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Slides now up for 3 of 4 talks (Unger (CDC), Chu & Nacul) at American Public Health Association Special Session in Epidemiology

Discussion in 'General ME/CFS News' started by Dolphin, Nov 10, 2017.

  1. Dolphin

    Dolphin Senior Member (Voting Rights)

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  2. Esther12

    Esther12 Senior Member (Voting Rights)

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    It's hard to judge from just slides, but the Luis Nucal presentation seemed to be promoting some form of OT led 'management' for patients. At the moment, I think that it would be better to put that money into further research, rather than almost worthless 'care'.

    https://apha.confex.com/apha/2017/meetingapp.cgi/Paper/395150
     
  3. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Seemed to be some work done on a review of existing NHS service provided in east of England and a proposed upgrade which actually includes involvement of a Dr/Consultant for ME patients. This is the exception in those clinics currently but could be a significant step up in many areas and mean people get looked at for OI. there's a table that shows priorities for change which I'm assuming is based on focus groups - they have different priority scores but providing service for severe patients comes out top. This would be a significant change from the status quo. Obviously in a lot of areas there's never been or no longer is a clinic. So they would be starting from scratch.
     
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  4. Esther12

    Esther12 Senior Member (Voting Rights)

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    Yes, it did sound like he was pushing for improvements (hard to say from just the slides), but I'm wary of any assumption that we should be routinely paying OTs to do anything for CFS patients.
     
  5. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Agreed most of these clinics only have OTs and physios. I think it looks like they would be handling people with chronic fatigue in the proposed structure. Which is OK if the don't have PEM then working on activity may be appropriate.
    But yes a few questions are begged.
     
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  6. Scarecrow

    Scarecrow Senior Member (Voting Rights)

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    Naïve question, probably. Why do you think that? Is it based on your own experience or on something else you know about.

    One the face of it, I would have expected an OT to be a positive experience, provided they focus on assistance aids rather than assuming that the pwME will inevitably become more mobile from exercise.

    From my mother's (elderly not ME) experience, I've found them to be a bit of both. St Columba's Hospice are in the first camp and the NHS the second, so I've probably answered my question for you!
     
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  7. Mithriel

    Mithriel Established Member

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    I had an OT who made all the difference to me. For one thing she pushed for me to get a wheelchair which I had never considered and which then transformed my life. She also helped me get an electric bath seat, toilet stand, stand to help me out of bed, transfer sheet, handles round the house, all sorts of things which made life easier.

    The BPS people have screwed everything up with their theories but these support services make a lot of difference to things like Parkinson's and MS so we should be getting the same. They often work alongside consultant services and specialist nurses. If they are already in place as the biomedical evidence comes in, and it is now possible change will come, we will be in the position we should have been all along; treated like any other neurological, disabling disease.
     
  8. Valentijn

    Valentijn Moderator Staff Member

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    Occupational therapy is rooted in and focused upon helping people to undertake an occupation. It can have a lot of behavioral focus as well, which is no doubt well-intentioned in many cases, but can also be used abusively in a BPS framework.

    Parts of it are useful and can be essential in supporting patients. But it can certainly go too far, and it doesn't make sense for OT's to lead any ME/CFS service. A service should be led by a specialist doctor, with OT's providing support in creating or seeking accommodations for illness and disability when indicated.
     
    Last edited: Nov 13, 2017
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  9. Trish

    Trish Senior Member (Voting Rights)

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    There seem to be 2 different varieties of OT's. Or at least 2 completely different roles for them in ME. The service I had some experience of was run by OT's who did groups and individual sessions for ME patients based around explaining pacing, what can set off relapses and using activity and symptom diaries to help people with pacing.

    It was sort of OK, but they made a bit of a meal of what could have been explained in 20 minutes and a leaflet, and didn't seem to know what to do with the activity diaries - it seemed to be left to the patient to work out what they meant and how to make adaptations.

    I think the whole thing could have been much more efficiently handled in a much shorter time, especially if they had provided patients with activity and pulse rate monitors like Fitbit, and shown how to use them.

    When I asked about equipment/disability aids the OT was very dismissive and said that wasn't her role, that was for the uniformed OT's. They didn't provide that service, not did she seem to be able to refer people.

    The really big problem that has arisen in my local area is the OT's getting drawn in to LP and NLP type of 'treatment' and going wildly off at a tangent into 'recovery focused' stuff. As far as I know this is under the 'supervision' of some sort of consultant, but I'm keeping well away from it. See this thread:
    https://www.s4me.info/index.php?thr...tion-of-a-rebuilding-your-life-programme.761/

    The OT I saw in the past who did the pacing stuff seems to be fully involved in this nonsense. My problem with OT's running services is that they don't have to knowledge base to understand just how stupid and damaging this stuff is.
     
  10. Esther12

    Esther12 Senior Member (Voting Rights)

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    Their can certainly be some really good and compassionate OTs out there, who I expect would be unlikely to harm anyone, while being able to help many. But from what I've read of OTs specialising in ME/CFS, there are a lot of reasons to be cautious. Also, I've not found any specialist OT knowledge of ME/CFS that seems particularly valuable. I'm always wary of assuming some group should be paid for their expertise when there isn't any good evidence that they have valuable expertise, and a lot of the info on ME/CFS I've read from OT sources has been worrying.

    This could be an example of why my approach to medicine and support for ME/CFS can be misguided. Its good to be reminded how different all our experiences are, and how there are people working within the NHS who do not let the junk-science and prejudice around ME/CFS prevent them from providing useful support for patients.

    I've never had any advice from a medical professional I consider to have been useful, but lots of other people are in very different circumstances to myself. If we could bring about real change to how ME/CFS is thought of/discussed/taught within the NHS then I expect routine OT support could be a useful thing for many people with ME/CFS.
     
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