The COVID pandemic has undoubtedly been one of the largest, if not the largest, drivers of new ME/CFS cases in recorded history ๐ฆ
A major NIH-backed study, based on the RECOVER-Adult cohort and led by the Bateman Horne Center (@BatemanHorne), found that adults who had been infected with SARS-CoV-2 were 7.5x more likely to meet the diagnostic criteria for ME/CFS 6 months later than uninfected controls ๐๐๐
These findings, in a large cohort, fit well with previous independent findings, that ~10% of people infected with SARS-CoV-2 go on to develop long COVID, and that ~40-60% of long COVID cases meet the diagnostic criteria for ME/CFS.
This helps to demonstrate why COVID-triggered ME/CFS should be recognised as a distinct subgroup in long COVID research and trials, and why ME/CFS deserves significantly greater attention and funding in its own right!
โข โข โข
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From early next year, I am going to be taking CrunchME forwards with all my energy, with the primary goal of helping to accelerate funding into #MECFS, #LongCovid & IACCs more broadly ๐
(Short ๐งต)
I've had an amazing time as part of the @visible_health team, and am hugely grateful to have been a part of that journey.
It's a stellar group of people: each person in their role is doing incredible work there, and I fully expect it to keep going from strength to strength
2/n
But these diseases need attacking from many angles, and I feel there may be something I can uniquely contribute to the space via @wecrunchme
And the start of 2025 feels like the right time to put that to the test, and see if I'm right! ๐ฑ
3/n
Some thoughts after 6 months with a @ParasymHealth - a tVNS device (transcutaneous vagus nerve stimulation) โก
1/n๐งต
The idea is that it stimulates your Vagus Nerve, helping to trigger the parasympathetic nervous system, and so get your body into a 'rest and digest' state
I will say first off, it definitely *does something* - unlike with some supplements, no wondering if it's doing anything at all!
2/n
I personally use it on the lowest available intensity setting, and in my moderate state, for only up to 10 mins max currently
Any longer & more intense, it feels like it has a destabilising - rather than stabilising - effect on my nervous system
3/n
I think there is far greater potential for collaborative research between #MECFS and #LongCovid - indeed between all IACCs!
Whilst improving, this chart shows that only 2.6% of research papers mentioning LC also mention ME/CFS
1/ ๐งต
Given the current evidence suggests around 20-50% of Long Covid cases meet the diagnostic criteria for the 'ME/CFS subtype' - this number seems *far* too low
Like 10x too low...
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Ultimately, this is a disservice to Long Covid patients, who could be benefitting from the decades of (extremely underfunded) research and learnings accrued by the ME/CFS research community
You can use this research to accelerate your own!
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The UK Government's Interim Delivery Plan for ME/CFS is out ๐
It's long, but the key thing is *next-step actions* - so here are a thread of tweets with what it says ๐งต
Note: Chat-GPT4 used here to help condense into tweet length bites
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#MECFS #pwME
๐ข Agreed Actions on ME/CFS:
The UK Clinical Research Collaboration (UKCRC) - Research Working Group commits to foundational research by spring 2024 to guide future sustainable actions on ME/CFS.
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๐ Research Strategy:
Dept for Health & Social Care (DHSC) to host workshops and initiate new clinical studies, aiming to broaden the research base and align with PSP Top 10+ priorities.
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