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  1. Lapis108

    Long Covid Clinic, Dr Binita Kane YouTube videos

    There's a new website up for the Long Covid Clinic https://thelongcovidclinic.co.uk/ Had a look on Instagram for the Be Nourished outfit by Rachel Jessey and there's a video of her blending room temperature water to make 'structured water' It might be one of maddest things I've seen. But good...
  2. Lapis108

    Open Letter to the Society of Occupational Medicine

    There's an open letter going to SOM about the blocking of people with ME & Long Covid. Anyone can sign it Form https://forms.gle/RnxxbCMJPKqPNrnF7 Details are on Kirstie Sivapalan twitter
  3. Lapis108

    Trial of Long Covid treatment - AXA1125 from Axcella Therapeutics, 2021

    It was interesting they were so surprised that the pCR rates were so high. I'm not sure what they thought the fatigue associated with Long Covid is like? But that's the problem of calling it fatigue - it downplays the whole body shutdown awfulness of it. I wish they would focas on that - it's a...
  4. Lapis108

    Trial of Long Covid treatment - AXA1125 from Axcella Therapeutics, 2021

    It was 60g - I did the trial and it was alot of powder! It's really rubbish they are justifying carrying on from "statistically significant' results from the CFQ. Another crap fatigue trial based on the CFQ
  5. Lapis108

    BPS attempts at psychologizing Long Covid

    Although Gez has been an excellent source of information for those with Long Covid. He is definitely beginning to dabble with the dark side. If you watch the videos there's a 'eureka' sense when the type a personality is described and a bit too much glow of the converted. He's well and truly...
  6. Lapis108

    Fatigue Scales in research

    Thank you - I will look through these threads
  7. Lapis108

    Fatigue Scales in research

    Hi All, It's be really interested in what people's thoughts are for the most accurate fatigue scales that can be used in research studies? Ones that also give representation to PEM over time. The CFQ (chalder fatigue scale/ questionnaire) is often used but has serious limitations. The DePaul...
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