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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. Action for M.E.

    UK ME/CFS Research Collaborative (CMRC) Annual Science Conference 2016

    Please note the web link to the livestream has now moved over to a new channel at http://www.ustream.tv/channel/TwL4nrrtvZ2 This is due to technical difficulties, but hopefully there will be no more of these - huge apologies for the problems this has caused with viewing. Recordings of all the...
  2. Action for M.E.

    [UK]Ask your MP to attend the APPG on ME meeting

    The meeting is 90 minutes long and finishes at 2pm - I've amended our post above. Thank you @AndyPR
  3. Action for M.E.

    [UK]Ask your MP to attend the APPG on ME meeting

    Huge thanks @AndyPR for posting on here - and huge apologies from us that we gave the wrong start time for the meeting in the story and template letter. The correct start time is 1pm, and the meeting will finish at 2.30pm. We have amended this now in our story and in the template letter too...
  4. Action for M.E.

    Take part in our Severe M.E. Symposium from home

    We would like to respond to some of the points made on this thread. As surveys by charities including Action for M.E. and the ME Association acknowledge, CBT, GET and GAT have benefit for some people with M.E. while others experience negative effects as a result. Further investigation is needed...
  5. Action for M.E.

    Take part in our Severe M.E. Symposium from home

    This is already posted on the Calendar of M.E./CFS events, but I hope you don't mind me highlighting it here as well - we're hoping to involve as many people affected by M.E. as possible. Bookings have closed now for our Severe M.E. Symposium in London on 14 November - but you can take part...
  6. Action for M.E.

    Ian Lipkin's talk to patients about his research inc plans for ME/CFS

    We've run a short clip from our film of the Prof Lipkin presentation through a piece of software that cleans up audio - it's still not perfect but we'd appreciate your feedback on whether it's any better. If so we'll use it on the whole film. Thanks in advance for your help with this.
  7. Action for M.E.

    Ian Lipkin's talk to patients about his research inc plans for ME/CFS

    Thanks for your feedback on the films, and apologies that you are experiencing such poor sound quality. We are trying to clean this up as we speak, and hope to upload improved versions as soon as possible. In the meantime, please do see Simon McGrath's excellent overview of Prof Lipkin's...
  8. Action for M.E.

    Thunderclap for M.E. Awareness Day

    Not sure what you mean by the phrase ‘officially sanctioned’ – we don’t receive any Government funding (apart from a small grant in Scotland) – but we absolutely agree that speaking out against too little biomedical research is essential. We do not have the huge resources necessary to become a...
  9. Action for M.E.

    Thunderclap for M.E. Awareness Day

    Peggy-Sue, we’re still analysing the detailed results of the survey – more than 2,000 people took part so we have an awful lot of data – and plan to release our report on M.E. Awareness Day (on 12 May) for maximum impact. Min, we are not exclusively a research charity. We also devote resources...
  10. Action for M.E.

    Thunderclap for M.E. Awareness Day

    You’re right, M.E. is much better known than it used to be. But many, many patients tell us that their friends, family, GPs and other professionals still don’t really understand what it means to have M.E., which is why we are trying to raise awareness of the facts. In addition to asking...
  11. Action for M.E.

    Thunderclap for M.E. Awareness Day

    Action for M.E. is planning a Thunderclap for M.E. Awareness Day. What is a Thunderclap? It's sort of like an online flash mob! If you sign up (it's free and only takes a minute), the Thunderclap website will automatically post our M.E. awareness-raising message on your...
  12. Action for M.E.

    Action for M.E. UK Patient Survey: please take part

    We launched the survey in the Christmas issue of our membership magazine, InterAction, which was published Friday 5 December, sending paper copies to all our members, but also giving them the option of completing it online as well. You can read the original online news story about it here -...
  13. Action for M.E.

    Action for M.E. UK Patient Survey: please take part

    Thanks both!
  14. Action for M.E.

    Action for M.E. UK Patient Survey: please take part

    Hello UK charity Action for M.E. is following-up its major 2008 report M.E.: what progress? by looking, five years on, at health, welfare, employment and education for people with M.E./CFS in the UK. With permission from Phoenix Rising's moderation team, I'd like to invite all those with...