0BSome Inconvenient Truths

 

 The decline and fall of differential diagnosis

within the medical profession and our NHS

 

 

 

 

 

 

 

 

 

Some observations from a retired diagnostic radiographer

subjected to a medical misdiagnosis for 12 years

 

 

Written in support of ME Awareness Day

 

Stephen Ralph DCR(D) Retired.

12th May 2013

About the Author

I am a 48 year old retired diagnostic radiographer.

I trained a worked in the UK on the south coast of England at hospitals in Southampton, Poole, Bournemouth, Salisbury and Portsmouth between 1988 and 1996.

I took up diagnostic radiography having started my working life in the Civil Service and then in high street banking.

At age 14 I injured my back and spent 6 months off school.

Subsequently I suffered a major flair-up of what was loosely diagnosed as being juvenile ankylosing spondylitis however my spine never showed any evidence of fusion.

At that time my consultant was the well respected rheumatologist Dr Barbara Ansell.

HUhttp://en.wikipedia.org/wiki/Barbara_AnsellU

Between 1979 and 1981 I spent a total of 12 months in hospital.

During 1995 I suffered a flair-up of reactive arthritis following an episode of campylobacter food poisoning with thanks to a badly cooked omelette in a hospital canteen.

During 1996 I picked up a severe viral illness from a Tunisian national at an Easter Sunday lunch.

Subsequently I suffered a whole body flair-up of joint pain, muscle pain, profound fatigue and later on shortness of breath, migraines and gastro-intestinal dysfunction that all got worse on physical exertion.

On a second opinion I was told I had post viral chronic fatigue syndrome.

I had to give up my independence, move back to my parents who became my carers.

I medically retired from the NHS at the end of 1997 and following a year of attending an occupational rehabilitation unit, my condition continued to deteriorate until I found myself housebound and bedbound for 8 years in total.

Twelve years later on I was formally re-diagnosed as having Behçet’s disease.

I took up campaigning in 1997 and started MEActionUK HUwww.meactionuk.org.ukU

This document is a summary of observations based on my extensive personal and professional experiences of the NHS and the medical profession stretching back 25 years.

Some doctors reading this may find some of my observations less than easy to accept.

 

How the NHS used to work

Whilst I was growing up and turning into an adult I unfortunately needed to access the NHS for a diagnosis and treatment relating to orthopaedics and rheumatology.

I injured my spine playing with friends. I suffered a hairline fracture of the 4th vertebrae.

After this healed I went back to school but subsequently suffered a form of rheumatic fever that was hard to identify with the standard tests of the time.

The way my family knew the NHS, we greatly respected the way my GP would promptly refer me to a specialist.

If that specialist thought there was something going on that she/he did not fully understand then that specialist was readily able to refer me upwards to a regional specialist centre that also dealt with research.

In my case, my local hospital was in Taplow, Berkshire but I was also sent to Northwick Park in Harrow as well as St. Mary’s in London.

At no time did a GP or a specialist consider issues of functional mental illness as a potential diagnostic explanation for my physical symptoms yet I was a  “sero-negative” patient which means that whenever I had blood tests or other standard examinations such as x-ray’s - there was nothing obvious to see.

At one point during my hospital stay in 1980 I was given an appointment to see a psychiatrist but only because I was suffering from mild depression from being ill and being in a hospital. That was the only time I ever needed help from psychiatry.

Back in the 1980’s, there did not seem to be an industry whereby patients I knew were told that their atypical sero-negative arthritis was in fact a functional somatic syndrome or a bodily distress disorder or Chronic Fatigue Syndrome for that matter.

Back in the 1980’s, psychiatrists were not involved much in mentally induced physical illnesses.

The NHS I encountered then had an intrinsic honesty and a sense of care and a wish to help.

 

The NHS I knew as a diagnostic radiographer (1988 – 1996)

Working in an x-ray department was a world within an NHS universe.

As students we worked within the department unless we were shadowing staff covering the operating theatres or the dental department or perhaps day surgery.

I had no knowledge at all of an NHS that accused patients of making up their physical illness in their heads.

I only knew that the NHS from the perspective of a radiographer was a fantastic organisation that did its utmost to serve the patients who needed our services within a multidisciplinary team.

