b “A Neglected Subgroup of Patients with ME/CFS” Rosemary Underhill | Voices from the Shadows Voices from the Shadows

“A Neglected Subgroup of Patients with ME/CFS” Rosemary Underhill

Rosemary Underhill  trained as a physician, a surgeon and an obstetrician in London. Recently she submitted a testimony to the October 2012 CFS Advisory Committee meeting. In it she calls for investigation of the subgroup of patients with ME/CFS which occurs in cluster outbreaks. The document is available on the Vermont CFIDS Association website here  

She says, “it is often stated that ME/CFS is not contagious. There is however much evidence that this disease can be communicable”. She requests the CFSAC to “recommend that the CDCs Epidemic Intelligence Service (EIS) investigate this subgroup of patients with ME/CFS….  that the EIS and the ME/CFS research community seek out cluster outbreaks of every illness resembling ME/CFS and investigate both the patients and their close contacts in the hope of finding the causal pathogen.”

She also states that “the case definition for patients in cluster outbreaks needs to be refined” and says: “Patients from cluster outbreaks need to be tested for unknown pathogens as well as known pathogens. Especially is the need to look for neurotropic and a B lymphotropic virus, which can inhibit killer cell activity, which has the ability to become latent, which may be able to inhibit replication of the polio virus and which may be difficult to culture.”

Rosemary Underhill was a member of the writing committee for the Chronic Fatigue Syndrome, Myalgic Encephalomyelitis – Primer  for Clinical Practitioners. It was produced by the International Association for CFS/ME and released earlier this year. It is a very informative, well written and easily accessible document. In June the CFS Advisory Committee formally recommend that the CDC Toolkit be removed from the CDC CFS website and that, instead, the more accurate  International Association CFS/ME Primer be made widely available to primary care physicians. The CDC refused to remove the Tool kit which recommends CBT and GET without mention of the harm that is likely to be caused to many patients: specifically those who fulfil the Intenational Consensus Criteria for ME which includes  as a crucial and compulsory symptom Post-Exertional Neuroimmune Exhaustion.