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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...

Yes, as the Titanic sank.

I like swearing. I also like an analogy, quote etc. These Drs are putting me in mind of the saying “Nero fiddled whilst Rome burned”

Reading Dave’s original piece has helped me visualise a timeline. https://www.codastory.com/waronscience/chronic-fatigue-syndrome-long-covid-unexplained-symptoms/ Dr Shenton recommended tube feeding in March. Hospital discharged same day. Hospital DrWeir recommended tube feeding in May. Hospital...

Agreed, the Telegraph piece gives Maeve’s voice very clearly. Non-paywalled here https://archive.is/fV7Pn

I’m hoping next week we find out why the NG wasn’t even attempted until July I read a report I think it quoted Dr Patel saying about the patient making “irrational choices” I think in the context of wanting to go home. They’re not irrational if you have ME, doc.

I think this is a really important point. Dr Weir has seen more very severe patients since the GET was pushed

Dr Praag’s evidence seems really key, hopefully we’ll get a write up later. I’m signing off for a bit.

I’m just summarising what I see on twitter. Apparently 155 were in, now it’s just 105 after resuming?

There’s a lot of technical difficulties, people leaving cameras on, sound issues and people being thrown off the feed apparently