Saturday, January 19, 2013

Stephen Ralph on Behçet’s, ME/CFS and Misdiagnosis by Psychologists (2)

See part 1 here.
Permission to Repost

Hello there,

In the background during my absence from campaigning, I have been plugging away at trying to get individuals of influence aware of the associations between the invisible symptom set of ME and the invisible symptom set of Behçet’s syndrome.

I was recently told by one doctor dealing with “CFS” that he could only find 11 research papers on Behçet’s syndrome and that one of those was in German.

This doctor then proceeded to give me all the classic stereotypical presentations of Behçet’s syndrome including patients having clusters of mouth ulcers, genital ulcers, eye involvement in the form of uveitis.

And together with this I discussed the fact that the HLA B51 blood test that can show positive for a case of Behçet’s is more often than not negative for a patient who has Behçet’s.

I then pointed out the following which will become crucially important in the coming months.

If you take a look at this link.... you will see the various levels of symptom certainty needed to make a diagnosis of Behçet's Syndrome.

The certainty level exists for the purposes of clinical research which means that anyone who participates in clinical research will have the top level of certainty diagnosis and many of the easily visible and detectable signs of Behçet’s disease.

However, you will also see on that web page that it is still viable to have Behçet’s disease without all the obvious classic signs.

Even if you do not have those classic signs, you can still be diagnosed as having Behçet’s syndrome.

The fact is that nobody appears to have carried out any research into the other end of the scale…. The end of the scale where patients who can have Behçet’s have hardly any or indeed no visible signs that would be observable by a specialist at an out-patient appointment.

This then leaves the barn doors so wide open, you could taxi an Airbus A380 or a C130 transport plane right through that barn without it touching the sides.

In my recent post to Co Cure, I posted this question… “where does a diagnosis of Behçet’s syndrome end and a diagnosis of Myalgic Encephalomyelitis begin?”

If there are few signs or no obvious signs but there are a group of reliably reported symptoms that are almost identical between Behçet’s syndrome and Myalgic Encephalomyelitis then how exactly is it that a group of patients with ME are able – without knowing anything about Behçet’s syndrome – to report a set of “invisible” symptoms that are almost identical to the set of “invisible” symptoms reported by people with Behçet's disease?

I have not claimed that ME is the same as Behçet’s disease or that ME is an extension at the “invisible” end of the spectrum that has patients with research level signs of Behçet’s at the other end.

Behçet’s syndrome is an auto-immune disease – systemic vasculitis – the immune system causing blood vessels all over the patient to become inflamed.

I Behçet's disease the inflammatory process is self perpetuating.

As someone with Behçet's disease, the eight drugs I am now prescribed, partially address my symptoms but as yet I have not been offered the immune system modulating drugs that “dial down” the overactive immune system to stop the inflammatory process from affecting the variously affected systems in my body.

This self perpetuating inflammatory process cannot be reliably tested for.

This inflammatory process can affect a patient in all manner of ways.

People with Behçet's disease can share a hypersensitivity to light and sound in common with the same experiences of people diagnosed as having ME.

People with ME and Behçet's disease can suffer profound fatigue, malaise, the exacerbation of all manner of symptoms on physical exertion that takes a long time to recover from.

Both Behçet’s and ME include, poly-myalgia also known as fibromyalgia, poly-arthralgia, gastrointestinal dysfunction that can appear to look to a doctor like Irritable Bowel Syndrome.

Both Behçet’s and ME can cause “foggy brain” syndrome and muddled words or poor short term memory.

Indeed one of the side effects of Behçet’s can be a quick loss of temper - emotional lability or a change in personality.

Intolerance of stress is also surprisingly present in both Behçet’s and ME.

People with Behçet’s and ME can suffer cardiac symptoms along with acute breathlessness on exertion that then goes into profound fatigue, malaise and poor recovery.

From my own investigations with thanks to the Behçet’s Syndrome Society and the articles and study papers they sent me over the years, I also discovered that for some patients with Behçet’s syndrome there is a “relapse and remission” cycle that looks remarkably similar to that experienced by people who have Chronic Fatigue Syndrome.

What I find most alarming is – liaison psychiatry seem to have wholly, totally, completely and collectively failed to rigorously analyse pre-existing rare pathology with the purpose of comparing their set of “medically unexplained physical symptoms” that they claim is CFS to see if there was any close match with the same or similar set of “medically explainable physical symptoms" of existing diseases such as Behçet’s syndrome.

Surely any right thinking doctor involved in psychiatry would be fully aware of all biomedical conditions that carry with them possible psychiatric involvement such as Multiple Sclerosis for example?

A decade or so ago I watched a late night documentary on Channel 4 filmed by a man who had suffered a terrible ordeal at the hands of psychiatrists.

Prior to his eventual diagnosis of Multiple Sclerosis (MS) this man had been sectioned under the Mental Health Act after he started suffering psychiatric issues.

The psychiatrists at the secure hospital were single minded in their beliefs that this man was suffering either from bipolar disorder or schizophrenia or both of these conditions.

This man was locked up, put on all manner of powerful psychotropic drugs that left him sitting in a chair dribbling and unable to talk or even walk.

Eventually he managed to get out of that psychiatric institution with the help of his girlfriend and subsequently a year or so down the line he was referred to a neurologist who after further tests diagnosed this man as having Multiple Sclerosis.

The point of telling this story via this film was to let people know that the first signs of MS can be psychiatric problems and also to make people aware that if you get sectioned, treated appallingly against your will and then subsequently find that what happened to you was the result of a medical misdiagnosis; that misdiagnosis stays on your medical records for the rest of your life.

For the doctors involved, they just get on with drugging further patients fuelled by their single minded beliefs.... and so it goes on.

