New CSF Guidelines for UK Doctors

NICE (National Institute for Health and Clinical Excellence) has issued a press release yesterday for the new CFS guidelines for UK doctors.

Although the guidelines remain controversial with widespread criticism from “patient groups” in the UK it seems the press coverage has focused on the more favourable aspects of the guidelines.

The Health Service has issued the first guidance on how to treat ME sufferers after being urged to bring the condition ‘out of the wilderness’.It aims to redress years of prejudice against those with chronic fatigue syndrome – the term by which ME is now often known – who were told the condition was ‘all in the mind’.

The NHS guidelines instruct doctors not to tell patients to ‘go to the gym’ as this could make them worse.

Although those suffering from the condition can benefit from gentle exercise, they should not be coerced into it.

Family doctors are also advised to refer children with symptoms of the disorder to a paediatrician within six weeks.

The guidelines state that a diagnosis should be made within three months in children and four months in adults. 

 from The Daily Mail 23 Aug 2007

Andrew Dillon, the chief executive at Nice who was in charge of the guidelines, said: “The condition can cause debilitating symptoms, impacting significantly on the lives of those with ME, and their families and carers.

“Until now there have been uncertainties about the diagnosis and management of this condition.

“This new guideline will help health professionals make an accurate diagnosis, while considering other conditions that may be present.”

Prof Richard Baker from the University of Leicester, who chaired the guideline development group, said: “Care for people with ME has varied widely, with some people feeling that their illness isn’t recognised by the healthcare system.

“The publication of this ME guideline is an important opportunity to change the current situation for the better, helping healthcare professionals and individuals by providing clear advice on how best to manage this disabling condition.”

Action for ME, a charity for victims, said the guidelines could be a “landmark in the mainstreaming of ME as a legitimate illness”, provided that the medical establishment pays attention to them.

from The Telegraph 23 Aug 2007

Sufferers and patient groups welcome the patient centred focus of the guidelines but there are still flaws in the guidelines (which had to be delayed from publication as the original draft faced fierce criticism from the patient lobby and many CFS/ME experts).

AFME (Action for M.E.) welcome the new drive to improve services for sufferers and recognise the importance of building a strong working relationship with the NHS. However, they also recognise some of the failings of the new guidelines and crucial aspects needed for this iniative to be successful (I’ve edited a few paragraphs out to keep it succinct for you):

Guideline flaws
The Guidelines are still influenced by the history of research in this area, which has produced findings that can not be generalised to all people with M.E. and which therefore once again place an over-emphasis on CBT and GET. …

Two-year review
These guidelines have a two year lifespan before they are reviewed, unless there are significant developments beforehand. Action for M.E. hopes that the research on the patient-centred and patient-developed model of management – pacing – will be available then and this research would provide a counterbalance to the over-reliance on CBT and GET.

Greater investment
The potential for the NICE guidelines to improve practice can only be fully realised if services for people with M.E. are fully funded and we will campaign energetically for a greater level of investment, particularly in those areas that pioneer new models of service delivery that address the position of children and the most severely affected.

We have campaigned and will be campaigning strenuously in future for massively greater investment in bio-medical research into the aetiology and pathogenesis of M.E. as a way of finding more effective treatments. It is only through greater research that significant improvements in the outlook for people with M.E. can be made.

from AFME news 22 Aug 2007

The ME Association is yet to issue their response to the new guidelines publication. 

They were highly critical of the first draft not least for “its emphasis on CBT and graded exercise as therapies of first choice” (which I would agree with).  As these elements remain in the finalised guidelines it will be interesting to hear their reaction.

It seems the new guidelines are a mixed blessing, both for sufferers and for GP’s.


1 Response to “New CSF Guidelines for UK Doctors”

  1. 1 Connie August 28, 2007 at 2:54 am

    Oh yes dear I get it. I totally get it. I’ve had those horrible episodes where I feel like I’m getting Alzheimers – no demeaning to that disease. I go into the shower and wash my hair, but did I? I forget a word that I need to say all day. It’s gone and to try to find is like looking into the “black hole” you describe. I joke about it but it’s scary. I can’t tell from day to day what I’ll remember or not.

    You’re not alone. (((HUGS)))

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