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  1. NelliePledge

    UK - NHS England online tool and clinics for long Covid.

    Liaison psychiatry teams all round the country no doubt offering their services....... i hope there’s going to be some some actual testing and medical treatment. Definitely will be interesting to see how this turns out in practice.
  2. NelliePledge

    Breathlessness and air hunger in ME/CFS

    I get out of breath very quickly if I have to walk uphill or stairs. I always put it down to being overweight but I can go a lot further on the level without gasping. I think I’ve always been a shallow breather and was absolutely hopeless at cross country running at school - I had to resort to...
  3. NelliePledge

    Well-known, famous people with Covid-19 and Long Covid

    Moderator note: Please be mindful of Rule 12 - No non-ME politics. Posts stating facts about President Trump will be allowed, but please avoid making any comments that could be seen as political. The thread has been reviewed and some breaches have been identified and dealt with.
  4. NelliePledge

    How do you cope with spreading yourself thin? :-(

    Thanks @ladycatlover i will do that eventually just don’t have the brain capacity to tackle it until my refurbishment project is finished. There’s so much physical and cognitive energy needed for decision making and moving stuff around in the house. you might need to remind me next summer...
  5. NelliePledge

    How do you cope with spreading yourself thin? :-(

    Excellent thread @Snow Leopard. I have things I would love to be spending my time on. I have some milder ME days when I can manage to do a lot more than on my worst moderate ME days. In theory I could do some stuff that would improve my quality of life I’m not even thinking at a wish list...
  6. NelliePledge

    Coronavirus - worldwide spread and control

    Seems like minimising any time outside home makes sense in those circumstances. And as for the cruise industry getting going again I’m speechless.
  7. NelliePledge

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

    I don’t know the practicalities for arranging the meetings, possibly it is Carol Monaghans office. Five days seems very short notice. Especially if the APPG is relying on PWME to mobilise to get invites out to MPs. Maybe it’s normal for APPGs? Do MPs get notified by an invite from the APPG...
  8. NelliePledge

    Does your ME feel like your initial infection?

    I had gradual onset, I had repeat episodes of laryngitis, swollen glands and flu type symptoms over a period of 3/4 years when my health deteriorated noticeably but not acutely. I continue to have sore throat associated with PEM, swollen glands only occur now when I am at my worst. Since...
  9. NelliePledge

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

    If you were picking between long covid and an ME diagnosis I think a lot of people would stick with Covid. despite the issues about perception of it being mild in younger people it has the advantage that 100% of the public have actually heard of Covid. How many of the public have ever heard of...
  10. NelliePledge

    News from Aotearoa/New Zealand and the Pacific Islands

    A post from this thread has been moved to a new thread about the ThinkGP programme. https://www.s4me.info/threads/australia-and-new-zealand-me-cfs-medical-education-thinkgp-online-program.17080/#post-260409
  11. NelliePledge

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

    Oh well done @Robert 1973. I mean she’s got 96k followers :thumbup:
  12. NelliePledge

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

    Well in reality has to be long covid as she doesn’t appear to have enough understanding of ME to be giving an accurate description of it But yes good point.
  13. NelliePledge

    A general thread on the PACE trial!

    I can understand why all these people are talking in terms of recovery and rehabilitation because why would they think any different. None of them who were previously healthy including the GPs have any specialist understanding about what it’s like to have a long term post viral illness...
  14. NelliePledge

    'Lab' testing - could dogs smell ME/CFS?

    Wouldn’t work in the U.K. how could you train a rat to drive a car with manual gearbox :whistle:
  15. NelliePledge

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

    Im absolutely not suggesting there’s any value at all in people diving in to respond on Twitter there are already some good responses. And I did see a tweet a few days ago where Dr Alwan said she wasn’t reading responses on social media as she had had so many.
  16. NelliePledge

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

    I’m posting this here and want to flag up that I have messaged ME Association to request that Charles Shepherd asks Nina Muirhead and Paul Garner to try to work with some of these Long Covid advocates possibly doing a seminar so that they at least have a basic understanding of ME. We...
  17. NelliePledge

    Review The vicious cycle of [FND]s: a synthesis of healthcare professionals’ views on working with patients, 2020, Barnett, Tyson et al

    Some posts from this thread have been moved to a new thread Epilepsy and non-epileptic or dissociative seizures (FND?) https://www.s4me.info/threads/epilepsy-and-non-epileptic-or-dissociative-seizures-fnd.17032/
  18. NelliePledge

    Coronavirus - worldwide spread and control

    U.K. independent SAGE (scientific advisory group) have produced a case study on the situation in Sweden A closer look at Sweden’s response to Covid-19 https://www.independentsage.org/a-closer-look-at-swedens-response-to-covid-19/
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