Chronically Ill Patients to Boycott May 5, 2014 Public Meeting of the
Institute of Medicine Committee on Diagnostic Criteria for ME/CFS --
Calling on Congressional Leaders to Stop HHS/IOM Contract After VA/IOM GWI Failure
April 29, 2014
Washington D.C.: Chronically ill patients suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) announce a mass boycott of the Institute of Medicine (IOM) Study on Diagnostic Criteria for ME/CFS. Last September, the Department of Health and Human Services (HHS) entered into a one million dollar contract with the IOM to redefine ME/CFS. The patient community is united in protest of this contract and 50 top ME/CFS experts joined in asking HHS for the adoption of case criteria already universally recognized. HHS has ignored the protesters and the advice of the experts. The IOM committee is proceeding as contracted, meeting twice already.
This is the IOM’s second controversial government contract to redefine a complex disease. Veterans’ Affairs contracted with the IOM to establish case criteria for Gulf War Illness. In January, 2014, that committee issued a report in which they admitted they could not produce a definition, citing lack of expertise and an inability of the mainly non-expert panel to define such a complex disease. ME/CFS and GWI share similar disease characteristics and similar results can be expected from the current contract.
The third committee meeting is scheduled for May 5 and 6, 2014. The proceedings are secret, with the exception of an afternoon public session on May 5th, beginning at 1:00 p.m. at the NAS building, Room 120, 2101 Constitution Ave NW, Washington D.C. This is announced as an information-gathering session. The committee will hear presentations from Professor Leonard Jason, Professor Gudrun Lange, Postdoctoral Fellow Akifumi Kishi and a five-person patient/caregiver panel. All speakers were chosen by the committee. The public is invited to watch.
The IOM invited stakeholders to attend either in person or via webcast. Persons are also invited to submit written comments for the open meeting and placed in a public access file. A large contingent from the ME/CFS community are boycotting the IOM by refusing to attend the committee meeting, watch the webcast or submit written comments. It is the position of those boycotting that the IOM will categorize any stakeholder participation as proof of support, despite most of that participation being in the form of opposition. Rather than engage the IOM, the protesters will focus their efforts on getting assistance from their Congressional leaders.
The IOM Boycott is the latest in a stream of protests. Since HHS announced the IOM contract on September 23, 2013, the ME/CFS community has been united in opposition. They are following the lead of 50 worldwide experts in the field who co-signed a letter to former HHS Secretary Sebelius (coincidentally delivered the day the contract was announced) informing her they reached consensus on the adoption of the Canadian Consensus Criteria (CCC) for use in defining ME/CFS. The CCC was developed in 2003 by a group of top ME/CFS experts. It has been used by many physicians and researchers for the past decade. Biomedical research firmly supports its criteria.
The ME/CFS experts advised former Secretary Sebelius:
As leading researchers and clinicians in the field, however, we are in agreement that there is sufficient evidence and experience to adopt the CCC now for research and clinical purposes, and that failure to do so will significantly impede research and harm patient care. (emphasis added)
The experts further recommended:
In addition, we strongly urge you to abandon efforts to reach out to groups such as the Institute of Medicine (IOM) that lack the needed expertise to develop clinical diagnostic criteria for ME/CFS. Since the expert ME/CFS scientific and medical community has developed and adopted a case definition for research and clinical purposes, this effort is unnecessary and would waste scarce taxpayer funds that would be much better directed toward funding research on this disease. (emphasis added)
In support of the experts, 170 advocates signed a similar letter to former Secretary Sebelius. Nearly 10,000 ME/CFS patients, caregivers, advocates and health care professionals have signed two petitions urging HHS to stop the contract and adopt the CCC. Several letter writing and Twitter campaigns have been launched, all with the message to stop the IOM contract and adopt the CCC. HHS has not responded.
Patient protest swelled when the IOM appointed a majority of non-experts to the committee, including people with flagrant conflicts of interest. The IOM solicited comments and were fully schooled by stakeholders in the shortcomings of the proposed non-experts. Despite overwhelming evidence of conflicts of interest in several committee members, and the general unsuitability of the non-expert majority, no one has been replaced. The IOM has not addressed any public concerns.
Signatures are being gathered on a letter to be delivered to the Congress and HHS. The letter noted the recently failed VA/IOM contract:
This failure clearly exposes the IOM’s lack of expertise when dealing with complex diseases and their case definitions, and shows that any such projects are waste of money, which would be better spent on research. It also a waste of time, which patients who are desperately ill with this disease cannot afford to lose.
Individuals and smaller groups are also writing to the Senate and House HELP committee members and their Congressional representatives. Boycotting ME/CFS stakeholders have organized a social media Thunderclap and e-mail and Twitter campaigns, taking place during meeting hours on May 5th and, if health permits, patient advocate bloggers will release informational blogs.
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M. E. Advocacy.org is a project of May12.org, a 501(c)(3) not-for-profit corporation whose mission is to raise global awareness for neuroimmune and autoimmune diseases, including ME and CFS (myalgic encephalomyelitis and chronic fatigue syndrome.
M.E. Advocacy.org was formed to promote and support the advocacy efforts of ME/CFS expert researchers, clinicians and patient advocates.