I worked 24 hour shifts and saw all manner of life and death pass through Accident and Emergency, Elderly Care, Oncology, General Medicine, Paediatrics and Neonatal.

As a student I had to do some nursing work on both surgical and medical wards as well as a short stint nursing in A&E where I found it fascinating holding someone’s finger straight for nearly an hour whilst he had a tendon stitched together by a fairly newly fledged house officer.

As far as I was concerned, I had the best job in the world. I was looking forward to management courses, running a department and training students over the next 30 years.

 

The NHS I knew as a patient (1996 to the present day)

During the summer of 1995 I suffered a case of campylobacter food poisoning that hit me for six, I had a badly cooked omelette in my hospital canteen and had no idea what would happen next. A couple of days later, I found myself working in A&E when all of a sudden it felt as though I had trodden on a piece of glass.

I hobbled down to a cubicle in A&E, I had a blood test and I was bemused to find that they had found that my “ESR” had gone up to 48. I was subsequently told that I had reactive arthritis as a response to the food poisoning.

Within two weeks of this test, that broken glass feeling in my foot extended up my leg to my pelvis and then down my other leg to my right foot.

I had to take 3 months off work but returned to desk duties in our front office just before Christmas 1996.

Being NHS staff I was quite often able to jump the queue to see a doctor or rather I was fitted in at the end of a list at my hospital so that I didn’t need to take time off.

By Easter 1997 I had fully recovered and all was well again.

My manager told me that I could have Easter off before returning to the On-Call rota just to be sure I was 100% so I took that opportunity to celebrate with my old school friends.

On Easter Sunday I found myself at an Easter lunch and sitting at a large table with around 9 other people all laughing and chatting and having an excellent time.

I sat next to a Tunisian man who had just arrived from Tunis. He was with his new wife – the younger sister of one of my old friends present that day.

Half way through the meal (and this man only spoke French) my neighbour said to his wife that he was feeling dreadful and that he thought he had the flu.

Apparently he had been feeling ill on the plane but as I sat there sitting right next to him, the alarm bell silently rang.

I drove back down to the coast on Easter Monday and thought nothing more.

Around three days later I had the worst case of influenza that I had ever had in my life.

For three days I remember being in my bed fully clothed covered by my duvet and shivering with cold but sweating loads.

It took me around 10 days to get back to work but as I’d already taken so much sick leave I was determined to get back to my duties.

Two weeks after returning to work having felt absolutely fine, I had a massive whole body flair-up of poly arthritis that started in my left shoulder and then went everywhere.

Everything got worse on physical exertion and I found myself spending two weeks struggling at work walking around feeling like I was walking on glass and then taking two weeks sick leave to recover enough to go back to work again.

This 2 weeks on and 2 weeks off went on for several months. Until the NHS I knew turned and displayed its dark side.

The doctor I was a patient of turned around and showed me a side of the medical profession I had never seen before.

I had been prescribed Volterol that wasn’t working but then I found it mysteriously difficult to get appointments the longer my illness went along. I was not making any progress so it was obvious that the doctor had run out of ideas and would need to think deeper about why I was ill and not responding to his treatment.

The rheumatologist appeared exasperated as to what was wrong with me. He declared that if I didn’t have reactive arthritis then I must have a condition called Reiter’s syndrome but when I investigated Reiter’s syndrome the description did not fit what was happening to me.

The last time I saw this rheumatologist he turned around and without any prompting comments from me he bluntly said “look, take the Volterol, keep exercising, stay at work or you will lose your job.” He then closed my notes and placed them in his “out” pile.

After I left the consulting room I looked for a leaflet detailing how to complain.

A clinic nurse whom I knew from my time as a student came over to me and asked me what was wrong.

I told her what had happened and she said to me “well if you do make a formal complaint it would not be the first one and it won’t be the last.”

I then went to my manager and ended up in tears in her office.

My manager told me that this rheumatologist was a golfing partner of my GP at the time so it was pretty well pointless continuing as things were.

My manager suggested I see my GP and request an urgent second opinion.

I went back to my GP who was filming his clinic for training purposes. I told him what I thought of my care so far and he granted me a 2nd opinion.

By then I’d had to move back to my parent’s so my Dad took me to a hospital in a different district where another rheumatologist had been sent a referral from my GP that I now know was a misdirected referral that omitted important facts that my GP was ignorant of.

