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Lessons from ME/CFS: Finding Meaning in the Suffering
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Leeds NHS M.E/CFS clinic

Discussion in 'General Treatment' started by justy, Nov 14, 2013.

  1. justy

    justy Senior Member

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    Anyone been here? any reports. Helpful, or CBT graded exercise nonsense?

    Thanks,
    Justy.
  2. wdb

    wdb Admin

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    They have a website but it is a bit non-specific on the treatment front. Sounds like probably the CBT end of the spectrum to me.

    Valentijn likes this.
  3. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Yep, your guesses seem right:

    Valentijn likes this.
  4. mermaid

    mermaid Senior Member

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    I was in personal touch with someone who had a dreadful time there last year. In the end the regime she was given made her feel terrible (gradual increase in sitting up/movement etc when she didn't feel well enough to do so).

    She was devastated when they decided that she didn't have ME/CFS at all ..... or should I say CFS as they wouldn't have called it that. They gave her the new diagnosis of MUPS and she was really afraid that it would affect her benefits applications which she had fought so hard to get. She told me that there was another woman there who was also having a bad time.

    In the end she discharged herself having told them she would continue with what they had taught her but having no intention of doing so. Her husband supported her as he could see how distressed she was by their approach.
    Snow Leopard and Valentijn like this.
  5. justy

    justy Senior Member

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    Thanks for all the re[lies.
    @mermaid MUPS?
  6. themjay

    themjay

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    This is what I posted a couple of years ago about my experience with them:

    As one of the UK’s oldest fatigue services, it too is located in an odd juxtaposition of dilapidated psychiatric ward and painfully inadequate attempts to modernise the areas patients initially encounter. Access for my wheelchair was poor with cars parked over the only path I could use and the lift was barely able to accommodate my carer and myself - the fatigue service was located on the first floor at least 1 km from the main carpark and 600m from a patch of rough ground that doubled as an overflow. It shared waiting rooms with the gender reidentification and eating disorder service.

    I had been referred here following a visit to an immunologist, who claiming to have a special interest in CFS/M.E. was very reluctant to carry out blood tests as he assured me they would all be normal and that this was the correct course of treatment.

    I have been registered disabled with M.E. for seven years and have always regarded with deep suspicion “therapy” offered by the National Health Service. The simple fact is that lack of personal resources mean that I am desperate for any relief. I think that this is a crucial point in the U.K as any state benefits are heavily dependent on opinions of health care professionals within the system – I feel that this is something I have to be seen to be doing just to qualify for day to day financial support.


    I had to travel 90 minutes to the appointment which was with the aforementioned immunologist and a liaison psychiatrist. The initial written questionnaire was solely weighted to fatigue and mental health symptoms with NO mention of any other symptoms. The room was stark and they positioned themselves against a bright window – it felt more like a job interview than therapy consultation! Knowing my limited energy, nethertheless the session lasted 2.5 hours. Needless to say I was punch-drunk by the end. There was lots of talk of proven evidence based treatment and holistic viewpoints but it all felt forced and was CBT/GET/Pacing dressed up in tactile New Age terms. Their opinion on holistic medicine also differs from mine – it would seem they merely mean they use drugs to treat both the mind and the body! I tried to pinpoint concrete therapies that they would be using such as for pain relief and was advised they had evidence based good results with low dose antidepressants and an anticonvulsive drug – I’d heard it all before by this point. I asked if any hands on therapy such as osteopathy was offered as this is something I find helpful but was told this sort of treatment was considered only short term help and therefore not part of the ethos of long term recovery (unlike a daily dose of epilepsy drug I presume) Budgetary restrictions were also cited. The staff obviously do genuinely want to help they assured me that no one was beyond assistance; it just seems their hands are tied by the framework they operate within.


    The “interview” concluded with the assessment that I was obviously too ill to attend regular therapy sessions at the unit and would need to be treated by their home team. However this needs funding approval, so my doctor has to refer me again to see whether this will be granted. Another three-four month wait is on the cards and I didn’t even get a nice glossy brochure as souvenir of my day out…


    I might now add that when the team visited me at my home they were intent on drawing diagrams etc explaining my energy expenditure. They were disinterested when I told them fatigue was only part of my illness and I had many more severe symptoms. After three months of this I was simply fighting them and dreaded their visits. It finally transpired that although they constantly assured me that they believed I had a physical illness in fact their agenda is to treat a mental condition. My final heated telephone conversation when I was asking if there were any more medical tests I could have went like this:



    THEM “You have had all available tests, all were negative. What does this tell you about the situation?”

    ME: “That I have not had the correct tests or that the correct tests have not been developed? (How naive)

    THEM “Or that there is nothing physically wrong”

    ME (shocked) “I don’t think I want to continue with the programme”

    THEM: “Well if you feel in the future you have resolved the emotional issues with the treatment you may wish to return.”

    And that was that – I felt very hurt and basically abused for several weeks. I now believe that there is no longer even and immunologist involved.
  7. maryb

    maryb iherb code TAK122

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    @themjay

    shocking - and people are saying things have moved on - get real folks this is what is happening in the NHS NOW
    justy, peggy-sue and Valentijn like this.
  8. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Sigh, it would be better if we saw things like that coming. But because one is desperate often ends in situations that *might* help, even though deep inside you know because of clues how it will probably turn out. :(
  9. justy

    justy Senior Member

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    @themjay thank you so much for spending your time and energy in explaining your experiences with the service. I think I have all the evidence I now need. I hadn't expected it to be a good service -is there anywhere that is in the UK? -but had hoped it might be useful. Seems not.

