Interest from a member of the House of Lords for my misdiagnosis project

Hello there,

I've been frazzeled for a while so I've not felt up to posting.

My misdiagnosis project is progressing slowly but it is progressing.

I now have support from a member of the House of Lords but for now I need to keep their identity anonymous.

I compiled a list of misdiagnosis statements - some made on this website.

I sent them as a letter to my House of Lords contact and I will let people know whenever there is progress.

I have also written to my MP about this and again I sent her the list of statements.

I made sure that each statement was made anonymous but each statement made a powerful point covering my overarching concerns about patients being at risk of being clinically misdiagnosed due to the existence of the diagnosis of Chronic Fatigue Syndrome.

I don't think it's any coincidence that Chronic Fatigue Syndrome came into being 25 years ago and that some of the cases of misdiagnosis outlined here are 20 or more years long.

Doctors from GP level upwards can diagnose anyone with CFS yet the majority of those doctors are not qualified to recognise rare complex diseases.

Ehlers Danlos Syndrome and Familial Mediterranean Fever are now added to the list of conditions along with Behçet's disease - all being smothered by the use of the CFS diagnosis.

When I hear back from my MP I'll post another update.

In the meantime if anyone knows other places where I can ask the same question about people who have suffered misdiagnosis before being diagnosed with Behçet's disease or other rare diseases then please do let me know.

I ought to join Facebook but I simply don't have the strength at the moment.

Once again, many thanks for the support I have had from this community here :o)



11 Replies

  • HI stephen

    I was Misdiagnosed over the past 2 years, everything from been given anti depressants as i was told i am stressed (possibly the most unstressed person in lincolnshire) to been told catergorically that i definitely dont have BD and then a different consultant on the same dept 2months later telling me i do have it.

    I'm not the claiming type and never would. but they need to raise awareness

  • Hi Mark, I know all about the NHS in Lincolnshire. I lived in Horncastle and then Louth but after my Dad passed away we moved to Scotland.

    Mum, Dad and I along with my brother moved to Lincolnshire because of me and my ill health. We bought a bigger house in Wainfleet near to Skegness so that I could have a ground floor bedroom/office and bathroom.

    Mum and I now live in South Ayrshire. Mum now has serious osteoarthritis so she needs a carer - so do I and so we now muddle along....

    However, between 2010 and 2011 we spent 18 months down in Lincoln fighting for my younger brother to get the help he needed from the appalling mental health service in Lincolnshire.

    My brother has Asperger Syndrome and other problems and even though he is in an assisted living placement, we are still fighting for him to get access to the clinical help he needs.

    One GP I saw down in Lincoln told me that the NHS in Lincolnshire was 2nd rate and that in future if we were considering moving back to the county for the sake of my brother - we should seriously consider moving to another county with a better NHS.

    I know exactly what she means.

    I used to be the most un-stressed laid back person I knew but after all I have been through I cannot handle stress at all now. I just get instant flairs of my Behçet's symptoms and then I get housebound for a day or two until things settle again.

    I can tell when things get bad because I get skin lesions appearing on my legs - I usually only get them on my chest and back.

    Today I have had a "wobbly" day.... have felt shaky and I've had a visible tremour.

    I was trying to cook a burger earlier and it ended up on the floor again as it did two days ago.

    Anyway - cheers for your reply.

    If you want to add a statement to my archive then by all means message me privately if you don't want to put details here.

    All I need to know is a) what the misdiagnosis or misdiagnoses were and b) how long did they last for?

    I know you've said two years but if you could let me know what the exact misdiagnoses were that will give me a better quality of technical evidence for my project.



  • I will type it all out tomorrow tramadols getting me all drowsy :)

  • Hi there

    I was wondering how you were as we hadn't heard from you...good to see you are still at it and have got someone to listen

  • Hi Andrea - I've been in a bit of a panic of late due to a letter from ATOS Healthcare. Because my GP had not realised that people with Behçet's need to be under the care of a specialist and because her colleague had tried to block me getting any referrals when I had been diagnosed as having CFS - I have not seen my specialist for 2 years. I have now been scrambling to get specialist medical information to satisfy ATOS Healthcare that I am not able to take up a job. I have an appointment at the hospital on the 8th August and today my consultant sent me my last medical report and a helpful covering letter. The stress from all this has not helped at all.

    On Monday I had to go to the practice to have a chat with the practice manager but that went OK. I don't think I'll have any more problems with my GP.

    It is quite scary though - knowing just how little the GP knows about Behçet's. I had to explain to her that a specialist was able to prescribe medications that a GP is not able to prescribe.

    I am now writing another letter to ATOS that I'll have to send recorded delivery so that means a drive down to the post office later this afternoon.

    My cogs turn very slowly and sometimes - well more than sometimes - I just get overloaded and end up doing nothing....

    Must get back to my letter..... somehow I don't think they give ATOS about how ill I am.



  • Yes it is not easy being ill and having a rare condition is it. I am awaiting ATOS's decision at the moment as mine is being transferred from Incapacity to ESA, but the centre mine was sent to has a massive backlog and so 2-3 weeks has no turned into "could take several weeks for a decision".

    Good luck and hope it all turns out o.k

  • Reading this makes me appreciate just how lucky we were. My relative was was given a suspected diagnosis on their second admission to hospital with viral meningitis having been well all their life. We live in a small town and it would appear we are lucky in that our GP has another patient with BD. We were worried initially as there are no centres of excellence in Scotland but the attention to detail regarding the care received has been fabulous.

  • My breakthrough happened because my GP had a friend who had Behçet's and my GP told me that his friend could only walk a mile before getting too exhausted.

    In reply I told my GP that I could manage less than 100 yards before feeling the same.

    It really is a total lottery at GP level and even general specialist level.

