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Royal Free 'Fatigue' clinic, London

Discussion in 'ME/CFS Doctors' started by Jenny, Feb 26, 2010.

  1. Uno

    Uno Senior Member

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    That's interesting to know - cheers for posting. The Sussex M.E Clinic is the one I attend which is truely atrocious - physiotherapy consult OVER THE PHONE - no actual physio, no blood tests, no exam, only group CBT! What a waste of government money!
     
  2. Esther12

    Esther12 Senior Member

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    Darn it. I'm in Sussex.

    The one I went to before was in Surrey, and was comically bad.

    It would be so great to have access to an honest and intelligent doctor who specialised in CFS and was trying to help you get better... even if there was nothing they could actually do!
     
  3. ukxmrv

    ukxmrv Senior Member

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    Jenny,

    I understood that a psychologist, Dr Murphy, was the head person at the RF clinic. When I spoke with her a few years ago she wasn't carrying out testing like you described. Has the clinic changed do you know, was it Dr M that you saw?
     
  4. Jenny

    Jenny Senior Member

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    ukxmrv - I don't know if it's changed I haven't had any contact with it until now, and yes I saw Dr M - she's not a psychologist, but a physician.

    Jenny
     
  5. taniaaust1

    taniaaust1 Senior Member

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    ahh i think your post gave me a glimpse into the future... i think Wessely may soon retire too :p
     
  6. taniaaust1

    taniaaust1 Senior Member

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    i wonder if that hospital may be better then most of the others in England due to it having infectious CFS/ME named after it??.. eg Royal Free disease back in 1955 which closed that hospital down. i guess those who work there would be bound to be more aware of that CFS infectious outbreak and the fame its given that hospital..
     
  7. Jenny

    Jenny Senior Member

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    Just to update on my Royal Free experience -

    Finally got an appointment with an infectious disease consultant two weeks ago after my referral letter was lost in the system - twice!

    But this turned out to be a waste of time as she said (predictably) that she's not allowed to prescribe anything other than the meds to manage symptoms that I'm already on.

    So I went back to the Fatigue Clinic today and had another helpful hour with Doctor M. She is very generous with her time. I wanted someone to monitor me if I start isoprinosine so she's going to refer me to an immunology consultant. She also gave me a private script for Valtrex for 6 weeks.

    Jenny
     
  8. Vitalic

    Vitalic Senior Member

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    Hi, I asked to be referred to this clinic as I'm living in London at the moment, been ill for two years and already tried CBT/GET etc. with no improvement. I just got a letter saying my referral has been intercepted so to speak, and they are assessing whether I should even be allowed to go there! I wonder if it's because I only had one appointment with the hospital I was originally sent to and never went back - they wanted to send me to support groups with other sufferers, and I was given a relaxation cd (charged 10) that included a lady telling me to "focus energy" to certain areas of my body - seriously, is this some kind of sick joke?

    Anyway, I was encouraged by your appraisal of this place but it looks like I won't even get an initial consultation. One thing I was wondering, what tests should I be asking for? I had some basic tests done (although I'm not even sure exactly which) and absolutely nothing showed up, if there was even some evidence of diminished immune response or other abnormalities it would give me some confidence that this is worth pursuing, as opposed to giving up and slowly rotting away.
     
  9. Jenny

    Jenny Senior Member

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    Vitalic - as well as the basic blood tests they do ANA, EBV and gluten sensitivity tests. Also magnesium and Vit D if you ask for them.

    They will refer you to other specialists at the Royal Free. I got referred to an infectious disease specialist, but got nowhere with that, now I'm waiting for an appointment with an immunologist.

    I heard a rumour recently that they are now only taking new patients. What do they expect the 'old' patients to do I wonder.....
     
  10. Esther12

    Esther12 Senior Member

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    That's interesting.

    Anyone with any more info on that?
     
  11. Vitalic

    Vitalic Senior Member

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    Thanks for your response. I'm still waiting to hear back about my appointment, although I do not expect anything to come out of it I would simply love to talk to a consultant that is actually up to date with the latest research etc. and will approach it from a different angle, perhaps check over my records and advise on some additional tests.

    We really are pretty much screwed in the UK, it seems we can't get any of the tests that would be really useful and the NHS is a total waste of time and energy.
     
  12. Jenny

    Jenny Senior Member

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    Finally got the appointment with the immunologist. Nice man.

    Tests show I'm severely deficient in mannose-binding lectin (MBL). Only one in 600 people have a level as low as mine. Apparently this is an inherited immune deficiency which predisposes one to infections and autoimmune diseases. Consultant didn't think it was relevant to ME though. There isn't any treatment for this condition.

    Anyone know anything more about MBL deficiency?

    I'm starting B12 injections (again), and amitriptyline (again). (And still doing lots of other stuff with Breakspear.) More importantly he's agreed to review me in a few months.

    So it is possible to get beyond GET at a UK Fatigue Clinic!

    Jenny
     
  13. Esther12

    Esther12 Senior Member

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    Thanks for the update Jenny.

    I'm tempted to try an NHS CFS clinic again, and see if they've improved. I'm currently in west sussex though, and I think the local one has a particularly bad reputation.

    Strange that they don't think the MBL deficiency is related to your fatigue. I wonder if they're right, or just blagging.

    Oh... did you see this post on the last page?:

    That's interesting.

    Anyone with any more info on that?
     
  14. IntuneJune

    IntuneJune Senior Member

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    Immune deficiencies

    Jenny, I have never heard of mannose-binding lectin. However, I do have a primary immune deficiency. Diagnosed at age 30 with fibromyalgia and CFS, I was not diagnosed with an immune deficiency until age 62. The tests are IgG (total), IgE, IgM, IgA, IgG subclasses 1,2,3, and 4.

    I have been attending meetings regarding immune deficiencies and sometimes I feel I am at a fibro support group with the complaints the patients have.

    While I have been treated with immunoglobulins to replace/boost my immune system, my symptoms of overwhelming fatigue and fuzzy thinking have not improved to any great extent.

    June
     
  15. Jenny

    Jenny Senior Member

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    I didn't get the impression they were blagging Esther. But I wouldn't describe my problems as 'fatigue'. I get extreme weakness when in a bad spell, but that's reduced a lot at the moment. 'Just' dizzy, shivering, sweating, nauseous, no appetite, in pain, wired up etc.

    Might be worth trying your local clinic again, if just to show them you're there!

    Jenny
     
  16. Jenny

    Jenny Senior Member

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    Went for my follow-up appointment last week. What's happening now is that the doc who runs the clinic (Dr Murphy) only sees new patients. Follow-up appointments are with a specialist nurse.

    The nurse tried to discharge me! But after a difficult discussion she gave me another follow-up appointment in one year's time.

    I guess I'm lucky to still be on the immunologist's books.

    Jenny
     
  17. Esther12

    Esther12 Senior Member

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    Hi Jenny. thanks for the info. Hope they're of use to you.
     
  18. Jenny

    Jenny Senior Member

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    Went to this follow-up appointment a few days ago. No-one there. Was eventually told my appointment had been cancelled and I've been discharged. No-one told me! I actually had the appointment letter with me to prove I had an appointment.

    I'm furious. Gonna put in a complaint.

    Jenny
     
  19. Esther12

    Esther12 Senior Member

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    Sorry to hear about that. I hope that getting there wasn't too much of a problem.
     

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