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  1. JellyBabyKid

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2023 (including government plans to scrap the work capability assessment)

    Announced yesterday on the DWP page of gov.uk; Back to work boost for disability benefit claimants as ground-breaking employment scheme expanded https://www.gov.uk/government/news/back-to-work-boost-for-disability-benefit-claimants-as-ground-breaking-employment-scheme-expanded "A pilot scheme...
  2. JellyBabyKid

    Claire Fox (Fiona's sister)

    From George Monbiot's article, linked in the tweet in this post "Fiona Fox is also the director of the Science Media Centre, the public relations body set up by Baroness Susan Greenfield of the Royal Institution. It is funded, among others, by the pharmaceutical companies Astra Zeneca, Dupont...
  3. JellyBabyKid

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2023 (including government plans to scrap the work capability assessment)

    "The only thing necessary for evil to triumph in the world is that the good do nothing" I cannot in good conscience stand by and not respond to these consultations, no matter how unlikely we are to be heard. While I can continue to take action, I will. I hope you don't mind @tornandfrayed but...
  4. JellyBabyKid

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2023 (including government plans to scrap the work capability assessment)

    You can also email your response to: wcaactivitiesanddescriptors.consultation@dwp.gov.uk which is what I am currently working on, at great physical cost, with the long suffering @It's M.E. Linda I attended the online Disability Benefits Consortium meeting yesterday afternoon and the DWP were...
  5. JellyBabyKid

    Ocular and visual migraine, retinal migraine

    I have had this a couple of times thanks to the addition of Long Covid to my ME. It is truly terrifying as my vision gradual turned into a flickering honeycomb pattern, even when I closed my eyes. It lasted about 20mins each time and has happened when looking at my laptop. I think previous...
  6. JellyBabyKid

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2023 (including government plans to scrap the work capability assessment)

    This is super helpful, thank you. I have shared it with MEA, AfME and the Disability Benefits Consortium coordinator as well as my local group contacts. Hopefully this will help with numbers of responses.
  7. JellyBabyKid

    UK Government ME/CFS Delivery Plan consultation

    Apologies if this is actually a blindingly obvious question, but I have spent too much time reading various people's thoughts about this whole thing today and my brain has completely given up on me; does the Delivery Plan already have cross party support? Thanks in advance.
  8. JellyBabyKid

    Sudden realisation(trigger warning)

    if you are anything like me it is more of an uneasy truce from necessity
  9. JellyBabyKid

    Sudden realisation(trigger warning)

    I am sorry we have given you the idea that hope is gone. I spoke to a friend this morning who said that there is reason to be optimistic, but we still need to keep on keeping on. Making peace with it is a work in progress. It is hard. And an ongoing process. I am finding threads like this one...
  10. JellyBabyKid

    Sudden realisation(trigger warning)

    For me it is a case of hope for the best but plan for the worst. I have been sick for 15 years. This year marks the 10th anniversary of my ME/CFS diagnosis, and I have had Long Covid for two years - among other things. I have spent 7 years trying to make even the slightest dent in the...
  11. JellyBabyKid

    UK Government ME/CFS Delivery Plan consultation

    A random hard copy survey turned up in the post today
  12. JellyBabyKid

    CBT for Tinnitus

    That's what I thought. Does sod all for the ringing, but you get much better in filling in questionnaires the way we want you to :banghead:
  13. JellyBabyKid

    Sudden realisation(trigger warning)

    I am very grateful for this thread. It really resonates with me so much. I had the same realisation recently; the cavalry aren't coming. I am probably not going to get better in my life time. It is so brutal. It is hard not to be consumed with frustration that we could have been in a much...
  14. JellyBabyKid

    UK Government ME/CFS Delivery Plan consultation

    Hard copy received (after being chased on Thursday!)
  15. JellyBabyKid

    UK Government ME/CFS Delivery Plan consultation

    Never hurts to ask...?
  16. JellyBabyKid

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    Yes. Me. I score every morning immediately on waking and record symptoms every night. I recently added to which symptoms I track. I also message the team with any issues I find. I have not paid out for premium though, as I just bought a fitness tracker watch for less than twenty quid on amazon...
  17. JellyBabyKid

    UK Government ME/CFS Delivery Plan consultation

    Thank you @Adam pwme . Blimey that was a mixed bago_O
  18. JellyBabyKid

    UK Government ME/CFS Delivery Plan consultation

    @Andy This is massively helpful, thank you very much! :thumbup: I was trying to get to a simple set of instructions, but currently very foggy brain wasn't cooperating:facepalm:
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