Joan McParland

@JoanMcParland

Founder/voluntary co-ordinator, patient charity Hope 4 ME& Fibro NI Sudden onset ME Oct1999 ‘Work’ horizontally for short spurts on iPad. Views here are my own.

Newry, Northern Ireland
Vrijeme pridruživanja: svibanj 2013.

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  1. Prikvačeni tweet
    28. ruj 2019.

    28/9/2019 59 sec reality check from our Sept conference, we can only hope someone in authority will be equally moved enough to address the continuing deafening silence on

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  2. prije 20 sati

    We have many more examples-this one speaks loudly on urgent need 4 education/awareness NIhealthcare providers and/or their children who get are even more desperate/angry than those of us from other professions.

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  3. proslijedio/la je Tweet
    2. velj

    If you are a citizen of the European Union, please go on-line and support the petition for biomedical research on Myalgic Encephalomyelitis (no 0204/2019). Non-EU citizens may sign the paper version.

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  4. proslijedio/la je Tweet
    1. velj

    Dear , we are looking for someone with a blog about M.E. / Chronic Illness that would be prepared to blog about . We would love to hear from you if you feel you can help.

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  5. proslijedio/la je Tweet
    28. sij

    More on that deal with King's College London...Company website makes over-the-top claims of "dramatic" and "potentially game-changing" symptom improvements from web-based CBT program:

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  6. proslijedio/la je Tweet
    2. velj

    Latest "News in Brief", summarising ME/CFS and related news for the week starting January 27, collated by , Kalliope and others. <>

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  7. 2. velj

    NB Change of date to Monday 3rd February. May be of interest to sympathetic healthcare providers also All v welcome

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  8. 2. velj

    When a healthy good friend changes ‘are you too tired for a visit’ to ‘Are you too ill for a visit’ Ah we’re finally getting somewhere!

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  9. 2. velj

    Here’s a proper stickman for A bolt of lightning and ‘pushing through’ diagnosis just doesn’t cut it!

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  10. 2. velj

    5 people followed me and 3 people unfollowed me // automatically checked by

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  11. 1. velj

    The desperation out there is horrific when Mum of 14yr old child with bursts into tears on the phone after 10min call & all u can do is refer to Dr. who is knowledgeable abt the disease No cure no effective treatment offered-just listened & believed

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  12. 1. velj

    . when the most exciting thing in yr life is reading stuff like this and willing it to happen

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  13. 31. sij

    quotes from & CMO & research & Westminster , not patients themselves

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  14. proslijedio/la je Tweet
    31. sij

    Last chance for people in the UK to sign the petition calling for more EU funding for research. Link below gives instructions on how to sign up and sign.

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  15. proslijedio/la je Tweet
    30. sij

    A Machine Learning Approach to the Differentiation of Functional Magnetic Resonance Imaging Data of Chronic Fatigue Syndrome (CFS) From a Sedentary Control

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  16. 31. sij
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  17. 31. sij
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  18. 31. sij

    was called ‘mistaken illness beliefs, depression, laziness, work-shyness, it’s all in your head, chronic fatigue/tiredness & more’ Right up to the day fMRI scans showed its an inability for the body to produce energy on demand. Ulcers were caused by stress too! We can dream

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  19. 30. sij

    No one sees the preparation needed to escape the cage & no one only close family see the aftermath. We have to chose our battles v carefully & weigh up if guaranteed crash will be worth it BUT it’s only sometimes we actually have a choice! & every crash risks irreversible damage

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  20. 30. sij

    one person followed me and 2 people unfollowed me // automatically checked by

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  21. 29. sij
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