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i was thinking more about duplication of effort that working together might save some energy for those doing the work. Also I get the point about reinforcing messages in different sources but that assumes the intended audience all have the time, inclination and energy to watch a video, and...

Right and you probably don’t have real ME yourself

Seems to be quite an issue generally on social media and people with ME are no exception it does my head in when folks “follow” one particular doctor or theory like it’s some kind of religion, or think because they consider X has helped them and a few other people it’s a panacea for everyone with ME

So maybe working with Nathalie on a set of factsheets to go with her videos would be useful and avoid duplication?

This. Having had a job I couldn’t do anymore and had some time from my employer to try to work out what I could do and tried taking on a new role which I also couldn’t my experience was that managers say they will be flexible but in practice they don’t have any understanding or acceptance of...

I would argue it’s not at all helpful. It is easily turned against us.

instead of working on getting employers to be more open minded they’re telling people applying for jobs to blag their way in. Which is only going to make employers think disabled people are liars and they are going to be even less open minded in future :banghead:

or more specifically a case of the bad ex trots

Agree about India. In the U.K. it is only quite recently - 20 years- since some (not particularly effective) medication became available that dementia diagnosis and cause of death has been taken up and recorded. It is spoken about much more openly and deaths are no longer put down to pneumonia...

Or simply that is a lot easier to be frank when you are leaving a job than when you have just taken it on.

Same issue was raised last year and possibly 2 years ago there doesn’t seem to be a will to make it truly accessible to people with ME. I believe the response before was let us have suggestions. And I think my response was as one of the main charities for people with ME AFME should be setting...

Yes @Barry i think it would be good for us all to start using these legal terms about the (lack of) safety of GET.

Id advise on writing to MEPs that unless you have another email you can easily adapt to send maybe wait to see what happens mid October. If 31 October does go ahead they won’t be able to do anything. If it doesn’t they will have a bit of time to flag their support and efforts of writing...

Not sure what’s been achieved by this initiative

Indeed and in the absence of others no embarrassment factor

Thanks @Andy I have also now signed

Signed up for an account and I can see the petition but there’s no obvious way to sign it

all of us from the U.K. need to get this signed if we’re going to support it.......

Access is the only improvement of the current situation in my area because the service is community based as part of the pain service rather than at the hospital based clinic. But it is still the same content if anything in the last few we’re hearing of people having GET recommended by the...

You can only see the truth if you have your BPS goggles on