The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Best doc in UK?

Discussion in 'ME/CFS Doctors' started by burgeo10, Sep 16, 2017.

  1. burgeo10

    burgeo10

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    Hi all,

    Anyone got advice on best doctor in or near London? Even Europe considered. Many thanks.
     
  2. Fogbuster

    Fogbuster Senior Member

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    Do you mean a general doctor or CFS/ME specialist?
     
  3. Jesse2233

    Jesse2233 Senior Member

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    Dr William Weir in London

    A good subset of his patients recover
     
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  4. burgeo10

    burgeo10

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    Thank you - I'll look into Dr Weir. Yes looking for a CFS doctor - I became ill four years ago and improved alot but now am housebound. So any help appreciated
     
  5. Jenny

    Jenny Senior Member

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    Hi Jesse - I've heard good reports about him but what evidence is there that a good number recover? Which of his treatments lead to this?
     
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  6. Jesse2233

    Jesse2233 Senior Member

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    No good evidence only anecdotal I'm afraid. He uses the antiretroviral tenofovir
     
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  7. Fogbuster

    Fogbuster Senior Member

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    I wish I could help you more. I'm also keen to learn who the top 5 per say CFS specialists are in europe.
     
  8. jstash

    jstash Senior Member

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    Dr Weir is by all accounts, excellent, but you shouldn't throw stuff like this out here without evidence, it's misleading to patients.
     
  9. ukxmrv

    ukxmrv Senior Member

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    You asked for the best doctor but not what you wanted the doctor for. That's a big difference.

    Sadly, in the UK most doctors treating ME with conventional medicine have entire died. retired or left the country. The very few who are left have largely been nobbled by the GMC and been forced to either be very quiet about what they do or to only offer very limited help.

    Even if we look at over Europe there are still very few doctors who treat ME or C

    There is a list in this document (scroll down to UK and Europe section) but we'd need to know more about what you want from a doctor to determine who is the best for you

    https://sites.google.com/site/cfstestingandtreatmentroadmap/

    There are other scattered UK doctors I can think of as well but who is the best is going to depend on circumstances, type of ME or CFS, ability to pay, ability to travel, risks acceptable to take etc

    Dr Puri
    Dr Chaudhury
    Prof Brostoff
    Dr Enlander (when he visits the UK)
     
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  10. Jo Best

    Jo Best Senior Member

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    I would recommend Dr. Amolak Bansal if you can travel to Surrey as he runs the NHS CFS Service, so the website isn't too inspiring as the NHS clinics are based on NICE guidelines, but he is an immunologist.

    He is also directly involved with current UK biomedical research, for example, his patients provide the samples for the Invest in ME Research studies, which focus on the role of the immune system including autoimmunity.

    Not that I'm suggesting seeing him to get involved in research, just as an example that he's up to date and involved with current biomedical research in UK and internationally.
     
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  11. burgeo10

    burgeo10

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    Thank you all for the responses. I did see Dr Charles Forsyth - and his focus was from a nutrutional aspect. Forsyth found nothing concrete but I did recover significantly within two years - I trialled sups, gradually increased exertion and rested a lot. In July I tested positive for glandular fever during a 2 week illness , so now I would like to see a doctor who focuses more on the current research / viral aids. The two suggested, Weir and Bansal look like good bets - anyone know about their waiting periods?
     
  12. Jenny

    Jenny Senior Member

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    Try doing a search of their names on the forum. There has been quite a lot of discussion of them in the past.
     
  13. Demepivo

    Demepivo Dolores Abernathy

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    I understand that Charles Shepherd used to see patients privately. (He's based in Gloucestershire)

    As Jo Best says, Dr Amolak Bansal is based at Epsom & St Helier hospitals. He has a good reputation & involved in various research studies.

    No doctor is going to have a magic cure though.

    There may be NHS clinics in the area offering advice on pacing too.
     
  14. burgeo10

    burgeo10

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    Quick update - I called the Richmond hospital where Dr Bansal works and was told that a message popped up on screen saying he no longer treated CFS and focused on allergies - does anyone have knowledge of this? Would he still be worth seeing?
     
  15. Binkie4

    Binkie4 Senior Member

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    Dr Bansal sees his private patients at St Anthony's hospital, Cheam, currently on a Thurs pm and evening. It is extremely hard to get to see him on the NHS.

    Earlier this year his waiting list for St Anthony's was 6-7 weeks, but I am told that there are sometimes cancellations.
     
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  16. burgeo10

    burgeo10

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    I just called st Anthony's and they booked me to see him this Saturday? Is there any reason that wouldn't be okay?
     
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  17. Binkie4

    Binkie4 Senior Member

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    Not so far as I know.

    I had heard of occasional Sat appointments but again, as far as I know, he has a weekly Thurs clinic.


    EDIT: just to say that from my experience, he adopts an empirical approach. He didn't do loads of tests and come up with a cure. Others may have had a different experience??
    REEDIT:eek:bviously no one will have had an immediate cure LOL
     
    Last edited: Sep 19, 2017
  18. Countrygirl

    Countrygirl Senior Member

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    I saw Dr Weir a few weeks ago, and he said there is no treatment he can give.

    He is an excellent doctor though.
     
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  19. wiltedflower77

    wiltedflower77

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    @Countrygirl what did Dr Weir do then exactly if you don't mind me asking? I am trying decide who to go and see too.
     
  20. Countrygirl

    Countrygirl Senior Member

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    I gave him years of letters to prove to him I was genuine.

    After an hour's chat, he wrote to my GP. to tell her what I needed and a bit about ME. Useful stuff.

    Charged me £ 300.

    GP appears to have ditched/totally ignored his advice and letter as it isn't what she wants to hear. He contradicted the PACE mob one of whom had phoned my surgery and caused/is causing me a lot of trouble. My doctor wants a letter from a PACE-supporter to give her authority to take action that will make me relapse severely. Dr Weir wouldn't give her that authority, so she has set up an appointment with one who will.

    Deadlock

    I cannot and won't attend the appointment.

    They are being persistent and determined. So am I. I don't want to be harmed. They have other ideas as does my GP.

    At least I have Dr Weir's letter to wave at them as a sort of shield although they will ignore him as he is private and the PACE mob and supporters are NHS.

    He is a good man who is well informed.

    I recommend him, although he can't make your GP listen to him,
     
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