1. Patients launch $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!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

Patients to DHHS: Cancel the IOM Contract!

Discussion in 'Phoenix Rising Articles' started by Firestormm, Sep 19, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    650
    Likes:
    1,017
    View the Post on the Blog

    22 September 2013
    Note: Please be advised we have added clearer details on how to contact your Congressional representative to the above article with a link to the blog from Liz Willow.

    View the Post on the Blog
     
  2. readyforlife

    readyforlife Senior Member

    Messages:
    137
    Likes:
    135
    My new morning routine, coffee and emailing out this letter. Once again thank you for writing a letter that I can copy and paste.

    Readyforlife
     
    Nielk, beaker and Sasha like this.
  3. Keela Too

    Keela Too Senior Member

    Messages:
    252
    Likes:
    577
    N.Ireland
    Done and will repeat ;)
     
    Nielk, beaker and Sasha like this.
  4. Ema

    Ema Senior Member

    Messages:
    3,493
    Likes:
    3,968
    Midwest USA
    I sent it too.
     
    Nielk, beaker and Sasha like this.
  5. Sasha

    Sasha Fine, thank you

    Messages:
    8,753
    Likes:
    8,124
    UK
    Nielk and beaker like this.
  6. Sasha

    Sasha Fine, thank you

    Messages:
    8,753
    Likes:
    8,124
    UK
    Just sent today's email (remember it's a daily email, folks!).
     
    Nielk, beaker and readyforlife like this.
  7. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    454
    Likes:
    236
    West Coast USA
    Sent again.
     
    Nielk and beaker like this.
  8. snowathlete

    snowathlete

    Messages:
    2,241
    Likes:
    2,766
    UK
    Thanks Gabby, very readable and clear about what's happened. So important to show these kinds of actions are not ok - could set us back years again if we don't take this threat seriously!
     
    Nielk, beaker and Sasha like this.
  9. Ember

    Ember Senior Member

    Messages:
    1,743
    Likes:
    1,829
    Thanks, Gabby. I notice that the second time you use the IOM name for Gulf War Illness, you call it Chronic Multisystem Illness. It's hard to believe that they've called it Chronic Multisymptom Illness!
     
    WillowJ, Nielk, beaker and 1 other person like this.
  10. Denise

    Denise Senior Member

    Messages:
    235
    Likes:
    332
    In the January 2013 IOM report, they recharacterized GWI as Chronic Multisymptom Illness. (insert eye roll here)

    Others know ME(cfs) history, I hope you will provide additional info, but I seem to remember hearing that some years ago Reeves (?) referred to ME(cfs) as Chronic Multisymptom Illness.
     
    WillowJ and Nielk like this.
  11. Denise

    Denise Senior Member

    Messages:
    235
    Likes:
    332
    Very nice work Gabby! Thanks very much!
     
    Nielk likes this.
  12. taniaaust1

    taniaaust1

    Messages:
    8,234
    Likes:
    5,208
    Sth Australia
    Ive only managed to read half the article but all I can say (appologise to those on the committee for this as I know you have good intent but its truely what is currently going throu my brain) is How on earth can the CFSAC be so stupid to have set up a situation to even allow this to occur!! I predicted this would happen and expressed my views against this previously before this latest thing has occurred as it was the VERY THING I'd feared would happen.

    "In October 2012, the CFS Advisory Committe (CFSAC) advanced the reasonable recommendation that HHS convene a workshop of ME/CFS expert clinicians, researchers and advocates to act in consultation with CFSAC members, and work on a case definition taking the 2003 Canadian Consensus Criteria as a starting point. "

    Why do that in the first place, it just allowed one heck of a scary door to be opened (which was completely foreseeable to many of us) which may not just affect America but as many of us know it, whatever is done there also ends up affecting us others in the rest of the world.

    Why ask for this when there are ALREADY some good consensus definitions out there to use which have been put out by experts in this illness eg push for the CCC one or to use the International ME one. Why keep reinventing the wheel over and over, all that does is make the whole ME/CFS thing more and more confusing as more and more definitions are added out there.

    The WHOLE world needs to go to using one good definition, what on earth is wrong with the two current reasonable ones out there and does America truely have to try to invent another new one!! Each country shouldnt have their own definition of it anyway, its not far of us as patients and screws up all the studies. There has to be consensus international agreement of medical experts and we already do have that.

    I hope to come back when Im more up to it and be able to read this whole articl.
     
    beaker likes this.
  13. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,412
    Likes:
    2,066
    Australia
    Perhaps this will be a catalyst for those who really care (such as the physicians in that list) to come up with an entirely new definition and name? So that we can finally leave this whole ME/CFS nonsense behind?
     
    aimossy, Nielk, RL_sparky and 3 others like this.
  14. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    Oh I think we may well be hearing from some (all) of them in due course. And we have not yet heard from e.g. CAA I don't believe.

    I am left wondering (having only really digested all of this debacle by 'helping' publish the article above), if anyone has contacted the IOM? By 'anyone' I mean our advocates.

    I mean is it wholly outside of the realms of possibility, that the IOM will not gather about itself our expert clinicians, and patient representatives and initiate a period of consultation?

