Writing to the ME Association

[Herbiv4]

Hello there everyone, I thought I'd give an update about my misdiagnosis project. Since I discovered that I have a pituitary disorder in addition to my Behçet’s I have been in touch with a lady called Jill Mizen.

Jill recently got a really good article published in the Daily Mail about the misdiagnosis of Chronic Fatigue Syndrome and ME when the actual cause was a pituitary disorder.

The article can be read here.... dailym.ai/1oViUDY

I now plan to work with Jill on our shared misdiagnosis project that will cover both pituitary disorders and other diseases such as Behçet’s, Ehlers Danlos, Familial Mediterranean Fever and other serious illnesses.

Back in 2008/9 when I got my diagnosis of Behçet’s, I got in touch with the ME Association and told them about my misdiagnosis.

I hoped that they would feature it in their magazine and they did here.... bit.ly/1jkxi9Z

As you can see from this single column piece from 2009, the writer totally omits to mention anything about Behçet’s disease.

The ME Association (MEA) have what they call "The Purple Booklet" that gets updated each year.

The idea of this booklet is to provide a source of information and advice that a patient can give to their GP or Specialist.

There is a section in this booklet that covers misdiagnosis.

I have repeatedly asked Dr Charles Shepherd - medical adviser to the MEA why Behçet’s disease is not included - I have sent him a copy of my latest misdiagnosis Statements that include statements from members here but Dr Shepherd will not budge and I do not know why?

We know here that many of us were misdiagnosed with CFS or ME prior to being correctly diagnosed with Behçet’s disease.

I was told by a senior member of the Behçet’s Syndrome Society (BSS) back in 2004 and in the years afterwards that CFS and ME are the most common misdiagnoses amongst the BSS membership.

So, I am now asking why the ME Association is now blocking mention of Behçet’s disease to their members?

I wondered if we could write to the ME Association... well I could put a letter together.

If the letter were signed by former CFS/ME patients requesting that the MEA raises awareness it might just push the MEA in the right direction to do the right thing.

Anyway, I'd be really grateful for your thoughts.

Many thanks,

Stephen.

[billi]

Hi Stephen, count me in!!!! Anything that could bring help and hope the BD or other sufferers is definitely worth a try. Do let me know if you need more info. If you remember I responded to you re misdiagnosis.

I wait to hear more from you.

Hugs

Billi

[andreafm]

Hi Stephen...great to see you are still pushing hard.

I had some experience with Dr Shepherd myself many many years ago when having problems with my employers as they wouldn't accommodate my return to work under the Disability Discrimination Act. I was at that time diagnosed with ME [CFS] and my Employers got a Psychiatrist to write a report to say that my condition did not exist.

I was forced to take my Employers to a tribunal and asked Dr Shepherd to assist me with information because at that time CFS was rare and there was very little information about.

He had assisted a couple of other people with Tribunals but refused to assist me and just sent me a signed copy of his book [which I already had]. However, I went on to win my case against my Employers but the battle with them which stemmed over 3 years, ended with my being retired due to ill health.

It wasn't until after my retirement that I was diagnosed with Behect's and by then very disabled, possibly [in my opinion] due to that misdiagnosis and lack of treatment in the beginning.

Without being too personal about him, he was quite a firm man then and so I wish you good luck with this.

[Hidden]

The Society are aware of misdiagnosis - would it be worth speaking to someone there? With their weight behind you, you may be more likely to get somewhere. I don't think they mention ME in their list of similar disorders but think I've read it somewhere on the site in the past.

behcets.org.uk/information-...

[andreafm in reply to Hidden]

I think that is a good idea Tigerfeet....and Stephen has possibly got a good idea of how many of us here were originally misdiagnosed with CFS/ME.

This wouldn't be a finite list but may give a good indication [If it is a high number] and the Behcets Society may add this to their list of similar disorders.

The main difference I would think would be CFS/ME diagnosis doesn't have ulcers as a main particular symptom. But if there is enough people with Behcets having been misdiagnosed with CFS/ME it is a reasonable request...I think.

[Herbiv4 in reply to Hidden]

Hello there Tigerfeet, I did try contacting the BSS some years ago about this issue but I never got a reply.

I do sometimes wonder if this failure to mention CFS on the BSS website along with not mentioning Behçet's on CFS/ME websites is in some way intentional.

For aine years now, the NHS has been driven by financial constraint.

The last thing the NHS needs is 100's of patients being re-diagnosed from CFS/ME to Behçet's who all require expensive treatment and active specialist care....

I had to fight my way through 8 clinical referrals down in NHS England.