This new rheumatologist, working in an elderly services unit, carried out some more routine tests that came back negative.

Instead of taking things further by escalating my case to a regional research hospital where I could have seen a more senior specialist; I was told that I had Post Viral Chronic Fatigue Syndrome. This was the end of my stunted diagnostic pathway.

This stunted diagnostic pathway – created by the introduction of Chronic Fatigue Syndrome - describes what has been happening to patients all over the UK.

 

The world of living with a diagnosis of “CFS/ME”

I joined a rehabilitation course run by this 2nd rheumatologist and his Occupational Therapist but my condition continued to deteriorate until I was unable to tolerate the journey to and from the unit.

I kept going for just over a year but in the end I was going nowhere and getting more and more ill.

My migraines were lasting for days and I was sitting at my bathroom sink to have a basic wash and I was exhausted and in a great deal of pain.

I was unable to take a regular shower and taking a bath was impossible.

Over this time I lost nearly all of my friends and following a battle to avoid having my job terminated, I managed to achieve medical ill health retirement.

But I was now firmly in the cul-de-sac of Chronic Fatigue Syndrome (CFS) where I discovered that no matter what your symptoms were, the doctor you saw just turned around and said that your reported symptom was just another expression of CFS.

I had developed severe gastrointestinal pain so I did get a referral to a specialist who carried out a gastroscopy.

When I went to get the results from the Gastroenterologist I will never forget sitting there with this doctor who didn’t know me from “Adam” telling me that he had recently seen a very interesting article about CFS in The Lancet. He said he thought I ought to try a course of anti-psychotic medication.

I went back to my GP, told her what he had told me and she wrote a letter of complaint as even she felt this was just totally unacceptable.

But with thanks to liaison psychiatry, Chronic Fatigue Syndrome and the psychologisation of physical symptoms and dysfunctions, the attitude I faced is the attitude many patients face from the medical profession if they get diagnosed with Chronic Fatigue Syndrome.

I had also developed an ongoing skin problem and my GP offered to refer me to a dermatologist.

I was put on Isotretinoin also called Roaccutane.

When this didn’t work and my acne lesions just kept on coming back, the dermatologist ran out of ideas and I was referred back to my GP.

Still firmly wedged in the cul-de-sac of Chronic Fatigue Syndrome my family moved up to Lincolnshire because we had all become resigned to me being ill for a very long time and as I had been using my parent’s lounge as my bedsit, we all needed more space.

In the eyes of liaison psychiatrists, I was reading that I had been manipulating my parents to gain attention and that their efforts to help me were probably just helping me remain ill.

We all changed our GP’s but in 2004 I met a new young GP who was actually actively interested in my medical history from the first time we met.

As he was interested, I dared to show him two photographs I had taken of my knees. The photos were taken during the night or rather in the early hours of the morning.

A definition of “hypercondriac” is “a condition that affects the mind where a person thinks they are ill yet in real sense they are not.”

I had been beaten so low by the medical profession and in particular the effects that liaison psychiatry has put upon the medical profession and the NHS over the last 30 years that I had come to the point where I felt that I must be a hypercondriac and mentally ill.

In short, Professor Simon Wessely and his like minded liaison psychiatrists were actually making me feel mentally ill.

By then I had discovered that there were upwards of 500,000 patients diagnosed as having Chronic Fatigue Syndrome who were being told by liaison psychiatrists including Professor Sir Simon Wessely that CFS was a function syndrome of somatised symptoms.

They told us in a prolific number of research papers and the media that anyone with CFS including people with a diagnosis of ME - that Cognitive Behavioural Therapy and Graded Exercise Therapy were the best treatments to address abnormal beliefs about their ongoing ill health that had no underlying cause.

We were told that because there was definitely no underlying evidence of a disease going on; if we all just changed our belief systems and changed our “illness behaviour” we could recover ourselves and get our normal lives back.

I read articles by liaison psychiatry that told me I was a perfectionist and that I had a neurotic personality type driving my Chronic Fatigue Syndrome.

By then, 3rd parties promoting the belief modifying “Lightning Process” HUhttp://bit.ly/10BB3hyUH were getting press coverage and it seemed that if I decided to join this quasi-religion and if I signed up and paid for a secret mind altering course I could make myself better.

Cured by the non-clinically qualified private sector! Fantastic!

