IOM Contract - my feedback letter

The Institute of Medicine (IOM) has been contracted by the Department of Health and Human Services (HHS) in USA to create a definition for CFS (& ME).  

There is huge concern about this within the patient community. 

A panel has been put together and the IOM has called for feedback on that panel.  Many patients feel that the IOM has no place redefining ME, and have written to explain their views.  

A copy of my letter is given below:

Sally Burch
[My full address]

23rd December 2013

By Email

Dr Carmen Mundaca-Shah

Institute of Medicine ME/CFS Definitional Study

500 Fifth St. NW

Washington, DC 20001

mecfs@iom.edu

RE:

Institute of Medicine ME/CFS Definition Provisional Panelists

Dr. Mundaca-Shah,

      The opportunity to comment on the Provisional Panel is appreciated.

      ME, myalgic enchephalomyelitis, is one of the least socially acceptable illnesses to acquire in today’s world. This is in no short measure due to its association with the name Chronic Fatigue Syndrome (CFS).

At one point in time it might have been useful for researchers to look for similarities between various fatigues of unexplained origins, and to collect them together under the CFS umbrella. That time should now have passed.

I am an ME patient in Northern Ireland, and I am very concerned by what is happening in USA. It seems that ME can be defined by the Canadian Concensus Criteria (CCC) but for some reason, the Department of Health and Human Services (HHS) in USA has decided that this is not sufficient.

I understand that the HHS has contracted the Institute of Medicine (IOM) to redefine the illness CFS and along with it the illness known as ME. They have continued with this despite no less than 50 ME experts, 171 ME advocates, and over 3000 ME patients and supporters calling for this contract to be halted, and for the CCC to be adopted without further ado.

I understand that the feedback facility, I am using to submit this letter, is intended for feedback on the individuals selected for the IOM panel. However, I want it first to go on record that I think the IOM contract should be halted, the panel disbanded, and the CCC immediately adopted as the working definition for ME, and that any further changes to the CCC be made by experts working on the physiology of ME.

The IOM panel itself, appears to represent a broad spectrum of individuals, however it seems that not all are ME experts. Some seem to have a background that would suggest that they might favour a broad and sweeping definition for ME that might include individuals with other vaguely defined fatigues. Indeed there is a worry that some panel members might even favour a psychosomatic approach to this illness.

Therefore I would like to suggest that the IOM panel (if it must operate) should ONLY include individuals who have a clear understanding of the physiology of ME. Most especially, anyone who claims that ME can be helped by increased exercise, should be removed from the panel, because of their lack of understanding of the Post Exertional Malaise (PEM) that so disables ME patients world over.

If it is the intention of the HHS that the IOM panel should look at ALL medically unexplained fatigues lasting longer than six months, then I would urge that ME be removed from the IOM panel’s focus.

Finally I would like to draw your attention to the in depth response sent to you by Justin Reilly.  I have read and fully endorse the points that he has made and in particular would like you to take note of his comments on individual panel members. 

Thank you for taking time to consider my points.

Sincerely

/s/

Sally Burch

Justin Reilly's Letter to IOM