1. This site uses cookies. By continuing to use this site, you are agreeing to our use of cookies. Learn More.

Journalist seeks people harmed by / coerced into GET, children harmed by GET or parents accused of abuse

Discussion in 'General ME/CFS News' started by Sasha, Nov 10, 2017.

  1. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    759
    Likes Received:
    4,759
    Location:
    UK
  2. Nathalie Wright

    Nathalie Wright Established Member

    Messages:
    8
    Likes Received:
    80
    Hello! & thanks for having me :)

    Please do get in touch. I'm especially interested in point 2 as have had fewer responses so far for that.
    2: People who have in someway been coerced into GET in order to receive benefits/insurance etc. (or in any way made to do it against their will.)

    I can keep you anonymous.

    Also feel free to send me a message even if not directly about GET, as the article is about ME politics in general (though there will be a limit as to how much I can cover.) I am already pretty knowledgeable but always wanting to know more.

    Thanks!
     
  3. Nathalie Wright

    Nathalie Wright Established Member

    Messages:
    8
    Likes Received:
    80
  4. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    759
    Likes Received:
    4,759
    Location:
    UK
  5. markiemark

    markiemark Senior Member (Voting Rights)

    Messages:
    136
    Likes Received:
    985
    Location:
    Scotland
  6. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    787
    Likes Received:
    4,044
  7. Amw66

    Amw66 Established Member (Voting Rights)

    Messages:
    63
    Likes Received:
    300
    Perhaps @Nathalie Wright you could compare ME to cancer. Contrast the provision of specialists, research, funding, access to education and benefits, and media profile. People look at me askance when i gave said it would be easier if my daughter had cancer- horrendous to say but we would have a process, treatment and support.
     
  8. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    787
    Likes Received:
    4,044
    I know by this you mean comparing the care and treatment regimes :) etc etc. Just that your first sentence might otherwise be a little confusing.
     
  9. sea

    sea Senior Member (Voting Rights)

    Messages:
    200
    Likes Received:
    1,264
    Location:
    NSW, Australia
    Welcome @Nathalie Wright

    Thank you for tackling this subject. Hopefully your work in the UK can snowball and help other countries too. This needs attention in Australia too where people are not considered fully treated and therefore being denied benefits unless they do GET and CBT.
     
  10. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    354
    Likes Received:
    1,731
    Welcome :)

    I don't have this exact experience (though the diagnosing neurologist did suggest a referral to a psychiatrist) but i have had a few docs being dismissive an not willing to listen to my severity (as has probably almost everyone on this forum). Might be worth mentioning in your article.
     
  11. Amw66

    Amw66 Established Member (Voting Rights)

    Messages:
    63
    Likes Received:
    300
    Sorry fir the ambiguity ( although there are some similar cellular mechanisms)
     
  12. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    787
    Likes Received:
    4,044
    A pet niggle I have (I have a few actually but one will do for the moment :)) is that the media tend to state that a characteristic of ME/CFS is fatigue/exhaustion/etc made worse by exercise, which is very misleading for those who don't have ME, and allows healthy people to say "So what! It's the same for me." It is more than that of course, and the disastrously slow recovery following even light/moderate exercise is much more significant. A healthy person the next day may feel some aches, and maybe a bit stiff etc, whereas someone with ME feels like they are still in the final stages of a marathon that never seems to be ending.

    My qualification for writing this is that my wife is the one with ME, and I am the moderately healthy one. So I tend to see things from both perspectives. My feeling, is that it is the "innocently uninformed" who most need to be educated, and who have the most difficulty understanding.

    I've noticed it is sometimes PwME themselves who seem to fall into the above trap, so it may be that when someone has had ME for such a long time, they maybe cannot quite empathise with how a healthy person may interpret something that seems so blindingly obvious to them.

    Thought I'd mention it @Nathalie Wright in case it helps.
     
  13. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    787
    Likes Received:
    4,044
    I'm not at all qualified to know, but it's an interesting thought.
     
    ladycatlover and Luther Blissett like this.
  14. Nathalie Wright

    Nathalie Wright Established Member

    Messages:
    8
    Likes Received:
    80

    Hi Sea - is this an official policy do you know? Do you mind explaining a bit more about how this works in practice? Thanks
     
  15. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    552
    Likes Received:
    3,551
    It does seem that Australia has now gone further than even the UK with this stuff. I've lost a lot of the info I was reading about this... maybe I saw @alex3619 posting about this?
     
    ladycatlover and Luther Blissett like this.
  16. alex3619

    alex3619 Established Member (Voting Rights)

    Messages:
    78
    Likes Received:
    531
    I was not posting about this I think. However its known to happen. I hear about it from time to time.
     
  17. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    552
    Likes Received:
    3,551
    Thanks. I can't remember what I was reading now. I've got about 200 tabs open on my browser that I need to go through and sort out, maybe it will be in one of them.
     
  18. Simone

    Simone Established Member

    Messages:
    17
    Likes Received:
    141
    Location:
    Australia
    We have yet to find out if this is an official policy, but we are collecting case studies of claims which have been rejected. The issue is that the Disability Support Pension requires people to demonstrate that their condition is fully treated and stabilised. If an individual hasn't done GET/CBT, they are often rejected as not fully treated, because they've not undergone a treatment which Centrelink deems reasonable. Claims have also been rejected because assessors deem ME/CFS to be temporary (so, not a long term disability) and treatable with GET. This is also true for the new National Disability Insurance Scheme (NDIS).

    We currently have questions on notice, submitted via Senate Estimates, to find out more specifics about policy. This is both a major issue for us in Australia, and a major focus of advocacy efforts.
     
    ladycatlover, sea, Andy and 13 others like this.
  19. Nathalie Wright

    Nathalie Wright Established Member

    Messages:
    8
    Likes Received:
    80
    thanks v much for extra info. sounds even worse than here :(
     
    Simone, ladycatlover, sea and 6 others like this.
  20. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

    Messages:
    683
    Likes Received:
    4,165
    I'm afraid I've got nothing to add in answer your request @Nathalie Wright , but I think you may be interested in a site that offers to
    The site is: http://scr.im/
    Hopefully, it would reduce your chances of receiving spam emails, while at same time sharing your contact details. (Also useful to other users)

    Thanks for your interest in the stories, and for engaging with us, that is a very nice touch :), and I wish you success.
     
    ladycatlover, Solstice, Joh and 11 others like this.

Share This Page