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CFS clinic? What is it?

Posted , 5 users are following.

donna63932
donna63932

Visited GP today and he referring me to CFS clinic but I do not know what this means? Anyone know  ? 

0 likes, 10 replies

10 Replies

  • bencooper
    bencooper donna63932

    Posted

    Depends where you live but you will probably be offered cognitive behavioural therapy and graded exercise therapy. It would be nice if you were thoroughly assessed to see if you are really suffering from something else which your GP hasn't noticed.
  • sally_14743
    sally_14743 donna63932

    Posted

    Chronic fatigue syndrome clinic. 

    Often cfs/m.e clinic .

    they will access you and diagnose you with CFS if they think you have it. And if not refer you to another specialist for what they think you do have .

    they get your whole medical history spend time chatting to you . Then look at all your blood tests and other tests then they use n.i.c.e guidelines to diagnose you. 

    They offer drugs for symptoms , physiotherapist and occupational therapists . There aim is to help you recover its slow but they should .

    1. Make you feel you have a diagnosis .

    2. Ease your symptoms 

    3. Offer you a plan of treatment to help you recover.

    my hubby is improving under their supervision has an occupational therapist come to the house once a month . 

    Pits slow but going the right way. 

    Hope it helps you too.

    he was tearful when diagnosed as he felt acknowledged medically . GPs are not reassuring .... A specialist knows their stuff 

    • Fidd
      Fidd sally_14743

      Posted

      "There aim is to help you recover its slow but they should."

      I thikn that you have been quite seriously misled. There is no evicdence to support anything like this claim, but unfortunately, there is a long history of clinicians manipulating patients with inaccurate claims about the efficacy of their interventions.

      "A specialist knows their stuff"

      When it comes to ME/CFS, there isn't much stuff to know, and all to often this is seen as an excuse to misrepresent the evidence.

    • sally_14743
      sally_14743 Fidd

      Posted

      Hi Fidd sorry if my comment upset you. 

      As a carer I have to keep positive .

      i know that CFS is misunderstood but if there is a chance my husband will be helped to recover I am up for it. 

      If he doesn't I am here for him too but my biggest concern is stopping him getting depressed helping him live with this horrid illness and still enjoy life . And not lose hope that he could recover. 

       

    • Fidd
      Fidd sally_14743

      Posted

      Hi Sally - you didn't upset me, I was just concerned that you were being misled and this could end up misleading others. No need to apologise at all. For important claims like these I think that it's always worth trying to ask for evidence so that you can make informed judgements.

      Whether you want to be 'positive' or more rational is totally up to you, but in the long run, I think that trying to put a positive sheen on things often makes people's live more difficult.

  • JulieBadger
    JulieBadger donna63932

    Posted

    Hi, I went to one here in Norfolk.  I had to fill in their questionnaire and post back. Once they read that they then invited me to attend because it suggested I had ME/CFS. Once there I spent 40minutes going over my symtoms & history, my hubby helped discribe unvoluntary movements I also have.  She diagnosed I'd had ME/CFS far longer than I thought. Asked the doctor for more tests, prescribed certain medicines (needs to know the meds on when you go). Asked for a referal to check out the Invol. movements as they weren't ME/CFS.  She was right they are Functional Movement Syndrome we now know. Set-up ME/CFS Occupational Theropist appointments. I've already had CBT. Not graded exercise. Said yes you got it, bye. we're here if you need us.

    They are the official ones that give you the title of ME/CFS I believe. So if you are trying to claim PIP or help at work you probably could do with their piece of paper. smile

  • donna63932
    donna63932

    Posted

    GP spent long time  testing for many things aswell as treating existing. But i am open to advice and support 😀😀😀😀
  • Fidd
    Fidd donna63932

    Posted

    It can be really variable. There are a few okay clinics, but there is also a lot of trouble with clinics staffed for of useless staff who have to try to justify their sallaries with exaggerated claims about their expertise and knowledge.

    I think that a helpful way of judging their ethics is to ask what they are doing to help see the release of the results for the PACE trial's protocol defined outcome measures. This was a very large and expensive trial which was looking at the efficacy of CBT/GET, and had laid out when the trial was underway how their outcomes should be released. They then refused to release these results, and instead massaged results to make their treatments seem much better than they trule were.

    If a clinic is providing CBT/GET to patients and yet not working for the release of the PACE trial's protocol defined results then I think that they are behaving in a really immoral manner, and are clearly more interested in their salaries than in being honest to patients.

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  • JulieBadger
    JulieBadger donna63932

    Posted

    In my personal experience anything to do with ME/CFS medically has taken along time.  Don't know if it's because there is alot of us?  Maybe because there are only so many specialists in it?  The main way to dignose us is to rule out everything else.  So I guess blood tests, scans etc take a while cos we aren't considered to be life-threatened in the short term.  Although I'm not sure if it is worse leading up to the diagnosis or the feeling afterwards that there isn't an amazing quick cure.  I personally found that quite hard.  Knowing that they couldn't quickly make the symptoms all disappear was quite tough.

    However, once you are officially diagnosed the Gp's then are guided which medicines to try you on.  Which should help you.

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