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“… can easily be transferred into routine medical care.” They’ve got a shock coming when they realise just how careful they need to be and how time consuming it is to even enter the room when someone is severe/vs. At my worst it took 5 hours to simply wake up and turn me over. Even now a...

I feel like if there were consequences (reputational, monetary, legal… anything!) for their harmful views and misinformation then they’d clean up their act pretty quickly. I’m sure they’re aware that there’s a lot of research proving their theories wrong, but there’s no consequence for ignoring...

Author Information for the 11th Edition: Edited by David Randall, PhD, MRCP, Honorary Clinical Senior Lecturer, Barts and the London School of Medicine and Dentistry, QMUL; Consultant Physician and Nephrologist, Barts Health NHS Trust, London, United Kingdom John Booth, PhD, MRCP, Honorary...

Ha, yes it is… :cry:

I hate that these rabbit holes just get worse… how on earth has it ended up that pwME now also have to fight what appears to be a highly organised cult :banghead: Good idea!

Moved posts I agree, it’s seriously concerning that piece has been published. I read it was actually commissioned by the BMJ so I wonder who commissioned it? In just googling the paper I saw it was being shared on a physio site as a way to treat severe ME patients (link here) so the ripple is...

Good idea, thank you @Hutan, I will do! I hate that we have to fight this crap as well as the illness!

Ah thank you – I didn’t know the NICE guideline hadn’t been adopted properly in Scotland yet so explains why they’re getting away with pushing gaslighting rubbish!

Hey everyone! Just wanted to flag concern about an NHS GP practice called Camphill in Scotland, which has a huge array of ‘wellness’ resources on their website. Some are fine and I have no issue with them but others I find problematic and inappropriate. In these resources they say that Fibro...

@Adam pwme no thank YOU!!! :blush:

Pretty much anything by Broken Battery! Eg. And… *TRIGGER WARNING* Videos detailing personal stories of significant harm and death due to mistreatment of ME patients (Edited to add another link and because I managed to link a million things badly at first!)

Thank you for doing this!! Excited to read it when it’s out.

Thanks @Utsikt I agree, it doesn’t sound like it from that, but I wonder if it’s possible ME could be an as-yet unidentified form of lysosomal storage disease – perhaps so because it isn’t fatal and doesn’t show in infancy? Or maybe ME is overlapping somehow… or maybe neither! I just used...

Thanks for posting! A paper here about sphingolipid metabolism disorders is a bit beyond my understanding but I think may be relevant here. Does this mean ME could be a lysomal storage disorder or would it ‘just’ overlap?

It’s so harrowing to see these. I really hope the ME community can rally and get help to them. I’m not on Twitter or LinkedIn but I’ve tried to research whether there are any French ME experts and found one potential person called Pr. Jean-Dominique de Korwin who I think may be appropriate...

I think it’s a good idea to highlight the crisis of treating people on corridors etc, but you’re never going to get a true picture when staff are aware that journalists are reporting on their work. I personally don’t feel the experience of people with ME (and chronic illness in general) are at...

Merged thread BBC reporting live from Royal Free Hospital, London. Asking for patient experiences Today in the news: “The BBC is spending a day inside the Royal Free Hospital in north London, finding out how the NHS is coping after intense, annual winter pressures.”...

I don’t use it anymore as I can’t work but my partner does and will sometime share articles to try and increase general awareness. So it could be useful for that even if pwME no longer use it themselves?

@MrMagoo thank you so much that’s really kind of you. I guess one good thing to come from this illness is that the injustices force you to be stronger than you knew you could be, even if that’s just in little ways!

@Lou B Lou I fully understand why you brought up the Sussex and Kent ME/CFS Society as I had an unpleasant experience with them around 4 years ago. I’ll post my personal experience below because it further highlights the problems you brought up but I understand if the comments are going off...