Still Waiting, Still Emailing

I thought I would have an update for you about the case definition efforts at DHHS and the ill-fated (for now) Institute of Medicine contract. I thought that I would have at least a few answers to the questions I sent to the Office of Women’s Health last week. But . . I haven’t heard anything – not from the Office of Women’s Health nor any of the other agencies.

The reasons for the cancellation of the IOM contract are a mystery. A more disturbing mystery is what HHS means when it said it will “continue to explore mechanisms to accomplish this work.” Is IOM still on the table? What do the voting CFSAC members think about this? Will HHS turn to the ME/CFS experts to define the disease?

In thinking about this issue (and waiting for any substantive response), I went back and reviewed some of the CFSAC’s previous discussions about the ME/CFS case definition. And I found the following quotes from Dr. Nancy Lee:

In general, the Federal Government isn’t in the position of telling doctors a case definition. I think a recommendation from CFSAC that the Secretary should tell people to use “X” definition will go nowhere because that’s not what we do. This is a clinical decision that has to come from the clinical community. . .

I’ve been in two or three meetings with the Secretary since I’ve been here. One of them was around this: the idea of a case definition, the need for one, and in addition, the need for a different name for the disease. She basically said that this has to be coming from the medical community. CFS Advisory Committee Minutes, October 4, 2012, p. 37, 38.

If the clinical community must create the case definition, per Dr. Lee’s representation of Secretary Sebelius’s statement, then why was the IOM contract even contemplated? Did the Statement of Work for the contract specify that clinicians and researchers working on ME/CFS should be the majority of the panelists? Usually, the IOM retains complete discretion in the appointment of panel members. Given that the IOM option was developed in secret with no input from the stakeholders, how can we simply trust that the right people would be on the panel?

I’m not a conspiracy theorist, but my trust in this process has fallen through the floor. I am not going to sit at home, twiddle my thumbs, and wait for HHS to enlighten me by answering my reasonable questions. I am going to keep emailing and demanding those answers. I hope you will join me.

What to do: I will email Secretary Sebelius every day this week, and copy the agencies involved. Use these addresses if you would like to join me: and copy the following people:,,,,,,,,

What to say: There are multiple sample letters circulating in the ME/CFS community, and you may have seen some on Facebook or different forums. This is the email I will be sending. Feel free to adapt my email to fit your own views.

Dear Secretary Sebelius,

Your Department, acting through the Office of the Assistant Secretary, recently published a sole source solicitation for the Institute of Medicine to “develop consensus clinical diagnostic criteria for this disorder.” The request was swiftly cancelled after ME/CFS advocates objected to the backroom secrecy, short response time, and the IOM’s patent lack of experience in creating accurate and meaningful case definitions for diseases. Despite the controversy, it appears that “HHS will continue to explore mechanisms to accomplish this work,” although your Department has refused to clarify what those mechanisms may be.

On October 4, 2012, the Designated Federal Officer of your CFS Advisory Committee characterized your opinion on the development of a clinical case definition for ME/CFS. Dr. Nancy Lee said, “I’ve been in two or three meetings with the Secretary since I’ve been here. One of them was around this: the idea of a case definition, the need for one, and in addition, the need for a different name for the disease. She basically said that this has to be coming from the medical community.” CFS Advisory Committee Minutes, October 4, 2012, p. 38. Your own Advisory Committee recommended that you convene a “stakeholders’ (ME/CFS experts, patients, advocates) workshop in consultation with CFSAC members to reach consensus for a case definition useful for research, diagnosis and treatment of ME/CFS beginning with the 2003 Canadian Consensus Document case definition and its utility for diagnosis and treatment of ME/CFS.” CFS Advisory Committee recommendation, October 2012. Despite all of this, your Department progressed a contract to the IOM with no assurance that the actual clinical and research ME/CFS experts would be the ones staffing the consensus panel, and concealed it from the public until the sole source notice was posted.

I have no confidence that your Department and its agencies will act to protect me or to ensure that I can receive accurate diagnosis and adequate treatment of my disease. Your agencies and personnel have repeatedly ignored the hallmark symptoms of this disease, disregarded the case definitions authored by ME/CFS experts, and resisted meaningful engagement to address the scientific questions that have plagued this disease for decades. This latest episode of your Department issuing and then cancelling a contract with IOM to create a case definition has only increased, rather than allayed, my concerns.

I urge you to consult with the researchers and clinicians who have actually worked on ME/CFS, and not rely on those with no direct experience or whose expertise is limited to overlapping or related conditions. We need transparency, accountability, and direct consultation with the experts, patients and advocates in order to have any hope of moving forward with an accurate case definition for ME/CFS. At present, your Department is only creating barriers to meaningful progress.


Jennifer Spotila

Feel free to adapt this email to your own views. Many many advocates are working round the clock to get more information, formulate responses, and get help from anyone who can. There will certainly be many more developments in the near future. Stay tuned, and keep emailing!


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6 Responses to Still Waiting, Still Emailing

  1. Katrina Berne says:

    Done! Jennie, as always, you are right on target. Thank you for providing this information and template so we can communicate our disappointment in the shoddy manner in which this issue has been handled to date. I especially liked your emphasis on the need for transparency and the need to have an accurate case definition created by expert clinicians rather than bureaucrats and self-proclaimed experts who have done unacceptable, biased research.

  2. Kelly says:

    I think it is important to ask for what you want, not just saying stop. As Malcolm X once said, if you are not part of the solution you are part of the problem.

  3. Joe Landson says:

    You don’t need to see my case definition…
    I don’t have the details you’re looking for…
    You can go on about your illness…
    Move along…

  4. Pingback: Patients to DHHS: Cancel the IOM Contract!

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