NHS MCAS clinics?

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I was diagnosed with CFSME in 2014.

There is too much for me to type out and so I'll try to be concise and up to date.... a year ago when I went to a private menopause clinic, I was educated quite a bit about histamine sensitivity and MCAS. (I was always an allergy prone person... since childhood but it was never really bad enough to take antihistamines. And I've always been sensitive to all pills/potions etc, so I avoid as much as possible).
It was a very informative hour consultation and I discovered a lot about MCAS. I was told that topical oestrogen gel that I had been using for 14 years since hysterectomy 'may' have been a culprit for becoming ill and causing the CFS. Apparently oestrogen is very high in histamine and women can even react to their own oestrogen and progesterone causing issues. My particular symptoms that bother me the most are full body muscular skeletal pain and exhaustion. Also inflammation which comes and goes but is very noticeable for me because I'm usually slim. The doctor told me that the pain and inflammation were most certainly a reaction to histamine and whist as a menopause doctor she endorses oestrogen for women like me, if I have histamine MCAS issues, the oestrogen is making me ill.

Armed with that information, I slowly decreased my oestrogen dose. As I'm 62 now, I no longer need it for protection against osteoporosis etc, as I've been taking enough of it during the important years. When I had a week or so without it, the inflammation vanished as did the pain.

I went to my NHS GP who is really good and always gives her patients around 20m minutes. But she is stretched and only part time. I saw her last week and luckily she was aware of MCAS (many GP's are not). She has made a referral for me and I have been given two options.... Heartlands Allergy clinic at Birmingham Hospital, and Oxford Radcliffe Allergy clinic. I could only choose one and I decided on Birmingham. But I'm really not sure if they cover auto immune conditions like MCAS. It also looks as if I may have a 6 month wait, too. I've been ill for so long now and I get very depressed from time to time.. clinical depression, not the blues. And so when I have that and feel I'm wading through wet cement, it's hard to do much at all.

I wondered if anyone had been to the Birmingham Clinic. I keep feeling that the best NHS clinics would be in London but I'm hoping I'm wrong.

And there... I've written more than I had wanted to. It's getting on for 3am here and insomnia abounds.

I did look at Dr Alexandra Croom but I simply cannot afford any private consultations now. Not working has made it very difficult for me.

Oh and I have pretty bad brain fog currently, just to make things really interesting. When I get brain fog I find it difficult to articulate, so I hope this is all clear.

Looking forward to some positive experiences re NHS clinics.
 

BrightCandle

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I wondered if anyone had been to the Birmingham Clinic. I keep feeling that the best NHS clinics would be in London but I'm hoping I'm wrong.
The Royal Colleges for Psychology that push all the Psychology nonsense around ME/CFS are partly London based. So while London does have some of the best treatment for certain conditions, the support around these Somaticised conditions is actively harmful. So oddly on ME/CFS/MCAS/EDS/Fibro/Long Covid you are usually better off going outside of London, the clinics are better informed as they haven't been captured by Chalder et el of the Psychology cabal. I wouldn't go to any of the South London hospitals (Queen Elizabeth is just a failure one of the worst in the country, Kings has Chalder, Guys and St Thomas are also failing and psychology driven).

I don't know which of those two choices is likely better, since the wait is long I suggest looking up the departments and who runs them, what their speciality is and any research papers they have put out. Maybe find their twitter and see what if anything they are saying about ME/CFS/Long Covid and maybe MCAS. Do a bit of digging and if you can't find anything problematic with your choice stick with it, otherwise if you find a reason to change then go back to your GP and change it.
 
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Confused... I did not mention Psychology. I'm talking about immunology due to mast cell activation syndrome.

And, the reason I am asking on here is due to being so ill and running out of my own resources. All you have to say is you don't know, but forgive me, don't make assumptions when you do not know people.

I'm simply asking someone if they know the two clinics I mention which are Allergy/immunology.