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The M.E. trust (UK charity)

Discussion in 'General ME/CFS News' started by Sly Saint, Mar 4, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Anyone know anything about this charity (apart from Countess of Mar is one of their patrons).
    They are on the NICE stakeholders list.
    I only found it because it gets mentioned a lot in this Parliamentary written evidence from
    c. 2014.

    https://publications.parliament.uk/pa/cm201415/cmselect/cmhealth/401/401vw83.htm


    price list for services:
    "Fees
    Lyn can arrange an initial telephone call with Dr Paul Worthley to assess the best way forward, up to 30 minutes being free of charge. Subsequent telephone consultations with Dr Worthley, are charged at a rate of £20 per 15 minutes.

    Dr Worthley can sometimes offer home visits, usually within the south/south-east of England. Depending on travel time, the cost is from £250.

    Counselling or emotional support with Ingrid Holmes or Linde Horseman is £20 for up to half an hour. Further information is available here.

    Spiritual accompaniment with Rev David Flagg is free for the first six sessions.

    A physiotherapy consultation with Sue Pople, by phone, is £20 for a 15 minute call. A home visit, usually within the south/south-east of England, would be from £180 .

    If you are in financial need please enquire about bursary support.

    "This model of care is ideal for the treatment of people with ME/CFS. The service should be expanded and a centre of excellence established, providing management support for people with ME/CFS".
    Dr Luis Nacul, Clinical Senior Lecturer London School of Hygiene and Tropical Medicine], Director CURE-ME, Principal Investigator UK CFS/ME Biobank
    "

    their website: https://www.metrust.org.uk/

    eta: mainly wondering what their treatments are, anyone had any experiences of it. They rarely seem to come up on the political side of things but do report regularly (on their site) on Forward ME.
     
    Last edited: Mar 4, 2018
    Barry, Indigophoton and Jan like this.
  2. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Yes they offer services and sometimes fund help. I've only known of them in the context of severe ME , they helped a well known sufferer stay in Burrswood when it used to be a rare inpatient option. Dr paul worthley used to work at Burswood hospital and run the ME section. Before Burrswood closed to PWME, they were trying to fund beds there, now it's more help at home it seems. I think they're good and trying to fill a void but I'm totally against the idea severe ME care should be left to the charity sector when it can't raise proper funds and the NHS is just not bothering. I would prefer to see campaigning to get NHS to pull up socks eg dr Bansal is allegedly now retiring but a few years ago he tried to set up an inpatient care and research centre that didn't get anywhere, his Surrey service was also restricted in the support it gave the severe because of funds which I think is unacceptable.
    They attend forward ME meetings I think I saw.
     
  3. April

    April Established Member (Voting Rights)

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    Didn't Hannah Clifton start this charity?
     
    Barry likes this.
  4. Eagles

    Eagles Senior Member (Voting Rights)

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    MEMarge likes this.
  5. chicaguapa

    chicaguapa Senior Member (Voting Rights)

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    I'm interested in this too as I came across this paper https://academic.oup.com/ptj/article/90/4/602/2888236 and was looking for a physio to discuss it with. I was loathe to part with that kind of cash though without any reviews and couldn't find much about them.
     
  6. Trish

    Trish Moderator Staff Member

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    I've had a quick look at the paper you found, @chicaguapa. The authors include Mark Van Ness and others who developed the 2 day cardio pulmonary exercise test that demonstrates that people with ME have impaired aerobic energy metabolism.

    They developed 'exercise' treatment that is based on very careful pacing using heart rate monitoring and any 'exercises' being strictly restricted to very short low intensity exercise that stays within the anaerobic threshold. This means exercise duration less than 2 minutes.

    I notice the paper is from 2010. There is more recent stuff from them, including some videos such as this one.



    There is a thread here on heart rate monitoring that might interest you.

    https://www.s4me.info/threads/using-heart-rate-monitoring-to-help-with-pacing.196/

    Getting back to the subject of this thread, I have no idea what the physiotherapy being offered involves. You are right to want to learn more before looking for physio help, I think.
     

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