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Just wanted to point out that not all UK benefits are means tested. Currently DLA and PIP are not. Though it's such a battle to get them that many ME patients don't bother. The forms are a nightmare unless you can get help filling them in - full of pitfalls for the unwary. :banghead:

Sorry @Trish, I disagree with you here. Ellen has left gnomic derogatory comment on Tuller's great article, and some of us can't even access her on social media to try find out what the hell she means, or to get her take on things. Seems to me she's become part of our problem.

Here Von, have a cup too! :trophy@

She blocked me on both Twitter and Facebook several years ago. So I can't see anything she says anymore. I think it was because I didn't leap to protect her over some argument or other. In fact I was too ill or dealing with aftermath of parental deaths or legal matters or whatever, so just...

Suspect Rudd will be even worse than McVile. :arghh: :eek: :sick: What is it about Home Secretaries that make them crule and nasty. Oh yes us in UK know why. :cry: Sorry if this breaks rules on politics.

Expensive, intrusive and PAINFUL! :arghh: Not a good idea.

Yes as you surmise above (though not in my quote) ME Action is now Action for ME. It has gone through various names, as @Sly Saint explains above. But the ME Association has always been the MEA (and not ME Action or Action for ME), and that is who weasel SAID he was quoting. He's sloppy over...

I don't know what weasel was blathering about concerning "Vice President of ME Association". If he's talking about the UK MEA he's talking out of his (blither). So far as I understand MEA doesn't have "President", Vice or otherwise. They might have a Chair? VP sounds much more American to...

Just watched the film. Interesting, though I did feel that it could have been edited better - prob to about half the length. If any of you just want to catch the stuff about Sci-Hub it starts just before the 55 minute mark. Basically it was too long for the amount of info in my view. At least...

Oooo, going to watch that! Have sub to New Scientist so am able to tell you... :emoji_clap::emoji_clap::emoji_clap::emoji_clap::emoji_clap:

I'm just getting a blank black screen in the middle of the page.

Sheesh, with "friends" like that, who needs enemies? :arghh:

I don't think that anything we can do will remove members of the GDG. But I do think the COI stuff may make a difference. And that's where we might work on further. @Michiel Tack's work is brilliant, do please read his PDF above!

There are some second hand copies on amazon UK, from £41.99. (full price new is £76.99)

Wow @Michiel Tack! That is fantastic! :trophy@I've asked husband to print it off when he has time. That must have taken such a lot of work to put together. Thank you from the bottom of my heart. :heart:

I can't tell if I have year or weather effects as the last few years I'v had too much carp going on (PIP, Tribunal, new caravan holiday home that stinks) to be able to tell. But think feel better in Autumn and Spring - not too hot, and not too cold! LOL. @JaimeS might it be that cooler...

Thanks @NelliePledge. That would be fab! :)

http://www.edenbridge-chronicle.co.uk/article.cfm?id=126610&headline=Oxted%20woman%20takes%20her%20online%20recovery%20programme%20to%20prestigious%20health%20awards%20this%20month&sectionIs=news&searchyear=2018 Sounds remarkably similar to other programmes. This is the prize she's finalist for.

Weeping for those people who have given their all for us patients. Sharpe et al know nothing about our illness. Cruelty all along the line from them, and ignorance. Praying for Karma.

Maybe they just threw the diaries away when they realised they didn't fit their ideas? What? Me doubting researchers? ;) :blackalien: ETA 'researchers' to comment.