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UK doctor - North east?

Discussion in 'ME/CFS Doctors' started by greenleaves, Jul 26, 2016.

  1. greenleaves

    greenleaves

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    Hello,

    I am currently in the process of being diagnosed with ME. My GP keeps fobbing me off with its stress at work but given my recent sudden deterioration to the point where I have multiple systemic issues and no psychological issues much to their disappointment they have taken lots of bloods and referred me to a neurologist and the ME/CFS clinic.

    I am currently awaiting testing with the neurologist but do not have an appointment with the ME clinic until October. Though I doubt given their website that they will offer little other than GET / CBT. I don't think this appropriate given the research etc. and so I am looking for a ME consultant with a true understanding and belief in the physiological and infectious causes who is willing to work with me to get to a sound diagnosis, find out the cause and get a suitable treatment plan. I am a vet and studying for a specialism in medicine so I know when they are fobbing me off and I dont feel that up to now anyone is taking me seriously. Ideally someone in the north of England but I will find a way to get there if it is elsewhere in the UK.

    I know I am asking for a recommendation for a doctor that probably doesn't exist but I can always try

    :)
     
  2. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Bristol
    Are you eligible to see Julia Newton? She's in Newcastle I think. She does well respected biomedical research on ME and POTS but also seems to still see patients. Other than her I don't know (in South West).
     
  3. Cheesus

    Cheesus Senior Member

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    Hi Greenleaves

    Welcome to the forum.

    Dr Spickett is an immunologist at the RVI in Newcastle who specialises in CFS/ME. My understanding is that he is the regional CFS/ME 'champion'. I have had one of my many assessments with Dr Spickett, and it was by far the most thorough. He won't offer you any treatment other than management with your local CFS service which is obviously a bummer, though at least my local CFS service hasn't forced me to exercise at any point. It is also very unlikely he will be able to find the cause, but I would say that is true of pretty much every doctor you might visit. However he will absolutely rule out common misdiagnoses and aim to uncover any missed diagnoses. He will also wield the respect of your NHS GP.

    It is unlikely you will get to see him on the NHS in any sort of meaningful timescale as he is in such high demand. I saw him privately and I had an hour long appointment with him which went into a lot of detail. He also wrote a very good letter to my GP after the appointment which, bar one misunderstanding, was accurate and thorough. I have consistently found it useful to have that letter as evidence of my illness and as a thorough description of my health.

    I have also been nagging Dr Spickett over the years about some unusual symptoms I have. Unfortunately he can't do anything about them, but he seems to reply to me in a timely manner and is very straight forward in his responses.

    Alternatively you might be able to see Professor Julia Newton, who also works at the RVI and Newcastle Uni. I believe she is primarily a research scientists, however, and so her appointments might be in even higher demand due to the limited time she can allocate to clinical appointments. I have not had an appointment with Julia Newton, though I have had some interaction with her and she seems very nice. I am sure she would be a very good choice too, but I cannot recommend her specifically and I do not know if there would be any advantage to seeing her over Dr Spickett.

    Be wary of psychiatrists. I have had bad experiences with a certain CFS psychiatrist in the North East who has given me very poor advice.
     
    taniaaust1 likes this.
  4. greenleaves

    greenleaves

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    Thank you very much I have already started to make enquiries
     
  5. ukxmrv

    ukxmrv Senior Member

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    Hi there Greenleaves,

    It's good news that you have already investigated the "ME" clinic close to you and can see how bad the service is.

    This may not be the closest to you but could I suggest you contact this local group. I've had some dealings with them in the past and they seemed the most up to date with the few sensible and knowledgeable doctors in the wider area

    Tyne and Wear ME/CFS Support Group

    Formerly the Sunderland and South Tyneside ME/CFS Support Group

    Pauline Donaldson

    Tel: 01914 556 959

    Email: me-cfs@blueyonder.co.uk

    website: www.mecfs.co.uk

    (info taken from the MEA list of groups and I don't know how up to date it will be sorry)
     

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