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  1. InitialConditions

    UK: Priority Setting Partnership for ME/CFS

    Maximise exposure to patients maybe. But that's not really what I'm talking about.
  2. InitialConditions

    UK: Priority Setting Partnership for ME/CFS

    I hope there is a bit of press for this. Obviously not a big story like the NICE shenanigans, but a story nonetheless.
  3. InitialConditions

    Gulf War Illness - causes

    Yes, the BBC story is quite strange, because it doesn't seem to link to a newly published paper. And no other outlet is running with this 'story'....
  4. InitialConditions

    General tips for pwME when registering with a new GP in UK

    You might be best seeing a few different GPs in the practice before settling on the least worse! I was once thinking of changing practices and so rang the potential new place and asked if any of their GPs had experience or interest in ME/CFS. The answer was of course 'no'.
  5. InitialConditions

    UK: Dr Sarah Myhill

    Yes, I noticed the link had been removed. You could always contact the person whose webpage it is, as he is the author of the document.
  6. InitialConditions

    UK Equality and Human Rights Commission - are ME/CFS and Long Covid classed as disabilities?

    So the EHRC could have swapped 'ME/CFS' for 'long covid' in their tweet and it would reflect the status quo for ME/CFS...
  7. InitialConditions

    UK Equality and Human Rights Commission - are ME/CFS and Long Covid classed as disabilities?

    I am wondering—because this is not an area that I have much expertise in—is ME/CFS classed as a disability in this context?
  8. InitialConditions

    UK Equality and Human Rights Commission - are ME/CFS and Long Covid classed as disabilities?

    Although, again, the nature of the definition of long covid is an issue. For many, LC is not disabling, and they can work and live their lives as normal.
  9. InitialConditions

    UK Equality and Human Rights Commission - are ME/CFS and Long Covid classed as disabilities?

    I don't think this article has been posted, but we have discussed earlier in this thread the EHRC tweet announcing this 'policy'. It is quite shocking, and must be fought. I have submitted a FOI request to EHRC request to ascertain whether this is now their policy and how they came to this...
  10. InitialConditions

    ME Awareness Day / Week / Month, May 2022

    I can raise this within FME. We are working on trying to improve NHS ME/CFS services' websites, and obviously this main NHS page is important.
  11. InitialConditions

    ME Awareness Day / Week / Month, May 2022

    This is just a copy of an article in local news, last week. I knew I had read it before. https://www.gazetteandherald.co.uk/news/20110501.saskia-james-immensely-proud-working/ I'm surprised BBC does that.
  12. InitialConditions

    Long COVID (post-COVID-19 condition) in children: a modified Delphi process, 2022, Stephenson et al

    This is essentially the NICE long covid definition/criterion. My neighbour had covid a few months ago, and still has a cough that hasn't resolved. She has long covid according to the NICE guidance, and this is why I'm so adamant that unless people stop conflating these cases with the ME/CFS-like...
  13. InitialConditions

    United Kingdom: Action for ME (AfME) news

    It's probably an accurate reflection of what they offer. Note they are talking about their in-house service (https://www.actionforme.org.uk/get-support-now/our-healthcare-services/healthcare-services-for-me/), which I think is now managed by ex-ME Trust staff.
  14. InitialConditions

    United Kingdom: Action for ME (AfME) news

    Try again in a week or so!
  15. InitialConditions

    Selective inhibition of miRNA processing by a herpesvirus-encoded miRNA, 2022, Prusty et al

    ScienceDaily piece: https://www.sciencedaily.com/releases/2022/05/220504110408.htm
  16. InitialConditions

    United Kingdom: News from Forward-ME Group

    It is mostly due to workload issues in the case of Nina, but there have been some disagreements. PAG (through Opal) rightly raised the issue that having a clinician involved in the NICE implementation work is vital given Nina's departure.
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