But then I discovered that one liaison psychiatrist working in the NHS named Dr Esther Crawley was actually backing this secret non-clinical psychotherapy and was keen to trial the mysterious “Lighting Process” on children no less - totally unbelievable to use children as guinea-pigs.

HUhttp://bit.ly/108wg0uU

Left right and centre, liaison psychiatry were publishing peer reviewed papers all over the world reinforcing the ideology that physical ill health could be perpetuated by faulty illness beliefs along with ingrained abnormal coping behaviour that included getting others to believe that they were really ill.

In the UK, the Government was handing the MRC millions of pounds of research monies that in turn went to Professor Simon Wessely and his many colleagues in liaison psychiatry including Professor Michael Sharpe, Professor Peter White, Professor Trudy Chalder and familiar others all of whom created an industry of churning out their “mind-body” ideology whist starting up “Fatigue Clinics” that in turn provided Cognitive Behavioural Therapy and Graded Exercise Therapy courses to a lucrative market they created.

From memory I don’t think any of them were Professor’s before the funding was handed out.

The three largest UK ME charities (Action for ME, The ME Association and Action for Youth with ME) along with heavily influenced support groups fell behind liaison psychiatry because the Government gave these charities grant aid to help them on their way with marketing and other funding causes.

A monolith had been build in front of sick and disabled patients suffering a range of debilitating physical symptoms that had no biomedical perpetuating causes or so we were all told.

Meanwhile, any well referenced worldwide biomedical evidence that you can find via Google or via HUwww.meactionuk.org.ukUH has been totally blanked and ignored by liaison psychiatry and by the Government and the NHS no matter what such international evidence describes from dozens upon dozens of independent biomedical researchers all over the world – all supported by the patient community.

If research isn’t officially state funded or carried out via the Medical Research Council then the UK Government and the National Health Service will not recognise such 3rd party research. Over the last thirty years, patients have been beaten down by an all powerful circle of medical professionals firmly supported by the Government.

When you are systemically ill and when you can only feed yourself via a nasogastric tube; being told that your severe ill health is caused by abnormal illness behaviour and faulty illness beliefs is nothing less than denigration and insulting to such patients suffering from severe Myalgic Encephalomyelitis. But then, denigrating the silent is just so easy to do.

Not forgetting of course that the liaison psychiatrists making all these claims have never actually met the vast majority of the patients they claim to have a professional understanding of. Once a patient is given a diagnosis that falls under the influence of liaison psychiatry; liaison psychiatry clamps onto those patients with an iron grip because they are a further source of funding for CBT clinics and out-patient lists.

Their beliefs are that the diagnosis given to those patients – be it given by a GP or a rheumatologist who may or may not have highly specialist knowledge of rare and complex diseases – those liaison psychiatrists have presumed that UallU those diagnosed with CFS or ME must be correctly diagnosed because once that diagnosis has been made it is set in stone.

There is no emergency exit – no escape route. Every physical symptom subsequent to a diagnosis of “CFS/ME” must - by its very nature – be caused by “CFS/ME” meaning that any subsequently developing heart disease or a range of cancers can all be ascribed as being just another aspect of “CFS/ME”.

And here lies the Achilles heel of the whole functional psychiatry project.

We have diagnostic overshadowing and the “buried in concrete” nature of the “CFS/ME” diagnosis.

How has the National Health Service come to this?

How is it acceptable that a small number of the medical profession – all of whom decided to specialise in psychiatry and then functional “liaison” psychiatry – none of whom have first specialised in rare biomedical diseases – who are professionally unable to recognise a case of Behçet’s disease from Ehlers Danlos Syndrome; how is it that such a small number of doctors can effectively control and influence the truly dangerously random diagnostic standards that now persist across our National Health Service today?

 

It’s all about the diagnosis

I’ll reverting back to my own experience because I know that many others have suffered a similar experience.

During 2006 and with hindsight, my GP had little or no understanding of the wide latitude of presentation relating to rare biomedical diseases. Why should he have had, he was a General Practitioner.

My GP had no recognition that Epididymitis or acne-form lesions or occasional mouth ulcers were relevant to all my other symptoms in relation to a possible case of Behçet’s disease.

My GP was however in total control of the referrals he made to two rheumatologists.

