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    ME/CFS services in the United Kingdom

    That's interesting @NelliePledge as out GPs attitude has changed in a matter of weeks. CPD? Professional magazine ?
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    News from Scandinavia

    I think subsets may be relevant given the varying comorbidities and how this may factor in - eg different forms of OI, allergies/ MCAS/IBS. For B12 then genetic polymorphisms may be worth knowing pre trial. Would pre identification and subgrouping not enable finer teasing of info? I don't have...
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    News from Scandinavia

    If something does have clinical effect, then surely there should be well designed trials, which may also help re mechanism? Apologies if being naive. My main concern is that the combination of Fukada and no subgroups may render any trials meaningless.
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    Open Letter to the Chief Executive of Action for ME about the AfME web page on Graded Exercise Therapy

    Thank you Trish. Succinct, easily understood and non ambiguous. That it should be necessary is both concerning and sad. Let's hope that the constructive criticism is received in the spirit in which it is intended and changes are made asap. ETA spelling
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    News from Scandinavia

    I could find no evidence either, and no indictation of how brain development may be affected from long term use, or how mucking about with seratonin ( and dopamine for other antidepressants) in puberty would pan out. That said there is very little evidence for many prescription medicines in...
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    News from Scandinavia

    Amitriptyline is prescribed to 9 year olds with ME. On NHS.
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    Your experience of ME services - #MEAction UK survey report concludes services 'not fit for purpose'

    Thank you @Gecko , an amazing achievement . I hope it doesn't take too heavy a toll on you .
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    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    I write this as a relative newcomer, a carer and concerned parent, who currently exists in a parallel universe. I have been part of the AfME Educate ME project, which, I hope will have worthwhile outcomes. I found the AfME staff to be genuinely concerned and empathetic and who wanted to...
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    Personality and social attitudes in Chronic Fatigue Syndrome (1999) Wood and Wessely.

    Does Wood being listed as the first author indicate Wessley' s role as junior or senior? The outcome may be relative to that. Eisenberg and Wessley timeline?
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    Open Trial of Vitamin B12 Nasal Drops in Adults With [ME/CFS]: Comparison of Responders and Non-Responders, 2019, van Campen et al

    was it a simple B12 that was tested , or active B12? You can have loads of B12 swilling around but be incapable of using it Did any of the subjects have genetic glitches ( MTHFR / MTR/ MTRR etc) which would impact on the efficacy of the treatment? were ferrtin levels also checked ( apologies am...
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    Action for M.E. 2019 AGM and conference 15th October 2019

    Yes - this continues to be a huge issue. There is no understanding that it (GET) simply does not work, and has been shown not to work as PACE reanalysis shows. Because some may have a " response" to GET, and many with idiopathic chronic fatigue carrying a ME/CFS label may potentially have a...
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    Action for M.E. 2019 AGM and conference 15th October 2019

    Children's section is probably former AYME staff
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    Action for M.E. 2019 AGM and conference 15th October 2019

    Does anyone know the content of the physio and OT briefings? Perhaps @PhysiosforME are familiar. Given the GP info , I am a bit concerned re these
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    Food tastes too sweet?

    Gut dysbiosis? https://www.nature.com/articles/s41598-019-40374-3
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    The Hans Eysenck affair: Time to correct the scientific record (2019) David F Marks

    That depends on your world view and how useful the paradigm is for your own advancement .....
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    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    The 2 year recovery period is also a misnomer and causes issues - Rowe et al and International paediatric primer suggest recovery over 4-6 years possible and not the 80% rate, If you could query this too that would be brilliant - thanks
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