Sebelius “Responds” to the Experts: “You Mean This Is Not What You Wanted?”

On November 12, 2013—as I found out just yesterday—more than seven weeks after the original open expert letter was sent to her, Secretary Sebelius finally provided a brief “response” mirroring the talking point provided in the FAQs of November 15, 2013 about the IOM contract. Here is the link to the Secretary’s letter.

To remind everybody, the expert letter (1) made a compelling case for the adoption of the Canadian Consensus Criteria (CCC) as the case definition for ME/CFS, (2) strongly urged HHS to use the CCC as the sole case definition for ME/CFS in all HHS activities relating to this disease and (3) strongly urged HHS to abandon efforts to “reach out to” (i.e., contract with) the Institute of Medicine (IOM) to develop clinical diagnostic criteria for ME/CFS.

Abandon the IOM Effort

Let me start with the last request by the experts. The Secretary’s letter “responds” to it by asserting incorrectly that (1) HHS does not generally develop diagnostic criteria for disease conditions and (2) the IOM study was the most appropriate response to the CFSAC recommendations at its October 2012 meeting:

Because HHS does not generally develop diagnostic criteria for disease conditions, an IOM study was determined to be the most appropriate response to the recommendation made by the Chronic Fatigue Syndrome Advisory Committee (CFSAC) during its October 2012 meeting.

HHS does not generally develop diagnostic criteria

Let’s look at the first part of the sentence:

Because HHS does not generally develop diagnostic criteria for disease conditions …

HHS does not generally develop diagnostic criteria for disease conditions? When I read this, I couldn’t decide whether to start laughing hysterically or beating my head against the wall repeatedly. I mean, really? Correct me if I am wrong, but have we not been suffering tremendously for almost 20 years under the Fukuda definition developed and adopted by the CDC? In light of this reality, the letter’s assertion is outrageous.

And one more time, HHS does not generally develop diagnostic criteria for disease conditions? You mean unlike the IOM? According to Dr. Kenneth Shine, former president of IOM and chair of the current IOM committee tasked with the development of a case definition for Chronic Multisymptom Illness (formerly Gulf War Illness), developing disease definitions is such “a unique task” for the IOM that that Dr. Shine “could not recall when the IOM was last charged with defining a disease.”

Most appropriate response to the CFSAC recommendation

This sentence also reflects an apparent and puzzling misunderstanding of the October 2012 CFSAC recommendation:

… an IOM study was determined to be the most appropriate response to the recommendation made by the Chronic Fatigue Syndrome Chronic Advisory Committee (CFSAC) during its October 2012 meeting.

Here is what CFSAC recommended at its October 2012 meeting:

CFSAC recommends that you will promptly convene (by 12/31/12) or as soon as possible thereafter) at least one stakeholders’ Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) experts, patients, advocates workshop in consultation with CFSAC members to reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS beginning with the 2003 Canadian Consensus Definition for discussion purposes.

Everybody who watched that October 2012 CFSAC meeting was quite clear that the recommendation referred to ME/CFS experts. Nevertheless and quite disturbingly, it has been widely reported by patients who have been in touch with the IOM that the IOM is recruiting professionals without ME/CFS experience. Would you trust a heart surgeon, maybe even the world’s foremost one, with your potentially fatal brain surgery? Of course not. This not only makes no sense, but it’s also contrary to the obvious intent of the CFSAC recommendation as it relates to the involvement of professional with ME/CFS expertise only. In addition, despite the CFSAC recommendation, patients and advocates will not be included in the IOM committee according to the November 15, 2013 IOM contract FAQs:

Does the HHS contract with the IOM to include a patient as a committee member?

No.

Adopt the CCC

HHS asked that the committee consider the 2003 ME/CFS Canadian Consensus Definition (CCC) as well as other published definitions and guidelines during it’s deliberations.

The Secretary’s letter addresses the first and second request of the experts (to adopt the CCC and use it as the sole case definition for all HHS activities relating to ME/CFS) by essentially dismissing this recommendation, which couldn’t have been any clearer or stronger. How did it do that? By lumping it in with “other published definitions and guidelines” to be considered by the IOM. This would presumably include the NICE Guidelines and the Oxford criteria, which have a heavy unscientific psychological bias. The experts were very clear: Adopt the CCC now. To pretend that “considering” them even comes close to the experts’ recommendation is baffling.

A few more points about the Secretary’s letter

Furthermore, it is in the best interest of patients and clinical providers that the IOM consider recent scientific advances as it develops recommendations.

To suggest that going with an IOM “study” is in the best interest of the patients, after the IOM threw veterans—a group of citizens that pretty much everybody is supportive of, even those folks who are against the wars—under the bus is at best disingenuous. Personally, I find it insulting. If the IOM has no sleepless nights over the IOM Gulf War Illness fiasco, what do you think they will do to patients who have historically been neglected, abused and labeled as lazies crazies by the government, the medical establishment and the insurance companies in part due to the botched Fukuda definition?

