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And that the services which do exist are at best a short-term intervention.Once you’ve done their pacing course you’re discharged back to be the GP’s problem. I remember explaining this to someone with MS who was shocked I didn’t go to see a consultant every year for a check-up. Well, not just...

Yes I think this is important. I’d like to see a dramatisation or under cover film of”what actually happens” Even a flow chart (excuses map) “discuss your care and support plan” > don’t have one > produced by MECFS service > cannot access service as do not provide services to severe ME “try...

I think the document tries to pinpoint a role who has responsibility for the patient, more than what treatment the patient should receive. They don’t want to put in writing that they should use a 5% incline for feeding, for example. It’s like they can’t say what to do, but a couple of special...

Sorry Dave, it’s the final delivery plan now, not the interim one, I guess Andrew wrote the letter so long ago that it’s changed since?

Ah yes! They are under no obligation to act. They can reply to say we’re taking no action. I stand corrected.

Not sure where to put this, but the question and answer in parliament was about a final delivery plan for ME due to be delivered in March 2025. we’ve always heard of an interim delivery plan. Do we think this is a simple error or is the plan now going to be final and complete? Attached...

They are under no obligation to reply

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Also the “national centre” at Queens Hospital Romford info on BACME is out of date; it ceased accepting referrals in 2021 https://meassociation.org.uk/2021/12/closure-of-the-me-cfs-specialist-service-at-queens-hospital-romford-essex/ Maybe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