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    IiME letter to Mark Baker (NICE) re: CBT & GET as recommended treatments

    Perhaps this is why there are recent efforts to trace and check status of PACE participants? And NOD data?
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    IiME letter to Mark Baker (NICE) re: CBT & GET as recommended treatments

    Could we not have a venn diagram - perhaps similar to the one in Nature for the differences in cerebrospinalfluid after exercise CFS/GWI/Depression, ( attached) but for the different diagnostic criteria - images are easier to process? This may help make sense of issues
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    Petition: Appeal to NICE concerning the Guideline Committee for ME/CFS

    Shared on whatsapp and Facebook and has got to Sweden, France, US so far
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    IiME letter to Mark Baker (NICE) re: CBT & GET as recommended treatments

    I do not have a scientific background, and am particularly grateful for this forum for the clear explanation of the multitude if affected systems and factors. Being relatively new to ME, with little statistical background, some threads are more challenging than others. My main concern with...
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    Spirometry test results - what do they mean ?

    I hope that you get something positive out of this, and treatment if required.
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    Spirometry test results - what do they mean ?

    We didn't get a copy of my daughter's. Noted as " inconclusive" as the amount of breath eas not consistent enough ( is this not oart of the reason to do this?). Nurse also did not believe that she was trying her hardest- she simply could not exhale over a long timeframe - ran out of puff. No...
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    Format of NICE stakeholder meeting?

    Watch out- that often lulls you into a false sense if security...from the other post re liME letters, confirmation bias and cognitive dissonance are still alive and well
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    Action for ME terminates, by mutual agreement with the University of Bristol, contract to fund Crawley study

    Royal Free outbreak was not benign either. When Prof Behan tracked down survivors decades later it was clear that few if any had " recovered". Ongoing illness had been a part of their lives .
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    Short Synacthen Test

    My daughter had test done last Monday. The test itself is very straightforward. As her sleep cycle is out of phase this had a larger PEM effect than others may experience. She was in bed for 2 days afterwards . Happily back to " normal" level by Friday.
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    UK House of Lords/ House of Commons Questions

    The push here is to have CAMHS staff in schools. Putting the onus on teachers just dosn' t work.
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    United Kingdom: Sussex & Kent ME/CFS Society News

    My aunt is severe ( function around 7-10%). She can' t even get a home visit, or the yearly bloods she is supposed to get. She has POTS symptoms, heavy metal issues (lead), and GP has basically said that there is nothing more to be done for her .....
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    David Bell about "slow sepsis" in ME

    In the third pig's brick house
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    David Bell about "slow sepsis" in ME

    And in the tradition of Roald Dahl, Little Red Riding Hood has set down her Revolver, lit a fire, put her feet up on her pigskin travelling case and no doubt is enjoying a large gin
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    Webinar Registration for Healthcare Professionals (in Scotland?)

    I have met Keith and he does seem clued up. He is aware of the impact GET has, and the effectiveness of some supplements, complementary therapies for pain etc. His experience could be useful educationally as GPs are not clued up at all ( at least where i am). He does seem to have the respect of...
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    Cognitive behavioural therapy for MS-related fatigue explained: A longitudinal mediation analysis, 2018, van den Akker et al

    I feel the effectiveness of any CBT is critically dependent on the person delivering it and the willingness of the person trying to engage with it. My experience is related to adolescents (6), mainly for anxiety, 2 with private providers 4 with NHS. Of the 2 private attendees, 1 subsequently...
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