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I'm not aware of anything of use in Liverpool (worth traveling 300 miles for).

There seems to be some confusion about whether the 404,000 figure is for the UK or just England. I believe it's for the UK, so this article would need correcting.

Yes, it's good that they've decided to publically challenge funders on this.

There is the opportunity to support this proposal by signing an open letter hosted by Organise Network, here: https://organise.network/actions/petition-a-proposal-for-an-me-cfs-long-c-xWkB_pcn/saf/take-action?utm_source=share&utm_medium=clipboard&utm_campaign=505a358c-8a1d-48ff-b55c-847346df5fe9...

Additional documents: (i) Letter from ME researchers to funders (ii) Letter to MRC and NIHR leadership (iii) Strategic Research Funding - Parliamentary Briefing

https://psp-me.co.uk/campaign-strategic-approach-mecfs-research/ The proposal (attached) can be supported via the 'Support the campaign' button on the above linked page.

I don't think a band-aid stimulant is what we need.

The new PIP Daily Living 4-point rule would mean 87% of PIP recipients with standard Daily Living would lose their awards. The figure is 13% for those with enhanced Daily Living. Not to mention these people would likely also lose their UC LCWRA awards.

Form here: https://docs.google.com/forms/d/e/1FAIpQLSelDC00Dul6_PiiBEZrAPHgG0HFdp8x9YtpBw9LwFGmIOkhJQ/viewform

I also have visual snow syndrome (7 years of), along with tinnitus (13 years of). Quite clear that my brain has malfunctioned with regards to how it's processing information, and I don't doubt for one second that these issues are in some way related to my ME.

"This is your chance to make your voice heard! NHS Greater Manchester is designing a brand-new integrated service for people with ME/CFS and Long Covid and they want to hear directly from you. This is a real opportunity to influence how care is provided across Greater Manchester - from diagnosis...

I don't know exactly how it works, but pre-prints are not yet typeset in the journal style, so it is common to upload the submission file and separate files for figures, but I'm sure you'd find pre-prints where the figures are inline.

That is deliberate. The paper is a pre-print so this will be how the journal expects the manuscript; usually they ask for figures as separate files or collated at the end of the document.

One of the co-authors, Natalie Hilliard, is listed as part of Physios for ME, but her first name isn't even spelled correctly, so that's not a great sign.

Did a beta-blocker help you? Propranolol 20 mg in the morning seems to help lower my HR but doesn't seem to do much else to help my OI (which isn't severe, but is still quite disabling during PEM). I may trial mestinon.

Do you have a PoTS diagnosis? Or dysautonomia / OI?

Presumably because there is a signal in the data.

This has come from this group's research on ME/CFS, e.g., https://pmc.ncbi.nlm.nih.gov/articles/PMC8313851/

Merged thread [Radio segment] BBC Radio Cornwall covers ME/CFS and discusses the DHSC delivery Plan

Can you describe the "chest tightness"? I am wondering if it's the same as my "chest heaviness" that is one of my main symptoms of orthostatic intolerance. It feels as though there's a weight in my chest and that I need to take a deep breath (to the top of my breath).