Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
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MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

Discussion in 'General ME/CFS Discussion' started by Dx Revision Watch, Jan 11, 2017.

  1. Countrygirl

    Countrygirl Senior Member

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    I'd be over the moon! She is about 40 years younger than me.

    I would regard it as a flippin' miracle!
     
  2. Countrygirl

    Countrygirl Senior Member

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    Made my day!

    Remind me......when are you coming my way for a get-together with the rest of the Monstrous Women of Devon.............with honourary membership for our sisters over the Tamar and the Dorset/Somerset border?
     
  3. trishrhymes

    trishrhymes Senior Member

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    I'd so love to but it ain't gonna happen I'm afraid. I only go out for the dentist and if I absolutely have to, for doctor or hospital. I simply don't have the stamina. Maybe we could set up a skype chat soon. Haven't even met @hellytheelephant and we live in the same town. :ill::cry:

    :hug::hug::hug:
     
  4. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    I know. And I am sorry if this material is causing distress. It makes me feel that nothing has improved in the UK in the past 20 years and that until we have the science, it will likely get worse.
     
  5. trishrhymes

    trishrhymes Senior Member

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    I keep clicking 'like' for all these posts full of dreadful information. Of course I don't like it, but I'm saying like to say thank you for alerting us. Forewarned is forearmed and all that.

    Now can I please scream...

    AAAAAArrrrghhhh!!!!!!!!!!!!!!!!!!!!
     
  6. Esther12

    Esther12 Senior Member

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    Did you see this from another thread:

    1. Ben Goldacre said,
      November 9, 2007 at 12:38 am

      i’m not sure there are very many clear answers, but i have to say i think medically unexplained symptoms and the mechanisms of psychological factors in ill health are officially the most interesting thing in medicine right now, a huge amount of very real distress, little clear knowledge, and i’m totally moving into it as a dayjob, research if not clinical.
    http://www.badscience.net/2007/11/b...entioning-psychosocial-factors/#comment-17961
     
  7. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    Thames Valley

    http://www.tvhiec.org.uk/mind-body/mus/

    Medically Unexplained Symptoms and Psychologically Impacted Illness

    Supporting patients with physical long-term conditions through psychological interventions

    For the last two years, a national Pathfinder has been running in the Thames Valley which builds on the work done through the IAPT programme. Originally launched in 2008, the Improving Access to Psychological Therapies (IAPT) programme is a large-scale initiative that aims to increase the availability of NICE-recommended psychological treatments for depression and anxiety disorders. People with long-term physical health conditions – the most frequent users of health care services – commonly experience mental health problems such as depression and anxiety. As a result of these co-morbid problems, the prognosis for their long-term condition and the quality of life they experience can both deteriorate markedly, unless they are supported in an integrated way. For example, 40% of patients locally with diabetes show symptoms of psychological distress.

    This includes patients with Medically Unexplained Symptoms (MUS) and Psychologically Impacted Illness (PII).

    MUS

    The term “medically unexplained symptoms” (MUS) is used for conditions for which no physical diagnosis is made despite adequate investigation.

    The symptoms are very real and can vary in intensity from relatively minor to extremely debilitating. MUS are common and may account for up to 20% of primary care contacts and in some secondary care specialties can account for over half of all referrals. Many people with MUS find interventions aimed at managing anxiety or depression (or both) helpful. All age groups can be affected.

    PII

    Psychologically Impacted Illness is also common particularly amongst patients with long term conditions. People with long term physical illness may manifest anxiety or depression and, as in the case of MUS, strategies aimed at tackling these are often helpful in improving both their psychological condition and the control of their long term condition.

    Projects

    Each of our local projects is focusing on patients with a different long-term condition. In Berkshire, the aim is to provide a specialist psychological service for patients with diabetes, as a component of improving their general well-being. In Oxfordshire, patients with cardiac disease/cardiac failure are receiving integrated physical and mental support in both community and hospital settings. In Buckinghamshire, an integrated physical and psychological stepped care model is being implemented for patients with chronic respiratory conditions. Finally, the fourth project, which is running in Berkshire, is concerned with patients who have medically unexplained symptoms, which may have a physical, or a psychological basis, but where no diagnosis has yet been made. This latter project offers a multi-agency stepped care pathway across primary care, psychological services and liaison psychiatry.

    The Project report can be viewed HERE
     
    Last edited: Jan 16, 2017
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  8. A.B.

    A.B. Senior Member

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    Isn't it astonishing how the supposedly empathic and understanding psychosocial approach succeeds in making us feel angry, hopeless and frustrated, while the sober biomedical approach has given us so much hope in the last few years.

