Julie Rehmeyer's 'Through the Shadowlands'
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Good doctors near Oxford? or anywhere?

Discussion in 'ME/CFS Doctors' started by harveythecat, Jul 19, 2014.

  1. harveythecat

    harveythecat

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    Manchester, UK
    Hello,

    I'm really new to this site so hi again. I'm a student, currently taking a year out because of being ill.

    Can anyone recommend a good doctor anywhere remotely near Oxford?

    I've been seeing GPs there who are nice enough but either have absolutely nothing to say or are pretty dismissive (I'm sure this isn't shocking news to anyone here.) I asked to be referred to the Oxfordshire chronic fatigue clinic, but having looked up some of the literature they recommend reading (Trudie Chalder books) and seeing that the treatments are GET and CBT I'm a bit worried that it will be, at best, a demeaning waste at time.

    I'm prepared to go private if necessary.

    Any ideas at all? Much appreciated?

    And solidarity with everyone who is battling with this xxxxxxxxxxx
     
    justy likes this.
  2. Valentijn

    Valentijn Senior Member

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    If you want a real ME specialist, Dr de Meirleir in Belgium might be your best bet. The visits are cheap, but the testing and treatment can get expensive.
     
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  3. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Cornwall, UK
    Hi, and welcome.

    I'm not aware of any good ME clinics in the UK, I'm afraid. Maybe someone will know of a half-decent ME-friendly doctor in your area, but they too seem to be about as common as hen's teeth. :(

    You may find the best doctors to be Phoenix Rising and yourself! (I do.)

    Sorry not to be the bearer of glad tidings, but at least you're not alone here. :)
     
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  4. ukxmrv

    ukxmrv Senior Member

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    London
    There are very few doctors left in the UK who treat ME. You are now too late as most doctors have now retired, tired, been forced to stop treatment by the GMC or left the country.

    We do have CFS or Fatigue clinics but even there the psychiatric lobby has a stranglehold and unless you are after CBT, graded exercise or similar they aren't much use. Not surprised to hear about the Oxford one.

    The private doctors that are left are controversial. Some patients speak highly of them whilst others have different experiences.

    You are not far from the Breakspear Clinic

    http://www.breakspearmedical.com/files/directions.html

    (do a search on the forums for patient experiences)

    Dr Myhill is highly regarded by some of her patient but once again others don't find her approach useful

    http://www.drmyhill.co.uk/wiki/Main_Page

    There are others doctors who see patients (like Dr Weir and Dr Chaudhuri but they don't offer treatment)

    Some patients speak highly of Dr Gabrielle Murphy at the Royal Free, North London and Dr Bansal at Sutton, Surrey who do have NHS clinics

    http://www.epsom-sthelier.nhs.uk/ou...athology/immunology/chronic-fatigue-syndrome/

    http://www.meassociation.org.uk/201...fs-service-at-the-royal-free-hospital-london/

    I've met both of them and I understand that they offer little in the way of treatment although I know patients of both these doctors who have had some limited antiviral or immune modulator treatment. It sounds as if Dr Murphy who supports NICE/BARTS/PACE also has an interest in immune treatment but sometimes for her private rather than NHS patients.

    Hopefully other posters may have better ideas. There are good doctors here and there but every-time I write something like this I hear that they are retired or stopped experimental treatment.

    Other options would be to see Dr Enlander when he comes to the UK or have a Skype consult with him in New York or go to Belgium to see Prof KDM as suggested above.
     
    Last edited: Jul 19, 2014
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  5. charles shepherd

    charles shepherd Senior Member

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    You should find it helpful to come along to our MEA Question Time meeting at Wolfson College in September:

    Saturday, September 27
    Wolfson College, Oxford, 2pm

    The annual ME Association ‘ME Question Time’, co-hosted by local ME group OMEGA. Panellists will include MEA medical advisers Dr Nigel Speight and Dr Charles Shepherd, expert ME/CFS dietitian Sue Luscombe and Jane Colby, executive director of the Young ME Sufferers Trust. Wolfson College also has some bed and breakfast accomodation available during the summer vacation if you want to stay overnight. Details on the college website:https://www.wolfson.ox.ac.uk/conference/bed-and-breakfast

    I will be working away from my office on Monday and Tuesday next week but if you want to give me a call later in the week I would be happy to go through the clinical assessment, diagnosis and management options for people with ME/CFS
     
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  6. charles shepherd

    charles shepherd Senior Member

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    We also have a booklet covering research findings, clinical assessment, diagnosis and misdiagnosis, and all aspects of management. This publication is fully referenced: 300 plus of the most relevant papers covering research and clinical trials:

    http://www.meassociation.org.uk/201...e-latest-research-all-wrapped-up-in-52-pages/
     
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    In case anyone worries that Dr Shepherd is being a shameless self-publicist :D I would support what he has said. He is one of those rare doctors who does understand ME.
     
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  8. charles shepherd

    charles shepherd Senior Member

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    Thanks!

    I have also been involved in muscle research at Oxford - using my own skeletal muscle. This was the first published research to report on a disturbance in muscle energy metabolism involving early and excessive intracellular lactic acidosis, probably linked to the mitochondrial dysfunction described at about the same time by Prof Mina Behan et al in Glasgow - who looked at muscle biopsy specimens (including my own!) using electron miscroscopy

    Lancet. 1984 Jun 23;1(8391):1367-9.
    Excessive intracellular acidosis of skeletal muscle on exercise in a patient with a post-viral exhaustion/fatigue syndrome. A 31P nuclear magnetic resonance study.


    Abstract

    A patient with prolonged post-viral exhaustion and excessive fatigue was examined by 31P nuclear magnetic resonance. During exercise, muscles of the forearm demonstrated abnormally early intracellular acidosis for the exercise performed. This was out of proportion to the associated changes in high-energy phosphates. This may represent excessive lactic acid formation resulting from a disorder of metabolic regulation. The metabolic abnormality in this patient could not have been demonstrated by traditional diagnostic techniques.


    Magn Reson Med. 1984 Sep;1(3):307-15.
    Metabolic recovery after exercise and the assessment of mitochondrial function in vivo in human skeletal muscle by means of 31P NMR.



    Abstract

    It has been suggested that the rate of phosphocreatine resynthesis after exercise is an index of mitochondrial oxidative metabolism in intact muscle. To investigate this hypothesis, the time courses of metabolite recovery following mild and more severe dynamic exercise of human forearm muscle were compared by means of 31P NMR. Severe exercise resulted in greater net hydrolysis of phosphocreatine and greater intracellular acidosis than light exercise. The rate of phosphocreatine resynthesis was significantly slower during recovery from the more severe exercise. To explain this it was noted that, as a consequence of the high activity of creatine kinase in the sarcoplasm, the [phosphocreatine] at any time is a function of the intracellular pH. Calculations demonstrate that the difference between rates of phosphocreatine recovery after the two exercise
     
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  9. charles shepherd

    charles shepherd Senior Member

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    Mina Behan's paper on mitochondrial dysfunction - worth noting that all this muscle research was published 30 years ago….http://link.springer.com/article/10.1007/BF00294431
     
  10. harveythecat

    harveythecat

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    Manchester, UK

    Wow - that would be great if I could speak with you, much appreciated! How do I contact you?
     

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