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  1. ukxmrv

    Tom Kindlon - ME/CFS Advocate

    Could the speech part be pre-recorded maybe?
  2. ukxmrv

    Tom Kindlon - ME/CFS Advocate

    Congratulations Tom. You really deserve it
  3. ukxmrv

    Coping with heat

    That's interesting @Yann04 about the concrete effect. When we lived in London it was on floor 2 of a new build with concrete floors. It could reach 40c inside during heatwaves. I don't know how hot it got on other floors but the flats had large windows and patio doors which (even with good...
  4. ukxmrv

    Coping with heat

    There is a mention of a man with 'CFS' in this article about overheating London flats. It's towards the end and the para starts with 'Chris Brown ....' https://www.theguardian.com/australia-news/2025/aug/12/do-not-buy-these-flats-residents-warn-about-unbearable-heat-inside-london-new-builds...
  5. ukxmrv

    Closed UK: DecodeME updates, was recruitment thread.

    Thank you. I got the email - so excited!
  6. ukxmrv

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    When I had cancer elderly patients were brought into the chemo wards on stretchers and placed in beds in more private areas with curtains away from other people being treated. I also saw elderly people stretched in for scans and Radiology. The Oncologist would come to the Chemo room to see them...
  7. ukxmrv

    NL: UWV Dutch Employee Insurance Agency ao disability

    Sorry Turtle to hear what you have been doing through. Thank you for explaining what it is like.
  8. ukxmrv

    NL: UWV Dutch Employee Insurance Agency ao disability

    I wonder what this means for patients who haven't had these tests? From the news report above it alludes to looking at previous closed cases.
  9. ukxmrv

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    It could possibly be related to his sister? She was reported to teach pacing for fatigue (or something along those lines)
  10. ukxmrv

    Blood pressure monitors and how to use them; taking a blood pressure measurement; continuous monitoring

    This is the one I bought (my POTS doctor suggested Omron) years ago. Waited until there was a cheaper one on Amazon...
  11. ukxmrv

    Hypothesis Long Vax is delayed onset Long COVID, 2025, Bunker

    I have had ongoing problems since both Covid and the vaccine but for me they were totally different. An example would be the severe head pain after the vaccine with eye pain. This was like nothing I had experienced before and the first year was hell. After Covid i have breathing and lung...
  12. ukxmrv

    What can we learn from the Post Office scandal publicity (including TV)?

    First part if the report is published. Here are some of the main points summarised https://www.bbc.com/news/articles/cvgeq7z4ylyo#amp_tf=From%20%251%24s&aoh=17521349565594&csi=0&referrer=https%3A%2F%2Fwww.google.com Wouldn't it be great if something similar appeared for ME showing the impact...
  13. ukxmrv

    If an effective treatment comes along for ME/CFS, how can we physically rehabilitate ourselves?

    A relative needed a hip replacement but ended up waiting years due to waiting lists, covid, more lists etc. They couldn't do their normal activities at all. They went from sofa to bed and the painkillers really zonked them out. After the operation they did have a period of recovery but within...
  14. ukxmrv

    Alternative to duvet for summer months

    I have found a linen or linen cotton duvet cover is just the right mixture of light, breathable but heavy for me. It's heavier than just a sheet but weight does vary for different brands of linen I have found...
  15. ukxmrv

    "Doctors as Patients" documentary Anil van der Zee

    I am watching this in small chunks. It's fantastic. The people were so well chosen. Thank you so much.
  16. ukxmrv

    Mind and Body in the Guardian again

    Was the original date for this article Sunday? I wonder if it was published in the Observer or just intended as an online piece. The Observer has been sold to another company now and might just be filling up pages with filler if they are still producing a printed copy...
  17. ukxmrv

    Mind and Body in the Guardian again

    But is that actually happening (denying lived experience) in enough cases to warrent a mention in this thread? I can't see anyone doing this. Isn't it a bit like 'attacks on researchers'?
  18. ukxmrv

    Mind and Body in the Guardian again

    Does it really do anyone any good being diagnosed with FND though? I am not seeing this on the POTS, ME, LC and other groups I belong to. Where is this group that is benefiting from FND and how is that better for them than not being diagnosed with anything specific. There are plenty of claims...
  19. ukxmrv

    Mind and Body in the Guardian again

    So having read the article (through a haze of delirium from the flu) their evidence consists of 1. A woman who was too stupid to understand how steroids might have helped her pain problem (and was suffering for years not even considering a steroid injection might help?) 2. A 1970 (!) Study on...
  20. ukxmrv

    Severe ME and surgery

    For me personally the big breakthrough was asking for no adrenaline to be used. Also for non histamine releasing drugs if possible. Also the timing of the operation. At my local hospital they book a large group in the early morning and then work there way through us. This means usually for me...
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