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1. Where did it go? 2. What treatments/outcomes do you have to show for this investment? 3. covid is not "over" so why are the clinics being closed / defunded? Maybe sound less pleased with yourselves when you have achieved the square root of nothing and wasted £314 million doing it Full...

Isn't this deprogramming?

It wasn't entirely wasted; I found it incredibly helpful and learned things :)

Has this one been shared yet: https://www.bmj.com/content/389/bmj.r977/rr-19 Lots to like, but particularly: "The use of biomedical terminology to repackage psychosocial models - referred to in rhetorical studies as “concept laundering” - is another red flag. Referring to “dysregulation”...

Thank you :)

It would be interesting to repeat that back to your MP and say this is what you promised in your manifesto and is the opposite; explain what happened But you said she hadn't responded and I suspect you will get the stock "things were worse than we anticipated" response even if you did.

This is very well put. Would you mind if I quoted it to my MP and in my green paper response? One of our group has an MP meeting I have offered to right a briefing for, and this would be very helpful indeed.

As I didn't qualify for the survey, as I am borderline severe, I emailed yesterday, as she included an email address in later tweet in the thread in response to someone else, and I have copied in my MP. Worth shouting from every rooftop? My GP got it both barrels last week.

Our £5bn disability benefits cut will stop welfare state collapsing, says Kendall Exclusive: Work and pensions secretary to double down on changes despite growing pressure within Labour https://www.theguardian.com/society/2025/may/20/liz-kendall-dwp-double-down-labour-disability-benefit-cuts...

Their response always seems to be incoherent anger and attack, though - and getting more and more mad at the patients - they people they claim they want to help - to anyone who will listen. I cannot understand how anyone outside their echo chamber looks at their research, the complete lack of...

"Hope for patients with severe ME would be better inspired by appropriate funding allocated to research and treatment. Patients should not have to ‘find their path’ [2] any more than a patient with lupus or multiple sclerosis, but rather be offered expert medical management and safe MDT...

Tweet from Tessa Munt MP Thank you @stephenctimms for meeting with #APPGME and #APPGLongCOVID and agreeing to my request to speak to @DHSCgovuk to fund research that would enable #pwME to get better, go to work, and come off benefits. Wins all round! #FundThePlan

I came here to ask this very question!

Is that "as long as you agree with us"? I genuinely do have questions, which we have discussed else thread, but how do I ask them without being branded vexatious?

No 10 rethinking winter fuel payment cut after Labour slump in local elections Exclusive: government fears further electoral losses from unpopular policy as well as from planned £5bn of benefits cuts...

This is surprisingly helpful for a wide variety of situations ;):laugh:

Howard Schubiner mentions PG in this podcast https://open.spotify.com/episode/40CUczxOiNU869PxOqhkHZ?si=dg1iTGTkQ3WhSHc6xGDB0A He says that they are good friends and PG had a "click" moment, where he understood that his symptoms were mild-body, because sometimes he could cycle further and not...

I have been trying to access her blog for a couple of weeks and have not had a response to my sign-up, or my tweet or direct messages to both accounts on Twitx and still don't have access, somewhat frustratingly.

True. But at which point does it cross the threshold from real, organic illness to mind-body symptoms? I am trying very hard not to be facetious, but am failing, I'm afraid. Oh. Really? I was really hoping I had missed some vital piece of the puzzle. The chronic pain explanation makes some...

Sorry, foggy brain! I meant that ongoing symptoms of ME or LC post the acute infection or precipitating event are defined as mind-body symptoms because they are continuing after the acute infection has resolved. But if they are ongoing symptoms then the infection has not resolved, surely? Also...