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Royal Free 'Fatigue' clinic, London

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

  1. Jenny

    Jenny Senior Member

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    Just about the only 'treatment' available from the NHS in the UK is from the 'Fatigue Clinics' set up in various parts of the country. I've never bothered with them as they only offer psychological treatments, but a few months ago I asked my GP to refer me to my local one as I thought that if XMRV pans out, they might eventually offer testing and it might be a good idea to be one of their patients.

    I had an appointment for last Wednesday, but I'm too ill to get out of bed so couldn't go. When I emailed cancelling the appointment I asked what they do for people who are housebound and can't get to the clinic. No reply.

    I've just got a letter with a new appointment - for January 2011!

    How can the NHS claim that they are doing anything at all for people with ME?

    Jenny
  2. That's CRAZY. January 2011! And they are supposed to be prioritising ME/CFS treatment??

    I thought it was bad that I had to wait 8 weeks for a neuro appointment. But... this just breaks all records of under-resourcedness. Would they make you wait that long for an appointment if you had MS or AIDS? I doubt it.

    Rachel xx
  3. garcia

    garcia Aristocrat Extraordinaire

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    Agree with Rachel. It's absolutely outrageous.
  4. Min

    Min Senior Member

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    Jenny, don't just accept this - complain to the hospital that nothing is being done for the housebound. Thei8r 'recovery' statistics never include the house or bed bound that can't get to the daft clinics in the first place.
  5. Jenny

    Jenny Senior Member

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    That's just what I plan to do MIn.
  6. Gerwyn

    Gerwyn Guest

    Jenny do you know any psychologists who could wade into these diagnostic criterea
  7. Jenny

    Jenny Senior Member

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    What diagnostic criteria Gerwyn?
  8. Sasha

    Sasha Fine, thank you

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    Jenny - I got an appointment some years ago with my local NHS ME/CFS service. Although not well enough to go without suffering the consequences, like you I was keen to go in order to be in line for any biomedical treatment that might come along. I turned up at the clinic and the very nice and sympathetic occupational therapists I saw agreed to doing the rest of our sessions by phone. They said that they would have been willing to do this for the first session! There was nothing about that in the appointment letter. I wished I had phoned up and asked beforehand.

    Can you phone them up - don't do it in writing, I'd suggest, it needs a conversation - and explain that you're housebound and ask if they can do the first session on the phone, in the appointment slot that you were originally given?

    ETA: The people delivering the "treatment" (CBT/GET/pacing) at these clinics tend to be occ. therapists - i.e. they're not medics and they don't need to examine you. So no reason that I can see not to do sessions by phone.
  9. Jenny

    Jenny Senior Member

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    Thanks Sasha. But I don't particularly want their 'treatment'. I know it will be useless and I've had CBT before (and used it as a psychologist). I want to go to talk them and give them all my test results that show I have serious neurological and immune abnormalities, and ask them how they will treat me for these problems.

    I also want to ask them to do a range of further tests for various pathogens and immune functioning.

    Lastly, Gabriella Murphy asked the ME support group I help run what our suggestions were for her clinic, so I also want to ask her how she is responding to them.

    Jenny
  10. Sasha

    Sasha Fine, thank you

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    Sorry, Jenny, I didn't realise why you wanted to go. But if it's a normal NHS ME/CFS clinic, are you sure that they can treat anyone for neurological and immune abnormalities? I thought that all of these places just consisted of occupational therapists handing out CBT/GET/pacing with no medical treatment on offer. Having said that, at mine there was a GP higher up the tree at the clinic - but I don't know if he'd have had the expertise to treat neuro-immune stuff. I saw him and he didn't offer me either that kind of test or treatment.

    Would it be worth contacting them to ask if they are actually geared up to treat you for the problems the tests show? If they're just not offering that, it will save you the bother of pursuing that avenue.

    Another possibility might be to ask your GP to refer you to a neurologist and/or immunologist. Again, having said that, I was referred to an immunologist who said that I clearly had a serious immune problem with a constantly reactivating virus and promplty had me referred out of his clinic and on the CFS clinic. On the other hand, all my tests came up normal so you might get further.

    Good luck! It is frustrating to try to find help in the NHS.
  11. Jenny

    Jenny Senior Member

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    Hi Sasha

    If its a ME clinic it should be treating the neuro-immune illness ME.

    I can show them my abnormalities and if they can't attempt to treat them they shouldn't be calling themselves an ME clinic. If all they offer me is psychological treatments I will complain to the hospital and to my MP.

    I've seen several NHS neurologists and immunologists over the last 25 years - they don't want to know. My tests were done privately and I've been paying for treatment up till now, but we shouldn't have to - the NHS ME/CFS clinics say they treat us, so if they don't we need to make a fuss.

    Jenny
  12. Sasha

    Sasha Fine, thank you

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    Hi Jenny - I totally agree with you, all NHS ME/CFS clinics ought to be treating our neuro-immune disease - but because of the NICE guidelines, as far as I know, all they are offering is CBT/GET/pacing. My comments were really aimed at trying to save you putting a lot of effort into getting something that they can't offer - perhaps trying hard to get an appointment and then being disappointed at what they give you. The immunologist that I saw didn't want to know either.

