Rezultati pretraživanja
  1. prije 25 minuta

    As the publication of new ME guidelines are delayed, once again refuse to take action to mitigate the harmful recommendations that still stand in the existing guideline. Take ME Seriously and mitigate the harm caused!

    2 korisnika označavaju da im se sviđa
  2. prije 30 minuta

    Alternate rest & activity. Find an activity level to avoid boom & bust

  3. prije 49 minuta

    . you must . The existing guidelines have caused irreparable damage to people with ME.

    1 korisnik označava da mu se sviđa
  4. prije 2 sata
    Odgovor korisniku/ci

    Sorry about your tooth extraction. I had one extracted a few weeks ago and found out yesterday another had to come out. Not looking forward losing another one, way to many now. I really think the has alot to do with it. Hope you get some much needed rest.

    1 reply 1 korisnik označava da mu se sviđa
  5. prije 2 sata
    Odgovor korisniku/ci

    Thank you 4 raising awareness. Hard to have nuanced information using Twitter. Fully understanding reality requires unlearning the narrative that this is fatigue syndrome caused by patient attitude/behavior. Proper recognition leads to fair disability judgements.

    2 korisnika označavaju da im se sviđa
  6. prije 2 sata

    What to answer when asked the cause of  

  7. prije 3 sata
    Odgovor korisnicima

    Thanks -- with I was an avid , competed at World Champs 3x. But with , I currently can't walk 10 minutes slowly on flat ground.

    2 korisnika označavaju da im se sviđa
  8. prije 4 sata

    Coming up tonight & 8pm GMT each Wednesday The aim is for to share stories of how this illness affects everyday life and boost awareness Please join in if you are able 🙂 Use the # Share stories Spread the love Fight the invisibility!

    6 proslijeđenih tweetova 19 korisnika označava da im se sviđa
  9. prije 5 sati

    The intense eye bags of someone who dared to leave the house two days ago I actually slept through the night for once despite looking like this 😂 gotta love that PEM

    1 reply 7 korisnika označava da im se sviđa
  10. prije 6 sati

    Another day stolen by !

    1 korisnik označava da mu se sviđa
  11. prije 6 sati

    Lest we run out of hope INVEST IN BIOMEDICAL RESEARCH NOW! Teach doctors and nurses, staff at social services, in care agencies, insurance companies, benefit agencies, about

    1 reply
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  12. prije 6 sati

    Anyone can get ! We used to be artists, teachers, opera singers, social workers, students, pupils, civil servants, carers, doctors, nurses, researchers, cooks, coders, airline pilots, bakers, movers & shakers, poets, truck drivers, secretaries, waiters, film makers.

    1 reply
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  13. prije 6 sati

    11/ patients are sick..... ...very sick. They need care, respect, acknowledgement and support

    6 replies 15 proslijeđenih tweetova 69 korisnika označava da im se sviđa
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  14. prije 6 sati

    1/ Thread Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is it really that bad? Trigger warnings: The studies below paint a very bleak picture

    12 replies 81 proslijeđeni tweet 141 korisnik označava da mu se sviđa
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  15. prije 17 sati

    LEFT OUT - Full Documentary (Subtitled CC) via Please watch ❤️

    2 proslijeđena tweeta
  16. prije 20 sati

    "At first when I queried ME, I was told by a GP it was probably depression, and even if it was ME, the cure was the same—graded exercise, CBT and antidepressants. I diligently followed this program and went from being mildly affected to losing my mobility (Record 693)."

    From: Dismissing chronic illness: A qualitative analysis of negative health care experiences Another useful & sympathetic paper from Leonard Jason team HCP=health care professional
    1 reply 7 proslijeđenih tweetova 20 korisnika označava da im se sviđa
  17. 4. velj

    Free full text: "Potential benefits of a ketogenic diet to improve response and recovery from physical exertion in people with / (ME/CFS): A feasibility study" Very small study. 1/n

    1 reply 10 proslijeđenih tweetova 26 korisnika označava da im se sviđa
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  18. 4. velj

    Cool now I get to spend > $1000 on an MRI that will come back "normal" to rule out MS because there's no diagnostic test for and my tremors worried my doctor last visit. Wanna help me pay for it I could use some help!

    9 proslijeđenih tweetova 24 korisnika označavaju da im se sviđa
  19. 4. velj
    Odgovor korisniku/ci

    As someone living with for 22 years, I am even more shocked by the silence and inaction for decades about the millions of people with The silence is so deep, vast majority reading this tweet won't even have heard of Myalgic Encephalomyelitis.

    6 replies 24 proslijeđena tweeta 58 korisnika označava da im se sviđa
  20. 2. velj

    PACING . . . 🧐 Gotta B kidding. As If That In Any way Gives us Our Lives Back☠️ ☠️

    5 replies 5 proslijeđenih tweetova 31 korisnik označava da mu se sviđa

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