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  1. Jan 3

    We call upon the to take action to: recognice M.E. as a "serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients"

  2. 3 hours ago
    Replying to

    Angry GP: "This is too much!" pointing at my list of symptoms I prepared for the meeting. Eh.. I'm sorry? But I think so too, that's why I'm here. =/ Neurologist: "There's no nerve there." when I asked about pain under my skin. How do we sense anything from the skin then?

  3. 20 hours ago

    My daughter () started 2019 with hospitalization. A specialist examined her and told her he doesn’t believe that M.E. can lead to severity like hers. Any advice on how to convince him? I am compilng links to very severe M.E. patients. Thx

  4. Replying to

    I can't tolerate a lot of vegetables or carbs. I can't tolerate lentils. Forcing me to eat that way would make me crash. Some people with ME do bad on vegan or vegetarian diet and can make us worse.

  5. 6 minutes ago

    NHS doctors have been dismissing ME patients for years, telling them it's 'all in their head', but no one wants our blood. Odd that. 🤔

  6. Still in a flare from Christmas, keep resting, keep waking up hoping today is better. Nope. I can’t wait any longer to write my essay, going to be a fun weekend 🤮 brain fog and omitting words.

  7. Jan 4

    “As an observer-participant, I can say with certainty that ME is not depression; neither is it laziness, nor something that can be 'snapped out of' or 'pulled together' and it is definitely not just tiredness.”

  8. Jan 1
    Replying to

    This falls in category of important circulatory info the community has been discussing for years. Learn more about circulatory impairment in in this important guest blog post by "Circulatory Impairment in ME"

  9. 3 hours ago

    And this B/c We have NO real treatment. Years and decades of ZERO treatment. Body canNOT heal itself With this one .

  10. 3 hours ago

    Hey , super short survey about our preferences for researching our quality of life with ME

  11. 2 hours ago
  12. Jan 2

    GET & CBT for ⁉️ Old OUTdated MISinformation that, indeed, needs correcting. Thank you !

  13. 31 Dec 2018

    .: You have the power to unlock key discoveries for ME. We cannot wait another generation for diagnostics and treatments. We demand outcomes for within the next 5 years. We need your bold leadership now! #DeliverResults4ME#MEAction

  14. 2 hours ago

    ✨Brand new flipping book for 2019 with some new designs Order at Delivery £3.50, free on orders £30 and over + labels advertising IiME to stick on your cards All my profit goes to

  15. Does anyone know what that knitting is called that you do with the giant needles I want a jumper knitted in it , memory difficulties 🙄

  16. Jan 3
    Replying to and

    I am optimistic that new treatments are in the pipeline. Stay strong. As your energy permits, try and plug into online communities for support. Suffering alone is intolerable. Hopefully sharing your suffering with sympathetic makes it bearable

  17. 3 hours ago
    Replying to

    There are two excellent films Unrest on Netflix and 'Voices from the shadows' on vimeo watch free BUT These were made by or with interest in ME Shocking underrepresentation in mainstream media :-(

  18. 30 Dec 2018

    Myalgic Encephaloymyelitis/Chronic Fatigue Syndrome research in 2018 Of these 13 diseases, has the worst quality of life Yet the number of scientific publications in 2018 comes a distant last

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  19. 5 hours ago

    Dear friends, I’m moving conversations on to a new twitter account: . I decided to share my journey because I was working in innovation. But I’m moving to a different sector with different interests. See you soon!

  20. 6 hours ago

    She had a person with ME once who had a detached retina & hadn't sought treatment because they assumed it was their ME. I hope that 2019 is the year that feel heard and treated by drs so no more people risk damage because we just assume no one will believe or treat us.

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