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Of course. Hm. It beggars belief. We see straight through it.

Yes. I don’t mind a mix of stories at all, I hope the young man does well, but including bits about people being able to recover (which he hasn’t) if they do GET & CBT or/and be strict isn’t appropriate for everyone or helpful. Once again you’ll get family/friends/general public believing that...

What the heck @Action for M.E. Have you read the article that promotes GET and CBT? Looks like I just need to discipline myself more in order to “recover”.

@Action for M.E. I think this question needs answering urgently and we need to see evidence of some kind that you are contacting the DWP to tell them that your previous advice is wrong. What is going to happen to ME patients who undergo an assessment in the meantime? What do you suggest? Are...

Thanks to everyone who has given me tips and links - really appreciated :thumbup:

That’s really helpful - yes, thanks :thumbup:

I was (when first diagnosed, 2007) taught a ''pacing'' technique that encouraged increasing activity by 10% - which I tried carefully with the aid of a stop watch. I was moderate then and for a period of time I did seem to have some improvements - but (big BUT) after doing it for over a year...

Which paper is going to run the story? I hope it’s not the usual one sided affair. It would be refreshing to have a realistic account.

Part way through episode 1 :thumbup:

Keep calm and carry on :thumbup: @dave30th It’s horrible to be targeted, obviously because you are so effective and tenacious, like a dog with a bone. You are honest. You report the facts as they are. I thank goodness that we have you, thank you - it takes guts to tell the truth.

Yes. This makes sense.

Yes. You have a point.

I wasn’t able to listen but from what I’ve read and especially the poor response from the Health Minister I feel disappointed too. I don’t know what I expected but it wasn’t that. No urgency. No clear understanding. No proactive planning of any worth. Just same old spiel. Typical not answering...

I have Microvascular Angina.

Thanks @Trish :hug::thumbup:

Similar here. I find it very concerning that an ME charity, supposedly advocates for a vulnerable patient group, are providing information and guidance such as this. @Action for M.E. I’m confused by your guidance for people who aren’t aware of the limitations and fluctuations, severity and...

I haven’t the energy to read all posts on this thread, but from what I gather this sounds like @Action for M.E. are promoting a kind of GET via the workplace? Via goal setting and increasing activity. I was given this advice (when no longer able to work) in my earlier years, it was called...

Glad you’re OK @andypants That’s interesting to know too.

Hope you’re OK @andypants :hug:

I have been having similar episodes for a few years now. Lasting longer recently. I have migraines. Left side of face and into left arm and hand - numbing. I have left side pain in face, jaw, gums, teeth, neck, shoulder (currently very painful and feeling unstable). Left side of my face often...