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

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!
 
Amw66 said:
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.
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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.
 
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.
 
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.
 
sea said:
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.
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Hi Sea - is this an official policy do you know? Do you mind explaining a bit more about how this works in practice? Thanks
 
Nathalie Wright said:
Hi Sea - is this an official policy do you know? Do you mind explaining a bit more about how this works in practice? Thanks
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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.
 
Simone said:
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.
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thanks v much for extra info. sounds even worse than here :(
 
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
Convert your email address into a short, cute and safe link you can share on the web, in Twitter, forums, Craigslist, anywhere
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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.
 
Luther Blissett said:
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.
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oh yeh really good point re the email! thanks :)
 
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