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Archive for July 2013

Advice from the edge of life

Written by carolecarrick

July 26, 2013 at 7:50 am

Posted in Uncategorized

Medical Misdiagnosis.

Thanks to Stephen Ralph.


Permission to Repost

Hello there,

Some months ago I embarked on trying to find out about issues of clinical
misdiagnosis surrounding Chronic Fatigue Syndrome in the NHS since the late
1980’s when Dr Simon Wessely took on CFS and rigorously promoted CFS and
then CFS/ME in the NHS and in the media.

Here are my present findings….

There is no doubt that patients with rare diseases with a remarkably similar
symptom set as that suffered by people with ME have been wrongly diagnosed
as having CFS or CFS/ME since 1988.

The majority of those being wrongly diagnosed are being misdiagnosed by GP’s
and general specialists.

Patients are in some instances living for decades with a clinical
misdiagnosis because their case was never escalated upwards to
super-specialists at regional research centres.

Putting it bluntly – nobody knows just how many patients currently labelled
as having CFS or ME or CFS/ME or even Fibromyalgia have been and are now
living with a clinical misdiagnosis.

I have been collecting statements from patients on a Behçet’s forum and
those who have contributed so far are all angered that they had to go
through what they went through before they finally got a re-diagnosis….

All had been touched by the misdiagnosis of CFS or “Chronic Fatigue” or ME.

It is a simple and unchallengeable fact that GP’s and general specialists
are not experts in identifying rare auto-immune diseases such as Behçet’s
disease or Ehlers Danlos Syndrome or Familial Mediterranean Fever amongst
other complex and relatively rare conditions.

However, all of these conditions are amenable in some way to specialist and
super-specialist level treatment that is denied to anyone who has been
misdiagnosed with “CFS/ME” or Fibromyalgia.

Below I have reproduced the statements I have received so far.

I have removed the contributors names but should anyone wish to investigate
individual cases further I can supply contact details or liaise with the
contributor privately.

I am still collecting statements so this is very much the start of something
that will grow.

My recent cease and desist e.mail

As some of you here will remember, I recently sent out a “cease and desist”
e.mail to all the relevant liaison psychiatrists – lead by Professor Sir
Simon Wessely and including Professor Peter White, Professor Michael Sharpe
and Professor Trudy Chalder along with Dr Esther Crawley and Dr Vincent

They may have scoffed at that e.mail and had a laugh about my intent or they
may all have just ignored it and carried on regardless.

I would be grateful for anyone reading this to contact me either via
MEActionUK or privately should they see any further claims in any future
research studies from UK liaison psychiatry making claims that the list of
symptoms they perpetually set out are perpetually “medically unexplained.”

As I pointed out to them all, the symptoms they quote in study after study
are fully medically explainable when related to Behçet’s disease and other
rare diseases.

As I pointed out to them all, Behçet’s disease and other rare diseases can
and do present themselves with few or even no obvious visible signs that a
GP or a general specialist could observe at an out-patient clinic.

This is precisely how a patient becomes a victim of clinical misdiagnosis.

Should anyone reading this spot any future claims that the many symptoms of
ME or indeed CFS or indeed Fibromyalgia are “medically unexplained physical
symptoms” I would like to see such references be they future research papers
or media articles.

I have support on this list and back channel within and without the ME
community to lodge formal complaints to the relevant professional bodies
about any doctor who makes any further claims with full knowledge that the
“invisible” symptom set relating to Myalgic Encephalomyelitis or “CFS/ME”
can be medically explained when applied to the almost identical “invisible”
symptom set shared by rare auto-immune inflammatory diseases.

We can all take a stand on this issue and I have no doubt that we can stop
these doctors seriously misleading , misrepresenting and misinforming the
medical profession as a whole as well as the public at large.

For over 25 years the use of the diagnosis of CFS and “CFS/ME” has acted
like a massive dragnet scooping up all manner of patients into a truly
heterogeneous patient group.

As with any indiscriminate dragnet, patients who were never originally
intended to caught up have been caught up because nothing was put in place
to facilitate an accurate differential diagnostic process.

