ME Association oppose NICE decision not to review their guideline on ME/CFS | 11 April 2014

April 11, 2014

Britain's most important clinical guideline on ME/CFS – first published in August 2007 and never properly reviewed since then – has been put on a new ‘static list' by NICE (the National Institute for Health and Clinical Excellence), the organisation confirmed yesterday.

Despite huge concerns raised by The ME Association and other charities, the NICE Guideline on ME/CFS now joins 25 other guidelines that will not be looked at again by NICE for another five years or until major new evidence forces a rethink.

Dr Charles Shepherd, medical adviser to The ME Association, commented: “What NICE has done is wrong and incomprehensible. They've consigned their ME/CFS Guideline to a list not subject to active review at a time of enormous advance in biomedical research. We shall continue to press NICE for a major review whenever we spot an opportunity to do so.”

The guideline recommended Cognitive Behaviour Therapy and Graded Exercise as frontline treatments for ME/CFS, a strategy that the MEA has always said is deeply flawed and, if graded exercise is incorrectly applied, quite possibly harmful to the health of ME/CFS patients. The guideline sets the tone for much of NHS ME/CFS practice throughout the UK.

The ME Association's objections to the guideline being placed on the NICE static list are detailed on pages 61-78 of this NICE report.

Dr Shepherd added: “This is such an important issue for people with ME/CFS. We won't let it go.”

2 thoughts on “ME Association oppose NICE decision not to review their guideline on ME/CFS | 11 April 2014”

  1. neither CBT or GET works and yet they still don’t listen to the people who tell them. After a particularly bad relapse i was more or less told that’s all they could offer me.

  2. I was diagnosed early with cfs/me and within 9 months I attended a local nhs cfs clinic, no doctor there just a Psychologist and a physiotherapist along with a load of other useless information I was told I should start walking 5 minutes a day and extend this every week, I thought great this is my way out of this nightmare. Being a very determined person I stuck to a strict 5 min a day for a week and extended the walk by two minutes a week quiet difficult but I managed it. On week 3 (nine minutes) CRASH my legs ached so badly I could hardly stand.I have never been able to walk for even 5 minutes since and that’s 6 years ago. I am in a worse situation now than before I attended the NHS cfs clinic.

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