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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...

That's what I thought he meant. We haven't found evidence, therefore there isn't any. But if they are only looking using standard tests then they won't find any evidence, but that isn't proof it doesn't exist

This thread has been fascinating and I appreciate the time and effort everyone has gone to to explain their point of view. Can I ask a couple of really basic clarifying questions? As I understand it, where pain persists and is not structural, then the mind-body approach says that this is a...

Same. Thanks for sharing I have tweeted Jo on X too.

Anyone else get a sign up page when trying to access Jo's blog? Is it now private? https://www.healthcarehubris.com

Thank you..I appreciate that This experience is exactly why people do not want to get involved in advocacy though, as there is always somebody waiting to tell you how whatever you are doing is wrong. It is extremely disheartenening No good deed ever goes unpunished

Thank you If you are being forced to spend pip on food then clearly universal credit is insufficient to cover your basic needs? Agree..I have specific health related dietary additional costs The output will hopefully provide trends to be able to demonstrate to the minister how utterly...

I have shared this article and these comments with the project group as I helped create the survey Calling people taking action useful idiots is deeply unsupportive and has probably undermined what we are trying to do to help the community push back against these cuts, as people probably won't...