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  1. JellyBabyKid

    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    How did they arrive at this magic figure? If I attempted to do 30 mins exercise it would probably finish me off! Does this happen with everything medical now; seems harmless <<shrug>> Best guess is not evidence
  2. JellyBabyKid

    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    Thanks for looking into this Trish You can take screenshots (and rolling screenshot for long pages) of apps on your phone and use Google lens in Google photos to copy text to paste to another document or a post here. I also use voice typing on my phone and laptop. Hope this helps
  3. JellyBabyKid

    United Kingdom: ME Association news

    Really? I did not know that. That is disappointing as I keep being pointed to groups hosted on there and had hopes for some decent non-ME conversations.
  4. JellyBabyKid

    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    Thank you for your summary, clarification and investigations @Trish . This is all extremely opaque and very concerning.
  5. JellyBabyKid

    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    It feels like we are in a nightmare endless loop of fighting the same nonsense a certain person started in an endless, pointless death spiral - it never goes away, they keep saying the same thing over and over again because this time it will work, this time they will get the answer they want and...
  6. JellyBabyKid

    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    I suspect they are counting on none of us having the energy, and who would listen anyway..?! This stuff is all out in the world and has made zero difference. They have so effectively gas lit us and poisoned the well that a) it sounds like an insane conspiracy theory and b) we can be dismissed...
  7. JellyBabyKid

    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    Quite literally; the PROMS project links back to a paper published in 2013 which I understand links back to another arm of the original PACE project. I feel this is bigger than even this discussion and the info should be passed to George Monbiot.
  8. JellyBabyKid

    United Kingdom: ME Association news

    Sorry! Didn't read this properly . Thanks for paying proper attention Trish :)
  9. JellyBabyKid

    United Kingdom: ME Association news

    It was all moved to one thread: https://www.s4me.info/threads/the-elaros-nhs-digital-system-for-patient-clinician-digital-sharing-questionnaire-data-includes-yorkshire-rehab-scale-and-open-oh-app.39324/
  10. JellyBabyKid

    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    Thank you for this post @Trish . You have joined a lot of dots that I had spotted and was struggling to make sense of. This is extremely concerning indeed. I also fear that any concerns raised will be attributed to us being "anti-recovery activists" and dismissed. Edited for spelling errors
  11. JellyBabyKid

    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    ELAROS have replied to the comments on the MEA Facebook post: [MEDIA=facebook]1163775829109781[/MEDIA] And directly to one person's concerns, saying that the DWP will have no access to data, they are merely a funder.. MEA, particularly Dr S, are very insistent that MEA are not endorsing this...
  12. JellyBabyKid

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

    Much like the infected blood scandal, the post office scandal - which had the justice system involved as people went to prison, Hillsborough, which had the police and mainstream media complicit. It is all based on people's need to disbelieve other people's reality and think themselves superior...
  13. JellyBabyKid

    UK House of Lords/ House of Commons Questions

    1. Where did it go? 2. What treatments/outcomes do you have to show for this investment? 3. covid is not "over" so why are the clinics being closed / defunded? Maybe sound less pleased with yourselves when you have achieved the square root of nothing and wasted £314 million doing it Full...
  14. JellyBabyKid

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    It wasn't entirely wasted; I found it incredibly helpful and learned things :)
  15. JellyBabyKid

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    Has this one been shared yet: https://www.bmj.com/content/389/bmj.r977/rr-19 Lots to like, but particularly: "The use of biomedical terminology to repackage psychosocial models - referred to in rhetorical studies as “concept laundering” - is another red flag. Referring to “dysregulation”...
  16. JellyBabyKid

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 and 2025

    It would be interesting to repeat that back to your MP and say this is what you promised in your manifesto and is the opposite; explain what happened But you said she hadn't responded and I suspect you will get the stock "things were worse than we anticipated" response even if you did.
  17. JellyBabyKid

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 and 2025

    This is very well put. Would you mind if I quoted it to my MP and in my green paper response? One of our group has an MP meeting I have offered to right a briefing for, and this would be very helpful indeed.
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