members on this matter and taking a lead from those replies: a simple poll might help indicate member-sentiment.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I commented on Jeannette's blog:

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!
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Dr. Unger seems to be working on a case definition for both clinical and research purposes:

The NIH has convened an Evidence-based Methodology Workshop "to address the issue of case definitions appropriate for ME/CFS research."

You are right about the CDC Ember .

https://www.fbo.gov/index?s=opportu...858ddc024d0954ab38cea79960e&tab=core&_cview=1
This information will enable CFS researchers to provide a standardized approach to definition use in clinical diagnosis and management of CFS and improve standardization, integration and sharing of CFS data to benefit rsearch.

However the IOM contract, on information so far, is for a clinical definition:

https://dl.dropboxusercontent.com/u/57025850/MECFS IOM SOW.pdf

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.

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. Yet I think they will defend this as the IOM is doing it based on the existing evidence base which is highly distorted, whereas the CDC is doing a research project with enrolled patients. Hence they will claim there is no conflict between the studies.

I suspect for a clinical definition they explicitly want something very broad. This will however simply re-confirm CFS as a wastebasket definition, and cement in the minds of doctors that ME and CFS are the same.
 

justinreilly

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

As I said above, if the 'community', is in agreement (broad agreement), with the experts, that the CCC should be taken on board in it's entirety: how are you going to cancel a contract that is now in place?

And how might you effectively advocate with the IOM should you determine that the contract cannot now be cancelled?

I think you need to start considering what it is about the CCC - aside from the expert's opinion - that you determine is better or more appropriate than e.g. carrying out a review, other criteria, and awaiting/using the results from the CDC work?

You might want to form a collaborative with the experts who remain committed to the letter that they wrote and/or ask them why they think the CCC is most appropriate.

The CCC will also need to be operationalised, the methodology of a standard clinical guideline needs writing; something perhaps that the IOM/HHS can be/should be left to do, but which patients and clinicians will also want to influence.

And wouldn't you want this opportunity to try and lobby for a removal of the term Chronic Fatigue Syndrome?

Someone needs to start doing something proactive and not protesting in a way that will isolate this community even more.

The protests from GWI veterans did not prevent the IOM doing what they did and that you find so reprehensible.

If the CAA are likely to be the most involved of all organisations with this exercise; then consider a suitable means of making your considered views known to them.

I would hope that CAA might at least consider canvassing their own members on this matter and taking a lead from those replies: a simple poll might help indicate member-sentiment.

Firestormm, I've really got to disagree with you.

A contract can be cancelled, it's done all the time. The easiest way is for both parties to agree to cancel it.

We saw from the GWI experience what IOM is going to do here- definitely use non-experts, probably some with a psychiatric bias, to most probably come up with a muddled, nonsensical new definition and a recommendation, on the basis of "evidence-based medicine" that GET is the only effective therapy after 18 months wasting our energy and $1M in taxpayer money.

Since when has CAA listened to its members? It doesn't even have members because it does not want patient members because they would be able to vote for the board of directors, which would result in a change of board to one more beholden to patients and less to CDC and NIH money and perqs.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
A portion of Jeanette's post "The Perfect is the Enemy of the Good" was posted above. It really is an incredible piece. Pls read!

http://thoughtsaboutme.com/2013/10/02/perfect-is-the-enemy-of-good/#comment-3326

“Perfect is the Enemy of Good.”—Voltaire

In my last blog post about the CAA putting pressure on the 35 ME experts who, on September 23, 2013, signed an open letter to Secretary Sebelius urging her to adopt the CCC, I predicted that the CAA’s strategy was to get at least one signatory to change his or her mind and to get everything to unravel from there. Because if just one person falters, the unity of the expert community would be broken. Sadly, we just found out that that tactic worked. Dr. Bateman withdrew her support of the open letter this morning. Do I know for sure whether Dr. Batemen changed her mind because of CAA prodding? Of course not. But if the CAA was working in the interest of patients, it would have encouraged the experts to stick to their guns instead of implying that they might want to change their minds.

Dr. Bateman is now “support[ing] the IOM contract instead of advocating that [they] adopt the CFS Canadian Criteria as [their] official clinical definition.” I have to say this is hugely disappointing given that the expert letter “strongly urge[d] [Secretary Sebelius] to abandon efforts to reach out to groups such as the Institute of Medicine (IOM).” So, one could ask oneself why Dr. Bateman signed the letter in the first place then, especially since she is now, in essence, saying that the CCC are not good enough and that “we can do better.” So, basically, she changed her opinion on the entire substance of the letter by 180 degrees in one week. Her decision severely undermines any chance of HHS’s adoption of the CCC without attaching any strings to her support of the IOM contract, like a commitment by HHS to only have ME experts on the committee and nobody from the psych lobby.