It was only when I got to NHS Scotland that the attitude changed.

Incidentally, at one point I was told by a neurologist Behçet's specialist at a big teaching hospital in London that it is possible to have Behçet's without any ulcers being present. I was also told this by a former senior member of the Behçet's Syndrome Society.

So if the patient presents with few or no typical visible signs of BD yet has many of the symptoms.... Where does a diagnosis of CFS/ME end and where does a diagnosis of BD begin?

When you look at the criteria on the BSS website - at one end of the scale you can tell that there us a "grey" area that the medical profession and the charities do not seem to want to talk about or advertise.....

The more I look into these matters, the more fascinating it all becomes.

[andreafm in reply to Herbiv4]

Ulcers are not my biggest symptom either but bearing in mind that cfs and behcets both have no clear test yo diagnose, this must make it doubly difficult to diagnose one way or the other.

The consultant I saw that diagnosed behcets took my childhood history into consideration and tested for other possible conditions that have a test.

I agree cfs is maybe used as s diagnosis too quickly, rather than waiting and drawing up a history.

In the past it took years for a lot of us to get ddisgnosed. Unfortunately while there isn't a test for behcets, this leaves consultants having to wait until they are sure it is behcets. This is the problem for all conditions that cannot be tested for.....they are all prone to misdiagnosing.

[Herbiv4 in reply to andreafm]

Hello there Andrea, indeed this is a problem.... no test so no easy way to say one way or another.

During my four year battle I found myself sitting in the consulting rooms of some of the top Behçet's specialists around and I got all their names from the BSS.

Several times I sat there being told by these specialists that it was impossible to have Behçet's unless I had clusters of mouth or genital ulcers but as I had neither then CFS was the right diagnosis.

In return I found myself looking these specialists in the eyes and saying that from my investigations and with the help of the BSS, it was possible to have Behçet's with only a very few ulcers or even none at all.

And I showed them digital photographs I had been told to collect yet these were ignored.

I was able to tell them that I got recurrent epididymitis that was first noted by my GP when I got ill in 1996 but this was ignored as well.

Georgina could not understand why I was being told the things I was being told by a series of doctors who should have been aware of the finer details.

One dermatologist I saw said that my skin lesions must have been caused by obsessive scratching yet minutes before, his registrar (who gave me the full diagnostic assessment) had told me that I did fulfill the criteria for a BD diagnosis.

The consultant dermatologist had a look of thunder in his face and stormed out of the room. The registrar then apologised to me and told me not to give up.

I did not give up but I think the majority of patients who don't have the sort of knowledge I have gained from my professional education and from talking to the BSS - would have given up after the 2nd or 3rd refusal.

I am sure that there is something going on and like a journalist I am going to keep on digging and digging......

[Hidden]

Fascinating indeed – there are so very many conditions with similar/cross over symptoms. I don’t suppose any site could list all of them or perhaps even be aware of them.

I’d find it hard to believe if the BSS society intentionally left off CFS/ME, they’ve no more to lose or gain from an omission than they have with listing those illnesses that they do currently cite.

Do you remember the name of the person who told you CFS and ME are the most common misdiagnoses amongst the BSS membership? Perhaps that person is still around and contactable.

If not, as it’s been a few years and knowledge and attitudes have moved on, perhaps it’s worth trying again – I chased NHS choices for a while for not mentioning the chronic fatigue you can get with BD, referring them to the Society for information and eventually they included it on their site.

[Herbiv4 in reply to Hidden]

I had a great deal of help from Georgina Seaman. Her husband Barry has Behçet's.

Georgina gave me a great deal of useful information, study papers etc and really it was Georgina who kept me fighting my corner.

However, Georgina retired from the BSS some years ago now.

[Hidden]

Ah, what an amazing woman - she was the first person I spoke to via the helpline when BD was first suggested as a possibility. We talked for hours and she gave me so much advice and support I don't know which direction my BD journey would have taken without her. I had the privilege of meeting her a few years later and I made a very small contribution to some of the leaflets she put together.

Anyway- I digress!

Hopefully there are others who would be interested to hear from you about this and would be willing to help.

x

Tig

[Herbiv4 in reply to Hidden]

Thank you :o) I;ll start putting the letter together and then I'll collect some signatures.

Best to write to the BSS and the MEA at the same time and see what happens next.

Time for my bed now....

S.