The two rheumatologists I saw also had no detailed appreciation of the wide latitude of presentation of rare biomedical auto-immune diseases.

I was not asked important questions such as “do you suffer from mouth ulcers?” I could have said “yes I do” but then I had no knowledge of the relevance of mouth ulcers. I was as ignorant as they were.

The first rheumatologist failed to refer me upwards to a regional centre when the treatment he prescribed failed to work. He ran out of ideas and then got fed up with me – a staff member - returning to his clinic.

The second rheumatologist failed to see the need to refer me anywhere else because he had been given detailed descriptions of Chronic Fatigue Syndrome and a misleading referral from my GP.

And of course my standard blood test results came back negative as they would do.

Chronic Fatigue Syndrome cut off my diagnostic pathway in the 2nd instance and I know so many people now who had their diagnostic pathway cut off by a general specialist or a GP who used CFS as a diagnostic crutch to lean on.

The patient has absolutely no protection.

The diagnosis of Chronic Fatigue Syndrome is a fantastic option for a doctor who has simply run out of his own ideas or funding to enable them to do the right thing and refer them up the clinical chain.

The symptoms of CFS and ME are common to many other diagnoses – many of them rare.

CFS and ME can so easily be misdiagnosed when a patient could actually be suffering from diseases such as Sjogren’s, Lupus (SLE), Coeliac disease, Multiple Sclerosis, Behçet’s disease, Familial Mediterranean Fever, Ehlers Danlos Syndrome (type 3), Lyme disease, Hepatitis C along with complex cardiac pathology as well as some forms of slow developing Cancer.

And for Fibromyalgia as a clinical misdiagnosis, I was recently alerted to four further biomedical diseases that may “look” like Fibromyalgia to an ill educated or disinterested, cash strapped doctor….

Chiari Syndrome, Hemochromatosis, Wilson’s Syndrome and again Familial Mediteranean Fever.

All of these diseases need the help of super-specialists.

By and large, patients are not being referred to such super specialists.

I have no doubt that all of these diseases above are significantly under-diagnosed.

Because Chronic Fatigue Syndrome has effectively dumbed down the whole process of clinical diagnosis – providing an easy benign answer to a set of persistent “invisible” symptoms; there are now a significant number of patients out in the real world who are living with a clinical misdiagnosis of “CFS/ME”.

Some of them will die with a clinical misdiagnosis and nobody knows just how many patients out there in the real world are affected victims of a system created by the activities of liaison psychiatry?

I know of at least six patients I have corresponded with since 1997 who have died from missed diagnoses or a misdiagnosis.

As far as Behçet’s disease is concerned, I have now discovered that Behçet’s disease has an alarming crossover of common “invisible” symptoms when compared to Chronic Fatigue Syndrome or Myalgic Encephalomyelitis.

Those symptoms are as follows….

 

HUhttp://www.meactionuk.org.uk/systemic-vasculitis-and-myalgic-encephalomyelitis.htmU

 

• PROFOUND FATIGUE, BREATHLESSNESS AND MALAISE WITH PHYSICAL OR MENTAL
EXERTION

• INTERMITTENT FLU LIKE FEVER – HOT AND COLD FLUSH

• SORE THROAT, ENLARGED GLANDS IN NECK

• POST EXERTION FATIGUE - RECOVERY IS PROLONGED AND FRAGILE

• MULTI MUSCLE PAIN OR POLY-MYALGIA - LINKED TO PHYSICAL EXERTION

• MULTI JOINT PAIN OR POLY-ARTHROPATHY - LINKED TO PHYSICAL EXERTION

• COGNITIVE DYSFUNCTION – “FOGGY BRAIN”, POOR SHORT TERM MEMORY, PHYSICAL
CLUMSINESS, DIZZY SPELLS

• EMOTIONAL LABILITY, SHORT TEMPER, PERSONALITY CHANGES

• RECURRENT PROLONGED MIGRAINE LIKE HEADACHES (see attached document)

• HYPERSENSITIVITY TO LIGHT AND TO SOUND

• GASTRO-INTESTINAL DYSFUNCTION – IRRITABLE BOWEL SYNDROME

 

When I’d found out about all these common symptoms I wondered why on earth a functional somatic syndrome would share photophobia and phonophobia (hypersensitivity to light and sound) alongside all the other common symptoms suffered by a patient with an auto-immune systemic vasculitic disease?