I do not mean to call out Dr. Bateman because I have some kind of underlying issue with her. Quite the opposite. I respect Dr. Bateman very much. I even like her. She was there for us all the way in December of last year to testify at the Ampligen advisory committee meeting. I am very sorry about her tragic loss to this terrible illness and I do not believe that she has any agenda here. But that doesn’t make her move any less disappointing or painful or harmful. I would like to acknowledge, and express my gratitude for, Dr. Bateman’s substantial contributions to, and sacrifices for, the ME community in the past. I believe that she is actually coming from a good place trying to effect positive change. Nevertheless, I believe she is misguided and unfortunately, her decision changed the political landscape dramatically, for the worse for patients.

Naïveté about politics will never cease to amaze me. It’s common and it’s deadly. I have seen the we-can-do-better-than-the-CCC argument floating around the Internet. But I am afraid that option is not on the table here. Instead, we have exactly two options:

1. We will convince HHS to adopt the CCC ME disease definition.

2. We will get an ME disease definition by the IOM that revolves around “chronic fatigue” and that will make a mess of things for decades to come.

Are the CCC perfect? No, but perfect is not an option presented to us. The experts already said that the disease definition will continue to be updated over time, like it is with other illnesses. And clearly, the CCC are a much better starting point than “chronic fatigue,” which is what we’ll get from the IOM.

Does anybody really think that the IOM contract is an opportunity to create “evidence based [sic], broadly accepted clinical and research tools, [sic] that can accurately include or identify all subsets of the broad heterogeneous group that present under any case definition of CFS” using biomarkers, as Dr. Bateman suggests? Granted, that would be ideal. But given the history this patient group has with various government agencies, committees, etc., it must be abundantly clear to everybody who has been around this illness and its politics for a while that our best interest is not on the officials’ agenda. This is their opportunity to burry us, like they did with Gulf War Illness (GWI).

There have been two IOM contracts for GWI, the second one currently under way to create a disease definition. Suzanne Vernon of the CAA and Fred Friedberg of the IACFS/ME (both organization are represented on CFSAC) are on the IOM committee for GWI. Note that neither are experts on GWI. There is an unconfirmed rumor that Suzanne Vernon has a relative with GWI and it is conceivable that she has been and will be testifying on the committee as a caregiver. But given that there are 500,000 patients with GWI, the odds that she just happened to be picked as a caregiver “expert” are astronomical, especially since there are said to be plans for her to also be on the IOM committee to define “ME/CFS.”

The first IOM contract addressed treatment for GWI. The committee determined that the best clinical practices for GWI are graded-exercise therapy (GET), cognitive-behavioral therapy (CBT) and antidepressants. The committee’s report of January 2013 also mentioned those same clinical practices for “Chronic Fatigue Syndrome.” The report furthermore introduced the name “chronic multi-system illness (CMI)” to be used instead of GWI. An incredible slap in the face of the men and women who have given up their health and often their families, homes, friends and ability to earn a livelihood, all for this country.

Does any of this sound familiar to anybody? If the government has no problem throwing veterans under the bus, why would they hesitate to do the same or worse to us, given the huge nuisance we are to them. Make no mistake: The IOM contract has the overwhelming potential of leaving us worse off than Fukuda ever did! Let’s not sacrifice “much better” for an illusory “perfect!”
 

Ecoclimber

Senior Member
Messages
1,011
The tag on this about surveys. Someone mention surveys up above somewhere. Here is the survery given to veteran patients: A 2012 report by the group also said that VA staff was working to reverse those findings. For example, a survey the VA sent out to Gulf War veterans focused on psychiatric issues, rather than physical exposures. In March, committee members testified during a hearing with Steven Coughlin, a former VA epidemiologist, before a House committee where Coughlin said VA officials purposely hide or manipulate data to avoid paying costly benefits claims to Gulf War veterans.

I think you can see where they are going with this. I have contacted the above key people and researchers with my objections. I funded a research project for Dr. Bateman and Offer awhile back and let my objections be known to those involved.

The Issue is if VA & IOM are doing this crap to the Gulf War Veterans who served their country and who have great support from U.S. Citizens, where does it leave this community?

If the majority of the patient community across the world does not rally around this issue, than the changes we want will be DOA. I also resent fact of the short time span that patients knew about this contract.

