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I think this is what I'm err'ing towards. As I say, I will try anything (within reason), so happy to give it a go, but my BS radar will be on high alert so as to not do me more harm.

Hi all, I can see that this is not the most active part of the forum, but thought I'd ask anyhow.. So, I've been seen by a well renowned cardiologist in London, who, has done oodles of tests to rule in/out POTS/IST etc. and, having done a TTT and CPET (only a single day sadly, but, which I did...

Having seen that the web page for my local 'fatigue clinic' on the NHS Trust website (Barking, Havering and Redbridge University Hospitals NHS Trust) was still referring to 'Graded Activity/Graded Exercise Therapy' amongst other things, I wrote to them this morning (in detail - which has caused...

You declare ME on your insurance? I'd not even considered the need to - am only 18 months since diagnosis, so haven't taken travel ins, but car/home ins has been renewed.

Hi all, not sure if this is the best place for this post.. Our 8 year old daughter is currently really struggling with the fact that I am ill, which is utterly heartbreaking. I was wondering if anyone had come across any resources for kids to help them come to terms with a parent who is ill? I...

I've not been firing on all cylinders of late, so haven't been paying too close attention to the RC shenanigans, but it feels like they have gone dark since the toy throwing episode. Would that be a vaguely accurate assessment of things? Doubt we have heard the last of them, but perhaps they...

And the media, who could affect this, either: - Don't actually check the background of these eminent doctors who they have been quoting for years, or; - Simply don't care who they are quoting as long as they are doctors/professors (because these titles gives them gravitas and were likely quoted...

I was just about to share this article, thanks for raising it. So many annoying aspects to this piece - that it's being positioned as supported by activists and that we are suffering from 'tiredness', calling it 'chronic fatigue'.. But, as with the RC's release, there's no actual evidence...

Think it is these.. https://www.nice.org.uk/guidance/ng206/documents/workshop-notes-4

I'd have thought that's most likely, they will probably tags/categories on the post and the CMS does the rest - unless the web admin secretly supports us :laugh:

Boom.. https://www.nice.org.uk/guidance/ng206 edit to update link to GL

BBC quotes.. Dr Alastair Miller, an NHS consultant physician in acute medicine and infectious disease in North Cumbria, said exercise programmes could be helpful: "It is unfortunate that so much emphasis is given to working 'within current energy limits' rather than a gentle and controlled...

And Gaurdian https://amp.theguardian.com/society/2021/oct/29/health-watchdog-nice-publishes-delayed-me-guidance BBC https://www.bbc.co.uk/news/health-59080007.amp

The Times running article, but behind paywall so can’t see all of it https://www.thetimes.co.uk/article/me-patients-wont-be-told-to-do-more-exercise-c0k39tp7n

Ok, sorry, it's my perception, that they settle - which of course may be incorrect. I'm sure a lot of work is done to try to get more, and perhaps I expect too much with historical headwinds against them representing a group of patients that has been so marginalised for so long. I suspect we...

Am still new to the ME world, only ill for 2 years next week, so have a fairly short memory of their failings, but unless something significant changes, this will become a long memory of their failings.

Absolutely, but, I fear, based on past experience, the charities settle for ‘some’ coverage, rather than in depth - I’ll be happy to be proven wrong on this, obviously.

And to add, I think this will be a major test of the charities (who, I feel have a lot to do to redeem themselves with many patients over recent times - and not just over the GL) and F-ME, to maintain coverage and get lasting traction. I’d not be wagering much on the lasting coverage.

Be interesting to see how effective heir media strategy is, particularly F-ME who appear to have engaged a media co based on recent meeting minutes. Hopefully it’s suitably powerful in getting to the major outlets. Presumably, if the GL is released at 00:00 like the draft was, they will should...

Just seen this on Twitter saying GL will be published tomorrow and final has been sent to stakeholders. Not sure if it’s verified though..