Considering Behçet’s disease carries with it a psychiatric component for some sufferers - in the form of personality changes, short temper and emotional lability; I also wondered why the profession of psychiatry as a whole and indeed liaison psychiatry in particular was not actively aware of Behçet’s disease in relation to Chronic Fatigue Syndrome and Myalgic Encephalomyelitis?

 

An exchange of e.mail with Professor Sir Simon Wessely

Back in January 2013 I decided to e.mail Professor Sir Simon Wessely.

I asked him if he had any knowledge of Behçet’s disease and he replied that he did not have a detailed knowledge and that he was no Behçet’s specialist.

I pointed out to Professor Wessely that Behçet’s had been identified back in 1937.

I asked Professor Wessely why perhaps 20 years ago, 10 years ago or even 5 years ago, either he or his colleagues had not carried out any research studies into the common symptoms that exist between Chronic Fatigue Syndrome and Behçet’s disease or the 19 other forms of systemic vasculitis?

Professor Wessely told me that it was for other parts of medicine to do such comparative research and that I should ask the profession of rheumatology as to why no such research had taken place.

It is a fact that Professor Wessely, Professor Michael Sharpe, Professor Peter White, Professor Trudy Chalder and Dr Esther Crawley amongst others have all spent their careers heavily involved in popularising what is now known as “CFS/ME”.

When any potential biomedical explanation of causation comes along; that explanation gets rapidly buried.

More than twenty years ago when “the chronic fatigue syndrome” went “mainstream” – driven by then Dr Simon Wessely, I had assumed all along that those  psychiatrists and those within the NHS placing their bets on this nosological horse had firstly looked at all the other possible explanations for their specific set of “medically unexplained physical symptoms.”

When you copyright an idea or a product you firstly need to ensure that there are no other products or copyrighted ideas that you might be infringing upon. You look for all aspects of similarity.

I have discovered now from Professor Wessely himself that as far as the medical profession goes and as far as those involved in the artificial construct of “CFS/ME” are concerned; nobody sat down over 20 years ago and with due diligence – went through all the possible pathological alternative explanations for the underlying perpetuation of what was decided to be called “medically unexplained physical symptoms” including the Chronic Fatigue Syndrome and Myalgic Encephalomyelitis.

Nobody bothered.

And nobody continued to bother in relation to the artificial construct of “CFS/ME” and Behçet’s disease right up until the present day.

It now turns out that “medically unexplained physical symptoms” exist quite simply because nobody in the medical or scientific professions outwith liaison psychiatry have bothered to do any biomedical research to microscopically examine those alleged “medically unexplained physical symptoms” in nosological relation to a whole range of rare biomedical diseases - some of which I have highlighted in this document.

I then asked Professor Sir Simon Wessely if he had seen any potential Behçet’s patients pass through his out-patient clinic and Professor Wessely told me that he did not know.

I asked the same question of Professor Peter White, Professor Michael Sharpe, Professor Trudy Chalder, Dr Esther Crawley, Dr Vincent Deary and others if any of them had seen a potential case of Behçet’s disease pass through their out-patient clinics.

None of them have replied to my simple question.

Nine years ago, I had the need to contact the Behçet’s Syndrome Society (BSS) charity for advice.

My new GP had just told me that he had a personal friend who had Behçet’s disease and I had been referred to a general rheumatologist for a complete reappraisal.

I spoke with a senior member of staff at the BSS who has now retired yet gave many years of good service and was well respected by the Charity.

I was asked a great many questions about my history and symptoms. I was told that Chronic Fatigue Syndrome was one of the most common misdiagnoses for Behçet’s disease and had been for many years.

I was told that Behçet’s disease can present with few or even no obvious visible signs of the disease and that a diagnosis of Behçet’s disease was made on a history of symptoms just as “CFS/ME” is diagnosed on a pattern of symptoms.

It transpired that the only difference to a lay person is that Behçet’s disease has some visible signs that keep coming back from time to time such as mouth and/or genital ulcers or epididymitis or uveitis or erythema nodosum which to you and me can look like late-onset acne.

As the visibly examinable signs can be few, I was advised by the BSS and by my GP to collect an archive of digital medical photographs because otherwsise I was advised that with a diagnosis of "CFS/ME" doctors were not going to beleive me or entertain an alternative diagnosis without visible evidence.

