Search results

  1. MrMagoo

    Open DSQ PEM survey - DePaul University, open October 2025

    That’s a lot of info about you. Can you explain briefly please?
  2. MrMagoo

    DePaul University, Center for Community Research: Symptom Questionnaires

    Thread to discuss latest PEM questionnaire here https://www.s4me.info/threads/dsq-pem-survey-depaul-university-open-october-2025.46456/
  3. MrMagoo

    Pacing - different meanings of the term pacing in ME/CFS and other conditions, and the problems this causes.

    Also colloquially I think of pacing having positive connotations - either doing a run, or boozing. It’s usually something enjoyable you will be doing for a long period “the Wedding is at 12 and they have the reception booked until 2am, so pace yourself at the bar!”
  4. MrMagoo

    Pacing - different meanings of the term pacing in ME/CFS and other conditions, and the problems this causes.

    I love rationing. In UK it has strong connotations of not being enough, meagre etc due to food rationing lasting so long after WWII. In the UK saying something is rationed really causes a “Sharp intake of breath” it’s not fun, it’s imposed on you, it’s hard to manage.
  5. MrMagoo

    Pacing - different meanings of the term pacing in ME/CFS and other conditions, and the problems this causes.

    After reading @Trish excellent overview, I think “pacing” needs replacing. It’s over. I’m not using that word again. What a muddle.
  6. MrMagoo

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

    I absolutely can’t wait to get stuck into it probably next month.
  7. MrMagoo

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

    I should add this was after I told her I can’t speak or cook or use an oven or leave the house. She was also unable to describe who would buy these hypothetical cupcakes from me.
  8. MrMagoo

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

    If only I could speak all day! The last time the job centre decided I needed a job, the woman was quite insistent I should start a business making cupcakes.
  9. MrMagoo

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

    Yeah, I can’t drive so I was pleased to hear about this. I suppose I have to do hospitality training. Or bricklaying. It feels like the question “how can we get more disabled people, unable to work, into jobs?” Had been given to a group of contestants on The Apprentice. They had half a day to...
  10. MrMagoo

    Disabled speaker barred from university debate on assisted suicide

    Oh no, the person has to go up in an evac chair.
  11. MrMagoo

    Disabled speaker barred from university debate on assisted suicide

    Erm - no. I’ve seen a stressed facilities manager offer to do that and they got a serious dressing down from the power chair user.
  12. MrMagoo

    Disabled speaker barred from university debate on assisted suicide

    Oh in that case they’ve learned a useful lesson. Not one that the good Dr needed to learn again, though.
  13. MrMagoo

    Disabled speaker barred from university debate on assisted suicide

    Yes the exploration of alternatives seems lacking. I’d guess they were just in some student Union room and they have the tiny lifts in the old building. Just shows that the organisers who invited him are in need of some serious training, they should be ashamed.
  14. MrMagoo

    Disabled speaker barred from university debate on assisted suicide

    I can imagine a lot of Edinburgh Uni is inaccessible to be honest.
  15. MrMagoo

    United Kingdom: ME Association governance issues

    Nail on head, that report. I know there was a bad experience with a CEO in the past, but they just need proper oversight by trustees, CEO’s get ousted all the time.
  16. MrMagoo

    Let's talk about taking responsibility and living with a chronic disabling illness

    So I do think that the issue is semantics. Some people are using a word in one way that isn’t the same as another person would use it. To take responsibility seems to mean you should change your illness/not be ill. Well we know that isn’t possible. Let’s think about the opposite. What does it...
  17. MrMagoo

    ME Association's 2024 Annual Report released.

    The behaviour from MEA over and at that meeting was despicable. I guess this is partly why.
  18. MrMagoo

    Guardian piece on"Lyme"

    I wish someone would ask PG if he would be open to the idea that his views are nothing special and would he consider not boring everyone with them.
Back
Top Bottom