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.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.
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