Any doctor with a medical degree and 12 months clinical practice has been
able to diagnose a case of “CFS/ME” yet the majority of those diagnosing
doctors are not sufficiently qualified or experienced to spot cases of rare

Because of the diagnosis of “CFS/ME” the dragnet of patients are not being
referred on to super specialists and instead patients are all being shunted
into a cul-de-sac where CBT and Graded Exercise Therapy are persisting as
best practice treatments that will be of no use or possibly harmful to
patients carrying a clinical misdiagnosis – especially misdiagnosed patients
who are being denied pharmacological treatments.

In this respect I am now of the view that the NHS and Liaison Psychiatry has
been seen to be negligent in protecting an unknown number of vulnerable and
seriously ill patients from being clinically misdiagnosed since 1988.

Should anyone reading this know of any other forums such as Facebook where
misdiagnosed patients could be put in touch with me then by all means do
pass this e.mail on and let anyone interested have my e.mail address (
stephen . e. ralph @ btinternet . com )

I will post a further update when I have made further progress.


Stephen Ralph DCR(D) Retired.

Statements from patients subjected to a clinical misdiagnosis

24th May 2009

Dear Stephen,

I hope you do not mind me contacting you; I was very interested to read your
comment on the New Scientist website in reply to the interview with Prof.
Wessely and then found your email address from the ME Action UK website.

I have been seriously ill since 1997 and for most of that time have had a
diagnosis of CFS or somatisation disorder (depending on which doctor I was
seeing). My health continued to deteriorate and about two years ago I
finally managed to get some doctors to take me seriously after my health
problems became severe enough to require hospitalisation.

I then went through a long journey of medical investigations which concluded
with the fact that I have Behcet’s Disease and Ehlers-Danlos Syndrome.

For a long time I have been of the opinion that many people diagnosed with
CFS or ME probably actually have other illnesses (either currently known
about or not). Whilst going through my diagnosis for Behcet’s it became very
clear to me quite how many serious, but often treatable, physical illnesses
there are with the same groups of symptoms. Many of these are complicated to
diagnose and most patients given a diagnosis of CFS are not thoroughly
investigated for other possible conditions.

I can accept that somatisation disorder and Wessely’s form of CFS exist, but
I think relatively few patients have these disorders. I strongly feel, that
for the majority of patients with serious physical conditions causing a
multitude of symptoms, the psychological treatment approach is nothing less
than psychological torture.

Reading your comment made me wonder how many other people with Behcet’s
disease have been put through this.


30th April 2013

Hi everyone,

Just to let everyone know that myself, my son aged 21 and my daughter aged
12 have been diagnosed with Ehlers Danlos Syndrome type 3 at UCH by
Professor Graham and my daughter with hypermobility at Gt Ormond St.

My son and myself have also been diagnosed with P.O.T.S. by Professor
Mathias at St Mary’s Paddington and I have the added pleasure of

My daughter is awaiting a referral for P.O.T.S symptoms backed up by Prof
Graham after I relayed my feeling that Gt Ormond St had not taken me or her

I was diagnosed with M.E. by William Weir in 1990 and my children have a
history of migraine, febrile temperature, severe growing pains, fatigue,
nausea and dizziness.

None of us have ever dislocated joints, have overly stretchy skin or can do
the splits!

Am I angry?

I’m angry about the kids.

I have been accused of projection of symptoms and both my kids were referred
and assessed by the child and adolescent mental health service, with no
action required!

For my 12 yr old who has the most severe symptoms of the two it’s hugely
important as she will not be treated in the same way I have endured for the
last 20 odd years, but of course for a mother it’s a hollow victory.


6 May 2013

Hi Steve

Good on you (for working on your misdiagnosis project)

1) what was the misdiagnosis?

Coeliac Disease (this was before the new blood tests were available). I had
a spike in my coeliac enzymes and was told I had coeliac disease for about 2
years before that was discarded.

Also because of the punched out lesions etc a few dermatologists labelled me
as doing ‘self mutilation’ but as the specialists now are saying I was
presenting with oral and genital ulcers at the same time and as one doctor
said that should have been a ‘red rag to a bull’.

Years ago I was told I had chronic fatigue but one doctor said that was a
symptom not a diagnosis which makes sense as a lot of diseases cause chronic

2) how long did you have to struggle with that misdiagnosis? – 10 years

Hope your project helps others.