    The three centres of excellence in England are a fantastic development however GP's and specialists who do not hold the knowledge to spot cases of rare diseases are still enabled to give out a medical misdiagnosis because the diagnosis of Chronic Fatigue Syndrome is so easy to make - it was designed to be that way to catch as many "fatigued" people as possible.

    For example, some years ago the population of people said to have "CFS/ME" was around 250,000 yet not long ago there was an article in the Sunday papers claiming - using doctors estimates - that the "CFS/ME" population is now north of 500,000.

    Doctors have been routinely misdiagnosing for 25 years since CFS came into use.

    So it looks very much like Behçet's and other diseases have been under diagnosed for decades.

    No statistics exist either and no investigation has ever taken place.

    One other fact that makes me shudder is that research into Behçet's has traditionally only involved patients who display all the hallmark symptoms at the far end of the visible scale.

    This means that the rest of medicine who read the few research papers there are out there only get a blinkered view of the whole Behçet's population.

    The majority who do not fit the research criteria and not subject to studies and the patients at the other end of the diagnostic scale seem to have an incredible overlap of "invisible" symptoms shared by people who suffer severe Myalgic Encephalomyelitis (ME).

    And low and behold, the people who have severe ME have never been involved in substantive contemporary research either so there is a massive grey area out there currently being exploited by a tiny faction of psychiatry who have made their careers cornering medically unexplained physical symptoms and somatisation.

    The BSS told me years back that CFS was probably the most common misdiagnosis for cases of Behçet's amongst the membership.

    I'm now finding cases of EDS and FMF as well as other conditions including MS, Coeliac disease all being misdiagnosed as Chronic Fatigue Syndrome.

    With that in mind I asked the head psychiatrist Professor Sir Simon Wessely earlier this year in an e.mail exchange about how many patients he had seen pass through his clinics initially diagnosed with CFS who then went on to get a Behçet's diagnosis?

    Professor Wessely has been in the CFS/ME business for 25 years and he popularised CFS as a diagnosis in the UK during the late 1980's.

    Professor Wessely told me that he could not say if he had ever seen a case of Behçet's pass through his CFS clinic.

    As Behçet's can have a psychiatric component due to neurological involvement you might have thought that Behçet's might have been on his radar seeing as the invisible symptom set is so similar and he is after all a psychiatrist!

    I discovered that the truth was... he hadn't ever investigated Behçet's in relation to CFS or ME even though he and his colleagues have churned out peer reviewed studies by the shed load.

    Until the differential diagnosis situation is sorted out at GP level and general specialist level, patients are still going to face a real risk of being misdiagnosed and shunted into a cul-de-sac where only Cognitive Behavioural Therapy and Graded Exercise are promoted as "clinically effective" treatments alongside Pacing Therapy whatever that is.....?

    I'll put my soapbox away now and go and lie down for a while.......


  • Hi Stephen - if you are looking for cases of misdiagnosis then I fall into that bracket. I have suffered from symptoms since my early teens, had three miscarriages, was evaluated for MS in the mid 80's as I was told I had either MS or a tumour on my spine. I then got Mal de Debarquement Syndrome. Then came Hashimotos. By that time I had also got Hemicrania Continua and was given a stimulator. Then came the Fibromyalgia CFS/ME dx before I had a PE but still no one joined up the dots. Finally two years ago I had a Stroke just two months after seeing a Neurologist and begging him to find out what was wrong with me. He put it down to "probably the FM and may be one of my medications"!

    By that time I had had enough, being told it was just one of those things didn't cut it with me so I did my own research and came up with Antiphospholipid Syndrome. I was told "we tested you for that but you don't have it"! So I asked for a second opinion from Prof Hughes the man who actually discovered the disease and he diagnosed both Hughes and Sjogrens Syndrome as I am what's known as seronegative Hughes.

    After a really bad flare a few months ago when everyone suddenly started to use the word "Lupus", I happen to have a appointment with my Endocrinologist which I crawled to, he asked loads of questions and told me he thought I had Behcets. Now I'm waiting for a referral to the London Centre to see if that's the case. I've read that around 40 something % of people with Behcets have Antiphospholipid antibodies which is interesting.

    So it's only taken me 40 years to get one dx and possible could be another!

  • Hello there star13,

    That single word - seronegative is one of the most important words in my investigations.

    Doctors so easily claim that there is nothing wrong with a patient if the usual blood tests come back negative.

    At that point more complicated explanations should be considered but in too many cases that isn't happening.

    Chronic Fatigue Syndrome and Fibromyalgia are just so easy to hand out.

    Two diagnostic crutches from doctors who don't know enough.

    Can I add your experience to my list?



  • I have just written you a reply, hit the button and got a 404 error.... So now I've got to try and remember what I said!

    Of course you can use my experience and if you want a shed load more I suggest you pop over to the Hughes Syndrome Forum here on HU because there are many others there like me or have been discharged from Hospitals due to cut backs, sent back to GP's with no knowledge or sent to local Rheumys who have run tests and decided that as they are seronegative they not only don't have the disease anymore but they stop their treatment with catastrophic results!

    I used to be a Director of a national FM charity and have worked with FM/CFS patients running support groups for many years. It has become obvious to me that in many cases they are misdiagnosed and that in most cases there is an underlying condition or two which is at least treatable and perhaps more important more respectable so that these patients are not labeled and would then also mean that the "FM" symptoms all but disappear or are at least very manageable.

    Unfortunately while it is the culture to diagnose in a ten minute, tick box paper pain evaluation exercise which has replaced the old diagnostic criteria of tender points etc, too many people will get chucked in this bucket due to cost and convenience, however in the long run it will cost the NHS so much more.

    So I will now get off my soap box too but correct diagnosis is something that I too am passionate about. Good Luck with this project and well done for doing it.

You may also like...