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    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Dr Alastair Miller, Deputy Medical Director at the Joint Royal Colleges of Physicians Training Board (JRCPTB) It is extremely worrying that a doctor with this senior training role for medics is openly contradicting draft NICE recommendations. Dr Miller and other other key figures still...
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    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    I have heard this reference to central sensitisation in pain and maybe fatigue. Have people had this response widely in clinics? It will definitely be a good question for the PSP, ie what biomedical evidence is there that PwME have increased sensitivity to peripheral and central sensations...
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    BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

    List of current BACME board members: https://www.bacme.info/sites/bacme.info/files/BACME%20Board%20Members%20Oct%202020.pdf
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    The WHO has approved my proposal for removal of "Benign" from "Benign myalgic encephalomyelitis" for ICD-11

    @Dx Revision Watch you are an absolute star :emoji_dizzy:. Thank you so much for all your detailed, persistent work on these codes over many years.
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    Updates on status of ICD-11 and changes to other classification and terminology systems

    Adding my thanks for all your hard, detailed and persistent work on this over many years Suzy. Hope you are able to celebrate your many achievements.
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    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    This unformatted list is the Platform modules which are on the NHS "Your Recovery from COVID" list. Appendix B Platform modules • Goal setting • Swallow, voice and communication • Nutrition • Sleep • Pain • Breathlessness • Cough • Fatigue • Fear and anxiety • Mood and emotions • Memory and...
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    BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

    I used to get very frustrated when Charles Shepherd used to use these 3Ps when explaining ME, even though he was using different factors, not deconditioning. No competent doctor would explain cancer in this way.
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    Persistent fatigue following SARS-CoV-2 infection is common and independent of severity of initial infection July 2020 Townsend et al

    "The lack of distinct immune signature, coupled with the association with depression, lends credence to the multifactorial aetiology of CFS [59]. It also supports the use of non-pharmacological interventions for fatigue management and provides no basis for the use of immunomodulation in treating...
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    BPS attempts at psychologizing Long Covid

    The study was of those who had been diagnosed in the last year, so may well not good control/management of their symptoms: Importantly, the study, which appeared in the journal World Psychiatry, was designed to reveal correlations, but is not able to judge causality. Nevertheless, Dr. Volkow...
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    UK: Funding call: Researching long-term COVID-19 effects in non-hospitalised individuals

    Dr Elaine Maxwell, Clinical Adviser at NIHR dissemination Centre talks about the different types of Long Covid in an interview for Babbage an Economist radio podcast yesterday, 11 Nov. She runs thro those who have: been critically ill in hospital who take a long time to recover end-organ...
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    BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

    I have no doubt that those of BPS leaning were feeding back to their colleagues throughout the process, and the BPSers probably trying to exert influence the other way where they could.
  12. M

    FITNET-NHS Esther Crawley - 5th protocol out now

    and what about further use of The Lightning Process ? "Lightning Process This project seeks to define and describe the Lightning Process® (a commercially-available complementary intervention) compared to specialist medical care for paediatric CFS/ME, with a view to identifying potential...
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    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    From Twitter, this has been reccorded and will be available soon "Fantastic #longcovid webinar at #careforlongcovid It was recorded and will be available soon. I will RT it as soon as I spot it. Great panellists talking about the lived experience of what it means to interest the world in long...
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    Kara Jane Spencer, UK singer with severe ME

    Latest email: Kara’s Battle by adminkjs Hello everyone. This is Kara’s team. As many of you are already aware, Kara is very seriously ill in hospital. Last week we were told that she would not survive the night. Amazingly she is still with us, and in the last 24 hours there has been an...
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    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    "Researchers from ukactive and the AWRC will begin an initial three-year plan by focusing on how physical activity can support COVID-19 rehabilitation to inform Government decisions as Europe comes to terms with the pandemic."...
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    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    WOW, it's great in so many ways :) A time to celebrate :party: ....and read again. Yes , there will be strong pushback from the pychs, some clinics will still try and manipulate words to pursue their agenda... BUT, this is a HUGE step forward. Well done to those on the committee and to...
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    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Cannot access this in UK, what sorts of investigations/scans/treatments are they offering?
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    UK: Priority Setting Partnership for ME/CFS

    It's looking like it will be aimed at UK, but there's nothing to stop you sharing ideas on here for others to put forward. They do monitor URLs to check that there is not a disproportionate number from one source.
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    UK - NICE guideline on Long Covid

    Psychiatrists promoting themselves again, in consultation comments, p41 https://www.nice.org.uk/guidance/gid-ng10179/documents/consultation-comments-and-responses-2 220. Royal College of Psychiatrists Scope 'General' '' It should be noted in the document that diagnosable (and treatable)...
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