7 May 2013

It took 20yrs to diagnose my behcets. Kept being told that joints were down
to arthritis and general wear and tear, Fatigue was down to too many late
nights and ulcers down to bad oral hygiene and genital ulcers were herpes.

I ended up in hospital with another problem, where after talking to drs
(different hospital) they realised , with all other problems, it all added
up to behcets. Since receiving the right treatment I have improved and for
most of the time it stays under control although still have flares of
differing degrees.

In a way I was lucky to be in the right place at the right time when I got
diagnosed, as I do really think that if I had continued to see someone at
the first hospital I would still be undiagnosed and not on the correct

With regards to my bones, I was found to have very little wear and tear and
a higher than average bone density (which helps while being on long term


13 May 2013

Hello Stephen,

My medical history has spanned a continuous period of disability and ill
health since approximately 1989. However it is possible that I have in fact
been ill since birth.

My first diagnosis and recognition of muscle weakness and other debilitating
symptoms was also one of Chronic Fatigue Syndrome. I was basicly left to get
on and find my own solutions to my condition which progressed to my being
virtually bedridden all the time.

By 2000 I was retired from work in the Local Authority as I was given no
assistance to be able to return. I was forced to accept retirement under a
psychiatric cause because the Local Authority at that time refused to accept
that Chronic Fatigue Syndrome existed and could be a permenant condition.

However I was then rediagnosed with Behcets Disease but still not given
treatment as the Doctors I saw didn’t connect the muscle weakness and other
neurological Symptoms to the behcets. This still went under the diagnosis of
Chronic Fatigue Syndrome and thus was ignored. I then had an EMG test on my
right eye due to facial drooping which was then diagnosed with Myasthenia
Gravis but the further tests to confirm Generalised Myasthenia were negative
and so the diagnoses of Myasthenia Occuar was given.

The diagnosis of Behects was withdrawn in favour of it being Chronic Fatigue
Syndrome and Myasthenia Occular.

I was not given any medication for the myasthenia and by this time I had
lost my balance with vision, speech difficulties, incontinence, urine
retention, extreme pain and spasm and spasticity, numbness, tingling and a
whole realm of under skin lumps, pustules etc. I was also suffering weak
breathing muscles and had also been diagnosed with Sleep Apnea.

By fluke around 2007 I attended my local hospital eye department who
diagnosed me with a stroke but this couldn’t be proved on MRI. I was
referred to a new Neurologist who diagnosed me with Neurobehects and ataxia.

The eye department further diagnosed and undiagnosed 5 other vision problems
including macular, optic neuritis, myasthenia. But then decided it wasn’t
any of these so have left me with my vision deteriating at a fast rate.

I was referred back to my rheumatologist in another hospital and taken into
hospital. A different Neurologist [who I had never met and didn’t even
examine me] said there was nothing wrong with me at all and it was “all in
my mind”. I was referred to a psychiatrist for sommertisation but fought
this referral and lack of diagnosis through the hospital complaints
procedure. It was then changed back again to Behcets Disease,

Myasthenia Occular, Chronic Fatigue Syndrome, sleep apnea and a whole realm
of other symptons. The list took up the first page of the doctors reports
which naturally caused problems when attending new Dr’s or hospitals.

My illness was so bad at one time that I was confined to bed, unable to
speak with memory loss and cognative problems. I couldn’t eat and drink and
thought I would die. I errupted in lumps under the skin and was rushed into
hospital where I obtained the first treatment/medication I’d ever been
given. Prednisolone was given at extremely high doses and I picked up enough
to be sent home.

The Doctors I had been seeing continued on with the prednisolone and added
Immune Suppressants which have had there own set of problems.

Since then I still have numerous problems with my health some of which is
attributed to behects and some which is either just ignored or passed over.
This is still the same today even though now it is accepted I do have a
medical problem there is nearly always an argument between doctors with me
in the middle. Each time I have another symptom I am referred to yet another
specialist who looks into my problems but cannot diagnose me and never talks
to my other doctors to get a consensous. I must have seen around 12
different consultants in the last year alone. There are mistakes and
incorrect information all over my medcial file which has now made it

This in my opinion has made me more ill and I still am not really convinced
they have it right.

