Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
Discuss the article on the Forums.

"Collaboration to Develop ME/CFS Educational Materials Based on IOM Report" CDC

Discussion in 'General ME/CFS News' started by Kyla, Aug 23, 2015.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

    Messages:
    721
    Likes:
    4,222
    Canada
    https://www.fbo.gov/index?s=opportu...cdbed4d91a7e725afa00eab110f&tab=core&_cview=0

     
    Valentijn, Cheshire, Sean and 7 others like this.
  2. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,447
    @Kyla - thanks for posting this.
     
    WillowJ, Kati and Kyla like this.
  3. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

    Messages:
    721
    Likes:
    4,222
    Canada
    This could really be either a train-wreck or an amazing opportunity depending on who gets the contract.

    Anyone have any ideas about organizations to contact and suggest they bid on this?
     
  4. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

    Messages:
    721
    Likes:
    4,222
    Canada
    Also, anyone know how the bid process works at HHS?
    Do they just take the lowest $ bid? Decide on merit?
    Is there a comittee or a single person deciding?
     
    WillowJ and snowathlete like this.
  5. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,447
    I haven't had a chance to go through the SOW (the pdf link n @Kyla's post) yet so I don't know how I feel about the stipulations in it which is why I wouldn't feel comfortable sharing this with an org yet.



    ETA: From a cursory read of the announcement, it looks as though more info might be posted in the next few business days.
    " The specific evaluation criteria included in paragraph (a) of the provision is anticipated to be added to this announcement within the next couple of working days."
    and references to possible addenda....
     
    Last edited: Aug 23, 2015
    snowathlete and Kyla like this.
  6. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,447

    I am not sure what the procedure is for these bids though I hope that others who have that info will share it here.
     
  7. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

    Messages:
    721
    Likes:
    4,222
    Canada
    Hi @Denise
    I skimmed the SOW, it is a contract primarily to produce a new toolkit and website.

    I think we all know how damaging the previous ones were for many patients.

    It's not so much that I have optimism as to what the CDC will put out, but that i would rather an organization that is familiar with this illness and with patients is working on this. At the very least so they can do damage control.
     
    WillowJ and snowathlete like this.
  8. Kati

    Kati Patient in training

    Messages:
    5,462
    Likes:
    19,550
    Kyla likes this.
  9. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,447

    I kind of get the feeling that this SOW is looking for a contractor to run the project. I don't know if any of our orgs have the capabilities (or the facilities, equipment, personnel, supplies etc) mentioned in the SOW.
     
    SpecialK82 likes this.
  10. Kati

    Kati Patient in training

    Messages:
    5,462
    Likes:
    19,550
    Probably not but it is my hope that the CDc knows that patient organizations should be consulted. You'd hope that wouldn't make the same error twice (make that 3 times) (make that 4times)
     
    ahimsa, Valentijn, Cheshire and 2 others like this.
  11. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,447

    The SOW mentions advocate orgs and individuals being involved.
    From Task 2:
    "The Technical Development Workgroup will formed as a separate entity from the Steering
    Committee and will include representatives from the following:
    o CDC CFS program
    o CFSAC representatives (e.g. chair/co-chair, patient advocate)
    o Medical professional societies (e.g., American College of Physicians, American Academy of
    Family Practice, American Academy of General Physicians, American Academy of Pediatrics,
    American Association of Nurse Practitioners, American Academy of Physician Assistants)
    o Medical education organizations (e.g., Association of American Medical Colleges, American
    Association of Colleges of Nursing, Association for Prevention Teaching and Research,
    Association of Schools and Programs of Public Health)
    o ME/CFS medical specialists (2 from IOM committee and 2 not on IOM committee)
    o Representatives of ME/CFS Advocacy community (such as New Jersey Chronic Fatigue
    Association, Massachusetts ME/CFS Association, International Association for Chronic Fatigue
    Syndrome/ Myalgic Encephalomyelitis (IACFS/ME, and active individuals) (Based on discussions
    with CDC, several representatives from patient advocacy groups shall be selected for their
    potential role in ME/CFS education material development)"


    I think it is also a question of whose voice is heard/implemented.

    Reading this SOW makes me think about the recent CFSAC agenda item where Nancy Lee asked questions from HHS of the CFSAC.

    This SOW also talks about using SEID and CFSAC did not agree on a term.....


    ETA - also HHS has not formally endorsed/rejected/other the IOM report so I find it interesting that CDC is going ahead with this without that info.
     
    Nielk, Valentijn, Cheshire and 3 others like this.
  12. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,447
    One of the biggest concerns is that the SEID criteria has not been operationalized so there is no way to know how well it id's the patients it is supposed to identify.

    I am also curious about the mention in the SOW of preparing for a systematic review re treatment/management.
     
  13. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,447
    I was unable to participate in all of the CFSAC meeting so I don't know what all the the CFSAC recommendations were.

    Does this SOW and project align with the CFSAC recommendations on the IOM report?
    (Given that the CFSAC meeting was ended 2 days before the release of this FedBizzOpp, it is unlikely that the agencies were able to respond to the recommendations in that short a period of time. Was this FedBizzOpp written after the meeting? )
     
  14. snowathlete

    snowathlete

    Messages:
    3,312
    Likes:
    14,610
    UK
    It's impossible to predict at this stage where the results of this will fall along the bad/good scale. There is a lot of work here for our community to make sure we get heard. I hope we are able to focus strategically on the most important things. I guess a lot of it will come down to who is chosen to carry this out and who the people providing input turn out to be, and as much the conversations that go on behind closed doors as those in public.

    This is potentially good though and I always like potentially good because it is an opportunity for change, and there is no way out of our current position without that opportunity.
     
    Valentijn, mango and WillowJ like this.
  15. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

    Messages:
    721
    Likes:
    4,222
    Canada
    I watched some of the CFSAC meeting online. There was mention of producing educational materials and the representative from IACFSME (sorry, not sure of the name) said they had the capacity to make them and were interested in taking on any contracts to do so.
    This seems pretty similar to what they were proposing there.
    Worth a shot.
     
    jimells, snowathlete and mango like this.
  16. JaimeS

    JaimeS Senior Member

    Messages:
    3,192
    Likes:
    11,785
    Mid-Ohio Valley, United States
    Well, I called and said I would help. I mentioned I was an ME patient as well as an educator and professional science writer. Let's see if they call back.

    [Edit: yes! Please don't bother him anymore, though; they are looking for a company to do this, and it is the company who will be responsible for recruiting people to put together educational materials and participate in discussions. They will have that company by September 30 at the latest. When I know the name of the company, I will post contact information here, provided I am not in crash-mode at the time.]

    -J
     
    Last edited: Aug 24, 2015
    ahimsa, Valentijn, Blue and 1 other person like this.
  17. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,608
    This is what IOM was tasked to do by HHS:

    Shouldn't it be the IOM's obligation to disseminate the information?
     
  18. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,447
    I wonder if this could be interpreted as the statement of work/contract made a distinction between developing a strategy for dissemination and the actual dissemination.
     
    Nielk, Valentijn and user9876 like this.
  19. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,462
    Developing a strategy for disseminating a definition is far from 1) disseminating the definition, and 2) disseminating information about the illness. It is, in fact, a tiny fraction of the work necessary for disseminating information about the illness to both the medical community and the lay public.
     
  20. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,608
    Where is the strategy that the IOM developed?
     
    WillowJ likes this.

See more popular forum discussions.

Share This Page