Invest in ME recently received an invitation from the British Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (BACME) inviting us to apply to become an executive member of that organisation.
BACME is chaired by consultant paediatrician Dr Esther Crawley - who was recently awarded a grant to do a clinical trial on the Lightning process (funded with £164,000 from the Linbury Trust and the Ashden Trust) - a business which assumes that no matter what is causing an ME patient's illness it will help cure a patient from them.
With cases of people with ME being made worse from this business the recent Norwegian film by Paal Winsents ("Make Me Well") illustrates the danger of people with no medical training attempting to treat a neurological illness such as ME. A telling quote from a LP practitioner in that film says it all -
".... It does not matter how it started. Sometimes people had a bacterial infection, sometimes people had a viral infection. It does not matter how it started. The Lightning Process works equally well".
Such uninformed, non-clinical and dangerous statements being used by people promoting businesses without any medical training, at a time when the need for more funding for biomedical research into ME and the evidence to support that funding requirement is overwhelming, is symptomatic of the problems on a non-strategic, non-biomedical approach to diagnosing and treating people with ME. Meanwhile ME patients and their families have to witness this absurd waste of money.
Dr. Crawley's views on ME aren't those of Invest in ME's and we have serious concerns about her position as chair of an organisation such as this.
The Assistant Chair of BACME is Alison Wearden, who is Reader in Psychology at the University of Manchester, Chair Elect of British Psychological Society's Division of Health Psychology and Associate Editor of British Journal of Health Psychology and whose studies include "Illness cognitions and diabetes - how the beliefs which patients hold about their diabetes impact on their attempts to manage it, their adjustment and well-being". Wearden was head of the FINE trial(click here) - a waste of taxpayers' money which resulted in nothing of value for people with ME.
BACME has a constitution to which members have to sign up. In this constitution, which BACME requires its members to support, it includes the following -
2.2.1 To champion evidence-based approaches to the treatment of CFS/ME, such as those provided in the NICE guidelines
2.2.4 To support the delivery of services and to enable services to maintain standards of care in the treatment of CFS/ME as set out in the NICE guidelines
4. The Executive
4.1.4 The BACME Executive will invite no more than four people drawn from National UK CFS/ME organisations which explicitly support the aims and constitution of the organisation to sit on the Executive committee as either observers or members
Invest in ME rejected the NICE Guidelines and therefore cannot agree to endorse a constitution which lists among other things the above objectives.
Invest in ME endorse the critique set out by Twisk FNM, Maes M. in their review of CBT/GET in which they state
"So, it can be concluded that the efficacy claim for CBT/GET is false. But what is more important, is the fact that numerous studies support the thesis that exertion, and thus GET, can physically harm the majority of the ME/CFS patients.
This assertion is confirmed by the outcomes of two large patient surveys in the UK and Norway, and two smaller surveys in Scotland and the Netherlands."
(A review on Cognitive Behavorial Therapy (CBT) and Graded Exercise Therapy (GET) in Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS): CBT/GET is not only ineffective and not evidence based, but also potentially harmful for many patients with ME/CFS. Neuro Endocrinol Lett. 2009 Aug 26;30(3):284-299.)click here
The NICE guidelines need complete revision as their current version is far from evidence-based.
The NICE guidelines have been shown to be ineffectual, biased, unusable, with ME patients eventually taking NICE to a judicial review.
For an organisation to support NICE, and require members to abide by them, let alone "champion" them illustrates a flawed and damaging basis for any claim to represent people with ME and their families.
Such an organisation is likely to continue to force a continuing approach of going round in circles, obfuscating the true requirements for ME patients and achieving little of real value for people with ME and their families.
With BACME maintaining its present structure, current chairman and constitution then Invest in ME will decline any offer to apply for membership of this organisation.
It would be unethical of Invest in ME to sign up to such a constitution and Invest in ME's aim remains to find ways other than those set out in the NICE guidelines to treat patients diagnosed with ME according to the Canadian Clinical Consensus guidelines.
Magical Medicine: How to Make a Disease Disappear - click here
Lightning Process - The Falsehood of Magical Medicine - IiME Newsletter March 2010 - click here
Can the MRC PACE Trial be justified? - click here
Wessely's Way: Rhetoric or reason? - click here
Invest in ME - Communications with the UK Chief Medical Officer - click here