Donating Blood with Fibro

Following the recent introduction of the ban on blood donation by people with CFS/ME, Lindsey Middlemiss, founder & chair of FibroAction, wrote to the Department of Health asking for clarification of the position regarding blood donation from patients with Fibro, especially given the overlapping symptoms of the two conditions and the fact that many people in the UK are given a dual diagnosis.

We have now had a reply to this query. The letter from Dr Barnes, Associate Medical Director - Donors, of NHS Blood & Transplant, is reproduced below for your information.

Dear Ms Middlemiss

Thank you for your letter of 27 September, regarding the new restrictions for blood donation by patients with ME/CFS and their relevance to patients with Fibromyalgia Syndrome. Colleagues at the Department of Health have passed on your letter and asked me to respond directly to answer your query.

The change to the donor selection guidelines regarding ME/CFS came into force on 1st November 2010. The amendment has been made on the grounds of donor safety, to bring practice for those with ME/CFS in line with other conditions where individuals are permanently excluded from blood donation to protect their own health and other serious central nervous system disorders. This follows a recommendation by the UK Blood Services Standing Advisory Committee on the Care and Selection of Donors, and Joint Professional Advisory Committee (JPAC).

There is a separate entry in the donor selection guidelines for fibromyalgia. This is because unlike ME/CFS, fibromyalgia is not currently classed as a relapsing condition or a central nervous system disease by the World Health Organisation, but as a musculoskeletal condition. At present, a donor with fibromyalgia would be accepted as long as they were well at the time and did not have any additional features of ME or Chronic Fatigue Syndrome. I understand that most fibromyalgia patients report that their symptoms do not improve over time. Therefore the condition is classed as chronic rather than relapsing and as such at the present time does not attract a lifetime deferral from blood donation, although given the debilitating nature of the condition it is doubtful that there are many sufferers who are ever well enough to donate.

The Department of Health's independent Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO) and the National Expert Panel on New and Emerging Infections (NEPNEI), monitor developments, both nationally and internationally, in conjunction with the UK Blood Services and the Health Protection Agency. All risk assessments are regularly reviewed, and if new evidence comes to light which means that risk assessments need to be amended, then this is done.

I hope this information is helpful in addressing your query.

Yours sincerely
Dr S M Barnes FRCP FCEM
Associate Medical Director - Donors