Ror Preston Profile picture
Oct 18 โ€ข 1 tweets โ€ข 1 min read โ€ข Read on X
The COVID pandemic has undoubtedly been one of the largest, if not the largest, drivers of new ME/CFS cases in recorded history ๐Ÿฆ 

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 ๐Ÿ“ˆ๐Ÿ“ˆ๐Ÿ“ˆ

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!Image

โ€ข โ€ข โ€ข

Missing some Tweet in this thread? You can try to force a refresh
ใ€€

Keep Current with Ror Preston

Ror Preston Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @RorPreston

Jul 3
In response to my question 'What do you see as the most promising medications for neuro-inflammation in ME'? @drclairetaylor wrote a brilliant thread

Unfortunately the order was all scrambled, so with the help of ChatGPT have tried to put it in the correct order!

๐Ÿงต1/n
Introduction ๐Ÿงต 2/n Image
What we currently use ๐Ÿงต 3/n Image
Read 15 tweets
Feb 18
The case for ramping up ME/CFS research, through both public and private funding, is absolutely compelling ๐Ÿ“ˆ

Especially in light of the COVID-19 pandemic, which has significantly worsened this humanitarian crisis happening under our noses

A visual thread ๐Ÿงต Image
Image
Image
Read 8 tweets
Oct 9, 2024
Update on @wecrunchme ๐Ÿ‘€

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 ๐Ÿ“ˆ

(Short ๐Ÿงต)
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! ๐ŸŒฑ

3/n
Read 4 tweets
Jul 28, 2024
Some thoughts after 6 months with a @ParasymHealth - a tVNS device (transcutaneous vagus nerve stimulation) โšก

1/n๐Ÿงต Image
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
Read 6 tweets
Dec 29, 2023
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/ ๐Ÿงต Image
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...

2/
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!

3/
Read 6 tweets
Aug 10, 2023
The UK Government's Interim Delivery Plan for ME/CFS is out ๐Ÿ‘€

It's long, but the key thing is *next-step actions* - so here are a thread of tweets with what it says ๐Ÿงต

Note: Chat-GPT4 used here to help condense into tweet length bites

1/

#MECFS #pwME
๐Ÿ“ข 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.

2/
๐Ÿ“– 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.

3/
Read 22 tweets

Did Thread Reader help you today?

Support us! We are indie developers!


This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Don't want to be a Premium member but still want to support us?

Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!

Ethereum

0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy

Bitcoin

3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

Follow Us!

:(