An article I wrote...

[Herbiv4]

Hello there everyone,

For some years now I have been involved in campaigning - raising awareness for a condition called Myalgic Encephalomyelitis or (ME) that I discovered I never actually had.....

meactionuk.org.uk/Some-Inco...

Have just discovered that it presently ranks 7th on Google UK.

Not much to add here, the essay pretty well speaks for itself.

[Shalom-yall]

You have certainly had a traumatic experience. I know somewhat how you feel. I too have been going something similar for many, many years- being under diagnosed, not diagnosed at all, told I was making up the symptoms, ignored, etc., etc. All the while having all the classic, and many other symptoms of Behcet's. I have finally been diagnosed with Behcet's but I still don't feel my doctos take it very seriously. Thank you for continuing to research and speak out. I wish you well!

[lynnpru]

Thanks for this post Stephen, I feel very, very lucky to have been diagnosed so early on in it all (aged 26)... I think I was incredibly fortunate to have all Behcets symptoms land on me in one go (with a run up admittedly of several years). I was hospitalised and investigated very thoroughly and the specialists were baffled and had long conversations over what it could be. I hadn't even mentioned the fact I couldn't pee without experiencing real burning agony when a dr asked if I had genital ulcers etc - I had no idea that was the problem, so was great to have a dr so on the ball! But all that was in Spain. Now that I only have mild symptoms (am 38 now) I don't need to see a specialist regularly, but was horrified in Sept when a GP who had never, ever met me before just threw in to the conversation 'ah, I don't think you have Behcets, I think we'll refer you to the chronic fatigue clinic' - I was feeling so sick at the time - was clearly in middle of a mildish flare - I didn't say much, just took the referral. Referral took 6 months, so by the time I had it, was out of the flare and it was just plain embarrassing - but at least that consultant was able to say 'Erm, what you're describing is clearly Behcets, not CFS' - but what if I hadn't have had my original diagnosis?!?!? Now that I have it, I can work with it, so if I flare, I drop everything and do things that I know help - if I was being told to deal with it in the CFS way, I am guessing that would be damaging in all sorts of ways.... So yes, you're on to something here. The cross overs are clear and not very helpful and CFS does seem to be used as a generic 'Er, no idea what going on here' and I am guessing it will cover people with genuine psychological needs too.... I do hope that now you have a proper diagnosis your life is getting better - but what a long journey....

[Hidden]

A fascinating but sadly not wholly unfamiliar story Stephen, thanks for sharing it with us. Please keep us posted with any updates.

Thank goodness there are now some Psychiatrists in the UK who in conjunction with other Specialists recognise and understand the effect chronic long term disease can have on mental health and how mental health can consequently affect physical health.

A complicated circle that is difficult to unravel and as you clearly show in your paper, completely misunderstood and misdiagnosed in many cases.