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London/UK doctors

Discussion in 'ME/CFS Doctors' started by miss editor, Feb 18, 2010.

  1. miss editor

    miss editor Guest

    I'm looking for a good doctor/specialist who deals with fatigue/energy related issues with an emphasis on natural remedies.
    I've had fatigue for the past eight years; it has been diagnosed and mis-diagnosed as CFS. Though I am able to hold down work and play some sport, I never quite feel fully on top of things and have low tolerance for stress and lack of sleep.

    I've been to the Diagnostic Clinic and didn't really find their treatments helped - and were v. expensive - so am hoping someone may have other suggestions.

    Thanks!
  2. garcia

    garcia Aristocrat Extraordinaire

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    Hi miss editor,
    I'm also looking for a doc in London. Hopefully someone will come along with a recommendation.

    I was thinking of trying the diagnostic clinic at one stage. Who did you see there and what did you try?
    many thanks,
    garcia.
  3. Luke

    Luke ooph

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    Hey People, I see Dr Nicola Hembry who is based in Bristol but has a clinic in London. She has a well balanced approach between mainstream and natural treatments and is happy to steer things in the natural direction if I want to but has been great at letting me try clinicaly appropriate prescription meds when needed.

    She seems to stay well abreast with the international research and has a great collaberative manner too. I found it really useful seeing her to rule out the things that the NHS haven't bothered to look for and to know there's someone there to run new ideas by.

    I'm still very ill but her interventions have really taken the edge off the worst of the hellishness.
  4. miss editor

    miss editor Guest

    Fantastic - thanks very much, Luke!
    I'll look her up.
    Sorry to hear that you're still battling with the illness - it can be v hard at times... best wishes for a full recovery.
  5. miss editor

    miss editor Guest

    Hi Garcia,

    I was seeing Dr Sharma, who worked out that I probably don't have CFS, but that my mitochondria are not functioning fully, preventing me from being able to have full energy levels and feel like 'me' again. I tried various protocol to try and detoxify the translocator sites, but after six months of treatment, I didn't really see any great improvement and I was facing further, expensive options to try and shake the toxic waste from the malfunctioning mitochondria sites. It required money I don't have and I felt unconvinced about its success. Also, I have since improved quite a lot through lifestyle changes, so now I would rather try to manage the low-level fatigue in other ways...
    Hope this helps!
  6. garcia

    garcia Aristocrat Extraordinaire

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    Looks like Dr Hembry sees people at biolab from the following:

    http://www.biolab.co.uk/reflist.html

    Miss editor,
    thanks very much for the info. You are lucky in one sense in that most/all of the practitioners in London/the UK tend to treat low-level fatigue, rather than ME/CFS per se.

    Do you have any post-exertional malaise issues at all? For me that would be the gold-standard to tell whether someone has CFS or some other form of fatigue.

    If you manage to see Dr Hembry let me know how it goes!
    garcia.
  7. Luke

    Luke ooph

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    Hey miss editor, thought I should say that the costs with DR Hembry can rack up pretty fast too, especially the tests. She also works with mitochodrial issues so it may be that it'd duplicate too much of what you've already done, but maybe not...

    Have you got into the far infrared sauna stuff? I haven't got a direct reference but I think that Dr John McLaren Howard (the mito test man) has reported improved mito function from using them for detox.

    http://www.drmyhill.co.uk/wiki/Detoxing_-_Far_Infrared_Sauna_(FIRS)

    Oh, and thanks for your good wishes
  8. natasa778

    natasa778 Senior Member

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    Dr Klinghard is now seeing patients in Surrey - Forest Row. Not sure of contact details but you could try phoning his US office. you could also try Lucinda Miller in West London http://www.naturedoc.co.uk/
  9. Snurf

    Snurf

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    NHS doctors

    Hi,

    I'm new here and have read through loads of these threads to try and find a good doctor. My GP has asked me to find out where I want her to refer me to. From what I've read, it seems a pretty rubbish situation in the UK, and it seems that what few good ME doctors there are, are only available privately. I may pursue one of these, but I also need an NHS recommendation. I live in London, but will be moving to South Devon soon. I need an NHS referral (London for now) which is going to give me a decent reference for ESA and an employer insurance claim - and of course, hopefully who will make me better too!

    Can anyone recommend what I should do. I don't want to accidentally get referred to Wesseley's friends' clinics if I can help it, from what I've seen on the web...

    Thanks,

    S
  10. justy

    justy Senior Member

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    Hi Snurf, sorry im not up on M.E clinics in london (NHS) but the ESA and insurance are things your GP can do for you. Ive never seen an NHS specialist but have succesfully claimed ESA for a couple of years. Your GP can write bout your condition and how it affects you.
    All the best, Justy.
  11. Snurf

    Snurf

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    Thanks Justy.
    I'll pick that up with my GP. Am still waiting for the medical questionnaire from ESA, so I guess I'll have to work that out when it comes.

    I have been seeing a nutritionist privately for the past 6 months as I was originally diagnosed with adrenal fatigue and lupus. Thankfully it seems that I do not have lupus, but ME seems much more likely... although everyone is trying to tell me I'm depressed, which I really don't think is true. It seems that the nutritionist advice is spot on with Dr Myhill's advice, which is good... and I do indeed feel better compared with 6 months ago - although nowhere near right yet. So perhaps I'll stick with that for now.

