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There are obviously solutions to these so-called problems the Drs encountered. For me, the worst part is I’ve formed an opinion that Maeve probably would have wanted to be weighed. I’m sure she would have endured the problems it would have caused her. She endured the “sit up a bit longer each...

Catheterisation hasn’t been mentioned, there was reference to there being no plan to transfer to commode, and a static commode being provided at home. So, if she was having to get up to toilet, then there’s absolutely no excuse she couldn’t have been weighed then. Was she on a weigh bed in the...

Someone has put 50p in Garner and he’s off, using his energy and platform to support Miller’s op-ed

We could do that by contacting the Reader’s Editor.

Ooooh Dave, places that are cities have a real “thing” about being a city. Originally they would need to have a Catherdral or a University, so there aren’t “university towns”. The requirements have changed since. Each year there are towns clamouring for city status to Parliament. Be careful...

Very sensible, and I hope it’s picked up as an issue, the Drs say they know ME is real, it’s not for them to say whether it’s psychological or not etc but they don’t understand ME. The patient doesn’t respond to their treatment, the patient doesn’t act they way they feel they should, you can see...

It’s the usual, then. ME causes these symptoms and we haven’t yet discovered why. Nevertheless, pwME report that eating can be difficult for them.

Wow, never heard of Dumping Syndrome, probably have it! Assumed it was IBS.

Sometimes that’s just how it goes. Anyway, good enough is good enough, it’s a great letter. We shouldn’t have to worry about citing sources, we’re unwell, we’re not making an academic paper or leading an ME service.

How about a simple reworking of the “CBT issue” Yes it’s offered to Cancer patients- alongside medical treatment, however there’s no medical treatment or cure for ME. it’s a false equivalence/disingenuous comparison, especially because until 2021 CBT was being used to treat and “cure” ME...

This guardian article refers to the Nice review ctte “low or very low quality” https://www.theguardian.com/society/2021/oct/29/health-watchdog-nice-publishes-delayed-me-guidance It might be fun to include a Guardian link as your source. This article also refers to the delay in August of...

As I say, not a scientist but my point being that when pwME eat it’s a big investment of energy for us, in layman’s terms. This can be “seen” on the auto pacing app Visible. Therefore, even doing heart rate pacing by hand with pen, paper and wearable, it can be seen as an “energetic” activity...

Obviously I’m not a scientist, but there’s been a good few people here and in the twitterverse giving anecdotal evidence of eating being an “energetic” activity for pwME. Notably, people using Visible are highlighting how eating pushes them into over-exertion (showing as red on their graphs...

He needs CBT

It actually worries me the way the BPS x Insurance/Corporate Wellbeing disease is spreading. The NHS has internalised CBT to the point that I wouldn’t be surprised if it did become the main treatment for Cancer, or brought in on antenatal wards instead of midwives. Surely if women understand...

Thank goodness for The Times, laying it all out. Actually crying reading this, even though it’s all strangely familiar. https://archive.is/20240727060407/https://www.thetimes.com/uk/healthcare/article/killed-by-me-the-terrible-illness-that-divides-doctors-9mkzk7rxx

It’s an “opinion” piece but may be worth still emailing the Reader’s Editor about the lack of source re-full recovery. Actually Charles Shepherd might want to do that (like he’s got nothing else to do…/s)

Comments are open on that Guardian article.

Let’s all play nicely together! Now, little Johnny, you promise not to punch little Timmy in the face again? And Timmy, now Johnny has apologised, you promise to be his friend?”

Although it’s not entirely true that “nobody had an f-ing clue what to do about it” (a phrase the twitterverse is loving!) in fact both Drs Shenton and Weir knew what to do, but nobody could hear them because they had their fingers in their ears, and were singing “I don’t know anything about ME...