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  1. Simbindi

    Ensuring severely affected can be heard

    As an autistic person I find questionnaires really difficult and stressful, I end up in knots as none of the response options provided ever fit my thoughts on the issue. Also I can't just pick an answer and then forget about it, the fact I've not given a precise answer will take over my thoughts...
  2. Simbindi

    Covid-19 vaccines and vaccinations

    Yes, my choice is based on the fact that I live alone and am shielding anyway. I haven't been able to drive for the last year and now with cataracts and the problem with vision loss in my left eye (possible optic neuritis), I suspect it will be at least 6 months (if ever) before my sight will be...
  3. Simbindi

    Is ME a metabolic problem or a signalling problem?

    Forum members have really helped both clarify my understanding of, and also have given me the language to be able to much better describe and articulate, my symptoms.
  4. Simbindi

    Covid-19 vaccines and vaccinations

    I'm going to take the same approach, although I think my GP would probably offer me the Oxford vaccine via a home visit. The whole 12 weeks between jabs thing being unevidenced stresses me out, plus the fact that the Oxford vaccine may turn out to have a low efficacy too. I much prefer to wait...
  5. Simbindi

    Is ME a metabolic problem or a signalling problem?

    I also get severe problems with my eyes in PEM, which has been the case since I first got ME 28 years ago. It feels like my tears are acidic (or very alkaline?) and I want to tear out my eyes from their sockets just to stop the pain, but I have never been able to find out any metabolic problem...
  6. Simbindi

    Is ME a metabolic problem or a signalling problem?

    The more severe I've become, the more difficulty I have with falling asleep too, and like your daughter, the sick feeling gets worse through the night. I think @strategist has summed up this experience really well. I think I need to put this in writing to my GP, who still focuses on the fatigue...
  7. Simbindi

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    They have a lot of discussions about Long Covid on Times Radio: https://www.thetimes.co.uk/radio I'm listening to them discussing it right now, the presenter said it may be a future health crisis with up to half a million people affected by it (based on the 1 in 10 scenario) in the coming...
  8. Simbindi

    Is ME a metabolic problem or a signalling problem?

    I also find the PEM doesn't start until I have slept. If I really need to complete a specific task I have always aimed to do it on the same day, knowing it may be weeks or months before I can return to it if it's left unfinished. When I was less severe I was able to get a lot more done around...
  9. Simbindi

    Is ME a metabolic problem or a signalling problem?

    I've often thought this too. Edit: I definitely feel like I'm 'poisoned' after exertion, which gets worse the 2nd and 3rd day after it.
  10. Simbindi

    Anyone else in the U.K. had a letter about a covid testing study?

    Feeling some relief as my teacher daughter (the only family member who helps me/provides some care) has just told me she will now be getting a weekly test. However, I don't think this will be the more reliable PCR test, I haven't asked her which type they will be giving teachers (as opposed to...
  11. Simbindi

    UK - Resources for help getting food during quarantine and other supermarket related problems

    I now have to book Ocado slots at least 3 weeks' in advance, in November I could get one within a few days (this changed in December, but that was due to the usual Xmas issues). Waitrose is now fully booked in all their 'priority slots', which only show 2 weeks ahead. I haven't checked Tesco or...
  12. Simbindi

    The evidence base for physiotherapy in myalgic encephalomyelitis/chronic fatigue syndrome when considering PEM: a systematic review (2020) Wormgoor

    I worked out very quickly that exercise harmed me, back in the mid 90's, so would never have agreed to participate in a trial of GET. I am sure there are many other PWME like me, so any trial would never have been representative of patients. I am unsure how far back the ME charities were doing...
  13. Simbindi

    UK - Resources for help getting food during quarantine and other supermarket related problems

    I do the odd order with Ocado, mostly for store cupboard items as they have such a large range of organic items unavailable from other supermarkets in my area. My cats love their canned tuna in spring water, one can does all 4 of them, I give them it a couple of times a week (as they have...
  14. Simbindi

    UK - Resources for help getting food during quarantine and other supermarket related problems

    I hope Waitrose take this opportunity to expand, like Ocado has done. In my area I still had to book slots about 10 days ahead of time, but there was a choice of slots for the 10-14 day period. I don't know what time Waitrose add their next day's slot. I will try to work this out. I still have...
  15. Simbindi

    UK - Resources for help getting food during quarantine and other supermarket related problems

    I gave away most of the cans I had from my previous government food parcels to the local food bank last month, as I really don't like canned soup and am trying to change to eating organic food only. I think they may have had a lot of donations over the Xmas period as they are showing they have...
  16. Simbindi

    UK - Resources for help getting food during quarantine and other supermarket related problems

    So, we're back to struggling to get supermarket slots again... Despite getting priority delivery there was only a single slot available (for 2 week's time) when I just checked Waitrose. However, I have found Waitrose the best in my area recently, as good as Ocado. It appears that since they...
  17. Simbindi

    Anyone else in the U.K. had a letter about a covid testing study?

    Turns out my eldest was invited to do this, but she had just moved from the address the letter was sent to and they said she therefore couldn't participate (despite moving within the same town). It would have been useful for her as a secondary school teacher. Her school had been doing well with...
  18. Simbindi

    The biology of coronavirus COVID-19 - including research and treatments

    There is also this information on the Oxford site: https://www.research.ox.ac.uk/Article/2020-12-30-oxford-vaccine-regulatory-faq
  19. Simbindi

    The biology of coronavirus COVID-19 - including research and treatments

    The policy seems to be more about reducing the immediate pressure on the NHS than achieving herd immunity in the general population in the shorter term: https://www.ox.ac.uk/news/2020-12-30-oxford-university-welcomes-uk-regulatory-emergency-use-authorisation-coronavirus
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