    I still do need to tell my GP something though, so if anyone does have any NHS experience I'd be very grateful to hear about it...

    S
  12. ukxmrv

    ukxmrv Senior Member

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    I don't know of many doctors who work for the NHS who will see patients with ME and CFS in London who are not friends of Wessely or of the whole CBT/GET things.

    There is Dr Janice Main who runs a Fatigue Clinic at St Charles Hospital in W10. She may be able to help with diagnosis and to write to your GP. Although she may be able to offer some NHS tests the only treatment I think available is CBT.

    Dr Russell Lane at Charing Cross Hospital who is one of the few Neurologists with an interest in ME. I've not seen him but told that he is helpful with diagnosis, basic testing and also benefit report/medical reports for legal cases.

    East London has another good Neurologist Dr Chaudhuri at Queen's hospital, Romford. I'm not sure how many NHS patients he actually sees though.

    Good luck.
  13. Snurf

    Snurf

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    Thanks. That's useful info - and unfortunately it's what I feared re the CBT/GET thing. It's really pervasive, isn't it.

    Will write to my GP now and cross my fingers...

    S
  14. xrunner

    xrunner Senior Member

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    When I fell ill Dr Murphy of the Royal Free Hospital in Hampstead helped with my insurance claim. She seemed quite good but also messy and a bit disorganised.
    I also saw Dr Janice Main at St Charles' a couple of years ago and she appeared to be a decent doctor.
    Privately Dr Weir in Harley St was very helpful with insurance claims. He helped me claim some private treatment under my health insurance but also with my employer's insurance.

    All these doctors I found quite understanding with regard to my condition. However, they won't be able to help with treatment or getting better. For that, you need a doctor that can see (for reasons of medical politics mainly) beyond the meaningless diagnosis of CFS/ME.

    I have seen many private doctors over the years and been to various places, including
    the Diagnostic Clinic and Biolab mentioned earlier in the thread. Needless to say that I wasted my time and money there (and in other places as well).
    The only place where I was able to make progress and recover was the Breakspear. I was also a patient of Dr W at the same time. However I had to take responsibility and an active role regarding my treatment to make real progress.
    All the best.
  15. Snurf

    Snurf

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    Thanks everyone.

    Good to get all these recommendations of who to see, as I really don't need anyone else to tell me I'm depressed or putting it on and that if I pull myself together I'll be fine.

    Interesting to know biolab etc are a waste of money. Have had some tests done there by my nutritionist and found gut dysbiosis and adrenal fatigue. Haven't seen anyone there for consultations though. I think I'll wait for my next nutritionist appt in 6 weeks and see if I can get more NHS tests once I've got a referral. I don't have health insurance and my savings are now running out after living off them and paying for treatments for 6 months. I am slowly getting used to the fact that everything takes so long and I need to learn patience!:rolleyes:

    Thanks for all the advice.

    S
  16. aquariusgirl

    aquariusgirl Senior Member

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    I saw some NHS CFS specialist at the Royal Homeopathic Hstpl in London...Charing X....Not sure of his name.. Dr Christiansen or sthg.. Total LOSER. V. much in the pysch camp.
  17. taniaaust1

    taniaaust1 Senior Member

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    Hi welcome.
    Sounds like you have got a great nutritionist. She may end up helping you more then anyone. Good doctors for this illness are real hard to find no matter where in the world you are (thou the english situation is very bad).
  18. ukxmrv

    ukxmrv Senior Member

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    Aquarius girl,

    I picked up a leaflet at the RHH in London and noticed that they had a "fatigue" clinic giving CBT and were claiming that this was for ME as well. Such a pity as I used to see someone there (Dr Jenkins) who was very interested in different drug / supplement treatments for ME. He was retired and these new doctors that they have are only offering me the EPD I had before plus homoeopathic remedies.
  19. Snurf

    Snurf

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    Hi,

    Isn't Dr Russell Lane at Charing Cross? I guess that must mean RHH then. Someone said he was good - maybe he's picking up from Dr Jenkins (fingers crossed).

    S
  20. vli

    vli

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    Hi, i think this is the second time i've heard Russell Lane mentioned in this thread, the first I ignored thinking maybe he's changed, but now I feel compelled to relay my experience. I saw him about a year after I was diganosed--2002--he knew NOTHING about ME back then, nothing, nada. I'd been put on waiting list for him by my GP and his entire examination consisted of someone else, maybe a student of his (he was not in the room) carrying out a ten minute or so neurological examination of tapping me around the body, maybe to rule out MS or Parkinson's or whatever and then me filling in a two-page questionnaire that basically tried to get me to say it was a psychiatric condition (I think all the questions were along the "are you depressed?" line). Makes me angry just to remember the experience--he then came in the room and explained, very condescendingly and patronisingly, to my parents that I was simply a very, very depressed girl who needed psychiatric treatment and HAD NO ME. Like I said he might've changed over the years but 2002 wasn't that long ago and personally I would NOT put my health in the hands of someone who only 9 years ago knew nothing about ME. I am a patient of Kenny De Meirleir now.

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