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 -
"....
.
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 trials (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 Objectives
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
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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
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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.
