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We’ve all got ME, sometimes the brain doesn’t brain. If anyone can understand that, it’s us. A simple admission of making an error is fine. It’s the behaviours that caused the biggest problem.

P D White diagnosed me with Fibromyalgia and recommended GET and CBT back in these days. “Luckily” the physio dept wasn’t actually set up for GET (I had two sessions; 1. Do these exercises. 2. Did you do them? Ok, just keep doing them and increase the reps) I just had the psychological warfare...

It makes no sense. But it happens all the time.

Just to let you know, when UC ask for your documents they look at them and often delete them. I’ve had to upload the same letter 5 times so far as they keep getting my housing payment wrong and each time they look into it, the letter has been deleted “for GDPR”. And every time they ask, they...

I think they said they have Board Members with ME = lived experience. But the MEA has the same and look how Neil Riley turned out!

I took my medical notebook with me. I’ve had it since I worked, it lists notes of conversations with the GP etc but also all the adjustments etc I had at work in the past, it was quite useful.

Their own pages clearly state that they are an organisation of clinicians working in ME/CFS so are they representing us even though we wouldn’t be allowed to join as we’re not clinicians or working in ME/CFS?????

Oh really? Honestly sometimes you need to step away from the internet. Not everyone will agree with you all of the time.

For me the WCA process was really good (much better than PIP) they did make me travel 1hr to the place to be assessed, but that was ok as I was a sweaty shaky wreck. After the assessment I asked for a place to lie down, they had medical exam type beds in the rooms so I had a good rest before the...

Neil Riley has resigned https://meassociation.org.uk/2025/03/a-chairman-resignation-statement-to-the-me-community/?fbclid=IwY2xjawI0FrpleHRuA2FlbQIxMQABHWPGQ2gNhWbeQyJtRAwjsRv7Alw3hCcjqTjlIozwBdwZNfMmcqk3IIgD4w_aem_Nhl9bYkeKu1WMOQiSCncsg to discuss...

Neil Riley has resigned!!!!!!! discussion on this thread https://www.s4me.info/threads/united-kingdom-me-association-governance-issues.42093/page-66#post-591834

My appeal found I can cook using aids. Not sure what aids they have in mind as I described why a variety of common cooking aids like perch stool, good grips etc wouldn’t help me, and nothing can aid me chopp8ng or cooking from a lying down position. I believe this is an error in law, apparently...

Garner was ill with Covid in April and recovered by the end of 2020. Except he was taking military fitness classes and running distances by July, and travelled to the Caribbean for a scuba diving holiday in October where he caught dengue fever. If the article is tweeted there should be a...

It isn’t journalism. It’s an extract from her book. Incidentally, if you enjoyed that extract you can support the Guardian buy buying a copy via their bookstore. The Guardian isn’t a newspaper, it’s an advertising vehicle. Journalism only happens on the “news” pages, if at all.

This is epic! I just assumed the Science Media Centre was behind it. Although Garner is very available for media especially as he’s retired, a “rent-a-gob” as it’s known.

And for mild and moderate level people (and their dr, carers etc) it’s useful for them to understand that such a deterioration is possible.

This is really powerful. Severe and Very Severe seem to be farmed out to their own special leaflets. Including them in this way is easy to do.

AR1 is not yet rolled out as an online, just the initial application form. I have the written decision which I’m delaying opening (the answer was “you’re staying on normal rate”) can’t wait to hear how I can cook.

Let us know if you want us to email anyone?

What I do with other stuff is I leave it until I can face it. I have some post (not urgent) I need a lot of energy to open, so I haven’t opened it yet. Once I do it will be a lot of reading and emotion. I have planned to leave it until next week. With the caregiver I’d be wary, that must feel...