Myalgic Encephalomyelitis and Blood Donations

14th April 2010

Dear Ms McCall,

Thank you for your email of 14 March to Andy Burnham about Invest in ME’s questions regarding chronic fatigue syndrome/myalgic encephalopathy (CFS/ME). I have been asked to reply.

Decisions over who can give blood are based on a relationship of trust with each donor, which assumes the information they provide is honest and accurate. People with CFS/ME are temporarily excluded from donating blood on the basis that the condition has been diagnosed by an appropriately qualified clinician. If a donor has any doubts about whether they have been diagnosed with CFS/ME, with their permission the National Blood Service (NBS) would contact their GP or specialist for further information.

So people appropriately diagnosed with ME are temporarily excluded from blood donations.

Health professionals are free to use their clinical judgement, and whatever guidelines they choose, for the diagnosis and treatment of CFS/ME. As you will be aware, the National Institute for Health and Clinical Excellence has produced clinical practice guidelines for CFS/ME to aid diagnosis and treatment decisions.

Doctors can use whatever guidelines they like.

UK donor selection guidelines state that people who have previously been diagnosed with CFS/ME are able to donate blood once they have recovered and are feeling well. There is no set timescale for this, and no additional diagnostic tests are carried out before they can donate blood. Details of the current relevant donor selection guidelines can be found in chapter 3 of Guidelines for Blood Transfusion Services in the UK, published by the Joint United Kingdom Blood Transfusion Services and National Institute of Biological Standards and Control Professional Advisory Committee (JPAC), at www.transfusionguidelines.org.uk.

Patients are allowed to donate blood when they have recovered or feel better. You may be interested to know that the UK Blood Services, together with the Health Protection Agency, are undertaking a study of the prevalence in the UK donor population of a rodent virus recently linked to CFS/ME, which will be used to inform a risk assessment.

Any new findings that may have implications for the blood supply will be assessed by the Standing Advisory Committee on Transfusion Transmitted Infections (SACTTI) and then considered by JPAC and the Department of Health’s independent Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO).

As you will be aware, on 22 August 2007, the National Institute for Health and Clinical Excellence (NICE) published final clinical practice guidelines to the NHS in England and Wales on CFS/ME. This guidance can be found on the NICE website at www.nice.org.uk (enter ‘chronic fatigue’ in the search bar).

Clinical guidelines are recommendations by NICE on the appropriate treatment and care of people with specific illnesses or conditions within the NHS, based on the best available evidence. The development of the guideline was supported by work commissioned from the Centre for Reviews and Dissemination at the University of York, which updated an earlier review. A number of studies showed promising results for cognitive behaviour therapy (CBT) and graded exercise in the management of CFS/ME.

Clinical guidelines are intended to assist health professionals in making decisions about the most appropriate care for specific clinical circumstances. Whilst health professionals are encouraged to use clinical guidelines to assist them in making clinical decisions, this does not override their individual responsibility to exercise their clinical judgement, in consultation with the patient and informed by their medical history.

The guidelines recommend that CBT or graded exercise should be made available for patients with mild or moderately severe illness, as both treatments have been shown in clinical trials to control symptoms and improve physical function. However, the guidance is clear that treatment and care should take into account the patient’s individual needs and preferences. Patients should not be coerced into accepting any particular form of treatment and management of the patient’s condition should always be underpinned by an ethos of joint decision-making and informed choice.

I should point out that CBT has been successfully used in the treatment of many other physical conditions such as cancer, diabetes and heart disease. Its aim is to support a sustainable improvement in functioning and adaptation to illness, through gradual steps that are mutually agreed and regularly reviewed by patient and clinician. Applied appropriately, CBT can help the patient cope confidently with their illness, adjust to some of the consequences of being unwell, and feel more in control of their illness. Its use does not assume or imply that the cause of the illness is psychological.

No management approach to CFS/ME has been found to be universally beneficial and none can be considered a cure. Treatment to relieve the wide variety of symptoms that patients can experience is therefore a matter for individual doctors to decide, in consultation with the patient and informed by their medical history. As with any treatment, an explanation of the benefits and possible harmful effects of CBT should always be provided before decisions are made to offer and accept the treatment. It is important that health professionals recognise that people can vary in response to the treatments available and that it is appropriate to review therapy if symptoms appear to worsen as a result.

Regarding the Medical Research Council (MRC), I can confirm that the MRC is one of the main agencies for supporting biomedical research, and that the MRC is an independent body funded by the Department for Business, Innovation and Skills.

The MRC remains committed to funding scientific research into all aspects of CFS/ME, including evaluations of other treatments and studies into the biological basis of the condition. The MRC always welcomes high-quality applications for support into any aspect of human health and these are judged in open competition with other demands on funding. Awards are made according to their scientific quality and it would not be appropriate for the Department of Health to interfere in this process.

Finally, I note that Invest in ME requests information about the numbers of people diagnosed with CFS/ME.

This information is not collected nationally, although local health bodies are free to collect local information for commissioning service provision.

I hope that this reply is helpful.

Yours sincerely,

Priya Bassan
Department of Health