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  1. Alis

    United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

    thanks @MrMagoo I did know a Sharon years ago with ME. She lived right at the other side of the city to me. I hope it wasn't her. :( I'll see if I can find out anymore on FB
  2. Alis

    United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

    Doe does anybody know which hospital she was in? This is my neck of the woods. not able to go on twitter.
  3. Alis

    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    Thanks hotblack. I may try that.
  4. Alis

    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    the one u sent to the lord in the HOL. Ach ..Sorry he was an old friend , so there were maybe a few emails. no worries. If there were a few - asking about him joining the APPG etc and about ME . I would probably get confused :confused: very easily done !
  5. Alis

    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    Would you feel able to share your full email? my MP has previously shown an interest in ME. and I have wondered about writing to him. but havent for two reasons - I am severe/v. severely affected and and can have difficulty with writng/typing at times as well as having severe cognitive issues/...
  6. Alis

    UK: Raise the DWP Christmas Bonus from £10 for the first time in 51 YEARS!!!*�

    Yeh . I was out by a couple of years. Gorden Brown became PM in 2007.And I thought it was £60, Not bad for someone with severe cognitive issues / brain fog etc. Also Not sure if it was solely because of the financial crash, there were other political reasons.
  7. Alis

    UK: Raise the DWP Christmas Bonus from £10 for the first time in 51 YEARS!!!*�

    its not the 1st time in 52yrs. it was raised before but only for 1 year. Cant remember exact year.it was when Gordon Brown was chanceler.[ sp :laugh: ] the Xmas before the year of him taking over as PM from Tony Blair so probably about 20 or so years ago.. it was raised to £60 for that year...
  8. Alis

    The Agreed Care/Activity Plan

    I am not able to read many of the posts. I had a care plan last year. I am severe / very severe. It was because of malnutrition. In my experience it wont work unless all the people involved have , or the majority at least , a very good understanding and acceptance of the complexities / issues...
  9. Alis

    Crowdfunding: Trial By Error: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff, Fall 2021

    Dont have any spare money:( but shared where I can . fb groups and twitter. thank you Dave
  10. Alis

    UK: Equality & Human Rights Commision: Inquiry into challenging decisions about adult social care [includes survey], closes 15th Sept 21

    If I am able to later will have a look. As a btw I am going to challenge the decision by social services that I dont need help with food [ or ' maintaining and managing nutrition' ]
  11. Alis

    Persistent Suffering:The Serious Consequences of Sexual Violence against Women and Girls, Their Search for Inner Healing.., 2021, Sigurdardottir et al

    yes. in conclusion. sexual violence has these extremely negative and long term consequences because of the interconnectedness of mind ,body and soul. I'm a sexual abuse/violence survivor and that sentence is like :banghead:
  12. Alis

    Science for ME submission to the NICE draft ME/CFS guideline consultation, December 2020, and submission on substantive errors, August 2021

    thank you so much to s4me and all the work the team has put in. I haven't been able to read much but felt tearful [in a good way] about some of the things in the submission re. severe /very severe me
  13. Alis

    Occupational therapy and ME/CFS

    the one OT I had who was awful was one I had to see for an assessment of my housing situation. but her report did help .despite her attitude . as I was having to use a wheelchair around the flat and the hall was very narrow and it was impossible to manoeuvre the electric wheelchair around . and...
  14. Alis

    Occupational therapy and ME/CFS

    my experience of OTs has been mostly good. I've seen 4 over the past decade. two were very good, helpful and supportive. one was pretty bad. one , who I saw a lot of when I was in hospital ,was wonderful. She was so supportive. She made a huge difference to my 2 week hospital stay. [amongst...
  15. Alis

    Whitney Dafoe Updates

    http://anilvanderzee.com/your-silence-is-killing-m-e/ haven't been able to read much of this but think it maybe relevant eta Anil is a gay man with severe ME
  16. Alis

    Ear muffs for better rest

    I think I am going to give them a go. They have a much higher noise blocking rating than the ones I use - the E.A.R foam ones.
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