Below is my letter to the editor of the Times regarding the article by =
Stephanie Marsh.
BW
Joan Crawford
Dear Editor,
You do the reputation of your paper few favours by printing such one =
sided=20
journalism as was done by Stephanie Marsh in Saturday's edition of the =
Times=20
(6th August).
The article contained numerous assertions which were supposed to make us =
feel sorry for the poor Professor and serve to make people with ME =
appear=20
unreasonable at best. Such drivel only feeds into the dismissive =
attitudes=20
of healthcare professionals and hostility, disbelief and ridicule that =
pwME=20
(people with ME) have to face daily.
Where is your journalistic integrity? When are you to balance what =
appears=20
to be only Prof Wessely's view with that of those who have published=20
extensively that he is and, always has been, misguided about ME.
Prof Wessely confuses "chronic fatigue" with the neurological disorder =
ME.=20
He does not appear able to tell the difference. Chronic fatigue is a=20
symptom of more than 10,000 medical disorders. The trial that he claims =
evidence for success in 1/3rd of patients is misleading as it was =
conducted=20
on patients whose only entry criteria was "fatigue". Fatigue is not the =
main symptom of ME. It is overwhelming post exertional neuro-immune =
malaise=20
and exhaustion that leaves patients unable to function or care for=20
themselves. This is not being tired or being fatigued. In its more =
severe=20
forms it leaves patients unable to wash, feed and bath themselves. No=20
CBT/GET trials have ever been conducted on such severely affected =
patients=20
as it would be inhumane to do so. One wonders what other medical =
condition=20
claims success for a treatment when it would be ridiculous to use it on=20
those who are sickest? Evidence for exacerbations of symptoms, severity =
and=20
neuro immune and inflammation abounds in the medical literature that =
Prof=20
Wessely chooses to ignore and refuses to engage with due to his =
pathological=20
belief that if only we'd stop thinking we were ill and rose out of our =
beds=20
to be more active we would get better. We have tried it. It makes us=20
sicker, sometimes permanently so.
Prof Wessely fails to bring to your journalist's attention a Spanish =
trial=20
(Nunez et al., 2011) that shows CBT and GET for ME results in patients =
being=20
made sicker. The Belgians completed a national audit of their CFS =
clinics=20
and found patients were less likely to be working and sicker after =
CBT/GET=20
interventions. The FINE trial (a sister trial to the PACE trial) =
"improves=20
fatigue in the short term compared with unconstrained GP treatment as =
usual,=20
but the effect is small and not statistically significant at one year =
follow=20
up." So, it is not scientifically correct or helpful to state people =
with=20
ME get better with CBT/GET. This is weak science being spun. One has =
to=20
wonder why your journalist didn't know this or take the time to take a=20
critical look at what she was being told.
To promote Prof Wessely's view is to laugh in the face of 250,000 sick=20
people in the UK who have no access to the latest medical tests, who are =
denied any form of medical care by the NHS - only advice on how to pace=20
oneself, and who are often treated with disrespect, hostility and =
ignorance=20
by NHS and Atos staff who are generally wholly ignorant of the =
devastating=20
effect this disease can have.
Why did your journalist not speak to Dr Judy Mikovitis at the Whittemore =
Peterson Institute? Why not Dr Nigel Speight? A paediatrician with a=20
career behind him defending children with this disease from authorities =
who=20
think children can be exercised better. Professor Malcolm Hooper has=20
written extensively about the abuses of Professor Wessely and his like=20
minded colleagues. What about Prof Ian Lipkin who is currently leading =
an=20
investigation into whether retroviruses are prevalent in pwME. Your=20
journalist would have discovered that this science continues and it not =
over=20
as Prof Wessely asserts. How about seeing what Prof Nancy Klimas in =
Miami=20
has to say? She has been publishing papers regarding dysfunction in =
pwME's=20
immune systems for more than two decades. Maybe your journalist could =
ask=20
Prof Wessely why no NHS doctors or "CFS" services in the UK even bother =
to=20
tests patients for these well know abnormalities. Or how about seeking =
our=20
other leading ME researchers such as Prof Komaroff at Harvard? Or =
Professor=20
Montoya at Stanford University. Why no interest in what these =
scientists=20
have to say?
Until ME is separate from Prof Weseely's vague "fatigue" and until =
medical=20
doctors make an effort and read the evidence for the biomedical basis =
for=20
ME, patients will continue to be neglected and seen as nothing more than =
a=20
medical joke. Your article, written by a journalist who exhibits no=20
critical, scientific competences, yet again showed that you are happy =
for=20
this status quo to continue and for pwME to be viewed as uncooperative =
and=20
scientifically hostile or naive. Nothing could be further from the =
truth.
Yours faithfully
Joan Crawford
Chair - Chester MESH
---------------------------------------------
Send posts to CO-CURE@listserv.nodak.edu
Unsubscribe at http://www.co-cure.org/unsub.htm
---------------------------------------------
Co-Cure's purpose is to provide information from across the spectrum of
opinion concerning medical, research and political aspects of ME/CFS and/or
FMS. We take no position on the validity of any specific scientific or
political opinion expressed in Co-Cure posts, and we urge readers to
research the various opinions available before assuming any one
interpretation is definitive. The Co-Cure website <www.co-cure.org> has a
link to our complete archive of posts as well as articles of central
importance to the issues of our community.
---------------------------------------------
