"Dear Editor,
I refer to ‘Defeatism undermines the treatment of chronic fatigue syndrome’ (26/2/10, www.imt.ie/clinical/infections-immunology/defeatism-undermines-treatment.html). This article trivialises the severity of the illness and contains a number of factual inaccuracies.
NICE is selectively referenced. It actually points out that CFS/ME is a very serious real illness of yet unknown origin and can be more disabling than multiple sclerosis or late-stage AIDS. There is no known cure or effective treatment.
In the words of NICE: “The Guideline Development Group did not regard CBT or other behavioural therapies as curative or directed at the underlying disease process, which remains unknown. Rather, such interventions can help some patients cope with the condition” (CG53 p252). This should have been quoted.
NICE specifically make the point that CBT is not a treatment for the symptoms but an aid to help patients come to terms with their illness. Is this what is meant by ‘working’? CBT has never shown any objective benefit.
Some studies, using self reporting, have shown a subjective benefit on fatigue, i.e. as assessed by the patient, but no effect at all on activity levels when measured scientifically. The confidence intervals in these studies are so wide as to make extrapolation into a general ME/CFS population impossible.
The studies are clearly underpowered. Many sufferers take their lives because living with the symptoms is unbearable.
There is no robust scientific evidence to support GET although there was a recent heart attack! The known and frequent adverse events associated with the GET/CBT combination, have never been scientifically evaluated.
Why were NICE instructed to ignore all the biomedical evidence when drafting their guidelines? Would any pharmaceutical product obtain a product licence based on patient self-evaluation – or with the confidence interval values associated with CBT studies?
The answer is a resounding no! Why, therefore, are sufferers of ME/CFS classified by the WHO as a neurological disorder only offered CBT?
G J Morris, BSc(Psych) LLB Dip Law"
Doctor Speedy and ME in search of medical honesty
TYMES TRUST ALERT: CARE PATHWAYS FOR CHILDREN WITH ME
ReplyDeleteTYMES TRUST ALERT
31 March 2010
Jane Colby FRSA
Executive Director
The Young ME Sufferers Trust
www.tymestrust.org
CARE PATHWAYS FOR CHILDREN WITH ME
Earlier this year, the Trust was approached by the Welsh Assembly
Government for our views on care pathways for children with ME, as requested by the
Minister for Health and Social Services in the Welsh Assembly. He wished
to know of any existing pathway that we would recommend. I provided the
following response:
"There is no published care pathway that we know of, which we would
recommend. We recommend GP management supporting self-management, under
consultant where needed, but not where the person is managing their =
illness well. GP support for practical measures such as benefits, practical home
aids and home/virtual tuition are vital.
"Clinics supplying psychological therapies for ME have in our experience
generally proved a disaster in England and we would not like to see =
Wales going the same way.
"We carried out a grant-funded exercise in what young people and their
families want from a specialist clinic, where the health authority is
setting one up. Virtually none of their views have been met. The link =
is:
www.tymestrust.org/pdfs/ourneedsourlives.pdf
"In terms of official care pathways: The children's chapter of the Dept
of Health Report of 2002, which we assisted to write in our capacity as a
key member of the Chief Medical Officer's children's panel, comes closest to
what we would recommend, out of everything published so far."
I am now pleased to note that the Westminster All Party Parliamentary
Group on ME has accepted my recommendation that this Report, which preceded
the NICE Guideline, should be resurrected. Whilst the main section had its
flaws, the children's chapter is generally good. As a member of the panel
that produced that chapter, I can say it was a hard fight to get some of
our key recommendations accepted. I am therefore looking forward to using
that report again.
In my response to the Welsh Assembly I also stated:
"NICE has also been a disaster and we would not wish to see the NICE
Guidelines used in Wales. It is bad enough here in England. Children are
routinely being referred for graded activity and in our experience are
routinely relapsing as a result. I refer you to my Witness Statement for =
the Judicial Review of the NICE Guideline at
www.tymestrust.org/pdfs/brief2009-3.pdf
and to our original evaluation of NICE where we listed the best aspects, =
aswell as the problems, on pages 18/19 of Vision 2007-2 available at
www.tymestrust.org/pdfs/vision2007-2.pdf.
[...]
"Possibly the most important helpful aspect of NICE was its reminder
that patients have a right to decline treatment. In practice, they don't
understand until it is too late, that CBT and GET typically makes =
classic ME patients worse. It appears to us from our personal and professional
experience that only those who are substantially recovered, or who did
not have classic ME to start with, but some other fatiguing illness coming
within the wide CFS net, are helped by these therapies. Where GET
therapists allow patients to stop an activity that is making them feel bad, and
respond to their symptoms, this is not in fact GET, but pacing. Patients find
that pacing themselves is the most helpful form of management. This is
confirmed by many expert physicians, though not those of the GET school of
thought.
"Domiciliary support and support for home tuition/virtual education, in
which we have experience, is vital for children with classic ME. School
attendance is typically one of the biggest causes of relapse. The other,
in our experience, being general over-activity including GET."
The complete response will be made available publicly at a future date.
More news soon.
Jane Colby
from Invest in ME Newsletter March/April 2010
ReplyDelete"Lightning Process - The Falsehood of Magical Medicine
When ME biomedical research and researchers have been starved of funding by the UK Medical Research Council it is particularly galling to hear that the charity AYME's medical advisor, Esther Crawley, is to receive £160,000 from the Linbury Trust and the Ashden Trust to look at the psycho-therapy which is the Lightning process [http://www.bristol.ac.uk/ccah/news/2...esthercrawley].
Not only is this a waste of scarce resources but children aged 8-18 are to be used to perform this study. There are many stories of the damage this series of courses can do to patients - a business enterprise which is unregulated, has no valid research into the "theory" behind it which really warrants funding of it (certainly not in preference to the funding of biomedical research into ME) and for which anyone can seemingly attend a few courses and set up a business, with no medical training.
This reminds us of a similar psychological approach to ME which that same charity discussed in a conference in 2005 - Reverse Therapy (RT) - with their then medical advisor, child psychiatrist Dr Derek Proudlove, who reported on his successful pilot study on RT. Five years on and children with ME are still ill but now we have another expensive training programme attracting the attention of another medical advisor.
We thought to check the definition of a pyramid business - "A successful pyramid scheme combines a fake yet seemingly credible business with a simple-to-understand yet sophisticated-sounding money-making formula which is used for profit".
Those who subscribe to organisations who market, advocate or advertise businesses under the guise of treatments for vulnerable and chronically ill people might reflect on the policy of the charity they are supporting.
If this training programme really needs research then why not start with adults who can give informed consent - and why not test it on a well known patient group with clear biomarkers such as diabetics or MS patients to see if these patients stop "doing" diabetes or MS after three days of training. Why are ME patients always the target for therapy businesses? If there is funding available for research into ME then why not direct it to biomedical research?"