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Why are my taxes being wasted on paying people do this? Ok I don’t work any more but still, I’d rather there was nothing on an NHS website except a list of contact names and a link to some ME websites, than this nonsense.

https://archive.ph/78EXb there’s so many live links it really needs screenshotting. And remember, if it’s hard to relax and enjoy things, “fake it til you make it”

Ok at the end of this piece about stress it suggests taking up yoga, if you’re able. Do I win a prize for finding it? That Stress article is the worst because it’s ostensibly about stress, it’s like a Trojan horse to slip in some unconfirmed “doctors agree” and “anecdotally” flannel. I have to...

Also the “national centre” at Queens Hospital Romford info on BACME is out of date; it ceased accepting referrals in 2021 https://meassociation.org.uk/2021/12/closure-of-the-me-cfs-specialist-service-at-queens-hospital-romford-essex/ Maybe BACME’s first step can be updating their website and...

It would be interesting to know what the “offer” of each service is. I know what it is for the Royal Free in Hampstead but I don’t think they’re listed. Basically - 12 week course held online, 2 hours session each week (!) 1 hour group discussions on pacing with a psych, 1 hour group...

Sounds good - if all the staff involved are aware of how ME presents and have adequate training.

As Riley said “has he gone BSP” yes, yes he has. They have. They are telling us how to behave. They are telling us how to act. They are upset at “keyboard warriors” attacking those who “try to help” us (I think Miranda got a lot of compassion actually, considering how offensive her cash grab...

Ah, this maybe the confusion. Neil was clear at the end of the article that he wasn’t addressing people who are severe. So do we have mild and moderate people being told not to get up out of bed? In numbers which justify a working group to investigate pros and cons? Or is it the MEA creating...

An odd case of people being dissuaded from getting out of bed. Versus the slew of nonsense thrown at pwME about pushing their limits, “pacing up” GET etc. Not to mention the guilt and shame that we “can’t”. And Neil felt so strongly that it needed him to declare we should all get up and dressed...

It’s a red herring. Nobody has ever said that pwME must stay prone in bed, and never get up. Because Neil had to re-issue his tone-deaf essay on why “getting up and dressed every day is best” and he’s now received a backlash that he doesn’t really understand, they’re saying OK well let’s look...

It’s a bolt-on to enable the same stale people to carry on. What you need is a modern, transparent, non-paternalistic board of trustees and CEO. There’s a saying in HR - Culture comes from the top. You could employ the best staff in the world, but all it takes is a few Neil Riley’s/“my wife has...

I feel that a “casual observer” would be on board with the idea that there’s a lot of blah blah blah and nothing happening. Which is the situation. So well done Sky!

Meanwhile A4ME is stopping engagement on social media as it’s a time suck for their small team. Wasn’t there a pointed remark about people (I paraphrase) going on and on about the same stuff, now they’ve decided not to reply. Honestly, who tries to please everyone on socials? That’s madness...

Yes the launched”we want to become more accessible” at an AGM that didn’t give the required notice, was difficult for members to access, had the chat turned off and various trustees forgetting to “mute”, lasting 2.5hrs. Not exactly accessible.

Reach more people? Not members, just people? They’re going to have to get used to “people” scrutinising them. Also, it feels like saying the rotary-dial phone needs updating; let’s get a wifi router. Nope, get a smartphone. Update everything.

Nobody minded Neil’s article, until it went on social media. Apparently. They are just dinosaurs, and Action For ME are modernising.

Is it for us, or for them? Presumably they will moderate it, save the poor lambs from mean social media comments. Charles is on Facebook 7 days a week replying to comments, apparently. That’s…not healthy in my view.

I had a read of tweets, but not well enough to do screenshots and commentary. Thanks to Nic and Pete et al who asked questions. It sounded like it wasn’t all terrible (but it was a bit terrible) very old fashioned approach, felt to me like “we work so hard for you and you don’t even appreciate...

It’s a bit antiquated to be honest, these days you’d just have grievance for employees and complaints for everyone else.

It is clarifying that this is a grievance procedure for members (and/or their careers)- and not to be confused with the grievance procedure for employees. Presumably non- staff and non- members would follow an organisation’s complaints procedure?