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  1. ukxmrv
    Post

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    It does put a bit of a spin on the tired idea that it is patients that are the impediment to researchers wanting to get involved. Imagine being...
    Post by: ukxmrv, Apr 9, 2024 in forum: ME/CFS research news
  2. ukxmrv
    Post

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    It's more of 'the bastards don't want to get better' theme https://implementationscience.biomedcentral.com/articles/10.1186/1748-5908-6-132
    Post by: ukxmrv, Apr 6, 2024 in forum: ME/CFS research news
  3. ukxmrv
    Post

    Functional Neurological Disorder (FND) - articles, social media and discussion

    If it was really just down to keeping a job or having a drink in the pub why not just stick to a diagnosis of 'conversion disorder' ? This would...
    Post by: ukxmrv, Apr 5, 2024 in forum: Psychosomatic theories and treatments discussions
  4. ukxmrv
    Post

    Functional Neurological Disorder (FND) - articles, social media and discussion

    Certainly not. On the Long Covid groups there appears to be a genuine group of new and confused people diagnosed with FND. Also the POTS group....
    Post by: ukxmrv, Apr 4, 2024 in forum: Psychosomatic theories and treatments discussions
  5. ukxmrv
    Post

    Functional Neurological Disorder (FND) - articles, social media and discussion

    I would agree with that to an extent. On the Facebook groups I belong to there are FND patients who suddenly appear from nowhere and post...
    Post by: ukxmrv, Apr 4, 2024 in forum: Psychosomatic theories and treatments discussions
  6. ukxmrv
    Post

    Functional Neurological Disorder (FND) - articles, social media and discussion

    I am seeing similar reactions on Facebook groups from people diagnosed with Candida, heavy metal poisoning and any number of alternative ideas for...
    Post by: ukxmrv, Apr 3, 2024 in forum: Psychosomatic theories and treatments discussions
  7. ukxmrv
    Post

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    I feel better Arvo the more you explain it and I understand the full picture. But then I am not in the USA. Thank you. Could it be possible that...
    Post by: ukxmrv, Apr 3, 2024 in forum: ME/CFS research news
  8. ukxmrv
    Post

    An exploration of the experiences and self-generated strategies used when navigating everyday life with Long Covid, 2024, Leggat et al.

    I came across the Listen project again a couple of times when it was mentioned on a LC Facebook group. First mention was someone at a clinic being...
    Post by: ukxmrv, Mar 23, 2024 in forum: Long Covid research
  9. ukxmrv
    Post

    News from Australia

    Where would a population of influenza positive controls come from? I have never been given a formal test for influenza. Even in Queensland.
    Post by: ukxmrv, Mar 21, 2024 in forum: Regional news
  10. ukxmrv
    Post

    Opinion: ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal - George Monbiot

    Is this in the print version or just online?
    Post by: ukxmrv, Mar 12, 2024 in forum: General ME/CFS news
  11. ukxmrv
    Post

    High Dose Steroids

    I found that the high wore off after about 3-4 weeks of Pred at 25 mg per day. I returned to my 'normal' level of ME functioning. It was very nice...
    Post by: ukxmrv, Mar 11, 2024 in forum: Drug and supplement treatments
  12. ukxmrv
    Post

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    I have been working through this and the other threads and most of my questions have already been followed up. Thank you all. My last one is...
    Post by: ukxmrv, Mar 9, 2024 in forum: ME/CFS research news
  13. ukxmrv
    Post

    Mike's EU Marathons

    Mike, thank you. What a wonderful achievement. Will keep an eye out for an Albanian contact.
    Post by: ukxmrv, Feb 18, 2024 in forum: General ME/CFS news
  14. ukxmrv
    Post

    UK: Physios for ME

    Thank you Physios with ME. This is very useful.
    Post by: ukxmrv, Jan 31, 2024 in forum: News from organisations
  15. ukxmrv
    Post

    Medications for Immune Deficiency: Intravenous immunoglobulin, Inosine pranobex, Hydroxychloroquine

    I have tried IVIG and Imunovir. Neither had any long term benefits that I could see. The Imunovir did seem to have a good effect on my swollen...
    Post by: ukxmrv, Jan 30, 2024 in forum: Drug and supplement treatments
  16. ukxmrv
    Post

    Trial Report The impact of bed rest on human skeletal muscle metabolism, 2024, Wüst

    I wonder how many of them developed OI or POTs and if so, for how long? It's something I was told when seeing Cardiologists re: POTS or low BP....
    Post by: ukxmrv, Jan 26, 2024 in forum: 'Conditions related to ME/CFS' news and research
  17. ukxmrv
    Post

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

    One advantage of a TV drama is that we don't seem to need to apply 'balance' as per a documentary or a news item. There are plenty of people with...
    Post by: ukxmrv, Jan 10, 2024 in forum: General ME/CFS discussion
  18. ukxmrv
    Post

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

    I met a few people at DWP Tribunal level who were downright malevolent. Including the token 'disabled person' and a lawyer. Been assessed by a GP...
    Post by: ukxmrv, Jan 9, 2024 in forum: General ME/CFS discussion
  19. ukxmrv
    Post

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

    The only dramas that spring to mind are 'wide eyed and legless' and the episodes of 'the golden girls'.
    Post by: ukxmrv, Jan 9, 2024 in forum: General ME/CFS discussion
  20. ukxmrv
    Thread

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

    I have been listening to the Post Office Inquiry which shows proceedings on their website and YouTube. Initially I was struck by how the Post...
    Thread by: ukxmrv, Jan 9, 2024, 116 replies, in forum: General ME/CFS discussion
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