From the literature: ten reasons not to implement the NICE Guideline on “CFS/ME”

As a follow up to the 27 October article from Margaret Williams ( see: Prejudice-based Medicine? Reasons for Judicial Review of the NICE Guideline on “CFS/ME” )

Greg Crowhurst publishes
From the literature: ten reasons not to implement the NICE Guideline on “CFS/ME”

by  Greg Crowhurst

28 October 2008

Permission to repost

“Virtually all the UK ME/CFS charities condemned the Guideline as unfit for purpose: such was the outrage and disgust throughout the ME/CFS community at the way that NICE had deliberately ignored so much evidence about ME/CFS.”   
Margaret Williams Prejudice-based Medicine? Reasons for Judicial Review of the NICE Guideline on “CFS/ME

1.  “Unfortunately this remains a document which not only fails to grasp the full nature of neurological ME and the implications for management, but also fails to provide adequate guidance for diagnosis. It also recommends widespread use of the psychosocial rehabilitative treatments of CBT (Cognitive Behavioural Therapy) and GET (Graded Exercise Therapy) in spite of reports of harm from ME patients. At best this means that the main thrust of the guidelines are irrelevant for most people with ME, at worst dangerous.”   
NICE guideline on diagnosis & management of CFS/ME in adults and children – WAMES statement September 2007

2.  “I do not support the NICE CFS/ME guidelines. I feel they are detrimental to patients and that they fail to consider the relevant evidence about the illness.”   
Dr Ian Gibson MP

3.  “The trustees are disappointed to note that the guidance still places undue emphasis on two treatments – cognitive behavioral therapy (CBT) and graded exercise therapy (GET) – for which the underlying evidence is inadequate and unrepresentative. Many patients have reported little or no benefit from CBT and others have experienced seriously adverse effects from GET. They are also disappointed that the GDG could not agree to recognise the World Health Organisation’s classification of M.E. as a neurological illness. In addition, the summary guideline does not convey or reflect the impact which the illness can have on the lives of those people who are most severely affected by M.E.”
Action for ME, Statement from Trustees

4.  “The reasons why the NICE Draft Guidelines were almost universally condemned was due to the poor quality of analysis and their lacking in ability to serve the needs and hopes of people with ME and their families. Without drastic change to the draft guidelines the NICE guidelines would have been irrelevant and, to quote Des Turner (Chair of the parliamentary APPG for ME), “unfit for purpose”. Reaction to the NICE guidelines can still be summed up as continued dismay that NICE have chosen to highlight, yet again, Cognitive Behavioural Therapy (CBT) and Graded Exercise (GET) as the most effective forms of management (aka treatment) for ME. The emphasis still seems to be on these dangerous and unhelpful psychiatric paradigms – paradigms referred to and recommended as therapies and as treatments for ME despite ME patients and groups stating they are ineffective or  harmful.”   
Invest in ME Response to the NICE Guidelines on Clinical Practice 

5.  “I do believe that many problems stemmed from the scope of the guidelines and York Review. Given that the aetiology and pathogenesis of the condition were not part of the scope these could not be searched for, and subsequently meant that thousands of papers could not be discussed as part of the process. Just one example of this is GET; the question posed by the York team looked for papers on ‘GET and ME/CFS’, it did not however search for papers on ‘Exercise and ME/CFS’, and this meant that the many papers showing the potential harm of exercise on the bodies of people with ME/CFS, and that people with ME/CFS react adversely to exercise were not picked up, and no matter how many times I brought them up in the meetings, I was told that the scope of the guideline meant that they could not be discussed, creating a slanted view on exercise and ME/CFS, with only the papers on GET being able to be discussed.”  
Tanya Harrison , Patient Rep on the NICE Guideline Development Group (BRAME)

6. “The Northern Ireland ME Association is disappointed that these new guidelines bring us no nearer a cure for this common and debilitating illness, and that so few management options are being offered to NHS patients.” 

7.  “There can be no doubt that NICE ignored the international evidence that ME/CFS is a biomedical, not psychiatric, disorder, claiming that studying this evidence fell outwith its remit. Such a claim is mystifying, since knowledge of the existing evidence-base ought surely to be mandatory before producing a national Guideline on the management of any disorder, especially given that adherence to such a Guideline is obligatory throughout the NHS (and hence for affiliated agencies such as the Department for Work and Pensions and Social Services). Not only has the “evidence-base” upon which NICE relied for its recommended management interventions for ME/CFS been exposed as deeply flawed by virtue of the heterogeneous populations studied; the methodological inadequacy; the corrupted data; the high drop-out rates; the undeniable ineffectiveness of CBT/GET as shown by the outcomes measures, and the finding that the claimed benefits may have been illusory (see: “Inadequacy of the York (2005) Systematic Review of the CFS/ME Medical Evidence Base” by Malcolm Hooper & Horace Reid at ) but, just as importantly, the proscribing by NICE of appropriate testing and its stipulation that any vitamin or mineral deficiency must not be corrected by prescription would seem to constitute a real and even life-threatening danger to people with ME/CFS”   
More potential dangers of the UK NICE Guideline on “CFS/ME” for people with ME/CFS -Margaret Williams

8.  “These recommendations are going to be of no value whatsoever to many people with ME/CFS. They are also going to be impossible to implement due to a lack of both funding and human resources.”  
Dr Charles Shepherd responds to the NICE guidelines

9.  “The NICE guidelines as a whole more accurately describe patients suffering from idiopathic fatigue, as outlined by the WHO at ICD-10-f48: this endangers the lives of extremely ill and severely disabled people whose disease demands a biomedical approach. Using vague and minimal criteria to diagnose patients with this illness trivialises the serious nature of ME and focuses attention on fatigue – a symptom that many people with severe ME may not even notice in the vast range of troublesome and disabling symptoms they experience. Whilst these NICE guidelines are in use, patients with ME will continue to be misidentified, misrepresented and completely side-lined, particularly if their neurological symptoms are severe. Any service recommended then, with a biopsychosocial emphasis, is likely to be dangerous and inappropriate in helping them to deal with their illness. These guidelines, in not following the WHO classification that this is a neurological disease, are shockingly inadequate. They create a wholly inaccurate picture of this serious disabling neurological and multi-system dysfunction disease and will surely lead to poor and incorrect treatment, continuing isolation and a potential worsening of disability: even people who are mild and moderately affected, after using CBT and GET, may find themselves joining those of us, who are severely affected.”  

10.  “NICE were presented with a unique opportunity to provide practical guidance that would help to ensure that people with ME/CFS were offered management advice covering all aspects of the illness that would be acceptable and beneficial. They have failed the task that was set. People with ME/CFS in England, Wales, Scotland and Northern Ireland urgently require a network of physician led multidisciplinary services based on a biomedical model of causation. Where such services already exist they are much appreciated by patients – as was demonstrated at the July 2007 meeting of the ME All Party Parliamentary Group at Westminster. They do not want a network of services that offer little more than CBT and GET.”  


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