A short sad history of ME/CFS

prettypeach_2

NEH wrote: »

It's not used to detect ME, mentioned in the post above (but i understand when you're not with it and it's like pea soup )


I have Fibromyalgia now instead of ME and i think it's just used a general indicator rather than a diagnosis tool....There is no test that is used to diagnose either condition really except for the tender point test in Fibro and ruling everything else out for ME...

As far as the NHS goes, no there is no diagnostic test for fibro or M.E.
Ah, read back thru the posts now, see that you've said it was an immune system test, or was it neuro-immune - oh god I've forgotten already, gah!
Anyway, it's a new one on me, I'l look into that.

MrsManda

I thought you may find this article on a virus which has been found in children with ME/CFS
BBC NEWS

DanE2010

http://www.dailymail.co.uk/health/article-1309839/Scientists-claim-ME-illness-NOT-mind.html

and another!

prettypeach_2

I'll get excited about this new finding when the rest of the medical profession takes it seriously.
I'm not holding my breath, they've rubbished the XMRV virus stuff now.

mardatha

A lot depends on WHO rubbished it and who's PAYING them! lol!

DanE2010

I finally had my follow up appointment yesterday with my ME specialist after a year and a half wait! Wasnt in the very long as he said ive made great progress managing my symptoms on my own, but he did say he could pescribe me this drug that is used to treat Herpes and Genital warts called Imunovir, he said it is something he has been trialling for ME patients as it is an anti viral and can help the immune system, anyone have any experience with this? he said sometimes it doesnt agree with people so wanted to leave it up to me as to whether I wanted to try it.

buffybot

Hi

I'm 24 and I have Chronic Fatigue Syndrome and Fibromyalgia following having horrible Glandular Fever. Just joined MSE and found this thread and thought I would pop in and say hi!

mardatha

I hope it goes away, buffy xxx

Mrs_P_Pincher

I was diagnosed with CFS last year by my GP and an endocrinologist. It didn't take much digging through my blood results to find that I was actually servely deficient in stored iron, Vitmain B12 and Vitamin D. The B12 and the D are under control now and my health is much improved. If the NHS can sort themselves out and give me the iron therapy I need as I cannot take oral supplements, I might well be fixed in teh foreseeable future.

I was not prepared to accept a diagnosis of an illness for which there is no test, no treatment, and infinitely variable symptoms. To me CFS, like FM is a bucket diagnosis. Fibromyalgia just means that your muscles hurt. It is a symptom not a disease and in most cases the cause of that symptom is not difficult to find.

Mrs P P

mardatha

I've had all these tests mrs PP, they all came back normal. If I had them then most people probably wil have as well. I've been tested for everything on earth, short of rabies However I take 2400iu of vit D a day and that makes a bit of a difference I think. Also a good multivit with iron, and vit C 1000mg.