You may or may not be surprised that it was at Guy’s and St THomas’s
Hospital neurology department I was

re-diagnosed with Chronic fatigue Syndrome. Around 2008 The psychiatrist I
saw to confirm this was attached to the CFS clinic at Kings. At the time all
the other symptoms I was experiencing [i.e balance, speech, drooping facial
muscles, incontinence etc etc] were written in my psychological report as
“Unexplained Medical Symptoms” and brushed aside.

I was meant to attend Kings CFS clinic but my PCT refused funding as there
was a clinic at my local hospital. I attended my local clinic and saw a
clinical psychologist who was appalled at my story and wrote a 5 page report
stating that I did indeed have the symptoms of CFS but that she had never
seen the additional symptoms that had been written off as “Unexplained
Medical Symptoms” within their clinic and she hoped they would continue to
be investigated.

She copied this to my Neurologists at Guy’s and had 10 sessions at a CFS
course at my local hospital for learning how to pace myself, no other
assistance or treatment was given. All the other people at these sessions
were newly diagnosed and completely shocked at seeing me in such a state. It
didn’t help them to know I had been diagnosed with CFS since 1989/90 and it
didn’t help me because this was targeted at people newly diagnosed, most of
whom were still able to work and predominantly had the fatigue element of

At my next appointment at Guy’s when I saw the neurologist again she stated
I’d had a miraculous recovery and signed me off her books. Of course I
hadn’t had a miraculous recovery at all. But moreso I thought it was
punishment for the clinical psychologist challenging her diagnosis….I was
a trouble maker in otherwords.

I was therefore left to get on with it once again and by then I was so ill I
couldn’t get out of bed and was moved in to the back room of my house and
stayed there for around 2 years trying to fight my own way out. It was by
fluke at my local hospital again that the eye department did a field test on
my eyesight and found out I had gone blind down 1 side of my vision. They
thought i’d had a stroke and at the time I was relieved to hear this [sounds
strange but at least it was some explanation]. I told them of all these
other symptoms and was referred to a neurologist again who diagnosed me with
Neurobehcets. He referred me back to Guy’s and St Thomas’s Rheumatologist
who had previously diagnosed me with behcets.

This Consultant took me into St Thomas’s for 5 days and it was during this
stay that a consultant from the Guy’s Neurology Department [again] came to
see me for 5 minutes and refused to examine me stating that I had a mental
health problem and not a medical one. He wrote to all my Dr’s telling them
this and stated that he would not agree with my having any medication at
all. Further unbeknown to me he wrote a referral to a Psychiatrist attached
to guy’s stating that he thought I had sommertisation. Luckily one of the
Rheumatology Student Dr’s was so appalled that he secretly copied me in on
the letter’s….otherwise I wouldn’t have known until the psychiatrists
appointment had come through.

Once again I was left with no treatment and became stuck between 3
consultants basicly arguing amongst themselves. I was having to take photo’s
of my private areas to show the blisters and ulcers and take them with me to
put on file. I was terrified for my life that I would be written off with a
label of “sommertisation”. Another twist of fate was found as the PCT
refused the funding for the psychiatrist. I had written to them explaining
that I’d had no previous knowledge of the referral and was in the process of
complaining about the Neurologist who had referred me. This was enough to
put the PCT off from funding it.

The rheumatologist at St Thomas’s stuck with me and agreed that I didn’t
need to see a psychiatrist and I am still with him and the neurologist at my
local hospital.

As I said before, my problems still exist within the medical system but can
you imagine what might of happened to me if the Neurology Department at
Guy’s had got their own way and I got the label of “Sommertisation”…’s
bad enough now, but I dread to think what it could have been.

sorry if I have gone on….but this example is still just a short version of
what has happened to me in the medical system…..I have thought of getting
a Doctor to look through all my medical files and try to piece together my
medical history because the files are in such a mess with lots of
unaccuracy’s, mistakes and things……but who could I trust to do that ????

I had the drive to fight before but I am so unwell now that tackling these
things makes me more ill.

Sorry if I went on but you know what it’s like once you get going…..this
is only a short version.

