. I wish you all the luck in the world. If I could ask a question: Has you GP or consultant changed your diagnosis from ME/CFS to XMRV positive?
Thank you, unfortunately though I'm not Irish so the lucky may amount to selecting pub crinkle cut chips rather than McCain oven baked.
To answer your question, no my GP has no changed my diagnosis or has any interest in the result.
Although this is annoying, in their defence although a GP is a qualified doctor, they are also a 'manager' and they need to be told how to 'manage'.
If some people with the diagnosis of ME or CFS have XMRV, then our GP's have no idea what to do without be told what to do, because it's socialised
health care and not private. Every decision, every 'referal' needs to be justified and allowed.
Is someone who is told the 'best evidence' for treatment being psychological rehabiliation and exercise - going to be allowed to be refered to an immunologist?
Morally yes - but structurally, no. The immunologist will simply say to the GP. What am I to do?
According to the NHS, XMRV doesn't exist in the UK and this 'evidence' was given to them by IC and Simon Wessely who is a
CFS expert. Apparently.
So unless we're going to wait another 2 years to be 'official' we need 'evidence' XMRV is damaging our bodies.
I am hoping Dr Mikovits will enlighten us on Friday (tommorow) in her talk.
If I was able financially, now I would be planning further tests:
Natural Killer Cell Enumeration Panel
T-Cell
B-Cell Count
Oxidate Stress Assays
Inflammatory Cytokines/Chemokines
These can be obtained through spending lots of money (NHS won't offer them)
at VIPDX in America and Or RedLabs in Belgium, in Europe.
So to recap, without interest from the NHS in the UK - we'll have to play doctor (as usual)
and 'show' our doctors what XMRV can do. Or indeed what 'CFS' can do.
Only then will they take an interest, and only then can our state doctors 'get away' and
not be ticked off, or blocked, in refering us to an immune clinic.
The whole point of all this after thousands of pounds of more testing, would be to achieve the
holy grail of ME or CFS.
To have Infectious Disease, and/or Immune Disease/Immune Impairment written in our medical file.
Then we are socially equal, and then we are freed from past theories on hysteria and fatigue.
We need more science FACT and less THEORY!