For the poor patient, the repercussions last for years down the line should they apply for employment that asks you to detail your past medical history that will have to include that misdiagnosis that was never struck off.

What I keep returning to – as a former diagnostic radiographer - is this – the diagnosis you are given is both vitally important and has profound implications for what happens to you after you have been given that diagnosis that could in fact be a misdiagnosis.

In the film, as it turned out, once the man had been given the proper diagnosis of MS he was put on the appropriate treatment for his MS and low and behold, his mental health symptoms disappeared.

In today’s NHS, the giving of a diagnosis has in my view become too easy and indeed scarily casual and cheap.

Quite often you will be diagnosed as having CFS by your GP or a referral to a general rheumatologist or a psychiatrist.

On the basis of the acceptable ignorance afforded to a GP or a general specialist by the invention of “MUPS”, you will not get offered any access to high level specialist opinion because all of those avenues of “super-specialist” expert opinion together with the access a patient would then get to complex tests and investigations – these avenues have now been shut off.

"MUPS" has in fact `dumbed down` the wider medical profession.

With regards to the dearth of research covering the totally un-researched “invisible” end of Behçet’s syndrome and a possible association with what liaison psychiatry refer to as Chronic Fatigue Syndrome and the more severe condition we know as Myalgic Encephalomyelitis.

Having seen what has been going on for the last 15 years, it is my strong view that it is not for the professions of rheumatology, immunology, neurology, gastroenterology or ophthalmology to spontaneously step in and undertake research to prove or disprove an association between pre-existing auto-immune diseases and Chronic Fatigue Syndrome or Myalgic Encephalomyelitis.

The fact is that liaison psychiatry – over a period of 30+ years - has bet their whole farm – built their whole careers and feathered their domestic nests on the basis of their shared peer reviewed beliefs fuelled by millions of pounds of research funding to establish a stranglehold on their claims that “medically unexplained physical symptoms” are perpetuated by the faulty illness beliefs of the patient that these medical professionals claim are treatable or indeed curable with CBT and Graded Exercise.

The fact is that for these psychiatrists; their whole reason for being is based on pinning a psychiatric label on their chosen set of “invisible” symptoms that they believe to be a “somatic distress disorder.”

If someone comes along and respectfully points out that this group of “medically unexplained physical symptoms” called "CFS/ME" is in fact awfully similar if not identical to the equally “invisible” set of fully explainable physical symptoms of a pre-existing auto-immune disease; it is my view that it is the responsibility of liaison psychiatry to prove that there is no association or that this is all just an incredibly remarkable coincidence.

Liaison Psychiatry should be made to pay others to independently verify that Liaison Psychiatry was wrong.

In recent history going back over the last 15 years, liaison psychiatry has employed their methods of choice to ensure the squashing of any associations with existing biomedical pathology.

Liaison psychiatry “phones a friend” in the respective clinical speciality so that between these collaborative partners they can carry out some jointly funded “research” that you just know will ultimately find no association between somatic beliefs and biomedical pathology X.

It is my view that any research needs to be free from any influence and the clear conflicts of interests held by liaison psychiatry.

We need that research to be independent from all social or professional associations between liaison psychiatrists and whoever carries out any future studies.

Behçet’s syndrome was defined in 1937.

I’m not sure how accurate the history of the disease is on Wikipedia but you can read more about it here…'s_disease

If liaison psychiatry – over the last 76 years - couldn’t be bothered to know about the full range of presentation of Behçet’s syndrome given the fact that Behçet’ syndrome can have secondary psychiatric expressions, then frankly there needs to be a full public inquiry here in the UK and elsewhere around the world to find out why these psychiatrists have totally failed to diligently and rigorously excluded all other possible explanations for their constellation of “invisible” symptoms that are also expressed by pre-existing biomedical pathology BEFORE pinning their mental health label on a group of sick and disabled patients.

Needless to say that going forward; should liaison psychiatry be proved fundamentally wrong in peddling a false truth that CFS is a somatised functional psychiatric disorder; hundreds of thousands of patients around the world will suddenly realise that they have been subjected to false claims and that they have also been subjected to clinical abuse from a substantial mass misdiagnosis of global proportions.

This is why liaison psychiatry has a considerable conflict of interests in finding any associations that would destroy them and cancel out liaison psychiatry having any further primary care involvement in whatever CFS/ME is reclassified to further down the line.

I have experienced what it has been like to suffer casual abuse from members of the medical profession who looked at my notes and my previous diagnosis of Post Viral Chronic Fatigue Syndrome and then dismissed any of my symptoms or my thoughts about my symptoms and then ascribed them to my presumed faulty illness beliefs in a written report without telling me so to my face.

Over the years I have come to recognise and describe what I have been faced with as “the MUPS effect.”

Globally I have no doubt that many patients have lost their lives because of the MUPS effect in one way or another.

There are many hundreds of thousands of patients out there in the real world who are (in my view) justifiably very angry at being told that they have mental health problems perpetuating their ongoing ill health by a small section of single minded liaison psychiatrists who have never met the vast majority of the sick and disabled individuals they profess to understand and care about.

If I were in the shoes of a liaison psychiatrist having read this essay; I’d be feeling more than a little unsettled.

As ever, it isn’t for me to prove myself or what I have claimed here.

As things stand, there has been no research and nobody can say I am wrong.

It is however for liaison psychiatry to prove me wrong by commissioning high quality independent research free from association and by "super-specialists" who deal with rare auto-immune diseases.

That research should not be peer reviewed by psychiatry because psychiatry has no specialist understanding of complex auto-immune diseases.

Such research should be independently peer reviewed by the rest of the medical profession who work with such biomedical diseases.


Stephen Ralph DCR(D) Retired.

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