However, that cynisism and disbelief in subsequent doctors meant that it took eight clinical referrals and 4 more years that included instances of Serial Clinical Abuse before I was finally re-diagnosed with Behçet’s disease in 2008.

Only then was I given access to treatments to address my symptoms because now my illness was fully recognised.

 

Some inconvenient truths

From my initial research it is clear to me that functional liaison psychiatry has some serious questions to answer not to me but to the medical profession as a whole.

It is a fact that those representing “the Wessely School” failed over a period spanning more than two decades to examine all the possible alternative pathological explanations for the underlying causes of “medically unexplained physical symptoms” that are now being referred to as Somatic Symptom Disorders including Chronic Fatigue Syndrome, Myalgic Encephalomyelitis and Fibromyalgia syndrome.

It is a fact that even though Behçet’s disease has a whole set of functionally impairing symptoms that include possible psychiatric symptoms; liaison psychiatry and indeed psychiatry as a whole has systematically failed to research these pathological psychiatric issues in any studies since 1937.

It is a fact that “liaison psychiatry” has exploited “medically unexplained” somatic syndromes on the back of a failure of medical research as a whole to do the job of investigating biomedical causes and associations with existing rare pathology including auto-immune vasculitis, Behçet’s disease et al..

It is a fact that only a minority of “top-tier” patients who suffer all the hallmark signs of Behçet’s disease are involved in research into Behçet’s disease.

This means that the research that does exist into Behçet’s disease only describes patients who have the hallmark “barn door” presentations of this disease.

The majority of the rest of the Behçet’s disease population have never been a part of research studies yet I have been told and indeed I know for myself that patients who suffer few visible signs of Behçet’s disease can suffer just as severely especially if they are subjected to decades of medical misdiagnosis and serial clinical abuse from the doctors these victims are faced with.

It is a fact that over the last 20+ years, those severely affected by Myalgic Encephalomyelitis (ME) have been almost wholly excluded from any contemporary investigative or biomedical research and it is a fact that those severely affected by ME have the strongest correlation of symptoms when compared with the list of “invisible” symptoms suffered by people diagnosed with the un-researched end of Behçet’s disease spectrum..

I know of patients who have contacted me saying that they have suffered up to 20 years of clinical misdiagnosis of “chronic fatigue” with subsequent accusations of self abuse and other psychological denigration. In the end it was Behçet’s disease.

It is my view that a long term medical misdiagnosis should in truth be referred to as “Serial Clinical Abuse” because patients suffer year after year of neglect and psychological denigration from the mistaken beliefs of a string of ill educated doctors who presume that a patient must be mentally ill if they have “CFS/ME”.

Patients who are misdiagnosed with “CFS/ME” suffer the side effects created by liaison psychiatry that have infused the medical profession as a whole with a sense of doubt, disbelief and mistrust of their patients – doctors freely suggesting ulterior psychological motives that patients might have for presenting with a whole range of physically disabling and symptoms that are always so carefully said to be “distressing.”

Yes the symptoms are distressing but then the attitude of disbelieving doctors to a patient not suffering from any mental health disorder is also distressing for that misdiagnosed victim.

And the solution of attending a course of Cognitive Behavioural Therapy is of course a total waste of time and money for anyone living with an undiagnosed systemic biomedical, seronegative, auto-immune disease.

 

The “Wessely School” UwillU try to heap blame upon the rest of the medical profession….

During my exchange of e.mail with Professor Sir Simon Wessely he repeatedly tried to assert that it was actually the rest of the medical profession who were to blame for why nobody had made a link between Behçet’s disease and Chronic Fatigue Syndrome?

Professor Wessely pointed out to me that there were only 11 studies he could find looking online and that one of them was in German.

I was told by Professor Wessely that I should look at a rheumatology out-patient clinic for where the misdiagnosis takes place and that most of the patient’s he and his colleagues see are diagnosed elsewhere.

However, I am also told that when patients see Professor Wessely, Professor Peter White and Professor Michael Sharpe et al, an exclusionary process for other pathology does in fact take place. For example, Professor Peter White also works with an immunologist and between them they are supposed to exclude alternative pathological exmplanations for the patient's "medically unexplained physical symptoms."

