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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 | 