    The real psychosocial intervention patients need is to finally be shown some respect. That means ending the incessant belittling and psychologizing to prevent further psychological and social harm, and creating a serious research program to give us real hope.
     
    Binkie4, Solstice, Jan and 14 others like this.
  9. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    http://www.getreading.co.uk/news/local-news/gps-to-tackle-mystery-symptoms-4202460

    GPs to tackle mystery symptoms
    A project in managing medically unexplained symptoms in patients is to be piloted in Berkshire.

    Updated19:11, 7 JUN 2013


    A project in managing medically unexplained symptoms in patients is to be piloted in Berkshire.

    The county’s NHS trust won a national bid for the breakthrough project and will receive funding from the Department of Health.

    Medically unexplained symptoms (MUS) are persistent bodily complaints which are not diagnosed despite repeated tests.

    Lead GP mental health for Berkshire East Dr Katie Simpson said: “Many GPs find this a difficult area. This unique training will empower GPs to manage patients with MUS safely so that serious diagnoses are not missed and at the same time patients are supported to manage their symptoms and spared unnecessary investigations.”

    Last week, doctors from Denmark came to Bracknell to train 10 GPs on treating MUS patients. Each doctor will select five patients with MUS and help them manage their symptoms.

    Typical symptoms are related to irritable bowel syndrome, fatigue, and nausea.
     
    Last edited: Jan 16, 2017
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  10. Countrygirl

    Countrygirl Senior Member

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    Red Alert!

    Certainly for Devon.

    A new kid on the block.

    Behavioural Activation (BA) cheaper than CBT.

    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)31140-0/abstract
     
  11. sarah darwins

    sarah darwins I told you I was ill

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    Well said.

    Crazy isn't it — I'm spending a lot of time at the moment thinking about ways I can shield myself from the attentions of the health service when it comes to ME. I'm seriously considering telling my GP I've had a full recovery (I can fake it for 15 minutes) so I no longer have the diagnosis. Then I can just see the GP for unrelated things. I don't want these fools coming anywhere near me.
     
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  12. sarah darwins

    sarah darwins I told you I was ill

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    Typical bloody NHS. No mention of asking patients whether they WANT to be selected.
     
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  13. Countrygirl

    Countrygirl Senior Member

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    The terrible image of my friend of 30 years swinging on the end of a rope and now lying in a lonely grave on the moor because of the influence of these wretches never leaves me.

    How can I forgive them?
     
  14. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    Oh, ((((Countrygirl))))
     
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  15. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    Most of the PWME that I know would rather chew an arm off than visit a GP. This constant reiteration of "frequent attenders" for ME, CFS doesn't ring true.

    And if I had been a professional watching Payne's presentation where she claimed that "these patients" go back to their GPs every single day, I'd have stood up and walked out.
     
    Solstice, moosie, Jan and 12 others like this.
  16. Artstu

    Artstu Senior Member

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    Indeed I've not seen my GP for years now, and rarely saw one before I became ill as well.
     
  17. trishrhymes

    trishrhymes Senior Member

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    I think in my case the wheelchair I need to use when I go out might be a bit of a giveaway.

    And for those on benefits, this is, sadly, not an option. Otherwise I'd do the same.

    I saw a GP recently, not my usual one, because I'd developed a rash. He was very thorough, admitted he didn't know the cause, immediately took blood himself for a set of tests and phoned me later the same day to reassure me nothing abnormal detected.

    He even listened when I suggested it might be a medication I'd been taking and looked it up and used words of more than one syllable in talking to me.

    He didn't comment on the fact that I was in a wheelchair except to say I see you've got CFS (I could see Chronic Fatigue Syndrome in large type at the top of the screen).

    He just asked how long I'd had it and when I said 27 years he looked surprised but said no more.

    Very happy to be taken seriously, even if it was for something he could see with his own eyes, so I couldn't be imagining it!

    An unexplained rash. Now there's a common MUS. Wonder why he didn't offer me some therapy or a bit of clay to help me understand my symptoms.
     
  18. sarah darwins

    sarah darwins I told you I was ill

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    I get that completely. I'm trying desperately to avoid going on benefits right now, partly for this reason.
     
  19. Snow Leopard

    Snow Leopard Hibernating

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    The bigger picture is just as worrying - they're justifying these programmes not on that they lead to patients being more able to have their human needs met (objectively), but simply to save money!!!!
     
    Solstice, Jan, suseq and 8 others like this.
  20. A.B.

    A.B. Senior Member

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    By making these treatment options so ridiculous they're ensuring low participation, saving even more.
     
    Solstice, suseq, Snow Leopard and 5 others like this.

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