So we come full circle to the small group of psychiatrists starting out as medical students, becoming clinicians and now Professors – some of them have been given titles by the Queen. None of them have been able to tell me if they have seen a single case of Behçet’s disease pass through their clinics and none of them have investigated alternative pathological explanations that extend to auto-immune systemic vasculitis.

None of them have even written a study dissecting the extensive list of remarkably common “invisible” symptoms common to “CFS/ME” and Behçet’s disease.

Recurring time and again over those 20 or more years is the relentless attempt by this small circle of psychiatrists to maintain their bunkered belief that Chronic Fatigue Syndrome can only be a functional somatic symptom disorder of “medically unexplained physical symptoms.”

To help them on their way, these psychiatrists steadfastly refuse to acknowledge decade upon decade of independent global biomedical research that sheds shafts of light revealing a litany of biomedical abnormalities relating to ICD-10, G93.3 Myalgic Encephalomyelitis and the ICD-10 G93.3 classified Chronic Fatigue Syndrome/Post Viral Chronic Fatigue Syndrome.

It is therefore no wonder to me that the community of patients currently labelled, diagnosed, mislabelled and misdiagnosed as having “CFS/ME” are justifiably very angry.

“Serial Clinical Abuse” creates victims who have nothing left but pain, disability and anger.

 

Where do we go from here?

It was 1996 when my health crashed completely with thanks to a severe flu like virus contracted from a French speaking Tunisian who was here in the UK for a short Easter holiday.

During 2004 I discovered from the history of Behçet’s disease that it was originally referred to as “the Silk Route Disease” because it used to attack people returning to Europe along the silk route. I now realise that Tunisia is regionally edjacent to what was known as “the silk route”. I now know that Behçet's disease is prevelant in Tunisia.

My life was genuinely devastated by what has transpired over the last 16 years. I am acutely aware that are people out there who have been through far worse and who are going through far worse an ordeal because of the abject failure of the medical profession and the National Health Service and ultimately our politicians who blindly accept the advice given to them by institutions such as the Medical Research Council and the National Institute for Health and Clinical Excellence (NICE).

It is a fact that the Medical Research Council (MRC) gave almost all the available funding it had to members of “the Wessely School” so that they could take ownership of “CFS/ME” allowing this one dimensional approach to endless research studies demonstrating the efficacy of Cognitive Behavioural Therapy and Graded Exercise Therapy.

It is a fact that NICE just rubber stamped whatever was recommended to them by “the Wessely School” whilst ignoring anyone who dared to criticise.

 

What is to Come?

In the weeks and months to come I will be pursuing the issues of accountability, potential clinical misconduct in addition to the clinical standards of the medical profession.

We need to ask why a doctor is allowed to get away with giving a patient a medical misdiagnosis that is inconsequential to their career but devastating for their patient or rather their victim?

We need to ask why ignorance and a disregard for knowledge have seemingly become acceptable within the medical profession of today?

Why are doctors not faced with their errors of judgement even long after the event via a professional protocol so that they can be educated out of making further misjudgements, misdiagnoses or clinical errors to other patients further down the line?

Why do doctors never apologise and why are they not made to apologise for their mistakes?

And if they haven’t been caught out for years then their back catalogue of possibly erroneous diagnostic decisions should be reassessed for the sake of all the patient’s involved just as is the case for a radiologist who is investigated for his or her poor judgement in making misdiagnoses when examining mammograms for signs of breast cancer.

One other issue I will be pursuing is the issue of making a diagnosis last for a fixed term.

In my view a diagnosis should have a “performance related” element.

When a diagnosis is given it should be monitored on the success or failure of the treatment given.

Should the treatment fail for that patient as it did for me and as it does for many others then after 12 months, that patient should have an automatic right to be referred to a senior super-specialist at a regional research hospital to have a full objective reappraisal based upon the failure of the treatment and the doubtful quality of the original diagnosis given to that patient.

Today a patient has absolutely no protection from the medical profession or the casual errors they make on a weekly basis. The only defence a patient has with regards to a suspected failure of knowledge or a suspected misdiagnosis is for the patient to request a second opinion. As I know myself – a second opinion is no defence.

I will be fighting for fundamental change.

Sincerely,                                            

Stephen E. Ralph DCR(D) Retired.