Don’t Stop!

As of 11:09 Eastern this morning, the sole source contract notice for the IOM case definition was updated to read:

Because of all of the concern from the public surrounding this potential sole source requisition, we have decided to discontinue this request.

I have reached out to multiple sources to confirm whether the contract has been cancelled (or simply suspended), and to determine what happens next. I will keep you posted.

BUT it is very very important that we continue our email action! We need and want a strong, accurate clinical case definition for ME/CFS! This is essential for any of our other efforts to be successful. So tell HHS that we need an case definition process that is inclusive of the ME/CFS experts and stakeholders to solve this problem once and for all.

Please stay tuned for updates as we work with sources and experts to refine our message and find out what HHS plans to do next. I will share updates with you in real time. Keep emailing HHS. YOUR VOICES ARE BEING HEARD. Don’t stop now!!!!


Update, September 4, 2013, 5:20 pm: The contract page has been updated again. The new update reads:

This request has been cancelled. However, HHS will continue to explore mechanisms to accomplish this work.

Honestly, I don’t even know how to interpret this. I have renewed my inquiries to get clarification. It seems to me that if HHS is determined to “continue to explore mechanisms,” then we should continue to offer our input into those mechanisms. Keep emailing. I’m hoping we’ll have further clarity from HHS tomorrow, as well as updates from the advocates working on this issue in DC.


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13 Responses to Don’t Stop!

  1. Pingback: Extremely Urgent! Tell HHS that you oppose the IOM contract – stop the proposed IOM Study! Update 4 Sept 2013 | Speak Up About ME

  2. Sasha says:

    Thanks, Jennie – I appreciate the updates!

  3. Valerie says:

    Thanks Jennie. I hope you don’t mind that I shared your letter to HHS and your update in an email to people to keep adding their voices. Great work. Thanks to all who are participating.

  4. Robert Morley says:

    I interpret that that they want to create a definition of some kind, but are backing off of IOM as the way to go about it.

    That may not be a bad thing, although as several people have pointed out, do we really need yet another case definition at this point? The CCC and ME-ICC are probably adequate at this point, though the CCC isn’t really the best choice for diagnosis, since anyone with a primary psychiatric disorder is excluded, if I understand it correctly.

  5. John says:

    LOL, that latest update should come complete with a DUN DUN DUNNNNNN………. soundtrack at the end of it, haha!


  6. cort says:

    Great news Jennie! Thanks for leading and educating everybody on this 🙂

  7. Kathryn says:

    Thanks for the answer posted in this piece, Jennie; forget the question I posted on last piece.

    I hope someone is asking that this decision is not made until after the next CFSAC, where our opinions and voices can be heard loud and clear as to which “mechanisms” the stakeholders will accept.

    Does anyone think that HHS thought they were doing something the patient community would appreciate, and now is thinking what ungrateful wretches we really are? There seems to be so much misunderstanding between us and them.

  8. and says:

    I also recommend Kogelnik and Montoya. Any of the doctors that see and treat real ME/CFS patients should be on advisory council. If we want the definition or name to change it has to be through a bill. Shouldn’t it?

  9. Sasha says:

    It would be good if the CFSAC committee could discuss what has happened at their next meeting in October (I gather they weren’t in the loop on this, which is astonishing). Do CFSAC members have any opportunity to put items forward for the agenda, or is it all top-down from the HHS?

    • Jennie Spotila says:

      I think the next CFSAC meeting is in November. My understanding is that members are able to suggest items for the agenda. The ultimate decision, however, is made by Dr. Lee who has that authority under the charter. I agree that they need to discuss this publicly. If I were on the committee, I would be steaming mad about being cut out of the loop.

  10. Sasha says:

    @Jennie Spotila

    Do you think anyone on that committee knows even now about this? Is it safe to assume that they’ve been aware of the action by patients?

    Given that CFSAC recommendations seem to be ignored by HHS, I wonder if CFSAC could be encouraged to come up with a motion on the definition issue that could be the focus for a mass action by patients.

    • Jennie Spotila says:

      At least a portion of the voting CFSAC members know about this now, and I assume the three nonvoting liaisons know. I don’t know if they found out through official channels or through the actions of patients.

      There’s no barrier to someone making a motion at the next CFSAC meeting about this. But some people feel the new requirement that recommendations be formulated with supporting material in working groups will prevent a recommendation on something like the definition. In retrospect, we should have realized that the failure to form a working group on case definition was a strong signal that something else was in the works.

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