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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.

Sounds interesting. I wonder how much the difference is the VR or just the quality of the underlying teaching materials?

Well put. I wonder if a push for reform rather the usual ‘give us more money’ message would actually be better received by ministers too.

It’s probably not that surprising in some ways. A lot of the ThereForME people are relatively new to this area. When I was first ill a decade ago I heard a little bit about the controversies but wasn’t well versed in the history, hadn’t experienced the impacts myself and have a lifetime of...

Can we get a grant to run a double blind randomised control trial into that?

This is really well put. I might add the inverse too. For example I sometimes get bad migraines I didn’t get before ME, but you know what, I don’t mind too much if the other symptoms I have are ok. The aura goes, I may have some nausea, I just give in to it and lie in a dark room for a while...

Pretty sure they do. I’ve seen pet activity monitors. And there seems to be a growing number of pets being prescribed antidepressants too…

For comparison I checked the last ongoing symptom tracking I did which was for a 6 month long HHV-6 study with the CureME team. It had a dozen single response questions on symptoms with two more on if you were feeling better/worse and if you’d changed your meds. That’s a really good point...

That’s a very good point, thanks for reinforcing it. I’d add that the problems people with ME generally have with NHS is not a lack of admin.

I stopped tracking symptoms. It was a lot of work. I learnt a bit but it’s easy to get too focussed on things. A little light weight monitoring may be useful but… For my condition/severity and I think for many, seeing how I am ‘over the last month’ is a pretty pointless metric. It’s a lot of...

This is what I was thinking. Are they verifying that the data is similar in structure or content to the data they got before? That it matches their subjective expectations? Or what? And how, with a different and self selective small sample from previous samples, do you do this? What is the...