The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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A UK doctor of some sorts....?

Discussion in 'ME/CFS Doctors' started by Sporty, Apr 2, 2015.

  1. Sporty

    Sporty Senior Member

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    hi there

    Does anyone know of a good doctor/practitioner in the UK, hopefully in or around london? I'm stuck and I need help.

    Cheers
    S
     
  2. CantThink

    CantThink Senior Member

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    Depends 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).
     
    Last edited: Apr 3, 2015
    justy likes this.
  3. Sporty

    Sporty Senior Member

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    Hi there

    Yeah I guess for fatigue and allergy type symptoms. I'm finding it hard to find somebody! I did the Breakspear a couple of years ago. Bloody expensive and no noticeable help to me. Only go there if you have a lot of money!!
     
  4. msf

    msf Senior Member

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    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.
     
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  5. xrunner

    xrunner Senior Member

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    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.

    To my knowledge the Breakspear is the only place in the uk where one can hope for some more definite diagnosis e.g. Lyme, food sensitivities, MCS etc and treatment that may be helpful. But it is indeed expensive.
     
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  6. mermaid

    mermaid Senior Member

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    I saw Dr Charles Forsyth in London a few times, at Biolab, through his practice is in Surrey. He comes to Biolab one day a week. He is not cheap (though not as expensive as Breakspear I am thinking....), and works in a similar way to Dr Myhill, using some of the same tests via Acumen, though he also does some via Biolab. His specialty is Environmental medicine, and he also will use homeopathy if you like that (I didn't so he didn't use it). If you google his name it will bring up his website.

    Basically I had a load of tests and then used supplements to support me, along with diet changes. Clearly the tests he can order are limited, and don't extend to the ones that KDM can do.

    While I would not say I am exactly CURED of ME I am better in some areas - notably immune dysfunction and stomach issues (though much of the latter I worked out for myself) over a couple of years. However things fluctuate and I get relapses still at certain times like the winter months in particular, and a recent adrenal test showed problems still that have returned.
     
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  7. Sporty

    Sporty Senior Member

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    You know it does make me wonder if there is actually any answer to all this! Can we actually get better, cause I never hear of anyone truely better! I'm partially better through myhill and the like but still I look for answers! Dunno....... It can drive you mad second guessing.....
     
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  8. Sporty

    Sporty Senior Member

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    And what was that experience like ....?
     
  9. justy

    justy Donate Advocate Demonstrate

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    http://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.
     
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  10. Sporty

    Sporty Senior Member

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    Hi Justy

    So you went over there to see him? Any good?have you been helped?
     
  11. justy

    justy Donate Advocate Demonstrate

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    Hi Sporty, you'll just have to read my thread - too ill to talk more today
     
  12. msf

    msf Senior Member

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    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.
     
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  13. Sporty

    Sporty Senior Member

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    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!
     
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  14. msf

    msf Senior Member

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    Yeah, the money thing is a real problem for most patients - if you can get the money together though, I think it's best to look at it as a possible investment in the future, i.e. if it helps you to recover you will be able to go back to work and will end up making the money back.
     
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  15. msf

    msf Senior Member

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    Also, KDM knows that his patients aren't infinitely wealthy, and will still see patients who can only afford some of the tests.
     
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  16. Sporty

    Sporty Senior Member

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    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
     
  17. justy

    justy Donate Advocate Demonstrate

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    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.
     
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  18. justy

    justy Donate Advocate Demonstrate

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    I went to the BS last month and their testing is way more expensive - it looked like a bottomless pit to me, and they pushed the allergy and autonomic testing a lot. KDM is looking for abnormalities and then treats them, he doesn't push unnecessary tests at all. Also his treatments are much cheaper than BS. His clinic is a non profit, unlike BS who are definitely making a lot of money from their patients.
     
  19. Sporty

    Sporty Senior Member

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    Justy, did you have no luck with Myhill?
     
  20. CantThink

    CantThink Senior Member

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    Do you have an idea what precipitated or caused your initial illness or was it a slow onset?

    I had such an acute start to mine. It would make sense, if i had the money, that I should start by looking into chronic EBV (as until coming on here I didn't know one could have this lingering and reactivating). Plus possibly Lyme or the cat scratch infection (forgot the name). They are more likely possibilities due to my history and exposure - say if I had one or more, I would probably feel worse as a result due to the extra burden of my body trying to deal with those issues.

    So KDM would probably be a good bet in that respect as he deals with those issues. Thing is, I get the impression (just my impression from hearing other's reports) that diagnosis doesn't necessarily mean treatment is easy for UK patients. If one wants to get treated over there that's a massive expensive/commitment and requires a certain level of ability to travel, but to get treated over here seems complex and expensive too.

    I think what complicates things as well is knowing I've added more health problems as time goes on plus more symptoms... So in my mind it becomes hard to sort the one from the other. I find it complicated to attribute symptom to the which disease or problem as there is potential crossover.

    What treatment did you have at Breakspear? Was any of it helpful?
     

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