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Reply from DoH (Re: Letter to Paul Burstow of 2nd March)

Posted Mar 25 2011 12:57pm
Permission to Repost

Our ref: DE00000597428 
Dear Ms Pring,

Thank you for your further email of 2 March to Paul Burstow about myalgic encephalomyelitis (ME).  I have been asked to reply.

I would like to assure you that the Department of Health has always relied on the definition set out by the World Health Organization in its International Classification of Diseases (ICD) under ICD Code G93.3, subheading ‘other disorders of the brain’.  Many different potential causal factors, including those of a neurological, endocrinal, immunological, genetic, psychiatric and infectious nature have been investigated, but the Department accepts that the diverse nature of the symptoms cannot yet be fully explained.

I note your continued interest in xenotropic murine leukaemia virus-related virus and research undertaken by the Medical Research Council into ME.  However, I note that you have raised these issues on a number of occasions and that my colleague replied to you most recently on 23 February (our ref: DE00000587655).  I am afraid that there is nothing further I can add to that reply.

I also note your concerns about the National Institute for Health and Clinical Excellence (NICE) guidance.  As you are aware, NICE recently conducted a review to determine whether CG53 should be updated.  

During the public consultation on the review proposal for CG53, a number of stakeholders advised that the results of the research trial PACE (‘Pacing, Activity and Cognitive behaviour therapy: a randomised Evaluation’) are due to be published later this year.  The PACE trial is the first in the world to test and compare the effectiveness of four of the main treatments currently available for people suffering from ME.

As this significant trial may affect NICE’s final decision regarding whether its existing guideline warrants an update, NICE has deferred its final review decision, which was due to be announced in December 2010, until further information is available.  This is so that the conclusions made by NICE are as accurate and informed as possible.  In the mean time, in the interests of high quality patient care, it is important that health professionals continue to adhere to the existing recommendations as they represent best clinical practice for the NHS.

I hope that you will understand that, for these reasons, it would be inappropriate for the Department to pre-empt the outcome of this review and comment further at this time.  Further information about the Clinical Guideline is available at .  

NICE is an independent body, so you may therefore wish to raise your concerns about the guidance directly with NICE’s Chief Executive, Andrew Dillon, at the following address:  

MidCity Place
71 High Holborn
London WC1V 6NA

You also mention graded exercise therapy and cognitive behaviour therapy (CBT), which were included in the PACE trial.

These approaches have been shown to benefit some people, but previous trials were criticised for being too small or selective to evaluate their effectiveness definitively.  It was important that the research be done, as while some patients have been helped, it is the case that some have reported a worsening of symptoms when these treatments have been applied outside of research settings.

All patients recruited to the PACE trial received detailed patient information literature and signed a consent form to confirm that they understood the full details and implications of taking part in the trial.  This trial was supervised by an independent steering committee and data monitoring and ethics committee.  There was no question of compulsion.

CBT, which is often – wrongly – described as psychotherapy, is in fact a form of psychological rehabilitation and there is good research evidence for its effectiveness in other physical illnesses such as heart disease and chronic low back pain.

With regard to the concerns raised about care plans, I hope you will understand that the Department of Health cannot intervene in clinical decisions.  Clinical decisions are a matter for trained professionals who can consider all aspects of a case.  If a person is not happy with the treatment they are receiving then they should raise their concerns with their GP.

They may also wish to raise a formal complaint with the relevant primary care trust (PCT).  Contact details for PCTs can be found at by clicking on the ‘Find and choose services’ tab.

I hope this reply is helpful.

Yours sincerely,
Sophia Berry
Customer Service Centre
Department of Health

Please note that from 1 April 2011 you will no longer be able to contact the Department of Health through the DHMail email address. To contact the Department of Health in future, please visit the contact page on the Department’s website.
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