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  1. JellyBabyKid

    United Kingdom: ME Association governance issues

    Is it just me, but it seems a little odd to be so particular about insisting the motion meets all procedural requiremets, but not the AGM.
  2. JellyBabyKid

    Medical gaslighting as a mechanism for medical trauma: case studies and analysis, 2024, Shapiro & Hayburn

    Appropriately for this thread: traumatic invalidation Traumatic invalidation occurs when an individual's environment repeatedly or intensely communicates that the individual's experiences, characteristics, or emotional reactions are unreasonable and/or unacceptable. Often experienced by the...
  3. JellyBabyKid

    Medical gaslighting as a mechanism for medical trauma: case studies and analysis, 2024, Shapiro & Hayburn

    I have medically induced PTSD thanks to being medically gaslit and nearly dying after being dismissed as "overweight" when I had pneumonia and double pleurisy that I have never entirely recovered from, and led to needing major lung surgery after two lung collapses, and led to my diagnosis of ME...
  4. JellyBabyKid

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

    I actually have an Open University Psychology degree. Getting ME stopped me doing my PhD. PG would hate it. Absolutely loads on experimental methodology, stats and ethical approval of research studies.
  5. JellyBabyKid

    Post-viral fatigue and COVID-19: lessons from past epidemics, 2020, Islam, Cotler and Jason

    Bit of a cheeky question; does anyone have a copy of this they could share?
  6. JellyBabyKid

    Who is Simon Wessely?

    I read some where, probably on here, that someone said "Sir's career is more important than my life" and my God, I felt that. So many of my choices have been taken away because medicine refuses to listen to, believe and prioritise our reality. A small group of people with so much power and...
  7. JellyBabyKid

    Poll: In pwME that report worsened sleep following exertion/excessive activity (or during PEM) what happens to your sleep during an acute infection?

    Interesting..I have seen this mentioned on another thread. As my ME got worse, and especially since getting covid, I get every cold or virus going..but then I also have two very young children that live downstairs from me and who don't seem to understand the purpose of doors or covering their...
  8. JellyBabyKid

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

    51mins @Adam pwme 's recording of The Radio 5 live discussion on Long Covid from this morning & mentions ME. Starts with Paul Garner, but is a very good discussion Worth a listen
  9. JellyBabyKid

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

    He appears to be friends with Wessley and Gerada. The latter is the BBC's go to GP so it could be a connection to her or the Science Media Centre put him forward as their in house expert for all things covid?
  10. JellyBabyKid

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

    He clarified that cognitive approaches "can help" This is a really good discussion. All sides getting an airing with lots of personal stories.
  11. JellyBabyKid

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

    Paul Garner on Radio 5 live just after 10am this morning (29th October) introduced as a "covid expert" claiming it is a a "stress response" and the "nocebo effect" Dr Amy Small was also interviewed and very politely disagreed and said it has multiple elements, including vascular.. commenting...
  12. JellyBabyKid

    Ignored, blamed, and sometimes left to die – leading expert ME explains origins of a modern medical ‘scandal’, Chris Ponting, The Conversation, 2024

    Tagging in @Karen Hargrave of #ThereForMe and @Aaron of the Billboards project DM me if I can help? See @Chris Ponting 's list of needed research projects in the post this is a reply to
  13. JellyBabyKid

    Sleep problems in ME/CFS - discussion thread

    Yes! I have had to have an afternoon nap since I had lung surgery (one of the contributors to me ME) 14 years ago and it is not an option - my body will insist at some point and if I try not to, or have over done it I wake up at 1am for at least an hour - and this totally disrupts how I feel the...
  14. JellyBabyKid

    Ignored, blamed, and sometimes left to die – leading expert ME explains origins of a modern medical ‘scandal’, Chris Ponting, The Conversation, 2024

    Apparently so https://www.theguardian.com/books/2020/sep/12/susanna-clarke-i-was-cut-off-from-the-world-bound-in-one-place-by-illness
  15. JellyBabyKid

    UK: Daily Mail: Half of women fear the NHS treats their health as a 'second-class issue'

    The question remains; how do we change the system so that disbelief isn't the default response to anyone ?
  16. JellyBabyKid

    UK: Daily Mail: Half of women fear the NHS treats their health as a 'second-class issue'

    or my personal favourite; Would you like something for your anxiety (I have medically induced ptsd after almost dying 3 times)
  17. JellyBabyKid

    UK: Daily Mail: Half of women fear the NHS treats their health as a 'second-class issue'

    Thas was my conclusion, and felt it was rather wandering into the pope being catholic and bears using woods levels of reporting. Of more relevance is; why is the NHS (and DWP) default setting to automatically disbelieve those trying to use their services in the first instance and how do we...
  18. JellyBabyKid

    UK: Daily Mail: Half of women fear the NHS treats their health as a 'second-class issue'

    And yet psychology tells us that we are social creatures and altruism arose because we were concerned with the good of the tribe. I am amazed how often the default setting is disbelief, especially when so many times this has been proved to be both wrong and harmful
  19. JellyBabyKid

    UK: Daily Mail: Half of women fear the NHS treats their health as a 'second-class issue'

    Half of women fear the NHS treats their health as a 'second-class issue', damning poll reveals https://www.dailymail.co.uk/news/article-13959565/amp/half-women-nhs-health-second-class-poll.html Archive link to avoid giving the Mail clicks https://archive.ph/IBv32 "A third of women said they...
  20. JellyBabyKid

    What do people want me to ask Sonya Chowdhury on Friday

    Curious. I was not aware of this, I thought it was just me. Can you point me in the direct of more information on this at all please? Thanks
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