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page last updated:
28 March, 2008
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page last updated:
28 March, 2008
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Details of the Group | News - updated 17 March 2008 | Features
Downing Street ME Online PetitionThe Prime Minister's Office has responded to the online petition asking him to "get the Health Service and medical profession to accept the WHO classification of ME/CFS as an organic neurological disorder and not as a psychosocial syndrome". The response is at http://www.pm.gov.uk/output/Page14656.asp Petition information - http://petitions.pm.gov.uk/ME-is-real/
NICE Guidelines on the treatment of CFS and MEFollowing the publication of the "CMO Report" into CFS/ME in January 2002, the Department of Health asked the National Institute for Health and Clinical Excellence (NICE) to produce guidelines for the diagnosis and management of Chronic Fatigue Syndrome (CFS/ME) in the NHS. Draft guidelines were issued in September 2006 for consultation, and were roundly criticised by most if not all of the organisations who speak for people with ME/CFS - in particular because of the emphasis given to Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET), and for the poor information regarding the management of setbacks. The publication of the guidelines proper was delayed owing to the large amount of feedback received, and eventually appeared in August 2007. While the final version of the guidelines did show some improvement on the draft, it still falls far short of the standard required by many people with ME/CFS. The guidelines and several supporting documents are available here. The responses of stakeholders (various CFS/ME clinics, many of the ME/CFS organisations, individuals etc.) to the original draft document are available at the NICE website for viewing. In total they form a large quantity of text and take some reading, but there are some very interesting thoughts and even some helpful ideas on managing ME/CFS contained within them. The reponses can be read here. Update - 20th November 2007 Since the release of the guidelines, there has been much discussion over their suitability. Some people and organisations believe they are a way forward, others feel that although they do now offer good guidance in some areas, the emphasis on CBT and GET may be far from helpful for some people. A good deal of this disquiet centres on the view that the ME/CFS spectrum catches a wide range of conditions from a fatigue-prominent psychiatric state at one end of the scale to a physical neurological disease (ME) at the other. The guidelines state that CBT and GET are the only two effective treatments for which good research evidence exists, but the validity of this research in respect of its application to all people with a diagnosis of ME/CFS is being questioned, as is the point that a lot of published research was not even considered in the drawing up of the guidelines, even though this research was brought to the attention of the Guideline Development Group during the consultation period (they said a review of biomedical research was not in their remit). The methods of CBT and GET described (in some detail) in the guidelines are those associated with treatment of mental health problems (e.g. the guidelines refer to abnormal or maladaptive illness beliefs), and there is a feeling amongst many patients and some of the organisations that work to support them that these models of CBT and GET are not particularly useful (and can even be harmful) to some people with a diagnosis of ME/CFS. Other people/organisations report that they know of patients who have attended the new CFS/ME clinics and have found these methods helpful. The counter argument offered to this is that not all clinics are offering CBT/GET in the form that is suggested in the guidelines, but are offering more general lifestyle management suggestions which incorporate elements of CBT/GET rather than the prescriptive methods in the guidelines. The concern with all this is that now the guidelines are published, the existing clinics may move away from the general empirical approach and adopt the prescriptive guidelines approach. Similarly, as new clinics become available, they will be based on what the guidelines recommend rather than what existing clinics are offering now. The guidelines do say that CBT/GET may not help everyone and that some people report thay have been made worse by GET in particular, but there is little emphasis on this in comparison with the amount of detail on how CBT and GET should be applied. And for the people for whom they do not work, very little is offered and so those patients are no further forward than they were before the guidelines were issued - indeed not really any further forward than they were twenty years or more ago. It is a long and complex debate and opinions on how to move forward are varied. Some want to see the guidelines accepted and for the clinics to be the place where therapists and doctors learn what works and what doesn't - revising the guidelines can come later if necessary. Some want to see the section on CBT/GET in particular ammended and are making moves through Parliament and publicity in the media to this end. Yet others want to see the whole guideline withdrawn and rewritten, and have set course for a Judicial Review to this end. (And, away from the guidelines debate, there is also at least one advocacy group calling for the new CFS clinics to be closed and re-opened away from the influence of psychiatrists.) News of the intended Judicial Review appeared in the press on Saturday, 17th November 2007. Although The ME Association are not supporting the Judicial Review, their Medical Adviser, Dr Charles Shepherd, was invited to speak on BBC's News24 regarding The MEA's views on the guidelines. The five-minute interview is available on YouTube.com and can be viewed here. Various statements are available on the web:
The Gibson Report on Myalgic EncephalomyelitisThe Gibson report on M.E. was published on Sunday 26th November 2006. So far, it has found general support from people with ME/CFS and the organisations who represent them, as it recognises and strongly encourages the need for biomedical research into the causes and mechanisms of M.E. The report is also critical of the recent NICE draft guidelines for the treatment of people with ME/CFS and makes particular mention of the 'Canadian Guidelines', widely supported by people with ME who do not support the psychosocial theories favoured by doctors who advise UK Government departments. Dr Gibson is an MP who has taken a real interest in ME/CFS, in particular the physical versus psychological debate. He formed a working group who read and listened to presentations from a wide range of people with an interest in ME/CFS - patients, patient organisations, and UK and international doctors and researchers.
