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  1. lunarainbows

    DecodeME - UK ME/CFS DNA study underway

    that is really weird. But they have this article which is currently #2 on their website: https://www.newscientist.com/article/mg24632881-400-why-strange-and-debilitating-coronavirus-symptoms-can-last-for-months/ “Why strange and debilitating coronavirus symptoms can last for months From...
  2. lunarainbows

    United Kingdom: ME/CFS in The Times (including Sean O'Neill)

    It’s ok and valid to criticise someone if they are writing something that directly harms people. I don’t care if she’s got better or not. I care that she’s writing a letter saying she is “horrified” that GET will be removed, and giving her anecdote as evidence, when people have suffered...
  3. lunarainbows

    The effectiveness of cupping therapy on chronic fatigue syndrome: A single-blind randomized controlled trial, 2020, Xiu-dong et al

    Why do we still get studies like this? :thumbsdown: Or do other illnesses also suffer from these kinds of studies (I don’t know, I haven’t looked)?
  4. lunarainbows

    The Times: Infectious diseases expert warns of spike in ME cases

    I will do that when I next go on the times. (P.S I also am not a normal subscriber usually - I signed up as a subscriber for now because of their ME articles, it’s actually free and possible for anyone to sign up now because of their 1 month free trial! :) )
  5. lunarainbows

    United Kingdom: ME/CFS in The Times (including Sean O'Neill)

    Writing about how it horrifies her that people won’t be able to get GET because of those of us who “campaign” and “form groups“, is different to writing about reiki & homeopathy though. Reiki and homeopathy doesn’t cause sufferers to deteriorate permanently from mild/moderate to severe or very...
  6. lunarainbows

    United Kingdom: ME/CFS in The Times (including Sean O'Neill)

    Letters like this (from Helen Nicholls) do us so much harm. It “horrifies” her that others won’t get GET? I wonder if it horrifies her to see children made bedbound through exercise? Or to see adults made paralysed or unable to sit up after exercise? How can she know who gets better...
  7. lunarainbows

    The Times: Infectious diseases expert warns of spike in ME cases

    From what I understood, they can just tick yes or no to the clinicians diagnosis, but don’t have to provide proof. (I understand why you’ve done this, to make it easier to participate), but essentially, couldn’t someone just tick yes to the diagnosis, and then go on to the questionnaire, and...
  8. lunarainbows

    Coronavirus - worldwide spread and control

    Today the U.K. had 1,118 new cases (officially). We still don’t know how many people have been tested though - so how can we put that figure into context? If they’re testing a tiny amount of people, then that figure wont be accurate. Number of people tested has been unavailable for..how long...
  9. lunarainbows

    Coronavirus - worldwide spread and control

    Also, the govt are still heavily pushing antibody tests; https://news.sky.com/story/coronavirus-warning-over-covid-19-antibody-tests-given-to-nhs-and-care-workers-12014343 Coronavirus: Warning over COVID-19 antibody tests given to NHS and care workers “The government purchased 10 million test...
  10. lunarainbows

    Coronavirus - worldwide spread and control

    This is what happens when the govt has no rules about people travelling anywhere they please, going where they want outside, and being outside for unlimited times. Major incident declared as people flock to England's south coast...
  11. lunarainbows

    Whether to have a flu vaccination

    @Perrier ive had a very negative reaction to the flu vaccine since I became ill with ME. The first time, I went out a few days after the vaccine in the wheelchair to the shop around the corner from me, I subsequently became very unwell & deteriorated and didn’t recover from that back to where I...
  12. lunarainbows

    The Times: Infectious diseases expert warns of spike in ME cases

    I agree @strategist Reading some of the other comments on that article (not the ones I’ve pointed out here), I’m reminded once again why I try not to read comments underneath articles. A lot of very ignorant people including “have you thought maybe it’s your lifestyle choices” that make you...
  13. lunarainbows

    The Times: Infectious diseases expert warns of spike in ME cases

    Retired doc says this... I don’t agree with what they say, too tired to articulate more (woke up at 5.30am).
  14. lunarainbows

    The Times: Infectious diseases expert warns of spike in ME cases

    I just skimmed it and noticed IAPT for psychological help/anxiety. But in general there seems to be a lack of anything relating to “post viral fatigue”, or ME-like symptoms, which seems odd. So I wonder then if these people will be sent onto the usual CFS clinics after these post Covid clinics...
  15. lunarainbows

    The Times: Infectious diseases expert warns of spike in ME cases

    There is someone in the comments of the article, that says a colleague has been referred to “post Covid clinics” that have been set up in London. Anyone know any more? Very worried this is GET & CBT...
  16. lunarainbows

    The Times: Infectious diseases expert warns of spike in ME cases

    Aaw Big hugs Squeezy :hug: you’re not alone, :( I think many of us end up doing that, so deep is our trauma and the gaslighting having been done to us.
  17. lunarainbows

    The Times: Infectious diseases expert warns of spike in ME cases

    I think this might work : (sharetoken): https://www.thetimes.co.uk/article/a3eba54e-b648-11ea-b6a1-482b5c73d91f?shareToken=4e103e03d8b58d5d2b4fb14ef6169419 however I don’t seem able to do it for other articles.
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