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Physios for ME

Discussion in 'News from organisations' started by PhysiosforME, May 16, 2020.

  1. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

    Messages:
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    We are a group of physiotherapists in the United Kingdom with a special interest in Myalgic Encephalomyelitis ("ME").

    Our aims are:
    - to educate and inform physiotherapists about ME and appropriate management strategies
    - to support people with ME to feel confident in seeking physiotherapy treatment
    - to support physiotherapists treating people with ME in providing safe and appropriate treatment
    - to further explore treatment options through research and discussion in order to better understand what does and doesn't work for this patient group

    We are a virtual group who work together in our spare time - we will post news and updates on this thread

    You can find out more about us on our website https://www.physiosforme.com/

    Or follow us on twitter https://twitter.com/PhysiosForME or on our facebook page https://www.facebook.com/PhysiosforME/
     
    Ben H, junkcrap50, chelby and 47 others like this.
  2. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Oh that every group of medical and medically related professions had a group as on the ball and as relevant as Physios for ME.
     
    Atle, Graham, Frankie and 23 others like this.
  3. Midnattsol

    Midnattsol Moderator Staff Member

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    Thanks for your work, I wish dieticians would do the same :)
     
  4. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

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    chelby, Nellie, Rosie and 30 others like this.
  5. Barry

    Barry Senior Member (Voting Rights)

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    Rosie, Kitty, Frankie and 11 others like this.
  6. JemPD

    JemPD Senior Member (Voting Rights)

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    Kitty, Frankie, PhysiosforME and 8 others like this.
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Location:
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  8. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

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    287
  9. obeat

    obeat Senior Member (Voting Rights)

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    @PhysiosforME I,have been in contact with the lead physiotherapist drafting the Covid19 rehabilitation in N Ireland, and have sent through all your stuff. He says it's been extremely useful so hoping to see the final result.
     
    Rosie, Atle, Sarah Restieaux and 26 others like this.
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Location:
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    piece on MEA website
    Physiotherapists taught three little words for the care of people with Post-Viral Fatigue Syndrome | 3 June 2020
    https://www.meassociation.org.uk/20...r-the-care-of-people-with-me-cfs-3-june-2020/
     
  11. Tia

    Tia Senior Member (Voting Rights)

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    This is brilliant @PhysiosforME - what good news! Thank you!!
     
  12. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

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    I love this -thank you for sharing our stuff
     
    Rosie, Atle, adambeyoncelowe and 14 others like this.
  13. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

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    287
    Today we posted our first ever podcast - you can see the whole team talking about post COVID rehab, post viral fatigue syndrome and ME.
    Dr Charles Shepherd from the ME Association was our guest

    https://www.youtube.com/watch?v=OyFNVayKYCg


     
  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    my only criticism is the use of 'boom and bust' (used by yourselves and CS) which is a term often used by the bPS 'researchers'.
    This tends to be used by them as an 'explanation' for PEM.
    There is no 'boom'; rather it is that, having felt so very unwell, a patient feels less unwell, thinks therefore that they can do what they were able to do before they fell ill, and do more than they are actually capable of doing, often ignoring any warning signs. Which then leads to exacerbation of the condition, relapse and eventually PEM (not necessarily the next day).
     
    andypants, Anna H, Simbindi and 12 others like this.
  15. Sean

    Sean Senior Member (Voting Rights)

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    Sometimes you can't pace nice and evenly. Some activities need a minimum amount of effort to make them worth doing. Not much value in only going halfway to the shop.

    That is part of managing it all. Learning where and when to push it, and manage the payback the next day.

    There are no guidelines or teachers for that. It is mainly just lots of experience.
     
    Last edited: Jun 15, 2020
    meg22, MEMarge, andypants and 15 others like this.
  16. Barry

    Barry Senior Member (Voting Rights)

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    And also the use of "boom and bust" suggests that the optimal operational mode for a pwME is no ups and downs at all, but a graph showing constant, flat daily-average energy expenditure rate over time; and the implication that is how pacing should work. But not so at all; not for everyone anyway.

    My wife paces extremely well, and seems to have a natural talent for it. But her quality of life relies heavily on sanely pushing herself to achieve some degree of what she once was able to do, but knowing she will pay for it later. If she tried to avoid PEM altogether then she would lose out hugely on the quality of life she does manage. She has basically found an oscillatory energy expenditure waveform where the price she routinely pays is acceptable to her, for the gains she routinely achieves. I'm certain it's highly disproportionate - if she halved her energy expenditure waveform excursions, I'm confident her quality of life would reduce to way, way less than half what it currently is. And "acceptable" by no means means it is all OK, nothing like, but is a balance she has arrived at given no better choice.

    This is going to vary considerably according to illness severity and individual life balance. But understanding this is crucial for anyone trying to understand what life is like for a pwME.
     
    Last edited: Jun 12, 2020
  17. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    [Bolding mine]

    Agreed but as often as not it's not necessarily a choice. Lack of support be it financial or physical often means that if you do get a window when you are able to do something - shower, get in to a docs appointment, put a laundry load in, or simply brush your teeth, you have to grab it with both hands.

    The BPS boom and bust theory is in some ways a self fulfilling prophecy. They skate over the fact that witholding appropriate support because it reinforces false illness beliefs puts the patient in the position where they have less control over how much they can do. As many don't have any support they have to do the essentials when they can, even though it may cost them dearly by way of PEM later.
     
  18. Kitty

    Kitty Senior Member (Voting Rights)

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    I wonder whether it's helpful to compare the pacing phenomenon to the lives of people who're not ill?

    Every now and again my friend goes out with work colleagues and makes a night of it, knowing she's likely to pay for it with a hangover. Another does charity marathons, knowing that he's going to be knackered and aching for days. People who've got a big day ahead prepare by having an early night, or if they've had a hideous week at work, they cancel their weekend plans and blob out in front of Netflix to recover.

    Nearly everyone does pacing in some form or other, as a normal part of life. In situations where they can't, such as after having a baby, their physical and mental health often takes a battering. We are different, because our payback is from having a shower rather than going on a stag weekend in Ibiza, and we also need much longer to recover – but is it any more 'boom and bust' than a healthy person living a normal life?
     
  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    yes; what they constantly refer to as a 'vicious cycle/circle' that they say contributes to perpetuation of illness, but which totally contradicts the 'fear of activity' part of their deconditioning theory. Hence the reason, I think, for the latest paper from the PACE trial authors where they attempt to identify several different activity pattern sub-groups. Still trying to prove that they are, and have always been right.
     
  20. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

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    Thanks for the feedback - interestingly it is one of the phrases that really helped my son understand what pacing meant.
     
    MEMarge, andypants, Simbindi and 3 others like this.

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