• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. emsho

    Ask your MP to sign EDM

    thanks for pointing out @SamanthaJ @Esther12 will message to get changed.
  2. emsho

    Ask your MP to sign EDM

    MEAction volunteers have been working with Stephen Timms MP to submit an Early Day Motion to UK parliament, we need to get as many MPs to sign as possible in order for this to progress further. Please email your MP and ask them to sign, there are more details, a sample email and a parliamentary...
  3. emsho

    Scotland - services provision: seminar by Action for ME

    @anni66 I'm glad you found the meeting positive and it's good to hear what was discussed! I asked my mum to attend to voice opposition for CBT/GET and ensure the new Scottish AFME staff, who I think is new to the world of ME, knew about the damage it can cause. She was frustrated/depressed by...
  4. emsho

    URGENT: MEA asks if anyone who has been harmed by GET/CBT will speak to media this week re: PACE

    @Jenny TipsforME Good idea @slysaint will post on twitter
  5. emsho

    Press release: "PACE Trial: The Making of a Medical Scandal" avail. to journalists. Please highlight

    I've not listened to this yet, will try and check it out later. I agree and disagree with what you've said above . I agree that if articles are only focused on personal stories and how hard life is with ME, then the only audience is people with ME. But, when talking about what the gov has/not...
  6. emsho

    Press release: "PACE Trial: The Making of a Medical Scandal" avail. to journalists. Please highlight

    Okey dokes, it feels a bit strange to be sending out someone else's press release so just wanted to check! Think the only way Scottish journalists might cover is if we email them directly with all the details and provide case studies for human interest angle. Does anyone know if JHP/anyone else...
  7. emsho

    Press release: "PACE Trial: The Making of a Medical Scandal" avail. to journalists. Please highlight

    @Tom Kindlon @Jonathan Edwards When sending out press release, there is a list of contacts at the end. Is there a preferred person in the UK/Scotland that journalists should get in contact with? Or is it any of the contacts?
  8. emsho

    Press release: "PACE Trial: The Making of a Medical Scandal" avail. to journalists. Please highlight

    @Tom Kindlon We have a list of Scottish health journalists and will send round press release to them tomorrow. If anyone's on twitter be sure to @ any journalist/newspapers so they see Tom's tweets! A freelancer has got in contact asking if we have any case studies of patients with CBT/GET so...
  9. emsho

    #MEAction:Troubled by NICE guidelines? Three easy ways you can help

    @AndyPR thanks for sharing. I've been allowed to take over the MEActionUk twitter for a week to promote the #NICEisnotnicetoME campaign. The idea is that if you've been harmed by GET you share your picture @NICE and use the #NICEisnotnicetoME. Charities are all submitting official responses...
  10. emsho

    Ron Davis, Ashley Haugen, Linda Tannenbaum and Raeka Aiyar at IiME #OMF

    My mum is attending the conference at the moment and is sending a few photos over! Thought you might like to see this @Janet Dafoe (Rose49) . Think my mum is finding the conference a bit emotional, she looks a bit teary in some of the photos <3. Apart from attending a talk by Dr Shepherd a few...
  11. emsho

    Invest in ME Biomedical Research Colloquium 2017 #BRMEC7

    @Jo Best big thank you to all the volunteers who must be working hard to make the colloquim happen :thumbsup::thumbsup::heart:
  12. emsho

    Ron Davis, Ashley Haugen, Linda Tannenbaum and Raeka Aiyar at IiME #OMF

    How exciting! Thanks for sharing :). Love seeing photos of doctors from OMF and those that attend the Invest in ME. Somehow makes them more real ! My mum is heading to the conference later this week, wish I could go with her.
  13. emsho

    Gender bias, MUS, Epistemic Injustice: the evidence

    :thumbsup::thumbsup::thumbsup:
  14. emsho

    MEET OMF IN EUROPE! END ME/CFS WORLDWIDE TOUR BEGINS!

    thanks @Tom Kindlon have sent an email, fingers crossed :)
  15. emsho

    MEET OMF IN EUROPE! END ME/CFS WORLDWIDE TOUR BEGINS!

    Hey @Ben Howell is it too late to try to organise her to come talk in Scotland?!
  16. emsho

    BBC Radio Scotland - Friday May 12th at 10.45am onwards

    @AndyPR @trishrhymes In terms of the human interest story, you're right there's a reason my photo kept popping up. We were prepared for the fact there may be a backlash but knew human interest stories get more coverage and sympathy. We want to keep this up in Scotland and will keep trying to...
  17. emsho

    BBC Radio Scotland - Friday May 12th at 10.45am onwards

    @AndyPR @slysaint @dangermouse Thanks, it was my first radio ever interview. I was so nervous I was shaking. Brain fogged out a few times, but hopefully only pwme can tell! Apparently we were also on Radio Scotland at 8;30amish and 4:30pm so think Scottish peops will be sick of hearing our...
  18. emsho

    Edinburgh News: Gerry Farrell: Why are you ignoring ME, Ms Robison?

    @Cinders66, we've been discussing how to respond to this- ring fencing money is an excellent suggestion, thank you!
  19. emsho

    The Scotsman: Kevan Christie: Stereotyping still prevents ME from being taken seriously

    I'll ask my mum ;) she's the ones responsible for the good coverage!
  20. emsho

    The Scotsman: Kevan Christie: Stereotyping still prevents ME from being taken seriously

    If you could comment, share or thank @kevanchristie on twitter that would be fab!
  21. emsho

    Edinburgh News: Gerry Farrell: Why are you ignoring ME, Ms Robison?

    If anyone has a spare moment please share today's article: http://www.scotsman.com/news/opinion/kevan-christie-stereotyping-still-prevents-me-from-being-taken-seriously-1-4442502 And we need photos and stories for instagram: https://www.instagram.com/millionsmissing/?hl=en Please send to...
  22. emsho

    Edinburgh News: Gerry Farrell: Why are you ignoring ME, Ms Robison?

    Cheers guys! My mum and I worked really hard on press release so glad it's paying off. The fab journalist who wrote this was so enraged at the behaviour of W and co he's now helping with the protest! I'm a bit exhausted but looking forward to the protest on Friday. Don't know if you've seen...
  23. emsho

    12th Invest in ME International ME Conference 2017 registration is open

    Hey @Jo Best and @AndyPR (sorry) just because in threads you always seem a fount of knowledge and if Jo's not the right person to ask you might know who to direct this question to! Do you know how Invest in M.E invites guests? Do they rely on people like us getting in contact? If so can I send...
  24. emsho

    Europe gears up for its third #MillionsMissing Day of Action - May 2017

    @AndyPR that's my bad should be put up over the next few days :)
  25. emsho

    Europe gears up for its third #MillionsMissing Day of Action - May 2017

    @AndyPR Millions Missing Edinburgh Event is here: https://www.facebook.com/events/272397503207866/?acontext=%7B%22action_history%22%3A%22null%22%7D
  26. emsho

    The PACE trial [pro]: It’s time to broaden perceptions and move on. Keith Petrie, John Weinman

    :bang-head: In terms of the Cochrane review- "Psychology has a meta-analysis problem. And that’s contributing to its reproducibility problem. Meta-analyses are wallpapering over many research weaknesses, instead of being used to systematically pinpoint them." – Hilda Bastian Pretty much sums up...