    Do we know, yet, what the aims of the contract - the purpose of the presumed 'new' diagnostic criteria - might be i.e. how it was all defined by HHS? The answer could well be in one of Gabby's links, and I probably didn't read it well enough of course.

    I must confess that I do seem to recall some mention of who might be on such a consultation panel should it come into existence - which I feel it surely must: but I can't remember now where I saw the conversation! Though I might be confused with the panel for GWI.
     
  15. Sasha

    Sasha Fine, thank you

    Messages:
    8,753
    Likes:
    8,124
    UK
    The canary in the mine on this has been GWI. Of the 16 panel members chosen by the IOM to draw up new diagnostic criteria for GWI, Anthony Hardie (a prominent GWI activist) identifies only Dr Suzanne Vernon as an expert in GWI without a bias towards psychological explanations for the illness; the other members have either no experience with GWI at all or have previously expressed their preference for psychological explanations.

    Here's his (very impressive) testimony, including criticism of the IOM project at 5:00 minutes.



    He writes: ‘The most striking characteristic of the group selected to be on this committee is how few qualify as experts in the disease. Case definitions are typically developed by committees of experts in the disease in question, using detailed data sources to ascertain objectively which elements best characterize the disease. The VA Gulf War Strategic Research Plan just released called for a case definition to be developed in this well-accepted fashion: “The case definition should be developed by a consensus panel of experts in the field, using analytical results from a comprehensive evaluation of available data resources.”’

    That's the issue. This isn't the kind of approach - a panel mostly non-expert in ME but biased towards the psychosocial model in charge of redefining ME - that I think any of us want to see. It's a recipe for disaster and if the HHS want to give this contract to the IOM they need to be explaining right now their safeguards against making the same mistake twice. But unless they stop that GWI committee dead in its tracks and admit that mistake, that's not going to happen. They appear to be locked into a very destructive course of action.

    I've seen no such mention. The IOM hasn't even been appointed so there'll have been no such preliminary list of committee members.
     
  16. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,412
    Likes:
    2,066
    Australia
    Firestormm

    It took me a little while to realise the problem too, but the lack of consultation and transparency indicates the complete unwillingness to empower the ME and CFS community and this precisely is the problem.
     
    WillowJ, jimells, Nielk and 4 others like this.
  17. beaker

    beaker CFS/ME 1986

    Messages:
    430
    Likes:
    661
    USA
    I also CC'd "Presiden Barack Obama"<president@whitehouse.gov>

    I am tired of the forms at my Senator and Congressperson's pages. I want to email directly. Even the White house wants you to use the form.
    I want to cc them. I did some hunting around and found this.
    If you have different information, re the email I found, please advise.
    Thank you !
     
    WillowJ and Nielk like this.
  18. beaker

    beaker CFS/ME 1986

    Messages:
    430
    Likes:
    661
    USA
    I got a reply back from the white house asking me to use the dang form. ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhh.
    What a pain.
    More energy. That will have to wait.

    Does anyone remember the name of the special liaison for ME/CFS to the President ?
    I think that would be an excellent person to include.
     
  19. medfeb

    medfeb Senior Member

    Messages:
    177
    Likes:
    257
    Snow Leopard - you are absolutely correct! HHS is unwilling to even engage, never mind empower the ME community. They are showing complete disregard both patients and experts. THe real question is why are they insisting on doing this when experts have already created consensus criteria, one of which has been in use clinically and in research for years.

    Regarding the composition of the IOM panel...
    In addition to what has happened with the GWI panel, we also have the repeated statements by HHS that non-experts need to be involved in defining the disease.

    But the concerns are broader than just the use of non-experts as panel members.

    In January, the IOM report on treatment of Gulf War Illness recharacterized GWI to be chronic multisymptom Illness (CMI), defined “as the presence of a spectrum of chronic symptoms in at least two of six categories—fatigue, mood and cognition, musculoskeletal, gastrointestinal, respiratory, and neurologic—experienced for at least six months.” Hardie said that they defined the disease so broadly as to include nearly any human healh condition.

    The current IOM initiative to create a definition is charged to “develop a consensus case definition for chronic multisymptom illness (CMI) as it pertains to the 1990-91 Gulf War Veteran population.”As it pertains' indicating that CMI could be found in other populations? I understand the original IOM report says that CMI is also in the civilian population.

    As a clinical entity, CMI is even more nonsensical than Fukuda. But unfortunately, its a clinical entity that ME would fit in. Given Unger's public questioning of PEM as a hallmark criteria at the last CFSAC, its unlikely that this process would result in a more narrowly defined criteria and is unlikely to endorse one of the criteria that our experts have created.

     
    Nielk, beaker and Sasha like this.
  20. medfeb

    medfeb Senior Member

    Messages:
    177
    Likes:
    257
    Beaker
    It was Nancy DeParle but she is gone.

    I hear you on the forms. They do take more energy and are a pain. But the advantage is that the forms can make sure the comments get to the specific staffer who deals with health care issues since we dont know all of their email addresses. I spoke to a staffer last week in one of the senator's offices and she said that the use of the form makes it easier for her to see the issues that people are raising and puts her in a better position to help us.
     
    WillowJ, beaker and Sasha like this.

See more popular forum discussions.

Share This Page