Saturday, August 27, 2011

Another letter to the editor re Wessely

[email protected]

Permission to repost

Dear Sir,

I write in response to your article featuring Professor Simon Wessely.

I also write as a retired diagnostic radiographer with 10 years experience
in the NHS.

I was diagnosed with Post Viral Fatigue Syndrome (also called ME or CFS)
during 1996 - 15 long years ago. My life was profoundly changed and I lost
almost everything.

My illness - in spite of attempts at rehabilitation via an Occupational
Therapist and a Rheumatologist - forced me to retire from my profession at
the end of 1997.

Fast forward to 2004 and a change of GP when I moved home - living with and
dependent on my parents for my care at the age of 39.

My new GP re-examined my case and my symptoms and decided that I needed a
fresh medical assessment from a specialist rheumatologist. My new GP had a
friend who had Behçet's disease and thought that I ought to be considered
for such a diagnosis.

The rheumatologist I saw told me that as I had no clusters of mouth ulcers I
could not possibly have Behçet's disease and so the CFS diagnosis stuck.

I did not give up because I discovered that in fact it is possible to have
hardly any mouth ulcers or indeed none at all and still have Behçet's

During 2008 and after seven further clinical referrals, I eventually found a
specialist knowledgeable enough to recognise that my correct diagnosis was
in fact Behçet's disease - a rare auto-immune system disorder also known as
systemic vasculitis or inflammation of he small blood vessels that affect
everything from the brain to your heart and lungs, your gut and bony joints.

Another feature of Behçet's is profound fatigue and breathlessness.

I then discovered from an inquiry to the Behçet's Syndrome Society that they
had a growing list of members who had also suffered medical misdiagnoses and
that the most popular misdiagnosis was Chronic Fatigue Syndrome or ME.

Behçet's disease can be invisible on examination - no signs to easily allow
a quick diagnosis. I know other Behçet's patients who have been misdiagnosed
longer than myself; one in particular who had to endure losing the sight in

one eye and partial sight in the other due to small Behçet's related blood

Once she had almost totally lost her sight the doctors took her seriously
and set aside her diagnosis of Chronic fatigue Syndrome.

She was then given the correct diagnosis after 10 years of medical

I was bed bound and housebound for 8 years in constant excruciating pain. I
had to remain in a blacked out bedroom for days on end with migraines that
never received treatment due to the cause being attributed to Chronic
Fatigue Syndrome.

I knew people with a diagnosis of ME who were even worse than me who are
still very very ill today. Some of them have even died such was the severity
of their illness. One of my friends in New Zealand named Gurli Bagnall
passed away this month having been very ill for a very long time - also
diagnosed with Myalgic Encephalomyelitis (ME).

Gurli was angry to the end but understandably so. I share her anger.

It is a fact that Professor Simon Wessely is not qualified to either
diagnose or treat Behçet's disease or other complex medical conditions that
have no relevance to the services of functional psychiatry.

I once had the opportunity to ask Professor Wessely via a non-threatening
exchange of e-mail if he had seen any cases of Behçet's disease in any of
his patients and whether or not he was responsible for misdiagnosing such
patients during his career?

Professor Wessely never gave me a response to that question.

Interestingly, in the media, nobody asks Professor Simon Wessely any
difficult questions so he never has to give any difficult answers.

It is also a fact that Professor Wessely and his colleagues have made
careers out of establishing and popularising the diagnosis of Chronic
Fatigue Syndrome over the last 20 to 30 years right across mainstream

They have done such a good job.

These psychiatrists have in fact provided the medical profession with an
easy diagnosis and a cheap diagnosis that pushes patients into a cul-de-sac
where the primary treatments available become Cognitive Behavioural Therapy
and Graded Exercise Therapy. GP practices and specialist hospital
departments have found a diagnosis to help them control their practice and
departmental budgets.

Once a patient with general fatigue, joint pain, headaches and gut
dysfunction receives a diagnosis of CFS or ME, the inertia to reconsider or
change that diagnosis is for the patient - immense.

Once a diagnosis of CFS or ME has been given, there is an instruction from
the National Institute for Health and Clinical Excellence (NICE) to all GP's
and specialists that only limited or "minimal" investigations are required.

The price patients like myself have paid is profound and life changing and

I have known of patients who have passed away from rare heart conditions and
from Cancer because the symptoms of those conditions were erroneously
ascribed to primary functional symptoms of a CFS or ME diagnosis.

