• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    This made me laugh out loud. If such a term came into parlance, it could at least be said that were a medical professional to take the PISS, a person with PISS might, therefore, have hope of a cure. Oh the double stigma of it. I noticed the IAPT "Technical Output Specification" for national...
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    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    Technically, patients aren't being referred for or categorised for reporting with 'myalgic encephalomyelitis'.
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    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    Maybe there should have been ICD-11 inclusion of a neologising disorder. Perhaps for inclusion under disorders due to addictive behaviours. Although I realise as I type that suggesting the term 'neologising disorder' could potentially mean I am suffering with neologising disorder..
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    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    I received a response to my query about 'primary care liaison' integration, stating that IAPTus is currently integrated with 'electronic messaging routes', such as: -Medical Interoperability Gateway -Docman Hub They are planning other partner services integration. Partner services integration...
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    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    @lilpink We share the same substantive concerns. I'm aware of two dedicated IAPT clinical systems: IAPTus and PCMIS. It's not clear whether some IAPT providers use other electronic clinical systems, particularly where services are co-located. (See Mayden IAPTus slideshow below re migration to...
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    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    @lilpink thanks for this. Yes, it isn't clear from the FOI exactly what purpose of recording Bristol is referring to is it. Term 'provisional diagnosis' has been superceded by 'problem descriptor' at least as far as the data set is concerned. In 'Psychological Therapies: Annual Report on the...
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    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    @lilpink Is it self-evident the enjoinment to record MUS patients with F45.0 for pseudonymised national reporting will directly impact coding/terms on their medical record? Further indication chronic pain including Fibromyalgia recorded as a LTC for purposes of IAPT LTC Integrated Early...
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    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    The IAPT LTC/MUS extended data set pilot technical output specification categorises chronic pain including Fibromyalgia as a LTC. However: In the recently published IAPT-LTC Full implementation guidance 2018, "Medically unexplained symptoms" are defined as: "Persistent and distressing bodily...
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    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    Implementation guidance docs up on RCP website on IAPT LTC/MUS pathway: http://www.rcpsych.ac.uk/workinpsychiatry/nccmh/mentalhealthcarepathways/improvingaccess.aspx The IAPT pathway for people with long-term physical health conditions and medically unexplained symptoms: - Full implementation...
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    Lightning Process to be Evaluated in Research Study on Children

    The feasibility and acceptability of conducting a trial of specialist medical care and the Lightning Process in children with chronic fatigue syndrome: feasibility randomized controlled trial (SMILE study). Authors: Crawley E, Mills N, Beasant L, Johnson D, Collin SM, Deans Z, White K...
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    Lightning Process to be Evaluated in Research Study on Children

    http://www.ncbi.nlm.nih.gov/m/pubmed/24304689/?i=1&from=Lightning%20Process The feasibility and acceptability of conducting a trial of specialist medical care and the Lightning Process in children with chronic fatigue syndrome: feasibility randomized controlled trial (SMILE study). Authors...
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    Professor Findley, Neuro Behavioral Training, the National ME Centre, and the Lightning Process

    Thanks, @MeSci.
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    Professor Findley, Neuro Behavioral Training, the National ME Centre, and the Lightning Process

    It would appear that the Romford neurology beds haven't been available to CFS/ME since circa mid 2011(?) http://www.meassociation.org.uk/2011/07/closure-of-uks-only-in-patient-service-for-people-with-mecfs-is-total-unnacceptable-says-me-association/ The article references Professor Findley's...
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    Professor Findley, Neuro Behavioral Training, the National ME Centre, and the Lightning Process

    I'm a little uncertain about NMEC inpatient service current status. The NMEC site states: Note 'suspended', not terminated, but we were in contact with them regarding possible admission in 2011*, prior to which, if I remember correctly, an assessment with Susan Codd was necessary. I honestly...
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    Professor Findley, Neuro Behavioral Training, the National ME Centre, and the Lightning Process

    I realise I'm more than a little late to the Lightning Process party and that there are a number of LP analogues which it would potentially be a time-consuming duplication of efforts (given the high level of cogency elsewhere on PR critiquing the LP) to devote separate threads to. I did think...
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    Similarities between ME/CFS and MS

    You still get points for having my favourite Einstein photo as your profile pic ;)
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    Similarities between ME/CFS and MS

    @alex3619 is there any possibility you might remember the specialist's name or details of the post to identify it by?
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    body twitches…

    http://en.m.wikipedia.org/wiki/Fasciculation I understand muscle twitching is quite a common symptom in ME/CFS. I think I saw Dr. José Montoya state that it's a common feature in some neurological conditions so might point to neuro involvement in the pathophysiology of CFS/ME as a condition...
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    FDA Orders 23andMe to Stop Providing Genetic Analysis.

    'In your letter dated January 9, 2013, you stated that the firm is “completing the additional analytical and clinical validations for the tests that have been submitted” and is “planning extensive labeling studies that will take several months to complete.” Thus, months after you submitted your...
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    Antiemetic for CFS-related nausea experiences?

    Paha! Duly noted - though I usually double picking things off the floor with a sleep. ;)
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    Antiemetic for CFS-related nausea experiences?

    I just wanted to get some advice *and* to mess with everyone's heads - happily have accomplished both goals. ;)
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    Antiemetic for CFS-related nausea experiences?

    Thanks for all your kind help, @MeSci.
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    Antiemetic for CFS-related nausea experiences?

    That's useful - thanks very much for all your help.
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    Antiemetic for CFS-related nausea experiences?

    Thanks for this, @MeSci . Thanks for this @ukxmrv - any negative effects from the Buccastem or charcoal?
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    Antiemetic for CFS-related nausea experiences?

    Hi @MeSci - thanks for your response. I haven't heard of dysbiosis so I'll take a look into that. The lemon balm tea sounds like a good tip. Many thanks.
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    Antiemetic for CFS-related nausea experiences?

    There's variability in degree, but the issue is basically chronic. So answer A and answer B. ;) The full picture is I had a bout of gastroenteritis three months ago, prior to which I had mild nausea and eating difficulties that usually married with fatigue levels. Since the gastroenteritis...
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    Antiemetic for CFS-related nausea experiences?

    @peggy-sue - that's useful - thanks very much indeed.
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    Antiemetic for CFS-related nausea experiences?

    Thanks very much for your kind suggestions. Hoping to pick up something with ginger content today and I'll check out the other suggestions more fully. Thanks all - much obliged.
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    Testing for Probiotics

    This doesn't exactly answer your question, but it might be of interest nonetheless. http://ubiome.com/ UBiome is a citizen science project that offers to sequence your gut bacteria for your info, but also collates its customers' data for their own research purposes (presumably to further...
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    Antiemetic for CFS-related nausea experiences?

    Hi all. I wondered if anyone has had any experience with taking antiemetics to reduce nausea and make eating a generally less difficult affair? I'm trying to ascertain which antiemetics to avoid due to side effects and which might be most efficacious for CFS sufferers. Any thoughts would be...