Search results

That's a pretty stellar line-up imho

I've had a grip test and later tests that showed what was described as 'metabolic impairment', or, the muscles running out of energy really quickly. Having the grip test as part of a wider assessment, I was a mess after just a few squeezes - but it makes sense to me for how I felt at the time vs...

Website SEO and Google ads is not my speciality, but, I see ads for all sorts of companies appearing when I search for stuff, so, what’s different with paying to appear in searches for ME terminology? AfME appears in the top 4 when searching for ‘ME/CFS’, further down when searching for ‘CFS’...

Thanks for this Peter and for the effort you are going to here and on other platforms. I guess the conundrum with it all is how likely is any of this change within the confines of the existing charities/governance? How do we achieve the necessary change? Is there genuine appetite for change...

And some wonder why many of us have lost faith with the MEA (and other charities)..

Saw this shared on Twitter. Am part way through this and it's quite interesting and shows how, I guess, diluted fund-raising and spending is with the number of small charities and how minuscule the research spending is compared to other illnesses. Interesting point made (IIRC) which I think...

The World ME Alliance is asking for videos of pwME to be part of their campaign this year. It's a short scripted video to be uploaded by 1st April...

I'm just curious if PG warned Fiona whatshername what she was letting herself in for when signing a letter with him. Did he say 'they will come for you..'?

Watched it over the course of the evening yesterday, it's a very powerful evidence session and great that Dr. Taylor kept referring to ME in terms of the LC symptoms and, importantly, the history.

The fact that it names and shames Wessley and Sharpe is excellent and will no doubt have been through some checks to make sure it's ok to name them as such. Will be interesting to see if they respond - their silence will be telling - but they might employ some of their useful idiots to do some...

Sadly, it's a common gripe with the APPG. The short video that Carol Monaghan did on Twitter wasn't much more enlightening - but, I will acknowledge that it's better than nothing. I'd really like to see them streaming the meeting (the LC APPG proved that was possible), but that seems like a step...

Oh, that is a thing of beauty!

On Twitter he is @magnetojj if that helps anyone find him. Am due to be snapped by him this week all being well. ETA: https://x.com/magnetojj?s=21&t=wZpgUf0CmvHGggdjtfZ2Zg

If memory serves, APPGs have to be re-formed (or whatever the appropriate parliamentary terminology is) after every election too. Wonder how many of the members have already decided to step down at the next election - don't have the energy to look..

No probs sharing. Thanks.

Have had an initial response from Andrew Morris, advising that he stood down as Chair in 'Spring 2023' and someone named Simon Chandler took over. Clearly, not a good sign that the website hasn't been updated to reflect these changes, so, have followed up with the new chair..

With ME Awareness Day coming up in May, should be an opportunity to build on this coverage with some kind of follow-up - you would hope.

There is then a full APPG meeting after the AGM according to AfME. This grates my gears somewhat; I appreciate that they are busy and short of resource as noted (and, I know a lot will have gone into the C4 News piece last night), but, these last minute awarenesses of meetings, don't allow...

I’m happy to contact Andrew. I have emailed him previously re Fwd-ME stuff when he first took over as chair and he was pretty responsive. Will try to do tomorrow and report back in due course.

Well done for standing your ground. The one-size-fits-all that we so often encounter in living with ME is so frustrating when you finally get someone to accept that there are other ways things can be done.