Simple Action

I am not the only ME/CFS patient worried about what kind of case definition the Institute of Medicine might create for my disease. I don’t have anything against the IOM. To the contrary, I recognize that it is an institution with extraordinary credibility and clout. That’s the problem, actually. If the IOM creates a weak clinical case definition for ME/CFS or worse, supports the psychosocial model of the disease, we are going to be trapped by that mistake for years to come.

Advocates are working together to try and stop this from happening. I am participating as well, and I invite you to join us. All you have to do is send one email every day for a week. Tell HHS that you object to this sole source contract to the IOM without consultation with patients and other stakeholders. The suggested email text can be seen here, and my own email follows below. Feel free to adapt the suggested text (or mine). Send your email to Secretary Sebelius at Kathleen.Sebelius@hhs.gov and copy the following people: howard.koh@hhs.gov; txf2@cdc.gov; Tomfrieden@cdc.gov; Marilyn.Tavenner@cms.hhs.gov; margaret.hamburg@fda.hhs.gov; Mary.Wakefield@hrsa.hhs.gov; collinsf@mail.nih.gov; richard.kronick@hhs.gov; MEACTNOW@yahoo.com

Dear Secretary Sebelius,

I am writing to voice my strong opposition to the HHS proposal to contract with the Institute of Medicine (IOM) to develop “clinical diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome.” I am a member of the ME/CFS community and have witnessed firsthand the devastation of this disease. I am extremely concerned that this planned IOM initiative will gravely harm ME/CFS patients.

I oppose this proposal for the following reasons:

IOM has only been involved in one other study to define a disease, the current effort for Gulf War Illness (GWI), and that process has not been concluded. Advocates and the Research Advisory Committee for GWI (RAC) have criticized the IOM report that redefined GWI as the overly broad chronic multisymptom illness (CMI). They further criticized the misguided focus on psychiatric issues and the failure to staff the IOM panel with GWI experts. Given this and IOM’s inaccurate characterization of CFS in the January 2013 IOM report on treatments for Gulf War Illness patients, we have no confidence that IOM is capable of producing a clinical consensus criteria that defines ME as described by CCC, ME-ICC and most importantly, the patients themselves.

This effort has been progressed in secret, apparently for many months and without consultation with key ME stakeholders, despite the claimed intent of the HHS-IOM initiative to develop a consensus definition. The timing of the announcement before a holiday weekend and the short response time indicate that HHS was not looking for input from the ME experts and ME community.

This IOM initiative does not reflect the October 2012 CFSAC recommendation on the development of a case definition for this disease and in fact is in direct contradiction to that recommendation. CFSAC recommended that a clinical and research case definition be developed in unison, that the effort begin with the Canadian Consensus Criteria and, most importantly, that it be developed by disease experts only.

I strongly urge HHS to abandon its plan for this ill-advised, wasteful, and unscientific initiative.

Sincerely,
Jennifer Spotila

Add your voice to ours, and send one email a day for the next week. It’s simple, and you can make a difference!

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7 Responses to Simple Action

  1. Robert Morley says:

    Wrote my own letter from scratch. Don’t know if a Canadian writing to them will do much, but it can’t hurt!

    • Jennie Spotila says:

      Thanks Robert! Every little bit helps. And a report from IOM will affect all of us around the world, not just US. Thanks!

  2. Tiki says:

    I think HHS couldn’t have chosen a worse time to try to redefine CFS. Many research groups in the world are currently working on subgrouping and biomarkers, and it will take some time before their results are made public. A ‘redefining CFS’ project at this moment in time is doomed to fail, and it certainly will be ridiculed in the future. I hope the Institute of Medicine in the US realizes the state of the knowledge at this moment in time, the nature of the research projects underway, and doesn’t accept this offer by the HHS now. It’s 1, 2 or even 3 years too soon to start working on this. I do hope the IoM will get involved in the future, but let’s wait for more reliable data than what we’ve seen in the past 20 years.

  3. Sasha says:

    Thanks for all the info on this, Jennie – you’re a star!

    I agree, those of us overseas should be emailing too – whatever criteria the US govt endorses will be tremendously influential and will affect how all of us are treated, whatever country we’re in.

  4. Kathryn Stephens says:

    Jennie, could you remove the semi-colons in the CC addresses? If anyone copies and pastes them, they’ll all be returned as undeliverable.

    Also, an email I received today says this action has been stopped due to public actions; would it be in our interests to keep sending emails if our actions have stopped the contract process?

    • Jennie Spotila says:

      The action has not been stopped. Stay tuned for more tomorrow on how we recommend proceeding.

  5. Holly says:

    Email sent! I really appreciate a template for when I am just not up to composing a letter myself. Thanks for sharing the information.

Comments are closed.