Snake illustration painted by hand with a touch of editing on procreate

Welcome to our new Twitter/X page for the Long Covid/ME/CFS Billboards project. Follow along with us for updates on the campaign and see how you can get involved!
gofund.me/933e3205

It's here! The paper that may contain a biomarker & possible unifying model for ME/CFS.

Summary: the combo of increased circulating FN1 & depletion of (n)IgM-FN1 is a biomarker for severity of both ME & #LongCovid . This has immediate implications for diagnostics & treatments!

🚨 Pre-print from Bhupesh K Prusty and his team is out! Very important #LongCovid & #MECFS study.

🚨 𝗣𝗼𝘁𝗲𝗻𝘁𝗶𝗮𝗹 𝗟𝗼𝗻𝗴 𝗖𝗼𝘃𝗶𝗱 & 𝗠𝗘 𝗯𝗶𝗼𝗺𝗮𝗿𝗸𝗲𝗿 𝗮𝗻𝗱 𝘀𝗲𝘃𝗲𝗿𝗶𝘁𝘆 𝘀𝘁𝗿𝗮𝘁𝗶𝗳𝗶𝗲𝗿 : 𝙃𝙞𝙜𝙝 𝙛𝙞𝙗𝙧𝙤𝙣𝙚𝙘𝙩𝙞𝙣 𝙖𝙣𝙙 𝙡𝙤𝙬 𝙣𝙖𝙩𝙪𝙧𝙖𝙡 𝙄𝙜𝙈.

There is a National Academies conference today focused on *all* illnesses that start after infection & viruses, like multiple sclerosis & others.

Livestream: nationalacademies.org/event/06-29-20…

(This is *not* the definition conference & *not* focused on #LongCovid , but LC is a part!)

'Increased illness was driving up school absences, with some citing #LongCovid while others mention their child appearing more susceptible to sickness'

Repeated #Covid infections may weaken a child's immune system - is anyone researching this in the UK?

theguardian.com/education/2023…

Recruitment of people with #LongCovid (in the UK) for the DecodeME the ME/CFS Study remains low.
5000 Long Covid DNA samples could be analysed.

If you have any reach within the UK Long Covid community, please spread the word!

I’m going to make a video talking about the complex relationship between pacing, rest, and PEM - and where autonomic conditioning might fit in (and why) as it seems counter-intuitive to the primary ‘rest and pace’ message.

Any particular Qs you’d like answered on the subject?

This is the most personal piece I've ever written. It's about my last three years living with chronic pain - the mystery, the loneliness, and the failures of the system. (Warning: discusses self harm and suicidal thoughts.) theguardian.com/society/2023/j…

Emerging biomarkers for #LongCovid from PHOSP-COVID study UK study. Progress is happening. 🙌

Tell us: have you been diagnosed with #LongCovid ?

The Guardian are keen to hear from people who have had their lives impacted by #LongCovid

Is important that this issue is kept current in the media so please contribute if you can

theguardian.com/society/2023/j…

Long Covid can impair quality of life more than advanced cancers, study says theguardian.com/society/2023/j…

Can I get some retweets? #longcovid

Chronic pain in long covid study... (but anyone experiencing Long Covid WITH OR WITHOUT pain symptoms can participate.

See poster/link below for eligibility/involvement leeds.onlinesurveys.ac.uk/chronic-pain-i……

(Psst., you can get a gift voucher)

👀 CCPERNs padlet of must have books for primary climate classroom! Added to each network mtg by our guest speakers! Lara Hawthorne Manon Steffan Ros Macmillan Children's Books Dapo Adeola @John padlet.com/cathdelor/clim…

Thunderer: as the ONS acknowledges the impact of post-viral illness (eg long Covid, ME) on the economy, research funding is drying up thetimes.co.uk/article/resear…

do share this if possible, it's not wildly far off

#longcovid #mecfs #postviral

petition.parliament.uk/petitions/6305…

Unrest is now streaming (for free) on YouTube, subtitled in 28 languages! #timeforunrest

please consider signing this petition - with record numbers of people suffering long term sickness it is appalling there is so little research into ME/CFS and Long Covid petition.parliament.uk/petitions/6305…

I received this answer after posting a message to the BBC responding to their piece about being unable to work due to a long-term viral illness ( #MECFS ) If anyone feels able to respond it could lead to some useful and truthful publicity. #LongCovid

Deeply worrying that there’s so little focus on #LongCovid . With 2 million people suffering - some so badly they can no longer work - you’d have thought ministers might be taking it more seriously - APPG on Coronavirus will keep pressing for more action Long Covid Kids - #LongCovidKids Long Covid Support 🌍