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Planning to see Dr William Weir, Harley St. Any advice or opinions?

Discussion in 'ME/CFS Doctors' started by Mrs Sowester, Jan 23, 2016.

  1. Mrs Sowester

    Mrs Sowester Senior Member

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    I've heard some good things about Dr Weir, he's a member of ME Association so I assume knows his stuff. Does anybody have any info about him or had a consultation with him?
     
  2. ukxmrv

    ukxmrv Senior Member

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    I have. He wrote a report for me on a medico-legal matter. The report was good. We did discuss treatments and at that stage (5 years ago ish) he was not offering anything. That may have changed by now.
     
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  3. Mrs Sowester

    Mrs Sowester Senior Member

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    I've an online friend who has seen him, he's prescribing the antiretroviral Tenofovir for her.
     
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  4. minkeygirl

    minkeygirl But I Look So Good.

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    U.tv interview with Dr Weir and Dr Enlander


     
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  5. ukxmrv

    ukxmrv Senior Member

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    Interesting

    Do you know that tests or ideas that is based on?
     
  6. bohemian

    bohemian

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    I want to see dr weir in harley st. Any ideas about how good he is. I may see dr hyde in january. But i might go to harley street for neurology as i cant get help.
     
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  7. Mrs Sowester

    Mrs Sowester Senior Member

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    He's one of the good guys, expensive but worth seeing.
    He'll help confirm diagnosis, write letters of advocacy to benefits agencies and health professionals and recommend dietary adaptations and supplements he sees fit.
    I suggest you know what you want from the appointment and ask for it directly - he will do his best to help if he can.
     
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  8. taa2

    taa2

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    Do you know how she is doing on it? I'm open to trying this as it can be purchased easily , safely and cheaply online
     
  9. charles shepherd

    charles shepherd Senior Member

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    I have known William for many years and worked with him on various cases, including some legal ones

    He is a very kind, caring and conscientious physician and I'm sure you will find your consultation worthwhile

    As others have said, it's probably a good idea to prepare a short written list of any key points you want to discuss, or questions you want to raise, during the consultation
     
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  10. Countrygirl

    Countrygirl Senior Member

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    I know someone who is now nearly recovered by taking a combination of tenovir and issentress. I don't think taking tenovir alone worked so well for them.

    I first met Dr Weir back in 1989 when he was first taking an interest in ME. He is excellent. I wish I could see him.
     
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  11. shahida

    shahida Senior Member

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    d0es anyone knowif he prescribes sleep meds eg. zoplicone etc?
     
  12. Orla

    Orla Senior Member

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    Hi background is infectious diseases, and comes from the biomedical perspective on ME/CFS. He is one of the good ones :)

    He has written some good letters to the media and done some interviews, so if you google him you might be able to see some of these? He wrote an interesting submission to the NIH (?) recently, and made suggestions of possible drug trials to run. We had him speak to our ME/CFS group a few years ago and he gave a good talk. You might want to bring any test results with you and it should speed things up a bit.
     
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  13. Mrs Sowester

    Mrs Sowester Senior Member

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    I should update really; the 3 months of anti-retroviral didn't work for me, I could have been taking sugar pills for all the effect they had on me. At the end of the 3 months he suggested a combination of anti-retrovirals but the emotional investment I made (as well as the financial) was too great for me to try another expensive shot in the dark.
    I had no ill physical effects, but did become significantly more depressed during the 3month trial and tried Fluoxetine (Prozac) which really did mess me up. I was incredibly happy on the fluoxetine, but didn't sleep more than an hour or two a night which led to a major crash and some spectacular falls.
    Dr Weir is a good guy, he will write supportive letters and prescribe privately. He's very prompt with answering emails and the like. I wouldn't let my experience with ARVs put anyone else off - if you've had a sudden ME onset after a virus and had been very well beforehand then it's probably worth a try.
    My own personal theory is that my ME isn't perpetuated by a virus, it was inherited from my mother and I've passed it on to my daughter. The only time I've felt truly well and full of energy was the 9 months I breast fed.
    Before I invest hope in another treatment I need more evidence, but that's just me.
     
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  14. sarah darwins

    sarah darwins I told you I was ill

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    Thanks for the frank update, Mrs S.

    Really sorry it didn't help you. Hoping for something more certain for you — and all of us — before too long.
     
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  15. Mrs Sowester

    Mrs Sowester Senior Member

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    Thank you Sarah :hug:
     
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  16. Countrygirl

    Countrygirl Senior Member

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    Thanks for the update @Mrs Sowester .

    I am sorry it didn't work out for you, but it is good to have you back. You were missed!
     
  17. Snowdrop

    Snowdrop Rebel without a biscuit

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    @Mrs Sowester

    I'm also sorry to hear that the treatment you tried did not help and all that followed after. I understand how easy it would be to become very invested in having it finally be the solution to this horrible disease. Sometimes all we can do is keep on keeping on.
     
  18. wastwater

    wastwater Senior Member

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    He sounds like one of the few worth seeing in the U.K.
    I wonder if the nhs would accept his diagnosis
     
    Last edited: Nov 21, 2017 at 12:43 PM
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