[Herbiv4]

Couldn't agree with you more Tigerfeet. I don't think I would have won my battle without her knowledge and support

[mummajo]

Hi pretty new to the site rheumy thinks iv got behcet s waiting to see eye man. I'm having trouble at work OH said he thinks iv got m.e ?? there for fit for work ( can't work due to infected lesion on foot can't walk now ) lots of headaches, ulcers Ithink there going to sack me ? I'm struggling with everything ? Didn't realise it was a common misdiagnosis, do you have any advise also what do behcets lesions look like ?? Iv searched the web ??

[Herbiv4 in reply to mummajo]

My best advice would be to visit your GP and request a referral to one of the centres of excellence for Behçet's disease and tell them your suspicions.

The criteria for diagnosis on the BSS website are worth printing off.

Also it is worth knowing that most doctors are trained to recognise only the most glaringly obvious cases of Behçet's at one end of the spectrum.

I'm interested in the other end of the spectrum where the "grey" area exists.

For your headaches I'd ask to try Pizotifen taken at night.

For your mouth ulcers Colchicine is worth trying.

In my own case the Colchicine stopped the ulcers totally and the Pizotifen started to dampen down the headaches within a couple of weeks.

I also took Celebrex - prescribed by ny GP who by some miracle had a personal friend who had Behçet's.

I started Sulfasalazine last September and this was the first drug to take me off the boil.

Sulfasalazine can only be prescribed by a consultant and blood tests are needed.

Once on the Sulfasalazine, my skin lesions started fading but have not totally gone.

The other advice I'd give is - dig your heels in and prepare to fight your corner.

I applied for medical retirement but was refused in the grounds that I'd got a CFS diagnosis.

However, if you are in the process of challenging your ME diagnosis they should wait until that challenge is complete.

If you have been misdiagnosed then they can't refuse you in the grounds of a misdiagnosis!

I'd also seek advice from the Citizens Advice Bureau because you do have rights....

In my own case, I'd been in hospital as a child and in my notes was a reference to a possible diagnosis of ankylosing spondylitis.

Only because of this past medical history did I succeed in getting medical retirement.

40 years on and I have only just discovered that when I was a child, my rheumatologist Dr Barbara Ansell was wrong not once but twice over.

Had I had a simple blood test when they discovered I had osteoporosis that blood test would have revealed the cause which was a pituitary disorder.

I could have been put onto HRT and I would have grown into adulthood normally.

But I never had that blood test until last September.

Dr Ansell got a CBE before she died but parents called here "the child snatcher" because she kept children in hospital for years in some cases.

I guess we all live and learn.....

Good Luck....

[Hidden]

Does OH stand for occupational health?

[Herbiv4 in reply to Hidden]

Yep as far as I can remember from when I was struggling to stay at work. Our OT wasn't much good but then I've not heard of many good OH departments....

[mummajo in reply to Hidden]

Yes, I was in there 2 mins told him my symtons and he told me he thought I had m e, when I told my rheumy he laught ? I have positive Hal b51 horrendous lesions that sometimes get infected, ulcers, headaches, bad light sensativaty, joint pain and so on so on. Fed up with feeling ill .

[Hidden in reply to mummajo]

I asked what OH meant before replying to make sure I got it right. Some people use those letters for other things.

In my personal experience, OH don’t make diagnoses, they are there to evaluate what could help you to stay at work or whether they think you shouldn’t be at work for a while/part time/at all based on medical evidence and your presentation.

I believe they have to take into account any official paperwork, ie, test results, letter of confirmation from your Rhuemy, GP, anyone who is treating you.

Whether you have BD, ME or ABC, it can’t be denied that you are unwell so OH shouldn’t be in a position to make that kind of judgement. They would need to be able to back up their decision with facts. As far as I can tell from your post, you have facts and they don’t.

Also, again from personal experience so I can’t speak for your situation, I don’t believe you can be sacked for ill health, and if there was concern about your ability to do your job or genuine reason for your company to let you go, is there a policy in place whereby you would receive a verbal and written warning – ie a process to be followed so they can’t just sack you?

I agree with another poster that advice from the CAB would be useful and it maybe worth contacting the Society helpline.

Lesions come In all sorts of shapes and sizes, you can find some pics here but I don’t always recommend looking at things like this and they can be upsetting and not necessarily ever happen to you.

google.co.uk/search?q=behce...

[devonshiredumpling]

Just a thought guys - and one I have discussed privately with a very well-trusted friend around here. Do you think there is a reluctance for Behcet's to lose it's rarity value? It would mean a huge loss of funding in terms of the Centres of Excellence I would assume. I don't know about charitable status and other stuff. Just a thought. Anything over 1,000 and we are no longer rare - we are probably hovering around the 1,000 mark...

As I say, just a thought to play around with

D

[Herbiv4]

Hi DD,

Am in bed now so typing on the phone.

