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So what is Norwegian for total arse

Twitter post by M van Elzakker

Interesting comments from Jane Colby about the bits of guidance Tymes Trust consider to be ok (but are being ignored).

Spot on @Woolie I’ve got a brilliant counsellor I’ve had for many years pre ME diagnosis. She is an agenda free sounding board for any issues/decisions I’m facing and gives me a safe place to vent feelings that aren’t easily discussed with family and friends - eg if the feelings are about their...

I’m a bit grumpy today and cynical this is good in theory but I’m a bit concerned that she’s also minister for sport and will be all about getting people “active”. Definitely some education about people with severe ME will be needed.

Over 2000 now brill

Sharpe bravely ventured out then - I hope nobody harassed him

I definitely find that I can do more reading and posting lying down. When I was still working I had to take breaks to lie down on my sofa to rest. And if I had used my energy into the red I could still have a reasonably sensible discussion for 30 minutes on the phone lying down. And I’m...

Belter DT is like a terrier digging stuff up and bringing it to us as a present. In this case some gems from JE that he’s had temporarily buried. I like the BPS ideological brigades name harking back to their supposed left wing supposed activism.

Good point @Barry probably wouldn’t be good for NICE to concede this straight away no doubt the BPS machinery is in operation trying to maintain the status quo and they would have a lot of hassle from the BACME people on the lines of you’re leaving us without guidance. If the community can...

A couple of minutes garbled embarrassment about ME - then moves on to blowing the trumpet about billions being spent on cancer probably not the best juxtaposition to sell the “big” ME funding. clearly the comms people involved in this piece are clueless. I don’t disagree with the spending on...

He (CB) is probably loving that we’ve got a thread on here about his one man attempt at BPS propaganda. I guess with so much more positive media coverage in recent months he’s feeling the need to get the BPS message out there to the masses. He seems to be a lone voice on MEA Facebook popping up...

Yes that’s great now over 1800 community coming out in numbers

Workwell

AFME saying GET “can worsen the symptoms” of people with ME is the understatement of the chuffing century. On average that may be the case but it seems to me that I have in the last 18 months or so since I began getting involved in forums/social media that I have read numerous personal accounts...

Tweet from Keith Geraghty

interesting that there is a running total of numbers of letters submitted already 11 how high will this go - like the NICE review petition this has the potential to be compelling if the numbers ramp up.

Hi @Trish i think you would fall within 5 in her list of reasons for submitting evidence - denial of referral Edited to add I think it's likely there are quite a lot of people who that's happened to

I think there’s a place for different people taking different actions. Has anyone else in the ME community raised the treatment of ME patients with the GMC. It might be a bit radical but every campaign has a spectrum of mainstream and radicals.

When I used to take my mum for her appointments when we were trying to get dementia diagnosis she used to have to answer memory type questions but also stuff like write a sentence, copy a shape - hexagon I think it was. They used it to monitor deterioration in her abilities. I would think it...