Sunday, September 4, 2011

Jane Clout "On Wessely's summer spin."

Jane Clout "On Wessely's summer spin."
This is from a couple of posts I've made on Reddit.

Prof Wessely has been orchestrating a misinformation campaign around ME for
over a decade, through his control of the scientific explanations given to
the British media via his post at the Science Media Centre, his pivotal
position in the treatment available on the NHS to ME sufferers which
incidentally many blame for severe worsening of their illness, and his links with
the Medical Research Council who distribute public research funding.

Prof. Wessely and his collegues have obtained more than £8 million of
taxpayers money over the past seven years for their research into our "false
illness beliefs" (I quote him here) while biomedical research has gained
exactly nothing from that same source.

Oh, and his colleague Peter White is advisor to the DWP on ME, helping to
control the benefits payable (or not) to some very sick people.

The scientists who work to find the truth about ME are often showered with
praise, groupcards of thankyous, donations etc.

What we are doing is fighting for real effective science, hoping that that
might lead to real, effective treatment. At present there is exciting work
being done at the Whittemore Peterson Institute in Reno Nevada - we online
ME'ers have won $65,000 from online competitions this summer to help fund
their work. We may have won a further $100,000! Tuesday is the prizegiving...

There is no evidence of any death threat. The worst that has been stated
was that one woman was found to be carrying a knife at a lecture he gave.
What kind of knife? We don't know. A pound gets you ten if it wasn't a small
legal penknife, carried to cut up apples or open blister packs.

The worst email to Wessely that has been mentioned, in all these vile and
incorrect press articles, said, at its strongest, "You Will Pay". David
Cameron said exactly the same thing to the rioters on a recent TV interview. Is
this a death threat?

So how bad are we? And how bad is Prof Wessely? For the answer to the
second question, check this out: (add the
www. if your browser needs it).

Ain't it the truth? Oh it's true alright. Stranger than fiction.

We're not retarded. Or lazy. Many of us had responsible careers before
illness struck. We are as many as 250,000 British citizens who get no
effective treatment for a severe physical illness. For more on that, read the
Myalgic Encephalomyelitis - International Consensus Criteria 2011 by Curruthers
et al. where you will find a concise explanation of the biomedical
processes behind the disease, fully referenced, with links.

Who are we? We are people with Myalgic Encephalomyelitis, an illness that
has been called atypical MS, that can be more debilitating than undergoing
chemotherapy or late-stage AIDS. We have found each other online.

Why are we doing this? We're not, if you mean making illegal physical
threats to ME/CFS researchers. There has not been one scrap of evidence to back
up the claims of harassment made in the article under discussion, or in the
previous, similar articles.

Where are we getting our information from? Online. PlosOne, Science and
other established sources, and many many ME forums and blogs. We are often
house or bedbound, and for me a laptop that I can use lying down means I have
access to the world on the web. Sure don't have it any other way. Too sick.

Simon Wessely and his colleagues are being shown up for the charlatans they
are. This press spin campaign has been created on the "attack is the best
form of defence" basis. The Wessely school has had a stranglehold on the
information about and treatment for what they call CFS or Chronic Fatigue in
the UK since the late 80s. They have always tried to deny the very
existence of ME.

Here's a quote from Wessely at the 9th Elliot Slater Memorial Lecture in
1994: "I will argue that ME is simply a belief, the belief that one has an
illness called ME"

And here's a quote from Peter White, about his recent PACE study and who he
was studying (Wessely is a co-author) from his defence of the study in the
Lancet recently (it was roundly debunked by both other scientists and
sufferers like me) "The PACE trial paper refers to chronic fatigue syndrome
(CFS) which is operationally defined; it does not purport to be studying

Yet the PACE trial results were spun and hyped to the rooftops in the
British press with headlines like "Exercise Is Best Cure For ME"

Wessely and co are experts of spin. Wessely is the spokesperson for all
things CFS/ME at the Science Media Centre. He has been in a strong position
for many years. This recent vilification of ME sufferers and advocates should
be taken with a very large grain of salt.

Permission to steal bits, stir it around, repost in any way that's useful -
if it is.

1 comment:

jace said...

Could you sort out the inappropriate line breaks? Facebook formatting :p