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    DecodeME in the media

    It was on Radio 4 at about 8.40
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    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    Maybe this? https://meassociation.org.uk/2025/03/a-chairman-resignation-statement-to-the-me-community/?fbclid=IwY2xjawI0FrpleHRuA2FlbQIxMQABHWPGQ2gNhWbeQyJtRAwjsRv7Alw3hCcjqTjlIozwBdwZNfMmcqk3IIgD4w_aem_Nhl9bYkeKu1WMOQiSCncsg
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    UK Parliament: Westminster Hall debate on ME/CFS, Wednesday 1st May 2024, 16.30 - 17.30

    Re. the short notice for the debate. I'm guessing there was little competition for this slot as most MPs would have been ordered back to their constituencies, immediately after PMQs, to canvas for today's elections.
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    BMJ - Cognitive dysfunction after covid-19 2024 Ladds et al

    The Patient Experience describes my brain fog perfectly.
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    Earseeds, Acuseeds

    Extraordinary article in today's Independent. It's a 1st person account 'As told to Zoe Beaty'. Sorry I'm not able to post it here, perhaps someone else can?
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    What can we learn from the Post Office scandal publicity (including TV)?

    This is a quote from an Article, about the Post Office scandal, in today's Independent 'Giving the story a heart and a face is what seemed to pique the production company’s interest.'
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    Closed UK: DecodeME updates, was recruitment thread.

    Today I have been asked to do a spit test for DNA. Feeling less miffed - they didn't want mine with the first lot.
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    Crowdfunding: Trial By Error [David Tuller]: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms", Oct 2022

    @dave30th Still reporting on mail from Berkeley. Today I received a card from Michael C Lu enclosing a request for a monthly gift.
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    Crowdfunding: Trial By Error [David Tuller]: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms", Oct 2022

    Congratulations. I think that you asked to be told if more stuff arrived from Berkley. I had an envelope, from Berkeley, arrive today. it had two stickers of sun flowers on the envelope - perhaps they were stamps? Inside was a card telling me I am a star (very much appreciated). Another card...
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    Noise cancelling headphones! Oh Joy! (and other ways to block sound)

    @mango That worked a treat, thank you. The tree surgeons, with their chain saws and chippers, have left now. They, loop thingies, are comfortable and greatly reduce the noise from neighbour's mowers and I'm now prepared the gardeners - who would have thought leaf blowers could be so very...
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    Noise cancelling headphones! Oh Joy! (and other ways to block sound)

    I ordered some - but needed to change the size. How on earth do you get them on the loop bit?
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    High-dose Oral Thiamine Vs Placebo for Chronic Fatigue in Patients With Quiescent Inflammatory Bowel Disease, 2021, Bager et al

    I came off them gradually over two or three weeks. Very soon after I stopped I could no longer walk up a slight slope outside my house.
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    United Kingdom: Brakespear Clinic - Dr Basant Puri; Dr Joan Monro

    Very foggy head but? Basant Puri... 'Vegepa' capsules for ME which are advertised in MEA's magazine?
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    World ME Alliance, was previously IAFME: International Alliance for ME

    @Ravn said 'Is this the same organisation as IAFME? I can't keep track... ' :confused: I so, so agree.
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    Chills and feeling cold

    This doesn't answer your question but maybe of use. I've had this for over 50 years since my onset of ME. The only way I can get warn is in a warm bath, I add more hot as it cools. It mustn't be too hot as I'll then get too hot and have to cool myself down... I feel so cold that I will cool a...
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