    All the best,
    Justy.
  10. mermaid

    mermaid Senior Member

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    MUPS t= medically unexplained physical symptoms = 'it's all in your head dear' = treat the mind and the body will follow. :(
    maryb and justy like this.
  11. tandrsc

    tandrsc

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    I wanted to say that it isn't all bad in the NHS. I've been attending the pilot clinic in Edinburgh (they only have funding for an initial 2 years).

    At no point did they imply or suggest it was all in my head, far from it. They don't offer any medications, but they offer a very useful service in the form of one-to-one tuition on your pacing and practical advice about things like relaxation techniques and sleep hygiene.

    They have a physiotherapist on the team, but they don't force any exercise on you - it's on offer if you ask for it. I wanted to try and build some strength in my arms so they gave me some very gentle exercises and made it very clear that I should do very little and only if I felt up to it.

    The aim is to improve your quality of life by better managing your symptoms and living within the energy limits that you have.
    Last edited: Nov 25, 2013
    justy likes this.
  12. Valentijn

    Valentijn Activity Level: 3

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    Do they explain why they don't offer any medications? Some are quite helpful. Do they arrange visits with specialists for various ME/CFS issues, such as autonomic dysfunction?
  13. alex3619

    alex3619 Senior Member

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    Scotland it seems is far ahead of England on this issue. Or perhaps just more resistant to babble?
  14. ukxmrv

    ukxmrv Senior Member

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    It's only useful if you need help with Pacing or relaxation or "sleep hygiene". Even very gentle exercise makes me worse and I'd rather spend my energy on bathing or hair brushing or cooking or mending my clothes.

    A clinic that claims to be treating PWME should be able to offer services for all ranges. People should not be excluded because a clinic chooses not to offer medical drug therapies.

    I'd rather the NHS spent money on the drug therapies that I have to buy privately than lifestyle advice that we early patients had to teach them like pacing and things I've tried decades ago. Some of the sleep "hygiene" advice I've been told by the NHS is just plain factually wrong. Relaxation does nothing for me.

    When a NHS clinic refuses to treat patients with useful drugs and doesn't provide useful tests or investigations or treatments for common symptoms and all one gets is lifestyle advice then yes, I'd judge that it is pretty close to saying it is all in your head.

    Access to the immune modulators I need to pay for and the antiviral drugs that help me would improve my quality of life more than anything they can offer.
    Last edited: Nov 20, 2013
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  15. tandrsc

    tandrsc

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    It's only a pilot clinic, so they are still finding their feet. If they get funding to continue they may extend their services. There is a specialist service at another hospital that would currently deal with the medication side of things and referrals to things like other specialists. It was that specialist that referred me to this new pilot clinic.
  16. ukxmrv

    ukxmrv Senior Member

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    I think you will find that this is a AFME attempt to introduce English style "fatigue" clinics in Scotland and like there you will lose your other services and end up with just the NICE type of clinic. That's why patients in Scotland tried to stop this opening.
  17. tandrsc

    tandrsc

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    I don't think we should bash 'fatigue' clinics too much. We are not the only chronic illness suffers that have to battle crushing exhaustion that robs us of our lives - I have friends with rheumatism and chron's who also suffer badly. Granted, those illnesses get proper drug treatment (as we should) but I'm not going to turn down coping strategies that I might not have thought of.

    I'm going to take all the help I can get. After decades of illness, it's nice to not be belittled or ignored for a change.

    I'm going to be optimistic and hope that we get drug therapies as well in future.
  18. Valentijn

    Valentijn Activity Level: 3

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    The problem is that practitioners will not openly disagree with your view of your disease, and will validate your experience of your symptoms. But they still (almost always) believe those symptoms are essentially psychosomatic or the result of deconditioning.

    So what can start off with sympathy, validation, and helpful lifestyle changes to accommodate disability, can quickly turn into "you should be doing more/getting out more". Then "you shouldn't use a wheelchair or mobility scooter" followed by "you are not a patient" and "doctors cannot help you".

    I would strongly advocate that anyone at a "fatigue" or therapy-based CFS clinic insist on a clear answer regarding the practitioners' beliefs about the causation and perpetuation of ME/CFS. It might be awkward, but it can spare a lot of grief and wasted time in the long run. It's not fun when you hit the point where you realize that the people you trust have been deceiving you and they think that you just need to stop believing you're ill.
  19. Esther12

    Esther12 Senior Member

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    Having read more about the disingenuous and manipulative way that some believe CFS patients should be treated, in order to 'build a collaborative relationship' or whatever, I'm deeply sceptical of anyone making money from CFS in the NHS. Until there have been pretty radical changes, and a lot of quacks fired, I want to stay as far away from any 'fatigue clinic' as is possible.

    I think that patients should be spoken to as honestly and clearly as possible, and do not want to play a part in any system which does not recognise the importance of this.

    edit: Also though, this is very much my personal choice. ~Other people have different values and preferences, and unfortunately, there are pretty limited options available to people with CFS. I would say that it's worth remembering that those making money from CFS who are not (for example) also calling for the release of the PACE trial's protocol defined outcome measures have made moral decisions about how patients deserve to be treated, and this should affect how you view their 'caring' toward you.
    Last edited: Nov 20, 2013
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  20. peggy-sue

    peggy-sue

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    I did once ask my gp outright to simply lay his cards on the table and tell me whether he believed ME is a psychological illness or an organic disease.

    He refused to answer, kept sitting on the fence.

    That was enough to answer my question, but he could have saved me the effort of having to listen to his speil by simply being honest.
    MeSci and Valentijn like this.

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