HHS is committeed to fostering open dialog on this topic and values your expertise. The IOM study is a topic of discussion for the November 2013 CFSAC meeting, and the informations about the study is available on the IOM website (link).

Moreover, the “discussion” of the IOM “study” referenced in the Secretary’s letter at the upcoming CFSAC meeting will consist of 30 minutes (!) given to the designated federal officer, Dr. Nancy Lee. A committee discussion of the issue is not on the agenda and, thus, presumably will not be allowed during the meeting. The referenced information on the IOM website is so rudimentary as to be meaningless. Finally, assuring us of HHS’s commitment to fostering open dialog is gag producing given the secrecy and lightning speed with which this “study” is being forced down our throats as well as the tardiness in “replying” to the experts and the complete ignoring of the advocates. Open dialog? HHS has not even produced the contract under which this IOM “study” is being performed. And if an open dialog is so desired by HHS, why not reply in kind, with an open letter, to the experts?

One could speculate as to the real motivation behind the hastily and secretly entered-into IOM contract. After all, this kind of urgency, relating to health issues, coming from the government is highly unusual, if not unique, in cases other than national-health crises, like a threat to the blood supply. But in any event, HHS’s four-paragraph letter is an outright dismissive and perfunctory statement in response to a dramatic, unprecedented and unified plea from virtually all ME/CFS experts. It’s a seemingly calculated slap in the face of not only the experts, but also everybody suffering from this debilitating disease and their families.

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15 Responses to Sebelius “Responds” to the Experts: “You Mean This Is Not What You Wanted?”

  1. Ess says:

    Wellll, I think I am going to throw up!! This is NOT being taken seriously at ALL . . . NOT bothering to/NOT wanting to really look into this critical situation in ‘detail’ ALL THE WAY TO THE TOP–just ‘skimming the surface.’ OR–is Sebelius the top ?? She AIN’T doing a good job on behalf of the pw ME/CFS!

    Thanks for keeping us informed, Jeannette. UNfortunate as this ‘delayed’ response is from Sebelius–it is actually NOT a surprise in this three-ring circus of a nightmare!

    Sebelius, like the others involved in this fiasco are just white washing this serious health crisis–there is double talk in her response, DISmissal, DISregard and total DISrespect, as you have painstakingly laid this out for us, Jeannette.

    OPEN dialogue . . . yuk, yuk, yuk 😦 (Talk all you want you peeps with ME/CFS; we don’t care–makes no never mind to us–we’ll just stick to our status quo in this ‘OPEN dialogue’!!!!)

    Seriously, as you say–one might rise to laughter–because it is soooo ridiculous–soooo Sebelius states that the HHS does not typically develop disease criteria–YES, that is correct; HHS does NOT–AND . . . NEITHER does IOM!!

    The EXPERTS are right there and available!!

    Yet–here we are in STUPIDVILLE–name of the game –SABOTAGE getting to the SCIENCE and cure for ME/CFS. The GOVERNMENT and its agencies are ‘smugly working hard’ to essentially keep us locked into this ‘life sentence’ of ME/CFS. C R I M I N A L ! ! !

    What a SHAM; how SHAMEFUL . . .

  2. oerganix says:

    Yes, it’s a slap in our faces and an extension of their middle finger to those mecfs experts who signed the letter, and to patients and their families.

  3. Ess says:

    We need someone in position of power in the government that ‘KNOWS’ and ‘CARES’ to help us!!

  4. Carrie says:

    Thank you for reporting this, Jeannette.

  5. Pingback: Sebelius “Responds” to the Experts: “You Mean This Is Not What You Wanted?” | ~ME Nytt~

  6. susanna says:

    ‘your letter was shared with the committee’…Which committee? Is there already an IOM committee formed to which some of our expert may be added? Is there something I’m missing?
    How do we know that if some our experts are admitted they won’t be treated like the poor relative?

    So patronizing and insulting.

  7. Pam A. says:

    Given this calculated effort by HHS to squelch scientific progress, we should really start thinking of “leaking” this story to the media (David Tuller from the WSJ?). To think that scientists are practically begging government to accurately address a health crisis and to NOT spend $1 million dollars is a juicy story waiting to be told….

  8. Ess says:

    I like your thinking, Pam !

  9. Debbie McGarrity says:

    It is a slap in the face but what’s expected unless people with me put pressure in services with their me it never will,

    Yesterday I was told by a senior social worker ME is tiredness isn’t it? I didn’t know was so painful! But we have nothing to offer you! Ok I will gur drink myself into oblivion and neglect my children I bet you will have a service then!

    I cannot even get direct payments for help with an autistic child? ME is out the window. I am now writing to the minister of health to say should anything happen to myself or my children my solicitor holds a statement to show negligence and responsibility to the Health Trust or NHS.

  10. Pingback: HHS and the IOM Saga: The Definition of Insanity and a Bad Case of Stockholm Syndrome | Thoughts About M.E.

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