The researchers can use the CCC in their research project nothing is stopping them. Diagnosing patients with ME/CFS is not that difficult if you follow the CCC or ICC ME primer. Why is there this sudden rush to get this done now after two decades of stonewalling?

Eco
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
If the majority of the patient community across the world does not rally around this issue, than the changes we want will be DOA. I also resent fact of the short time span that patients knew about this contract.

Tell me please what issue you are advocating 'we' rally around? All I have heard is what is wrong, how frightening it all is or rather might be, and how the GWI veterans being let-down will apply to us.

The researchers can use the CCC in their research project nothing is stopping them. Diagnosing patients with ME/CFS is not that difficult if you follow the CCC or ICC ME primer.

What are you saying? We support the CCC OR we support the ICC? And what about the name? It has always been a big issue for many people in the past. And what about treatment? What does the CCC say in that regard that you think we should advocate for, what does it say about treatment centres? About tests of exclusion? Are you entirely happy with the CCC or ICC?

Why is there this sudden rush to get this done now after two decades of stonewalling?

Because you have been saying for ages you aren't happy with the CDC definition. CFSAC called for a review. HHS are now forging ahead with one. Whether we like it or not.

There may be an 'agenda' to try and settle the continuing 'lobbying' from patients who are dissatisfied with their illness definitions: they may want to clean things up - but that doesn't mean it is a nefarious act on their part.

How many petitions have there been over the years for patients to sign, calling for things to change? And how effective have any of them been? I lose count of the times 'we' are asked to 'bombard' our representatives with this or that (sometimes competing) demand.

There has to be a better way of moving things forward. Of course even if every patient was polled appropriately, and the results indicated an overwhelming majority view - there will still be those who staunchly claim they are being let down, or that the result of an action is crap or demeaning.

I don't know what the solution is here. I liked the letter from PANDORA to the experts. I know Eileen Holderman has also canvassed the experts for their views: perhaps those will be made public; but how long do you propose protesting against this IOM contract before you decide 'we' should try and get on board?

Personally, I'd rather be in the room than left outside complaining. And, being at the table doesn't mean - of course it doesn't - that you get want you want: far from it. You were a management consultant I believe? You should know then about negotiation: as do I.

We don't have the answers. We don't have much in the way of substantive research evidence - we do have a lot of good quality (finally) science that is possibly going to point to the answers. But that isn't definitive.

This is going to require far more thought than cursing loudly and effectively banging our heads against the window as we always seem to do.

I don't think I'll comment any further in regard to this action until we hear more information.
 

justinreilly

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

The IOM review is NOT what CFSAC called for. They asked for a stakeholder definition meeting MADE UP OF EXPERTS AND PATIENTS advised by CFSAC to consider a definition, starting with the CCC.

The only way we have made any progress or will make progress is by "bombarding our representatives." Because HHS hasn't responded well enough over the years means we need to RACHET UP the pressure, not stop it. I feel strongly that we need to go to focus on lobbying Congress much more (hopefully with some money) than we have. That is our fastest and most efficient way of changing the whole ME situation for the better.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Personally, I'd rather be in the room than left outside complaining.
Firestormm, I'm sympathetic to some of your views. This is a difficult issue to grapple with. I would like our community to be deeply involved in, and leading, the process. But the point is that we will not be at the table. It's a closed process and we will be left outside the room, whatever we decide to do. This is the whole point of our complaints. There will be a single patient consultation session, and we don't know who will be on the panel of 'experts'.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
The letter from CAA to the thirty five signatories, excerpted below, was an obvious attempt to sway the signatories into renouncing their endorsements, not a neutral poll on current attitudes.

Cindy explained that the letter writing effort started a few weeks ago when there was little information and early skepticism about the IOM contract. However, Cindy now believes that the IOM effort as described more comprehensively in the Monday announcement is a positive course of action. She suggested contacting those of you who signed the letter and see how you feel now as well...
The CFIDS Association wants to weigh all of your input and help bridge communication between our community, the agencies and the media. Given this additional information we have regarding the IOM contract, can you tell us - either on or off the record - where you stand by the terms in the letter? Do you still want the IOM contract to be abandoned and the CCC to be adopted as the official definition? If you have any misgivings about the timing or content the letter, or feel the IOM contract should proceed as now outlined, we need to hear from you ...we must give the patients - all patients - the guidance and proper information they so desperately need.

Emphasis added

http://www.research1st.com/wp-conte...ail_IOM-and-the-Clinical-Case-Definition2.pdf