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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Hi thereDepends what you want help with - an exact issue or more generally...
There's Dr William Weir who works privately in Harley Street. I haven't seen him, but I found out about him recently and so far have read good things of him. I'm not sure what type of treatment he can offer (if any)... That's something I want to find out more about. edited to add: http://forums.phoenixrising.me/index.php?threads/good-doctors-near-oxford-or-anywhere.31529/ - seems he can diagnose but doesn't treat. Anyway that thread might help you.
Or there's the Breakspear Hospital which is private unless you can secure (rare) NHS funding - that's in Hamel Hempstead. (Mixed reviews and can be expensive).
He can be helpful with insurance claims but not with treatments. When I saw him his treatment suggestions included trascendental meditation...actually that was about it in my case.There's Dr William Weir who works privately in Harley Street.
I would like to help, but like a lot of Brits on here I had to go to see KDM in Belgium to get a diagnosis and some treatment.
Hi Justyhttp://forums.phoenixrising.me/inde...to-see-professor-de-meirleir-long-post.30327/
This is just my thread - there are many others. I have spoken to may of his patients who are much improved - he doesn't claim to cure, but will do his best to find and treat anything he finds. He is a good Dr. Travelling to and from Brussels can be too much to deal with and if you have to have treatment there then the costs of accommodation etc really add up.
Well, I'm 95% sure he found the trigger for my illness (Yersinia Enterocolitica) but treating it isn't easy, just like Lyme disease. I have much more confidence in KDM's treatment regimen than that of any doctor in the UK though, not that they would treat me for this infection, since they basically do not know anything about it and therefore will just ignore it.
This includes the ID doctors I saw on the NHS - if you suspect your disease had an infectious trigger, then I doubt there is anyone in the UK who is as good at finding that cause as KDM.
Also, KDM knows that his patients aren't infinitely wealthy, and will still see patients who can only afford some of the tests.
Yeah but I did that sort of money at the breakspear and it was a waste of money! I'm loathered to do that again! I've spend thousands and most of it has been a waste! Hate to get there and not be able to afford the tests I needed! Lol
I raised all the money so far myself by having an online fundraiser. I also sold lots of stuff on e bay (although this was quite hard for me) I did some boot sales with the help of my husband and last year we rented our house out over the summer and lived in a caravan in the garden.
This year I have a LOT more money to raise so am going to ask a local woman who does a lot of charity fundraising (she cuts my hair and has hinted she might help me). I am going to sell my old car for scrap (only get about 100 pounds for it, but it all adds up). I have also recently got my ESA reinstated as I am in the SG now, this took a lot of energy to get this back, but it means I can save 50 quid here and there.
Ultimately I will need to rent my house out again as well and get a bank loan - no idea how I will pay this off but as msf says if I get well enough I can either work or be well enough to raise money by selling on e bay etc myself. My husband cant take work wherever he would like currently as he also has to look after me and the kids, If I get at least partially better then he can take work further afield to support us.
Nobody should imagine its only the rich that can do this, we have been on a very low family income for a few years now and its hard, but without treatment iam just getting more and more ill with no hope.
You know I really don't have any idea what's cause the continuisation of my bloody symptoms! I just couldn't front the money you guys are talking about tho!