Letter to Secretary Sebelius

(This is a copy of an email I sent to the US Department of Health and Human Services Secretary Kathleen Sebelius)

Dear Secretary Sebelius,

I am writing to state how unacceptable it is that the HHS is proposing to contract with the Institute of Medicine (IOM) to develop “clinical diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome", without input, apparently from people with ME.

People with ME are dying from this disease, my wife who has had Severe ME for the last 20 years lives a life of unimaginable physical agony, without hope of treatment, cure or even basic respect.

That is because  ME is currently being wrongly  misrepresented and misinterpreted as CFS, a fatigue condition with treatable sleep, pain and fatigue using psychiatric interventions that are harmful to people with ME, because they deny their physical reality.

People with ME experience severe multi-system dysfunction and serious symptoms- these typically include :

Dysfunctional immune system .
Problems of oxidative stress .
Cardiac abnormalities.
Neurological abnormalities.
Disturbance in the hypothalamic -pituitary-adrenal axis.
Various muscle abnormalities.

Prevalence is high,epidemiological studies suggest that ME is more prevalent than multiple sclerosis, systemic lupus and HIV infection,with an annual estimated cost to the US economy of 19-25 billion dollars a year. 

What a waste of taxpayer's cash not to make every effort to development stringent, proper, best-practice, biomedical,  clinical guidelines.

I understand that the  HHS refuses to accept the internationally acclaimed CCC or the ME-ICC definitions of ME and even questions the hallmark symptoms of ME, confounding it with depression, deconditioning and non-specific chronic fatigue. If you spent five minutes with my wife, witnessing her physical suffering and endless torment  you would change your mind, I am sure.

It is vital that any criteria for ME are medically validated, that ME is  fully acknowledged as a Neurological Disease and that ME is separated from mental health Chronic Fatigue and primary psychiatric input.

In the face of such a serious physical illness, I do not understand how the HHS  is apparently so  dismissive of the  CFSAC's recommendation 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 the HHS to abandon its plan for this ill-advised,wasteful, and unscientific initiative.

Yours sincerely,

Greg Crowhurst RNLD, PgDip, MA

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