I admire someone like you and hope you gain headway in this……if there is
anything you think may help…let me know.


13 May 2013

Hello Stephen,

I was told that l perhaps had ME and was treated like a time waster for
years until l became so ill that l could barely walk and lost a huge amount
of weight. l was unable to eat as my joints in my body were so painfull that
even my jaws were so sore l couldn’t chew food.

When l developed genital ulcers my doctor told me to go to the VD clinic in
the Royal Voctoria Hospital in Belfast and it was there that an imunoligist
diagnosed Behcets. l had to fight for benefits and was told by a board
doctor that if l could eat bread and drink water l would be fine.

l wrote to the chief medical officer of Northern Ireland and he replied that
the doctors comments were perfectly correct. lt wasn’t until the diagnoses
of Behcets that l was given a low rate of DLA.

l am now being told by ATOS that l am fit for work despite being almost bed
ridden most days and l am actually seeing my doctor today to get a letter to
say l am unable to attend a work activity club. For some reason Behcets
suffers are not understood. lt isn’t a visual illness and is not outwardly
evident so most individuals feel it doesn’t exist.


13 May 2013

Wow you guys have had it tuff and still smiling .

Well hear is my little boring story.

i think it all started with me when i was about 5 that is when i had my fist
tooth taken out .by 8 i had all my front teeth out and had false teeth pit
in from then to now all ways had bad teeth and i am just about to have an op
to have the last 4 ( all i have ) out and fixed . i never smiled as a kid
well not even now .

then when i was about 8 or 9 i suffered tummy pain all the time my mother
was told my body was changing i was growing up it was nothing just some
tummy ulcers given some med’s and told i would grow out of them . then the
bad headaches started and over my teen years they just grow and grow i did
not think pain could be so bad . the Dr put me on the pill to see if that
would help but no .

at 19 i was married headaches pain still growing had fist baby at 23 next 24
from then on my headaches went to migraines i think i was given every
treatment and drug known to man eg: cryogenics, morphine,pethidine,lidocaine
infusions ,opium ,marcaine injections,(in to head face eye ) grass ( that
made me sick ) and there were a few more things . i have just trend 50 and
can;t think of a day i have not had a headache .

in my late 30th’s i was told my joint pain was arthritis and you will just
have to live with it . 7 days ago it has been 7 years i was told i had BD
now all the pain and funny things that have happen to my in my life and i am
would think there is a lot more to come i can deal with most things but it
is the pain I have that i can’t handle 24/7 you can only cry so much .

but i will not let this bet me . i hope this helps in some little way if you
wont to know more just ask .

thank you


15 May 2013

Hello Stephen,

I had numerous bouts of ‘tonsillitis’ from a very young child but this and
repeated mouth ulcers were the only problems I had until aged 24, when I had
a complete physical collapse.

It was diagnosed by a hospital consultant as ME (very fashionable 25 years
ago.) Looking back I can see that it was, of course, Behcets – joint pains,
exhaustion, headaches, muscle weakness, ulcers, stomach problems,
memory/concentration problems etc.

After complete bed rest for nearly a year I recovered to a reasonably good
extent, though never back to the energetic person I had formally been. I
changed my lifestyle accordingly and things were okay until a couple of
years after the birth of my 2nd child. Then everything started up again,
with the joint pains and ulcers (now genital as well) becoming severe.

My GP was very sympathetic and sent me for lots of tests, including for STIs
(which I knew wasn’t the case!) Eventually a biopsy was done on one of the
genital ulcers by a consultant gynaecologist – a grim procedure but the
biopsy result came back as “entirely consistent with

Behcets Disease”, so that – along with the other associated symptoms – meant
I was given the diagnosis of Behcets with a lot of certainty on the
consultant’s part. What a relief, after more than a decade of knowing that
ME was just not correct.

However, my GP refused to accept the consultant’s diagnosis. To say I was
upset is an understatement! I wanted to understand what I actually had, and
how it could be treated so I could try to get my life back on track.

The GP was keen for me to ‘accept’ that I had Chronic Fatigue Syndrome, as
he termed it. He then decided I might have Lupus. Or a stomach ulcer.
Basically, he said, he wanted us to keep an open mind in case the consultant
was wrong – he said that he had other patients whose diagnosis changed and
they had found this very difficult. He felt it did not matter what the
disease was called anyway…I tried to explain that it mattered very much to
me, the patient – but could not get through to him.

