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United Kingdom: NHS East Kent Hospitals University - CFS/ME

Discussion in 'UK clinics and doctors' started by Sly Saint, Jun 28, 2022.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Chronic Fatigue Syndrome (CFS) / Myalgic Encephalopathy (ME) and Physiotherapy: Information leaflet

    pdf link here:
    https://www.ekhuft.nhs.uk/patients-...ts-childrens-physiotherapy/?entryid103=440305


    @PhysiosforME
     
    Last edited by a moderator: Jun 29, 2022
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  2. Creekside

    Creekside Senior Member (Voting Rights)

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    "We who make money selling physiotherapy services have a hammer. ME looks like a nice profitable nail."
     
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  3. rvallee

    rvallee Senior Member (Voting Rights)

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    It's really not. No one thinks of being sore as a symptom and the fatigue after exercise, at least to me and many people, is very pleasant, satisfying.

    This is as absurd as saying that it's normal to feel bloated and have severe abdominal pain with explosive diarrhea after eating. It's not. To claim otherwise is blatant lying.
     
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  4. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    This surface understanding of ME is discouraging. Especially since the changes to NHS info.

    It is concerning that these hospital staff are not following NHS guidance on ME.
     
  5. Midnattsol

    Midnattsol Moderator Staff Member

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    2,571
    Sadly, quite a number of pwIBS will have heard their symptoms are completely normal. I'm pretty sure I've mentioned this patient I met who had had diarrhea for five years which his GP had kept telling him would go away by itself. And I'm sure the GP thought is did as obviously one stops bringing it up when there is zero response.
     
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  6. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Agreed. The dismissal and omission of serious symptom reactions to exertion is out of date and out of touch to say the least. This needs to be reported to authorities.
     
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  7. Ali

    Ali Established Member

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    :jawdrop: Date of production: March 2022

    Where have they been?!!

    This is exactly the sort of misleading crap in pamphlets I was given at Oxford back in 2016/2017. Sadly I trusted them & Graded Exercise my way into Ill health retirement, bedbound + wheelchair.
     

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  8. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    My response to exertion, is to feel faint, and have burning muscle pain within a few minutes. I also feel weaker, become uncoordinated and brain foggy.

    I guess that's a "normal" reaction to exercise/exertion. :mad:
     
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  9. rvallee

    rvallee Senior Member (Voting Rights)

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    The authorities wrote that. Any report would be sent to... them. Tiny glitch in the system.
     
  10. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Thanks for your reply @rvallee.

    Granted, the "authorities" are the physiotherapists at that hospital. However, I would hope there is some monitoring function by NHS, or other higher level organization.

    Although, having experienced numerous problems with the Canadian health care system, I am doubtful that other health care systems would be any more effective in rooting out misinformed, inappropriate treatment.
     
  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Such things are a thing of the past, I fear. Everyone at the top has lost the plot since the introduction of the 'internal market'. Fortunately there are one or two people like Peter Barry and Ilora Finlay, who care, but beyond that it is mostly self-driving robots.
     
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  12. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Would you be able to message me a rough outline of your experience at the Oxford CFS clinic?
    This is exactly the kind of experience that needs to be fed in to the current DHSC meetings.

    I thought exactly the same about the date of production, also not due for update until 2025?
     
  13. MEMarge

    MEMarge Senior Member (Voting Rights)

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    This is great @Sly Saint, just the type of info needed to show the DHSC that clinics are ignoring NICE GDL
     
  14. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Oh boy. Well, it seems to be pretty much the same here in Canada.

    ETA: I googled "internal market". The European/Common market came up. But do you mean Brexit? Maybe not supposed to get into this political stuff. At any rate, it's all a mess everywhere.
     
    Last edited: Jun 28, 2022
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  15. Andy

    Andy Committee Member

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    https://en.m.wikipedia.org/wiki/NHS_internal_market
     
  16. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    "• Aerobic exercise is an activity that increases your heart rate and makes you feel breathless.
    This is a good thing! Research has shown that a gradual increase in this type of activity can help people recover from CFS. Aerobic exercise includes swimming, cycling, fast walking, or jogging as well as some light competitive sports."
    I suppose patients/those who represent patients could raise this with the APPGs [M/CFS & Long Covid (LC) - since those with LC are likely to be subject to the same approach] and Sajid Javid [Minister/Secretary of State for Health & Social Care - who actually does care]. Another thing, I've suggested in the past, is that surely using unevidenced treatments leaves the Health Trust open to claims for compensation - perhaps highlighting that risk to the Health Trust will highlight a potential financial/reputational risk ---- nothing focuses the minds of senior managers more than thoughts of losing their "performance bonus" through foreseeable legal claims/investigations into the use of unevidenced treatments ----

    @adambeyoncelowe
     
  17. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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  18. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    I represent our local ME support group at one of the County’s Partnership Boards
    [e.g.https://www.gloucestershire.gov.uk/health-and-social-care/disabilities/partnership-boards/]

    I learned today that the Health & Care NHS Foundation Trust has a “NICE Guidance Manager”. They are responsible for ensuring that NICE Guidance is followed and, I believe, East Kent Hospitals NHS should be challenged on this “information” leaflet.

    Has anyone referred it to ForwardME or MEAssociation? - I can message them, if that is required altho @PhysiosforME may do this?
     
  19. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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  20. Wyva

    Wyva Senior Member (Voting Rights)

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