Search results

That's a good reference @Mithriel . I watched that today and realised I'd fallen out of some of my good habits recently. Quite sobering that even after 5yrs I still need reminding about how to manage this thing.

Sorry you're suffering more than normal. :hug: I also get aches and pains in PEM which bear no relation to what caused it. Usually burning calves and thighs, even if I've not been on my feet and have triggered it through too much cognitive effort. When it's really bad then upper arms too, and...

@Gecko my thanks to all involved. Some useful pointers and reminders in that.

No problem, I don't take that as dismissive. Perhaps you're right, I think it's a good point. Even at my worst I could get to the clinic in person, although it was a maybe effort and I paid for it for a while each time. As I said previously I know that others have had terrible advice through...

My last addition of contradiction and confusion. Pete Gladwell is the person who I've seen the most at the clinic! Yes, couldn't agree more.

Yes. I agree. I've not been pushed to try more exercise, it's been left to me to suggest what is appropriate (and they've accepted that that physical level has dropped a bit now I' working). Will see whether my opinion changes come the end of this 'Management into Practice' course.

Not trying to pick a fight, but just to give the benefit of my experience of one of these clinics. They were very supportive when it came to dealing with my employer, and my PHI supplier. As it happens I had a very well timed slight upturn in health which has had me able to work part time from...

I very much recognise your experience @adambeyoncelowe . It's a staple of my medication at 10mg and has contributed (a bit) to me being able to work part time from home. Also, previously been presrcibed SSRI's (doctor thought I had anxiety when I was first falling ill with ME) and I've never...

Thanks for reporting back, great to hear they were a worthwhile purchase. @JemPD they should be able to manage the hot tub hum, that sort of repetitive noise is what they should be best at. Fingers crossed for you.

Last time I had flu was swine flu, just after that Christmas having had regular flu before Christmas. Ugh I think that's the most ill I've ever been. Pre-ME. I suppose its no surprise that there's another virus that has the potential to be a pandemic. 2020, the year that keeps on giving!

It's going off topic a bit but I wonder how much it'd cost to get some professional photos taken that truly represent ME for sending out with press releases. The photos are often what draw people to articles, it could be money well spent in awareness raising.

You've helped make a lot of people happy this morning Andy et al. Thank you. :) Bit of a numpty question here, but when press releases go out do they include example images to include? Just wondering if the Guardian and others choose a photo of a 'tired person' over supplied photos, or...

I just can't leave a job half done! Against: Madison Estonia de Graaff NL Rookmaker NL Radačovský Slovakia Abstination: De Man BE Vandendriessche BE Kolakušić Croatia David Czech Hakkarainen Finland Loiseau FR Trillet-Lenoir FR Jurzyca Slovakia

@Ravn that's a good question and piqued my interest. The results are here (pg 174): https://www.europarl.europa.eu/doceo/document/PV-9-2020-06-17-RCV_FR.pdf Votes against: Identity and Democracy Party x2 (de Graaff, Madison), Non-inscrit [not members of a main EU party] x2 (Radačovský...

I agree, but I guess we're biased! Still possible he might change his mind in future I suppose.

Personally I think he's quite genuine, and wants to help, but I agree with your points @lunarainbows. I'm glad he's working on it, but I'm trying not to get too wrapped up in what he tweets.

He responded, but not favourably. Don't want to be too pushy...

I expect others may have as well, but I've tweeted him with an invitation to join us.

It was also included in the BBC Wildlife magazine. I tweeted them to say thanks as I think it was quite well written, and it's always pleasing to see articles on chronic illness making it into more widely read publications.

I'm pretty sure he's answered questions like that in his tweets but you'd have to dive into his timeline to find them. I think he's sais something along the lines of the viral infection can be localised, so not necessarily showing up in blood tests. Best find his quotes though as I could be...