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!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

CAA: IoM Contract is an "Unprecedented Opportunity in the History of ME/CFS."

Discussion in 'Institute of Medicine (IOM) Government Contract' started by justinreilly, Dec 18, 2013.

  1. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,989
    Likes:
    4,964
    Sth Australia
    That is something you just said that I can finally agree with.

    It is due to the past and patients learning from the past, percisely why we dont trust now and all the effort we are putting in to try to make sure things do not go wrong. I think most of the patient group has learnt from the past.
    justinreilly likes this.
  2. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,781
    Are you including the fifty experts who have warned that “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?”
    Dreambirdie, Izola, Ren and 3 others like this.
  3. barbc56

    barbc56 Senior Member

    Messages:
    1,477
    Likes:
    883
    If you take SOME, as meaning everyone, then the only conclusion available, would be yes. IF that is the definition of SOME.
  4. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    640
    Likes:
    1,081
    Mercer Island Wa
    One does wonder how CAA can state the IOM is an "Unprecedented Opportunity in the History of ME/CFS" when neither CAA or anyone for that matter to best of my knowledge, has seen the IOM contract! The statement in and of itself is incredulous! Given the fact that HHS refuses to release details of the contract is compelling enough reason to suspect duplicity...failure to disclose, expect to be oppose!

    Eco
    Last edited: Dec 22, 2013
    oc100, Ren, justinreilly and 2 others like this.
  5. beaker

    beaker CFS/ME 1986

    Messages:
    413
    Likes:
    631
    USA
    I think the term biased/unbiased is being misused in this situation -- by most of those that I've read, and I believe by HHS and IOM . It is those w/ experience vs. those who have no experience.
    Bias connotes prejudice, while experience = knowledge. It may seem like a fine line to some. But it is quite clear to me. This illness is too complicated for folks to meet in a sterile environment {sans hands on patients } and come up with something meaningful. To me the issue is one of true experience w/ this illness.

    Sadly, studies w/ preconceived outcomes happen all the time. It's not suppose to, but it does. Look no further than big pharma for the more obvious examples. As someone who worked in a research capacity in the past, I can assure you that statistics are manipulated to fit what the desired outcome is all the time.
    oc100, Izola, Stuart and 3 others like this.
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    Nancy Lee's office doesn't count! :)
    Izola and Ecoclimber like this.
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    This doesn't make sense. You say the 50 experts constitutes 'everyone' to you. Since they all came out with the same exact statement and haven't said anything else on the topic, how can you say "SOME" of the 50 are going overboard while some are not?
  8. leela

    leela Slow But Hopeful

    Messages:
    2,402
    Likes:
    2,864
    Couchland, USA
    I'd like to suggest we save our energies for keeping on top of HHS, IoM, and all other pertinent agencies, rather than use them to
    pick apart individual patients' points of view. There will always naturally be a full spectrum of POV, and there is little to be gained from pointing out differences, yet much to contribute by staying alert and aware of what actions are being taken on the political stage.
    Snowdrop, jspotila, beaker and 2 others like this.
  9. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    640
    Likes:
    1,081
    Mercer Island Wa
    In their recent 'spin' piece, "Hope on the Hill" CFIDS made this statement: "Importantly, the CFIDS Association serves as a non-voting liaison committee representative on the CFS Advisory Committee and works to build appropriate relationships with HHS, CDC, FDA, and the NIH to ensure that ME/CFS is high on federal agency radar. This illness is facing issues of significant under-funding and we want that problem to be addressed. While the federal government historically has a perceived lack of urgency in issues related to ME/CFS, we have seen specific evidence that ME/CFS is on the federal radar"

    Is this the CAA's result of keeping ME/CFS on the radar at the NIH over the last ten years? The results:
    "The NIH is not committed. Over the past twenty years it has not worked very hard, or even hard at all, to enhance the health of people with Chronic Fatigue Syndrome. One could argue that the NIH has barely made an effort at all at doing that."
    http://www.cortjohnson.org/blog/2013/12/22/unfulfilled-commitments-broken-promises-nih-chronic-fatigue-syndrome-twenty-five-years/

    Eco
    oc100, Izola, beaker and 2 others like this.
  10. Izola

    Izola Senior Member

    Messages:
    350
    Likes:
    329
    Thank you for that. For very many years I've wanted to say publically "CAA does not represent me." How dare they present to the public as representing all those with ME/cfs.
    justinreilly likes this.
  11. Izola

    Izola Senior Member

    Messages:
    350
    Likes:
    329
    I think it means "Get in the way of us having a real advocate."
    justinreilly likes this.
  12. Izola

    Izola Senior Member

    Messages:
    350
    Likes:
    329

    :bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head:
    justinreilly and lnester7 like this.

See more popular forum discussions.

Share This Page