That is a really interesting aspect.... But it's also incredible to think that organisations might be stopping people from getting the right diagnosis and desperately needed treatment because of a statistical issue linked to funding and services.

I'd have to wonder what matters most?

[devonshiredumpling]

Well, you have as much experience of the 'caring' professions as I. Not a discussion for a phone pad though. Get some kip, we can discuss more tomorrow.

Nighty night

[Herbiv4 in reply to devonshiredumpling]

Hi DD,

Sleep is still a problem - cannot get comfortable in bed but the duvet on my legs is now tolerable thanks to the Sulfasalazine.

We will have to chat more tomorrow probably after I've been for a hair cut.

Night night from a very damp part of South Ayrshire.....

[devonshiredumpling]

I understand the sleep problem only too well. I'm still on around 6 hours a week and a danger to myself falling asleep standing up.

No matter how often and how easily I fall asleep during what I laughably (not laughingly you will note) call my waking hours, the moment I go to bed that ability escapes me. In fact the ability to sleep goes and hides round the corner all night long, poking its tongue out at me from time-to-time.

[andreafm in reply to devonshiredumpling]

Know the feeling only too well....horrible sleep deprivation, really quite awful to live with.

Interesting discussion though and it's sent me thinking.

It does make you wonder as a lot of money was given to the research of CFS/ME within the NHS, however un-useful the treatment programme is. It would be a bit shocking now to find out if most of the people diagnosed did not have CFS/ME and they just hadn't found the right diagnosis....just a thought. I have always thought CFS/ME is justifiable symptoms that just don't have a real name or diagnosis test to confirm.

All conditions that we know well and except today started out with no name. It has been down to Doctors and Research to find the pattern of symptoms - and preferably a test to confirm. Whoever called it Chronic Fatigue Syndrome in replacement for Yuppie Flu certainly did it a further injustice...in my opinion.

I attended the NHS's CFS/ME programme of light graded exercise and Cognitive Behavioural Therapy. Cannot say that attending a 30 minute Group Programme for 10 weeks was that helpful for someone who had been disabled for nearly 20 years. It was very noticeable that this was not appropriate for me and the reports from the psychiatrist said so.....none of which was taken on board at the time.

However, I was told that this was the only treatment for me and if I didn't attend them I would not be treated. This was said by the Consultant who insisted this was definitely the right diagnosis and there was nothing seriously wrong with me.

Because I objected to the diagnosis, I was seen as making trouble and it went on to be reported that I had a very serious mental health condition......fortunately it did not stick thanks to the neurologist I have now.

Not sure what I am getting to but it does need sorting out...I hope some of you persistence Stephen gets to help people not suffer like this.

[Herbiv4 in reply to andreafm]

A couple of weeks ago I had an e.mail from a trusted friend who usually contributes to my ME group.... here is what they said about the legal angle of misdiagnosis and how the onus is on the patient and how the doctor is protected......

"I spoke a while ago to a lawyer about misdiagnosis and it is clear that legally misdiagnosis would not be seen a medical negligence by the courts - they tend to take a view that the medical doctor is doing their best and that it was jolly bad luck the patient got the wrong label..... the emphasis appears to be on the patient to keep seeking out medical care until they are satisfied.... As long as the medics can be reasonably seen to be doing their job - i.e. everyone else is using the CFS diagnosis then it'll not be a negligence issue. That's one lawyers opinion and i suspect it is largely correct."

[Herbiv4 in reply to devonshiredumpling]

Well, I had to abandon the haircut as the barber was busy - nowhere to sit and I wasn't up to waiting around. So I'll have to go back during the week. On the sleeping front I rarely get 4 hours sleep per night so I guess I'm doing well in comparison. :o(

I always feel dreadful when I drag myself out of bed in the morning - in stages usually. It feels like I've been beaten up......

[AusBehcets]

I have a lot of thoughts on this but not prepared to write them here.

[Herbiv4 in reply to AusBehcets]

Apologies if I have offended anyone....

[andreafm in reply to Herbiv4]

The discussion was really interesting but getting a little personal for open air. I think that's why Tigerfeet suggested we continued with a new thread with the "community" button selected so the discussion remained within this group and not out freely on the web.

No problems with you personally Stephen...I don't think

[Hidden]

Perhaps you could send Stephen a private message, or a new thread could be started and made private for this community only, as this one is viewable by anyone, anywhere.

[AusBehcets in reply to Hidden]

Thanks Tigerfeet

[AusBehcets]

Thanks for this thread Herbiv4. I have sent you a private message.