1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Leptin
Andrew Gladman reflects upon the recent IACFS/ME conference and the buzz surrounding a small molecule, leptin.
Discuss the article on the Forums.

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

Discussion in 'Institute of Medicine (IOM) Government Contract' started by justinreilly, Sep 28, 2013.

  1. alex3619

    alex3619 Senior Member

    Messages:
    5,969
    Likes:
    7,837
    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.
  2. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    562
    Likes:
    798
    Mercer Island Wa
    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
    taniaaust1, Valentijn and beaker like this.
  3. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    562
    Likes:
    798
    Mercer Island Wa
    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
  4. Andrew

    Andrew Senior Member

    Messages:
    1,916
    Likes:
    1,131
    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:

    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.
  5. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,771
    Double-checking, Nielk, I notice that Dr. Broderick is the only member of the CFIDS Association's new Research Advisory Council to have signed.
    beaker and Firestormm like this.
  6. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,771
    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."
    Firestormm likes this.
  7. safari

    safari

    Messages:
    8
    Likes:
    7
    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....
    taniaaust1, Valentijn, Marty and 4 others like this.
  8. rosie26

    rosie26 Senior Member

    Messages:
    721
    Likes:
    792
    NZ
    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.
    readyforlife and beaker like this.
  9. Firestormm

    Firestormm Content Team Lead

    Messages:
    5,273
    Likes:
    4,661
    Cornwall England
    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.
    jspotila likes this.
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,486
    Likes:
    1,137
    NYC (& RI)
    I commented on Jeannette's blog:

    beaker likes this.
  11. alex3619

    alex3619 Senior Member

    Messages:
    5,969
    Likes:
    7,837
    Logan, Queensland, Australia
    You are right about the CDC Ember .

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

    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.
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,486
    Likes:
    1,137
    NYC (& RI)
    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.
    Valentijn and beaker like this.
  13. alex3619

    alex3619 Senior Member

    Messages:
    5,969
    Likes:
    7,837
    Logan, Queensland, Australia
    We need our version of the letter to sign up for, or an online petition that can be signed by patients anywhere.
    SOC, Valentijn, beaker and 3 others like this.
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,486
    Likes:
    1,137
    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

    beaker and alex3619 like this.
  15. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    562
    Likes:
    798
    Mercer Island Wa
    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
    Valentijn, beaker, Nielk and 3 others like this.
  16. Firestormm

    Firestormm Content Team Lead

    Messages:
    5,273
    Likes:
    4,661
    Cornwall England
    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.

    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?

    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.
    jspotila likes this.
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,486
    Likes:
    1,137
    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.
    Roy S, Valentijn, Nielk and 1 other person like this.
  18. Bob

    Bob

    Messages:
    6,313
    Likes:
    6,601
    England, UK
    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'.
    SOC, rosie26, Valentijn and 4 others like this.
  19. Nielk

    Nielk

    Messages:
    4,826
    Likes:
    3,753
    Queens, NY
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,486
    Likes:
    1,137
    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.

    Emphasis added

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

See more popular forum discussions.

Share This Page