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Good to see (As many will, I have family with Parkinson’s). As an aside It’s interesting to see direct quotes there from Parkinson’s UK’s information for journalists page, which I was looking at recently and wondering if ME charities could do a better job of communicating and advocating with...

It all sounds very press release-y if you see what I mean? Hopefully there’s something meaningful underneath it all. This page was shared in another thread I think, which has a link to a flyer with a bit more info: https://precisionlife.com/beginning-to-unravel-the-biological-drivers-of-me...

I’m not sure how current this is (it’s from 2021) but I also found this https://www.malmesburypcc.nhs.uk/wp-content/uploads/sites/120/2021/07/curable-poster-chronic-pain_a-cycle-of-stress-and-pain-1.pdf And a GP practice...

Wholeheartedly agree. Research could become an easy decision if DecodeME shows us where to look. So maybe some preparation for that, get mechanisms in place to move. But for now it’s institutional change in the NHS. Which is very hard to do but could have significant benefit and will be needed...

I tend to be more in the having trouble eating or eating enough category when I’m bad. When appetite and ability to eat returns it’s generally a good sign for me. I definitely notice an impact on mood too though. Hope you uncrash soon and the potato chips were good :)

In my experience CBT is very good for some things. But is also sometimes used as a term for therapy which isn’t actually CBT. And also used completely inappropriately for things it shouldn’t be… In that way it reminds me a bit of the terms and practices of Scrum or Agile in the tech world. I...

This was exactly my experience. A good bunch who were keen to try to find out what was wrong, especially given my history and how my ME started. But it was short term and when all their tests for exciting tropical diseases turned up negative I was discharged and became as many do, stuck in a...

I’d agree that’s a really good approach. It nicely opens the door to showing how good quality research and education is a solution too.

I want good research to find treatments and until then that to ensure day to day care for other issues and any emergencies is delivered in a way that is understanding of and doesn’t make my ME worse. I’m terrified of ending up in hospital after previous experiences. This is what I’ve been...

Copied post I want good research to find treatments and until then that to ensure day to day care for other issues and any emergencies is delivered in a way that is understanding of and doesn’t make my ME worse. I’m terrified of ending up in hospital after previous experiences. This is what...

I’d like to see something along these lines as more of a focus from patient groups and charities. I don’t disagree Jonathan. I’m not trying to paint a naive or rosy picture here but did think it worth describing an alternative possibility as the reality is, we don’t know where this is going...

I think I’d probably start with how much I got wrong when first ill and how little I knew. About how so many of my assumptions and to be honest skepticism of some of the stories I began to hear about ME, how it affected people and how they were treated by healthcare systems, was wrong. I think...

It’s a really tough one and ultimately I think people’s view on the topic will of course be hugely influenced by their own life experiences and may well change throughout their life. I hate to see people suffer and the reality is that some people feel they are now and some people will feel they...

The more positive argument here is that in getting a broad church to agree you can focus on raising awareness rather than disagreements. If you can then follow up with specific evidence based actions, those that signed on look a bit silly if they roll out their quackery again. Of course we have...

If it helps I recently emailed my MP and kept it very simple… Now you’re in government what do you plan to do to improve healthcare, social care and research for people with ME. I’ve tried to be more lengthy and persuasive in the past but sometimes one or two simple questions does the job...

That seems… significant. I hadn’t heard this, thanks for sharing the information.

This is the big question to me which raises serious questions of some work being done currently. We have the NICE definitions. And yet people don’t copy paste, but instead try to rewrite things. It happened in the Care and Support Document and is happening again in this. Why? There are many...

They seem to be implying there could be more than correlation as there are ‘implicated metabolic biomarkers’. Although we don’t know what those are as the paper doesn’t seem to be public. Or if those are correlation/causation too or even cause/effect. Maybe they’ve discovered a biomarker which...

Link to the zoom has been emailed and posted on their facebook page

I share many of your concerns, but hope you are wrong. And I do think making a strong case that they would be throwing good money after bad could have an impact.