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Raise funds while you shop or search online easyfundraising.org.uk All you have to do is use the retailer links provided on the www.easyfundraising.org.uk site whenever you shop online, and at no extra cost to you, any good cause you choose to nominate will benefit from all your online purchases. There is no cost for using the service. The 25% ME Group are signed up to the scheme so it is easy for you to donate to their funds when you shop. You will need to ‘Register as a user’, which is the 1st red button on the easyfundraising site and follow the instructions to register. It is very quick and easy to do. Please ensure you read and understand the privacy policy and the terms and conditions. everyclick.co.uk More information here www.everyclick.co.uk.
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Reverse Therapy (website links revised 17th March 2008) There's been a lot of interest in Reverse Therapy in recent months. A GP in Scotland who introduced the method for people with ME/CFS has claimed to have promising results and is setting up a network of clinics around the UK. Initially, he worked in partnership with a psychotherapist but during the summer of 2004, they parted company and now run their own independent schemes. Dr Mickel, the GP, says he regards ME/CFS as a physical illness, and does not consider treatments such as cognitive behavioural therapy or graded exercise to be particularly useful (although, of course, others disagree with him). His method he regards as particularly successful and claims it leaves many people with fibromylagia and/or ME/CFS symptom free after just a few sessions. Dr Mickel believes that ME/CFS becomes chronic because the hypothalamus (an important part of the brain, which controls many bodily functions) goes into overdrive as a result of something which has happened in the past, quite probably before the person ever knew they had ME/CFS. He talks of a person having two minds - one which we think of as the mind with which we sense consciousness, centred in the brain, and another which he believes is run by the body itself without us being aware of it. It is this 'body-mind' which he says holds the key - some event has caused it to send a signal to the hypothalamus to put the body in a state of tension and for some reason, the body is still sending this signal. He says that by discussing various past-events with a therapist, the patient and therapist can try to determine what the trigger was and then work together to tell the body-mind that the problem has passed. Essentially, between sessions, the patient takes time out to sit quietly at times when symptoms flare up to conciously think of the triggering event and to tell themselves (and thus the body-mind) that the problem has passed. Several people have left testimonials on the two websites to vouch for the success of the treatment. However, as yet, there have been no randomised controlled trials (although both Dr Mickel and Dr Eadon have said they are trying to secure funding for their own trials). There is naturally debate between people with ME/CFS on whether this course of treatment is worth following, and whether it is or isn't a form of psychotherapy and thus of perhaps of partial interest to just a particular sub-set of people with a diagnosis of ME/CFS or fibromyalgia. There have been suggestions that only people who are likely to respond to treatment are accepted onto the programme, but this is unconfirmed. According to Dr Mickel's website, around 80% of patients show significant progress (see the News page) at his website, below. For anyone interested in learning more, links to the two websites are given below. Both Dr Mickel's and Dr Eadon's networks have clinics in Cardiff, and there are also clinics in Somerset. The treatment is not available on the NHS and if followed to conclusion, may cost several hundred pounds.
As more people have tried these therapies, a few accounts of experiences have started to appear on the Web. Some examples are
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2001 Odyssey for M.E.
Over £14,000 were raised. More about the Odyssey and the Ride Log here (there are plenty of pictures!).
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For more on ME/CFS visit: Other ME local groups: Gloucester City: www.gloucestercitymegroup.org.uk Herefordshire: http://myweb.tiscali.co.uk/herefordmegroup/ Mid- and West Wales: www.midwalesmegroup.org.uk Shropshire: www.shropshiremesupport.org.uk Worcestershire: www.geocities.com/worcsmegroup/ The ME & CFS Self Help Group (Hull & East Yorkshire): www.hull-me.co.uk Sites which specialise in young people with M.E.: Association of Young People with M.E. youngactiononline.com, an Internet-based organisation for young people with M.E. In 2000, youngactiononline.com joined forces with the Tymes Trust, an organisation also aimed at people below the age of 26 and their parents/carers. You can register for the Tymes Trust at the youngactiononline.com website. E-mail lists for people involved in running ME support groups
Further M.E. interest:
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