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Severe ME day: August 8 2019

Discussion in 'General ME/CFS news' started by Dolphin, Aug 1, 2019.

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  1. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Just a thread for things related to this.
     
    Dolphin, Aug 1, 2019
    #1
    Sean, AliceLily, Andy and 16 others like this.
  2. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Dolphin, Aug 1, 2019
    #2
    Sean, AliceLily, Andy and 8 others like this.
  3. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Dolphin, Aug 1, 2019
    #3
    AliceLily, Andy, JaneL and 9 others like this.
  4. Andy

    Andy Committee Member

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    Merged thread

    Introducing Severe M.E. Week from the ME Association

    www.meassociation.org.uk/2019/08/introducing-severe-m-e-week-from-the-me-association-05-august-2019
     
    Last edited by a moderator: Aug 5, 2019
    Andy, Aug 5, 2019
    #4
    MEMarge, AliceLily, Joh and 9 others like this.
  5. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Hopefully we can get #SevereMEday to trend on Twitter like we did a few years ago. Best not to use it in tweets in advance as supposedly the bigger the contrast between background usage levels and current usage levels is a factor in what trends rather than solely raw numbers.
     
    Last edited: Aug 5, 2019
    Dolphin, Aug 5, 2019
    #5
    MEMarge, AliceLily, Andy and 7 others like this.
  6. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Kalliope, Aug 7, 2019
    #6
    adambeyoncelowe, MEMarge, Annamaria and 14 others like this.
  7. Naomi10

    Naomi10 Established Member (Voting Rights)

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    Naomi10, Aug 7, 2019
    #7
    MSEsperanza, Lisa108, Sly Saint and 9 others like this.
  8. Joh

    Joh Senior Member (Voting Rights)

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    Last edited: Aug 8, 2019
    Joh, Aug 8, 2019
    #8
    Ebb Tide, JaneL, rvallee and 10 others like this.
  9. Kalliope

    Kalliope Senior Member (Voting Rights)

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    MEA Press Release: Severe ME Day - M.E. sufferers hit out at "humiliating" DWP benefit assessments

    For Severe ME Awareness Week, charity the ME Association, lays bare the struggle faced by members to obtain the basic Personal Independence Payment, a benefit for people who may need help with daily activities or getting around because of a long-term illness or disability.

    The way in which M.E. symptoms fluctuate throughout the day and from day-to-day means that snapshot assessments are often inaccurate.

    For example, while a person may be able to walk 20 metres, and prepare a meal, they may not be able to do these tasks in close succession or even on the same day.

    Additionally, the hallmark symptom of post-exertional malaise means that the activities at the assessment could trigger a worsening of symptoms that is not seen until days later.

    The ME Association is concerned that assessors have little understanding of M.E., and patients are being put through an ordeal of having to justify their genuine illness.
     
    Kalliope, Aug 8, 2019
    #9
    Octogenarian, AliceLily, Annamaria and 10 others like this.
  10. Trish

    Trish Moderator Staff Member

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    Very good program, thank you @Gary Burgess.

    For those unable to listen, the program includes two interviews. The first, with a woman called Jo who has severe ME about how it affects her. The bits I particularly remember are her emphasis on the need to rest, and not push yourself, and she has written a blog about her life with ME.

    And secondly, the ME Association benefits adviser talked about her role, and the difficulties for people with ME in getting benefits and the harm the lengthy process does to the claimant's health. For more information, contact the MEA and get their guides to fill in the forms.

    Things that stuck in my mind - when filling in the form, don't say you can't do something if you occasionally can - it can come back to bite you if they see you doing that thing during the assessment. Always explain whether you can do it reliably, repeatedly, and what the after effects are of doing it.

    And secondly, when you get your doctor to write a report, the key things to include are not the diagnosis, but how it affects your daily life and what you can and can't do.
     
    Trish, Aug 8, 2019
    #10
    Barry, AliceLily, Annamaria and 10 others like this.
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Severe ME Day: A Call to Act with Truth and Integrity by Greg Crowhurst | 08 August 2019
    https://www.meassociation.org.uk/20...d-integrity-by-greg-crowhurst-08-august-2019/
     
    Last edited: Aug 8, 2019
    Sly Saint, Aug 8, 2019
    #11
    AliceLily, Annamaria, JaneL and 8 others like this.
  12. Saz94

    Saz94 Senior Member (Voting Rights)

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    Woohoo, let's celebrate having severe ME. [Sarcasm]
     
    Saz94, Aug 8, 2019
    #12
    chrisb, Barry and Trish like this.
  13. Alis

    Alis Senior Member (Voting Rights)

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    its not a celebration .it is an awareness day
     
    Alis, Aug 8, 2019
    #13
    JaneL, Wonko, Saz94 and 3 others like this.
  14. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Aug 8, 2019
    #14
    Barry, AliceLily, JaneL and 6 others like this.
  15. Saz94

    Saz94 Senior Member (Voting Rights)

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    I know that. Sorry if I caused offence. I was just trying to express my emotions.
     
    Saz94, Aug 8, 2019
    #15
    Barry, AliceLily, JaneL and 1 other person like this.
  16. Alis

    Alis Senior Member (Voting Rights)

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    :thumbup:
     
    Last edited: Aug 8, 2019
    Alis, Aug 8, 2019
    #16
    JaneL, MSEsperanza, MEMarge and 2 others like this.
  17. Saz94

    Saz94 Senior Member (Voting Rights)

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    Saz94, Aug 8, 2019
    #17
    Barry likes this.
  18. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    She was already bedbound before the need for the dental work. When you are that ill, it is hard not to get worse.
     
    Tom Kindlon, Aug 8, 2019
    #18
    Barry, AliceLily, Amw66 and 4 others like this.
  19. Joh

    Joh Senior Member (Voting Rights)

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    Joh, Aug 8, 2019
    #19
    JaneL, Binkie4, Alis and 1 other person like this.
  20. Saz94

    Saz94 Senior Member (Voting Rights)

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    Yes but cognitively it sounds like she had a huge worsening as a result of the dental work?

    I am severe.

    Is dental work usually that dangerous for PWME? Is there anything that can be done to make it safer? I know that some PWME react badly to certain dental anaesthetics so a different one has to be used...
     
    Saz94, Aug 8, 2019
    #20
    vsou likes this.
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