Those symptoms - common to so many illnesses were never investigated until
it was too late to do anything to save their lives once the Cancer or heart
disease had done its worst.

Professor Wessely claims to have seen 3,000 patients through his clinic yet
there are supposed to be 250,000 patients diagnosed with CFS - a diagnosis
"owned" and heavily promoted by Professor Wessely and his colleagues in
"functional psychiatry".

Having been a victim I know why patients tarred with Wessely's brush are

Professor Wessely has never met the vast majority of patients who have been
given his easy and cheap diagnosis that functional psychiatry have made
their careers from; ensuring the bulk of the medical research monies go in
their direction from years of lobbying and influencing the Medical Research
Council (MRC) where Professor Wessely used to work for a significant period
of time.

It is my view that for a hard working GP who only has 10 minutes per
patient; it is far easier to look at a group of symptoms that can relate to
many other complex medical conditions - examine the patient and find no
visible signs and then defer to the diagnosis of Chronic Fatigue Syndrome if
those symptoms persist for six months as is the case today thanks to the
NICE guidelines.

This is what happened to me and this is what I know has happened to many
many others who are invisible to society and who mostly suffer in silence -
too ill to be able to use the Internet.

It is the minority who can express their views online who then suffer abuse
via the media.

I know that I have Professor Simon Wessely to thank for those 8 long years
of pain and suffering I experienced without the medication I needed that has
now enabled me to break out of my hell - my confinement - my dependence.

I know what Professor Wessely and his colleagues in functional psychiatry
have done to dumb down the medical profession and even cause unrest in
mainstream psychiatry.

A legacy to be proud of?


Stephen Ralph DCR(D) Retired.

Lincoln, Lincolnshire, UK.

Friday, August 26, 2011

Check out The CFS Blues Lyrics

Free Music Download - CFS Blues

Open letter to Simon Wessely


Open letter sent to Professor Simon Wessely, Institute of Psychiatry,
King's College London
from Dr John H Greensmith, M.E. Community,
with copies for publication and his expected reply to all media in which
the "M.E. death threats story" appeared.

Dear Professor Wessely,

I wonder if you realise the terrible distress you have caused amongst
the M.E. Community with your "M.E. death threats" story, repeated in
several broadcasts and newspapers, each time gathering a little more
inaccuracy and venom?

To be scrupulously fair, you have never mentioned Myalgic
Encephalomyelitis (or its initials M.E.), nor do I believe that any
allegations you make apply to M.E. sufferers because they are too ill to
carry them out, or attend your clinic for treatment which, for them,
would either be ineffective or make a majority worse but you know that
M.E. is often, quite unjustifiably, taken to be synonymous with Chronic
fatigue Syndrome (CFS). M.E. patients have certainly appeared in the
headlines and even a cartoon.

Will you, therefore, make it clear, in the same places you enjoyed the
publicity, that you specifically exclude people with M.E. or, if you do
include them, will you say according to which diagnostic criteria?

In advance of any response you make, may I offer some comfort to people
with this dreadfully disabling illness that we know is a discrete
illness with a physical cause or underlying disease process, for which
psychiatric history or concurrent illness is not a prerequisite and this
organisation will be properly researching it with valid experimental
design; subjects selected according to criteria at least as
discriminatory as the Canadian Consensus Criteria, rather than the
heterogeneous CFS, within which bundle there is not an illness that one
could not include if one desired and appropriate statistical analysis.
All of these will be subject to a consultation preview period - to which
you will be invited - before we go ahead, funded by money gained by
subscription, donations and charitable fund raising initiatives, whose
independence of its donors is assured, conducted by researchers whose
careers do not depend on the outcome.

This will take some time but since you say you know the dreadful
experience of a death threat, you may wish to take the opportunity to
set minds at rest and prevent some unnecessary deaths, by their own
hands, amongst people you may have inadvertently affected.

Yours sincerely
[email protected]
M.E. Community

Monday, August 22, 2011

I've seen patients paralysed, dying Aids victims, starving children

Vitamin D and Cancer/Autoimmune Illness


"A study has linked vitamin D deficiency with an increased risk for cancer and autoimmune diseases, such as rheumatoid arthritis MS, and lupus. Researchers found, through mapping vitamin D receptor binding throughout the human genome, that vitamin D deficiency is a major environmental factor in increasing the risk of developing these disorders."