RE: Seeing Dr Chaudhuri at Queen's Hospital Romford:
A small correction for people who think you can see Dr. Chaudhuri on the NHS for ME, sadly you cannot 'officially'.
BUT, the good news is you can, if you see him for a neurological referral. (Yes, the irony...). So that can be done via the NHS and your consultant (if you have one). A letter or phone call would do.
If you want to see Dr. Chaudhuri you have to bypass the CFS/ME block from Essex Trust, that's the only way to get your foot in the door and to stop the Fatigue experts grabbing you.
As an inpatient, I wouldn't go within miles of the place, but as an outpatient you're safe as long as you see Dr C, and not the others, who are delluded and believe they can alter your disease with CBT.
Simon posted this research update from America. The difference is about 30 years in knowledge base, compared to the NHS: Link below....
http://forums.phoenixrising.me/index.php?threads/stanford-2015-spring-newsletter.38011/#post-606085
At the end of the day, without pathogen discovery, we're all screwed.
The compromise will be to make subsets of CFS 'autoimmune'. This is slowly happening.
Maybe in 5 years, the system of 'managing' ME (via CFS) will be a bit less corrupt. So there is some hope.
Edit: Mark's good mention of Julia Newton in Newcastle (At the RVI Hospital).
This is 'OK' to ask for a referral
if you have POTS or think you might have and need a proper 'TILT Test'.
That doesn't need to be negative sounding, Dr Newton think at least 1 in 4 people with ME or CFS have POTS. I'd argue if you have severe ME, then by the nature of that, you're bound to have Orthostatic Intolerance and thus probably have a tachycardia or BP abnormality on TILT. Even if you 'just' get a diagnosis of VasoVagal Syncope or Postural Hypotension (or Hypertension), that's better than nothing in the current climate of universal head scratching and passing the buck.
She doesn't see ME patients for what the NHS call 'ME' though. Important to remember if travelling all the way there thinking she is an 'ME doctor', at an 'ME' clinic.
As everyone knows, there is no ME clinic in the UK. Not one.
Dr Newton isn't an ME doctor, or researcher. She's a Fatigue researcher, and knows about autonomic dysfunction relating to Fatigue, primarily. Ergo, other than going to the Royal Free (London) or Dr Bansal (London outskirts) you won't find an ME doctor on the NHS who deals with the immune system - what 'controls' ME patients, via it's link to the CNS.
Newcastle sees ME patients yes, but not at the Syncope Clinic (Dr Newton's domain). So unless you've got POTS, I doubt you'd get into a 'fainting' (syncope) clinic, or in POTS patients case, pre-syncope.
All new 'CFS' referrals' in Newcastle come by the immunolgy department (wait for it).....who'll test for conditions you don't have, tell you you have CFS, thus don't need to see an immunologist. (Long pause).....
So if you have undiagnosed POTS, I agree with Mark's suggestion of asking to see Dr Newton (NHS Choose and Book), or if you live down south go to see Chris Mathia's at St Mary's London (they have an autonomic unit), but don't tell him you have ME or he'll believe you have deconditioning POTS and you'll be back to square one, with CBT and psychiatry.
Another alternative is to go to the Breakspear and ask to see Dr Peter Julu. He has some fancy machines to measure autonomic function, and I believe, you might be able to see him in Harley Street, central London, as well.
http://breakspearmedical.com/about-us/our-people/
Also I see Dr Puri is on their books at the Breakspear. He's done multiple ME brain scan studies, is extremely intelligent and very empathic. What any of these people can 'do' for you, ultimately, is another matter. The research is simply not there to create a mainline drug therapy at the moment, and so treatments are lagging behind the level of disability patients have, and the now huge numbers of people given a diagnosis of CFS, correctly or otherwise.
All in all, 3 years wait, and the publication of the Norwegian Rituximab 'CFS' paper, can't come fast enough for all of us!!!
The 2015 NHS health care provision for ME or POTS is like visiting communist Russia in 1985, asking about Occulus Rift. Quizzical looks all round.