Two letters in the print edition of the Times, 16 September

Two Letters to the Editor (page 27) have been published, today, in the Times print edition and also online here in response to Hilary Patten’s letter published, last week (10 Sept). 

Hilary’s letter can be read here on ME agenda or on The Times site here

Under the heading “Fatigue syndrome funding and therapy” the first response is from Anne Faulkner, Director of The CFS Research Foundation, the other, as anticipated, a response from Barts – from Professor Peter White and Dr Maurice Murphy. 

There is a comment facility on The Times site and the email address for Letters to the Editor is letters@thetimes.co.uk

Hilary Patten’s letter was published again in the “In Gear” section of The Sunday Times, on Sunday 14 Sept, on the general letters page (page 33) under the heading “Chronic fatigue”.

Professor Peter White was a member of the Planning Committee and one of the speakers at the RSM’s London “CFS” conference in April, this year, and is also a speaker at the RSM’s regional “CFS” conference in Bristol, this Thursday.  Click here for a round up of Prof White’s views on ME.

The Times, Letters to the Editor, 16 September 2008

Fatigue syndrome funding and therapy

[ The online version includes a sub heading “More funding is needed for CFS/ME research” ]

Sir, We can assure Hilary Patten (letter, Sept 10) that biomedical research into chronic fatigue syndrome (CFS)/ME is taking place in the UK, funded by the CFS Research Foundation.

This small body is funding research into the genetic basis of the disease. A team at St George’s, University of London, have found that 88 genes in patients with the illness behave abnormally, while they remain normal in healthy people. These genes can be divided into seven subtypes, which interestingly show distinct clinical features.

However, this distressing illness needs well-planned studies and major funding to discover the causes, and then to find therapies and a cure. Some 240,000 people suffer from CFS/ME. Twenty-five per cent of them are housebound or bedbound; 25,000 children are sufferers and it is thought to be the greatest cause of absenteeism in schools.

It is difficult to understand how government departments can ignore the need for biomedical research to enable so many people to return to normal life. The CFS Research Foundation has shown the possibilities of discovering the basis of the disease, but it is up to the Government to take this forward and put an end to so much suffering.

Anne Faulkner
Director, CFS Research Foundation

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Sir, While we have sympathy for Ms Patten’s plight, research shows that a significant minority of people with CFS/ME can recover with treatment, and the majority improve.

The National Institute for Health and Clinical Excellence guidelines, published last year, were based on the largest ever systematic review of the management of the illness, and recommended rehabilitative treatments, such as cognitive behaviour therapy, and graded exercise therapy as safe and effective.

Although CFS/ME can be triggered by some infections, there is no reliable evidence of persistent infection, and the heart and cardiac function are normal, apart from the effects of deconditioning. To the best of our knowledge, no patient has ever died directly as a result of CFS/ME and follow-up studies show no increased risk of dying.

Yes, more research is needed to understand the illness, but both access to currently available treatments and realistic hope for recovery are equally important.

Professor Peter White
Dr Maurice Murphy
St Bartholomew’s Hospital, London

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4 thoughts on “Two letters in the print edition of the Times, 16 September

  1. http://cinderbridge.blogspot.com

    The research showing that cognitive behavior therapy and graded exercise therapy can help CFS/ME patients is flawed. It includes subjects who are suffering from depression-related fatigue rather than ME-related fatigue. The former may benefit from CBT and graded exercise therapy. The latter may be harmed by graded exercise therapy.

    Subjects who drop out of the study (likely because the treatment is making them worse) are not included in the results — clear sampling bias.

  2. Susan, thank you for your comment. Copies of letters to the Editor in response to Prof Peter White’s letter are being collected on ME Free For All.org at http://www.mefreeforall.org/ I’ve also added the email address for letters to the Editor to the posting.

    I’ll be posting details of the NICE Judicial Review hearing, which is expected to be held over two or three days in October, as soon as details are published. If readers haven’t already found it there is a posting at:

    https://meagenda.wordpress.com/2008/06/18/summary-of-application-hearing-nice-cfsme-judicial-review/

    of a summary of the hearing which took place on 17 June prepared by Dr Charles Shepherd on behalf of the ME Association.

  3. my illness is also me caused by stress viruses aslo assaults acidents etc i am ill but my minds active

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