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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Earthlyknees

    UK coronavirus - has anyone received a text saying they are in high risk category?

    Hi Andy, Thanks for replying, I am guessing as there have been no other replies then the majority of people in the UK with ME have not been put on the extremely vulnerable list. I have this morning received an NHS letter in the post saying the same thing as the text, so I am going to call my...
  2. Earthlyknees

    UK coronavirus - has anyone received a text saying they are in high risk category?

    I was just wondering if anyone has received a text from the UK government saying they are at high risk of severe illness, and to remain at home for 12 weeks? It then goes on to say I can sign up for support for help with getting food and basic care. I received this text today and am surprised...
  3. Earthlyknees

    Working from home part-time - Etsy?

    Hello everyone, I have had M.E. for 25 years since I was a child, plus a lot of other chronic conditions, and work wise all I have managed is one part time admin job in an office for two years until it caused a relapse when I had to resign. I was just wondering if anyone here has had any...
  4. Earthlyknees

    Jen Brea: What happens when you have a disease doctors can't diagnose - TED Talk!

    @M Paine - I agree with you, doctors need to understand first, then the right information will be in the media and the general public will receive the truth about ME. As it is, when I try and explain that the NHS treatments for ME in the UK are in fact often harmful, I just end up looking like...
  5. Earthlyknees

    Jen Brea: What happens when you have a disease doctors can't diagnose - TED Talk!

    Like some others on here, I had a frustrating response on Facebook - I posted the video with a comment and have had only four likes. I have posted about ME before and never get much of a response, but when I posted about breast cancer (which I've also had) I had a whole ton of likes and...
  6. Earthlyknees

    Concerns about local ME group

    Yes I could imagine if a support group only ever chatted about the illness that could get really draining! I guess it would work best if people met up and happened to have things in common other than ME so could chat more generally. I agree with you re goals, unless very severely affected we...
  7. Earthlyknees

    Concerns about local ME group

    Thank you @purrsian :). I hope you are having a good first day of 2017 and thanks for your reply. It's all her unfortunately, she started in 2015 by launching a meet up group in my home town, with accompanying Facebook page and closed group, then a few months ago set up another in a different...
  8. Earthlyknees

    Concerns about local ME group

    Hello Everyone, I hope you all managed some nice times over Christmas and aren't paying too much for it now. I just thought I would give a little update on the situation with regards this support group. I was on the verge of leaving the Facebook group for it due to everything mentioned already...
  9. Earthlyknees

    Concerns about local ME group

    Thank you, yes it has been hard. I moved here almost three years ago now and have really struggled to meet new people as I am not well enough to work. I think without a job where you get to know colleagues, or children putting you in contact with other parents, it's really tough to meet...
  10. Earthlyknees

    Concerns about local ME group

    Gosh thank you for so many supportive replies already! I wasn't expecting that :-). It was a relief to read your reactions to how this group is being run, as I wasn't sure if I was just having overly high expectations! And thank you Dr Shephard for taking time out of your Sunday to reply as...
  11. Earthlyknees

    Concerns about local ME group

    This first time posting on this forum so hello to everyone and I hope you are all having as good a day as possible. I live in a small town in England and last year joined a local ME support group which had just been set up, with accompanying Facebook group. I have had ME since age 11, am now...