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https://www.theguardian.com/society/2023/jul/11/chronic-fatigue-guidance-discouraging-exercise-is-flawed-say-researchers In the above Guardian article (11th July) NICE said: “We will provide a detailed response to this analysis and in the meantime we are confident that system partners and the...

Welcome @Frenchguy sorry to hear about your situation. Ron Davis recently talked at the investinme conference about very preliminary data that suggests that possibly 25% of ME patients may also have MS. Time from about 9-12 min on talk. It’s something they will pursue but very early days.

Prof Scheibenbogen has been interviewed by Gez Medinger and Dr Asad Khan. The talk is divided into 3 short duration YouTube videos uploaded in the last few days. Focus on subgroups of LC including mainly MECFS, viral persistence, autoimmunity, clinical trials, bio markers, personalised care...

Done. Facebook comments highlight the cut off from moderate to severe as if sound and light intolerance only happens to severe +. Other comments along lines of: not sure what is going on with this ‘campaign’. A lot of doubt and cynicism out there. I know NICE guidelines use these...

@Adam pwme - thank you for all your videos so much appreciated. Lets me see the relevant bits easily and share with family and friends. It’s a hugely valuable resource. I’m in the North West and missed this last night.

https://www.longcovidweb.ca/our-team Seen a couple of tweets about this. Lots of names positive and negative including Paul Garner and Michael Sharpe.

The YouTube video above posted by @RedFox has been forwarded to me from a physics grad as it came up in his feed. So sad for Dianna and family. A brief and impactful video for very severe ME. (Thinking ahead to APPG on March 21?)

My resting HR 48-55 is unusual compared to before even when I ran regularly. GP said I must be fit :banghead: (years of ME later) I went to GP because my HR can dive suddenly after or during an activity as low as 37 bpm. Blurry vision, dizzy etc. ECG showed up no major issues. For me RHR...

Recent Sheffield ME & Fibro talk. Prof Pretorius and Dr Caroline Dalton (Sheffield Hallam) Felt overwhelmed by first talk by RP, too fast and detailed. Second talk by CD was interesting and easier to follow. She seemed to understand pwME, raising good queries but unfortunately couldn’t get the...

Also me. Pace scores 7-9 mostly, despite a crash. HRV seems elevated when crashed. I’ve added customised trackers including my ‘overall function’ so I can see patterns of really bad days to less bad days. I gave feedback in App about including our own function or them generating a percentage...

@InitialConditions yes apologies too brainfogged to quote you or point you to my old posts but they are here I think on a general ME specialist clinic thread.

Thank you Natalie and Josh for what you have done. So much appreciated. X

Just a quick update on Liverpool clinic. I alerted ForwardME earlier this year and the out of date info disappeared fast but as you say webpages under construction message still lingers. Brain Charity referral never materialised due to capacity. If you look direct with the Brain Charity they...

Acronym PMS might be problematic :)

For Liverpool I have been told I can self refer back within 6 months or GP refer after but ONLY to ‘do’ the seminars. Therefore that’s the end of the road for me until things change. The seminars are stuff we know already. The useful aspect for me was getting a detailed letter from a...

https://www.rlbuht.nhs.uk/departments/medical-specialisms/chronic-fatigue-syndrome-myalgic-encephalomyelitis-cfsme/frequently-asked-questions-cfsme/ @Jonathan Edwards I have written to ForwardME but here’s the FAQ which includes links about GET plus not catering for severe ME. Pages have been...

Yes I am still waiting The Brain Charity in Liverpool to contact me. This isn’t about any therapy but I guess to divert pwME away from Liverpool MECFS clinic with it’s poorly funded resources. Liverpool MECFS website claims funding is the reason they don’t cater for more severe patients. The...

I’m looking at the diagnostic algorithm (screenshot attached) and trying to work out their thinking. I’m not sure I understand the last two boxes just above the MECFS/POTS. It looks like if you have been in ICU or have organ system pathology or autoimmune issues then LC. If the above not...

Go to GP. Useful to have records of HR and BP (when better/worse) plus Video/photo. I had this and had low BP and HR during episodes. Had low potassium. Extra fluids and electrolytes helped. But can be other more serious issues. Was given 24h ECG.

https://chng.it/6KnQWKJfm9 Urgent scientific research into mechanisms/pathways causing Long Covid & Post-Viral ME/CFS