I think this GP was well meaning, but for me it was a disaster. I felt like
I was hitting my head against a brick wall, and using up so much energy I
didn’t have…it was a very upsetting time.

Anyway, I changed GPs and have had no problems since then – with GPs or
consultants. Some may not know much about Behcets but they accept the
diagnosis and I am treated accordingly


16 May 2013

I also experienced a similar thing a couple of years ago, prior to my
Behcet’s diagnosis. I was told by a rheumatologist that it did not matter
what the name of the disease was. She told me that what counts and is
important is for me to feel better… but what these doctors seem to forget
is that without knowing exactly what disease it is, then how can you get
better without the proper treatment?

For people who are supposed to be very intelligent professionals, they
sometimes act clueless. I could kind of see her point in a small way; but
its not only important because of the need for proper, disease-specific
treatments, but also for our own peace of mind.

Without knowing exactly what it was that I had that was making me so sick
and causing so much pain, I was so scared and full of so much anxiety.
Sometimes I was so afraid to go to sleep at night because I had no clue if
my mysterious illness was life-threatening or not.

Also, without having a positive diagnosis to label my mysterious illness, I
often doubted its true existence and would go through weaker moments when I
believed I was just imagining it all or was going crazy.

The doctors in the emergency room would very quickly treat me as a “drug
seeker” especially because at that time, I ended up in the ER with severe
pain attacks, but had no known reason for the ongoing pain. I even had a
“pain specialist” who dealt with weaning people off painkillers come see me
during one of my bad Behcet’s attacks– she actually stood there at my
bedside telling me that I needed to stop demanding pain meds before I become
fully dependant on them– the dumb thing was that I wasn’t even on around
the clock pain management at home during this time and that’s why I ended up
in the ER when it would get bad enough.

She couldn’t grasp the understanding that I was truly experiencing as severe
of pain as I was, mainly just because I didn’t have a diagnosis of a
disease. So I very much agree that getting a proper diagnosis is vital to a
person’s well-being, both physically and emotionally.


Statement from the author

Last year I received an e.mail from a subscriber to Co Cure
who had read one of my articles about medical misdiagnosis.

The writer told me she knew of a 19 year old woman in Australia who had died
from untreated Behçet’s disease because the patient had been wrongly
diagnosed with Chronic Fatigue Syndrome.

Several years ago whilst I was fighting my re-diagnosis battle I had a
lengthy conversation with a woman in London who was volunteering on the
Behçet’s Syndrome Society helpline.

This woman told me that she went for a little over 10 years with the wrong
diagnosis of Chronic Fatigue Syndrome (CFS).

Having made prior attempts to have her CFS diagnosis overturned, her
diagnosis was only changed to Behçet’s syndrome when she suddenly lost the
total sight in her left eye and the partial sight in her right eye.

It was only when this woman became almost totally blind did the medical
profession start taking her “invisible” symptoms seriously in the context of
an autoimmune vasculitic disease.

At that time I was told by the Behçet’s Syndrome Society on many occasions
that Chronic Fatigue Syndrome was the most common misdiagnosis for cases of
Behçet’s disease amongst their membership.

In January 2013 during an e.mail exchange with Professor Sir Simon Wessely,
he revealed to me that he could not say whether or not he had ever seen a
case of Behçet’s disease pass through his out-patient clinic.

Recently I joined a forum for people like me who have Behçet’s disease and I
asked a question about clinical misdiagnosis.

The replies I received are all printed below however I have removed anyone’s
name to protect their privacy.

All those who have contributed knew that I was working on a misdiagnosis

My project started off purely dealing with Chronic Fatigue Syndrome being
wrongly diagnosed in patients who suffer Behçet’s disease.

However, I now know that there are other rare conditions that are also being
wrongly diagnosed as Chronic Fatigue Syndrome including Familial
Mediterranean Fever (FMF) and Ehlers Danlos Syndrome (EDS).

Any single clinical misdiagnosis can be devastating for the patient and
their families due to the fact that the correct treatment, medication and
therapies are denied those who are medically misdiagnosed.