    Good luck with whatever you decide to do next. Mmy feeling is that the problem is not at the practitioners' end, it's at the research end. If biomedical research was done that indicated useful treatments, I think that practitioners would gratefully take them up. So complaining to the hospital might be less help than complaining to your MP and pushing for biomedical research into CFS. I donate as much as I can to the UK charities that fund biomed research.

    All the best! I think we're in complete agreement at being disappointed by the ME/CFS clinics.
  13. garcia

    garcia Aristocrat Extraordinaire

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    Sasha, IMHO we have to push at both ends. We can't just blame the research. There is plenty of biomedical research out there. 5,000 papers or so. The problem is that the nhs has adopted a psychosomatic model for this illness, so those 5,000 papers currently mean nothing. Unless people push for change the nhs won't ever change.

    We could also do with a decent ME advocacy group in this country, rather than the current ME Charities most of which don't represent the patients and cosy up to those in power at every available opportunity.
  14. Sasha

    Sasha Fine, thank you

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    Hi Garcia - I agree there's plenty of research but I'm not aware of any that has shown any treatment to be consistently effective. Too many studies look at a thing once in a small sample and there's no replication attempt.

    I don't agree with your take on the charities, particularly the research charities - I think that they do good work, especially considering how little money they have. I think they try hard to do their best for patients and don't see how they are "cosying up". I think they deserve our support.
  15. garcia

    garcia Aristocrat Extraordinaire

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    Hi Sasha, I don't think being "consistently effective" should be the only criteria by which treatment is offered or denied (after all this is a heterogeneous condition) but rather the cost/benefit, risk/reward. Also its difficult to do large scale studies when there is no government money, and when private pharma is kept away by the psychological paradigm.

    InvestinME does good work. But personally I don't think any charity which panders to the psychological model (which is extremely damaging for patients) can be said to be doing good work.
  16. Sasha

    Sasha Fine, thank you

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    Hi Garcia - I think we're in broad agreement. I'd like to see a real boost to biomed research, which so far has really only come from the ME research charities. They're the ones I support - I agree that any charity signing up to the psychosocial model isn't helping us.

    Meantime, I hope Jenny has good luck with her next step!
  17. Jenny

    Jenny Senior Member

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    After having to cancel several appointments because I was too ill to get to the hospital, I finally got to the Royal Free ‘Fatigue’ Clinic in London.

    I was surprised to find it a mostly positive experience. The doctor spent two hours with me and went through my blood tests results in some detail. The blood tests they do are very limited though – just the standard things plus ANA, EBV and CMV tests. Apart from high cholesterol, which I knew about, I was positive for EBV and she said the results showed a recent (last few months) glandular fever infection which was ongoing. This was odd as my symptoms have been much the same for the last few years. These were the EBV results (no numbers):

    EBV VAC IgM Equivocal
    EBV BNA 1 IgG Positive
    EBV VCA IgG Positive

    I’d be interested in anyone’s comments on these!

    At the end she asked me how I wanted her to help me. I showed her Dr Lerner’s paper on Valtrex treatment and asked her for long-term Valtrex, but predictably she said she could only give me a private prescription. I couldn’t afford this. I also asked for more minocin and plaquenil – I got these but she’s only allowed to give me four weeks of each.

    I also asked if she would refer me to an infectious disease specialist and I’m going to get an appointment after she’s returned from the NIH XMRV conference (very good news that she intends to go!).

    Apparently the Fatigue Clinic have so many referrals that I’m going to have to wait a year for a follow-up appointment!

    Overall, I got the impression of someone who knows there’s a big problem, is sympathetic and keen to find effective treatments, but is massively constrained by NHS budgets and the NICE guidelines. We must keep up pressure on government for more funding for ME services and also make sure that the next NICE review of treatments is unbiased and takes account of recent research.

    Jenny
  18. helsbells

    helsbells Senior Member

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    Jenny I am very surprised & somewhat heartened by your treatment (I mean not your actual treatment but you know what I mean..) That she has enough curiosity to actually attend the conference is amazing as I have only met with blanket disinterest. We can but hope the tide is beginning to turn, even if only a little, Good Luck :)
  19. Sherby

    Sherby Sherby

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    I've been seeing my NHS CFS National Clinic neurologists on and off the last 20 years. I need them because my GP does not know what type of meds to give me otherwise i would not go as they do believe that CFS and ME is not neurological . I have to see them every 6 months. When WPI published i asked my neurologist what her view was. She with a big smirky grin said that many new finds don't pan out. She said she would be most surprised if it did. Last time i saw her she was about to retire. I wonder why?
  20. Esther12

    Esther12 Senior Member

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    Great news Jenny.

    From what I've read, I think my experience at one of these clinics was especially bad. The approach to CFS really seems to vary depending on who is heading up a certain clinic. Wonderful you found one that could be helpful (however marginally).

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