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  1. JaneL

    Coronavirus - worldwide spread and control

    This was Sir Patrick Valance, England’s chief scientific adviser, speaking on BBC Radio 4’s Today programme a couple of weeks ago: https://www.theguardian.com/world/2020/mar/13/coronavirus-science-chief-defends-uk-measures-criticism-herd-immunity So I think we pretty much have it on record...
  2. JaneL

    UK: REGISTER AS A VULNERABLE PERSON TO GET CORONAVIRUS SUPPORT

    I had a reply to from my GP regarding the government’s extremely vulnerable list: So I think my GP has done as much as he can which I’m very grateful for. I will write back to thank him for his support on this. I’ll wait to see if it results in me getting on the list (I don’t think I want to...
  3. JaneL

    UK: REGISTER AS A VULNERABLE PERSON TO GET CORONAVIRUS SUPPORT

    My MP has already responded to my second email that I posted above (the one where I explained the problems for many in using local volunteer groups and urged him to keep pursing the government in getting the list of vulnerable people extended to include those on higher rate PIP and/or in the...
  4. JaneL

    UK: REGISTER AS A VULNERABLE PERSON TO GET CORONAVIRUS SUPPORT

    I think they changed the form so that it was no longer possible to submit it unless you agreed that you had one of the listed heath conditions. I know this because the first time time I tried to fill it in I said I didn’t have any of the listed conditions but was able to continue with the form...
  5. JaneL

    NICE ME/CFS draft guideline - publication dates and delays 2020

    From Dr Charles Shepherd’s latest ME Association blog on guidance for coronavirus: https://www.meassociation.org.uk/2020/03/me-association-full-guidance-coronavirus-and-me-cfs-by-dr-charles-shepherd-30-march-2020/
  6. JaneL

    UK: REGISTER AS A VULNERABLE PERSON TO GET CORONAVIRUS SUPPORT

    Great letter letter Trish, I hope your MP listens and takes action! As I mentioned on the other thread my MP has been quite supportive in response to my email to him and has said he will pass on the suggestion to the Secretary of State on extending the list of vulnerable people. However, he...
  7. JaneL

    UK: REGISTER AS A VULNERABLE PERSON TO GET CORONAVIRUS SUPPORT

    Yep, same here! I have emailed my GP about this too. Will let you know if I get a response.
  8. JaneL

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

    In case any one else needs them, here are the contacts for Ocado complaints: https://www.complaintsdepartment.co.uk/ocado-uk/ Given the response I had from the customer service team, I recommend going straight to Tim Steiner (CEO).
  9. JaneL

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

    I’ve emailed Tim Steiner, the CEO of Ocado to complain. I forwarded him my original email as well as the response I received from their customer team. Will let you know if I get a reply...
  10. JaneL

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

    Letter I sent to Ocado customer services: And their reply: Not good...
  11. JaneL

    Coronavirus - worldwide spread and control

    This study (not peer reviewed) found that the neutrophil to lymphocyte ratio predicts severe illness in patients with Covid-19: https://www.medrxiv.org/content/10.1101/2020.02.10.20021584v1
  12. JaneL

    Doctors talk about Covid-19

    Yes this is excellent. It makes the point that even younger, healthy people are not invincible to this virus and are at significant risk of severe illness and death. If more people understand this then we will see better compliance of social distancing/isolation practices, which is urgently...
  13. JaneL

    Coronavirus: Advice from ME organisations

    That sounds pretty bad Trish! Would it be worth contacting the manager of your care agency about this? After reading your post I decided to email the manager of my own care company. I told her about my concerns about the possibility of a coronavirus epidemic in the UK and said that I hoped...
  14. JaneL

    A proposal for ME Action: a commitment to evidence-based medicine

    Perhaps you are thinking of something like this as far as medical evidence is concerned? Is this what you mean by status? I’m not sure where LDN and CCI fit in terms of the above hierarchy but perhaps someone more knowledgeable than me will confirm (I’d guess near or at the bottom of the...
  15. JaneL

    A proposal for ME Action: a commitment to evidence-based medicine

    I disagree that a spectrum of scientific consensus is critically important. This is because the degree of scientific consensus does not always correlate with the quality of scientific evidence, which is what really matters.
  16. JaneL

    Gary Burgess - The ME show, and updates about Gary's health.

    Very sorry to hear your news @Gary Burgess. It’s good to know that you’re being well looked after by your medical team and that things are progressing quickly with the treatments. Sending you my very best wishes and all the strength you need.
  17. JaneL

    A proposal for ME Action: a commitment to evidence-based medicine

    Which treatments for ME should be classed under the second category? What makes a treatment a “good elective scientific bet”?
  18. JaneL

    Closed England & Wales: Survey: Involving adults with severe ME/CFS symptoms in developing a NICE guideline on ME/CFS

    That’s really helpful, thanks. I tried the save function and leaving the tab open but unfortunately neither of these options worked for me. I got halfway through the survey which was a lot of effort and then lost everything after taking a break :( I will re-do it but next time I will...
  19. JaneL

    Scottish MP Carol Monaghan and her work for people with ME/CFS

    Thank you @Sly Saint for sharing this. Carol Monaghan has done so much for PWME and it would be a great loss to our cause if she were not re-elected.
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