In my own case, my parents had to become my full time carers for 8 years
when I became 75% bedbound and 95% housebound from the severity of my

My illness forced my Mum and Dad to move house to a different region so we
could afford a property large enough for me to have my own bedroom as I had
been living in their lounge that had been turned into a bedsit with blacked
out windows.

Patients die due to misdiagnoses yet the doctors involved do not take it
seriously unless such cases end up with the patient dying and the case being
taken to Court.

By and large, doctors get away with making misdiagnoses and are rarely ever
held accountable for their medical mistakes that can condemn a patient for
decades of unneeded suffering.

The patient has absolutely no protection as you will see from reading the
statements I have printed below.

Something needs to be done and a line needs to be drawn in the sand.

This situation – an open wound in the NHS – needs to be brought to an end.

Today, patients are now being routinely misdiagnosed by doctors
insufficiently qualified or experienced to recognise complex biomedical
autoimmune and neuroimmune diseases.

These doctors are empowered with the benign psychosocial diagnosis of
Chronic Fatigue Syndrome to enable them to make those misdiagnoses.

Back in 1988, Chronic Fatigue Syndrome (pioneered by the then Dr Simon
Wessely) was introduced to the NHS in a totally uncontrolled fashion.

Any doctor – be they a GP or a general specialists – became able to diagnose
a case of Chronic Fatigue Syndrome yet only a handful of super-specialists
here in the UK are fully competent to recognise and diagnose relatively rare
diseases such as Behçet’s disease, EDS or FMF.

Instead of patients being referred upwards to regional super-specialist
centres; patients who need this sort of referral are instead being told they
have CFS and are being shunted sideways into a dead end cul-de-sac.

As a retired diagnostic radiographer it is my view that those in charge of
vigorously proliferating CFS and then ME/CFS across our National

Health Service should have firstly checked to ensure that their definition
of Chronic Fatigue Syndrome relating to the symptoms they claim to be
“medically unexplained physical symptoms” did not partially or wholly
overlap the identical set of symptoms relating to diseases that GP’s and
general specialists would be unqualified to recognise and correctly diagnose

Those in charge of CFS should have given the rest of the medical profession
from GP level upwards a sort of “watch list” so that doctors who may not
know much about BD, EDS or FMF amongst other rare diseases were aware of all
the alternative diagnostic possibilities.

I have established from Professor Sir Simon Wessely that he and his
colleagues never did take a look to see if their “medically unexplained
physical symptoms” effectively smothered patients presenting with diseases
that manifest the same set of “invisible” symptoms whilst presenting with
few or even no visible signs.

In this respect, twenty five years ago when Chronic Fatigue Syndrome came to
the NHS, this diagnosis alone “broke” the well established and respected
process of accurate differential diagnosis and the accompanying process of
upward referral to regional super-specialist centres.

After 25 years of clinicians medically misdiagnosing patients because of the
availability of CFS, nobody knows how many patients have become innocent
victims of those who still vigorously promote Chronic Fatigue Syndrome as a
functional psychosomatic disorder in the present day NHS.

As an indicator to just how widespread this situation has become; the
ability to correctly diagnose and treat cases of Behçet’s disease was so bad
that only last year the Behçet’s Syndrome Society succeeded in setting up 3
specialist centres across NHS England.

These super-specialist centres rely upon GP’s and general specialists being
able to recognise cases of Behçet’s disease when such cases may not present
with the stereotypical visible signs of mouth and or genital ulcers.

As Behçet’s disease can present with no visible signs on examination, it is
still be the case that GP’s and general specialists will unwittingly
misdiagnose patients with CFS until there is a fundamental change to the
present differential diagnostic process that puts Chronic Fatigue Syndrome
front and centre as a benign diagnostic option for “complex” cases that
appear to a GP or a general specialist to have no apparent cause.

Yours sincerely,

Stephen Ralph DCR(D) Retired.

(Clinically misdiagnosed with CFS from 1996 to 2008)

27th June 2013.

stephen . e . ralph @ btinternet . com

Written by carolecarrick

July 15, 2013 at 11:15 am

Posted in Uncategorized

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