Stunning Story: ME/CFS, EDS and POTS Patient Visits UK "Fatigue Clinic"

Cort

Founder of Health Rising and Phoenix Rising
Staff member
A superb blog and portrayal of a person with ME/CFS, EDS and POTS visit to a federally funded UK clinic. The doctor was very nice and lots of blood tests were taken and, in fact, the blood tests indicated he/she had Epstein-Barr virus reactivation but none of that mattered - the UK apparently provides two types of treatment - you can guess what they were.

While we were on hold, to the tune of Beethoven, we started going through the first of several pages of questions. They ranged from the usual medical history, to my specific experiences of fatigue, whether I was able to work or not, whether I was able to do certain things etc.
One thing that stood out was how early on she asked about any trauma in my life. It’s a continuing . I know that some people believe that the root of a lot of these issues can be trauma. But honestly, apart from how my health has affected me over the years, I’ve had a really stable life. There has been no trauma and nothing that would “trigger” any illness.
And OF COURSE keeping as active as possible is super important and OF COURSE deconditioning is bad and trying to keep doing things you love and staying in bed all day is bad. I don’t think anyone is denying that. I think one of the problems is there is a valid point in saying that a lot of people are too scared to try and do anything. But there comes a point where things just don’t work or you’re just not well enough to do them. And it’s not about being negative or giving up or believing that things don’t work. I’ve been hardcore into lifestyle changes and management for two years now, and dealing with chronic illness for nearly two decades
 

Tina

Well-Known Member
Infuriating! I could have written her blog myself. Until we can get a biomarker I don't know how we will ever be taken seriously. You (Cort) have written about doctors and studies that lead me to believe we are headed in the right direction. I choose to focus on the positive stories, but I feel for this girl. Sometimes I feel all we have is solidarity and prayers. Today is one of those times.
 

Tammy7

Well-Known Member
The doctor was very nice and lots of blood tests were taken and, in fact, the blood tests indicated he/she had Epstein-Barr virus reactivation but none of that mattered
The Dr. had the frappin eight ball right in front of him.......Epstein-Barr virus. This virus has been grossly neglected and overlooked in its relation to CFS................Dr. Lerner had it right.
 
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Snookum96

Active Member
Why am I not surprised? I thought we had it bad in Canada but every time I turn around there's a new story in the UK. I feel for everyone trying to get help there.
 

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