Nth Cornish Convert

Mother of daughter 21 with severe ME/CFS MCAS Dystonia. Bedbound in the dark 42 months

[Liam's LC/ME Journey @liamsLCjourney]

I keep chatting with patients with Long COVID/ME and no place to turn to in their country to get help.

This simply cannot stand. So we're going to solve it.

We're going to make a list of every country in the world and fill in the following information:
- Official organizations for LC/ME, if available
- Unofficial patient group chats
- What the vibe is as far as recognition, access to specialists, medications

If there is no group chat for patients in that country, help will be provided for them to create one and recruit patients.

Then, if they do not already exist, help will be provided to create the the following resources for each country:
- a list of recommended doctors
- available treatments in that country and how to get them
- how to navigate the local medical system

On a regional level, group chats will be created for country organizers to exchange ideas to level up every country in the region.

On a world level, the United Nations of Long COVID and ME Discord will be created, for organizers from each country.

With the power of the internet, we will solve information asymmetry and make sure no patient will be left behind, no matter which country they live in.

We're going to need a lot of help, and help can come from anywhere. So if you're interested, DM me or reply to this tweet!

[Carole Bruce @CaroleBruce17]

UK people with #Long Covid or #ME/CFS: please consider helping the HERITAGE project. They need to recruit 1,000 people who have not accessed an NHS specialist service within the last 3 years. https://t.co/GGN4pfxCBN

[Adam @ABrokenBattery]

“He has difficulty with chewing and swallowing… it’s a struggle to make sure that we’re getting the right nutrition, the right hydration into him… basically to be keeping him alive.”

@KarenLHargrave on caring for her husband James, who developed very severe ME following COVID.

[Tracey Burgess @TraceyABurgess]

Dr. Erin Nance. Brilliant! ⬇️
https://t.co/g2869dxQ8Z

[Jess @MeetJess]

@fillthewhole Dogs and turquoise sea water .. heaven 😍

[#ThereForME @ThereForME_UK]

You may have noticed there's a new PM in town!

Today's #ThereForME post from our co-founder @GoreLloyd outlines a problem his government will inherit when it comes to ME.

Houston, we have a data problem.

Link in next post 👇

[Brian Fog @useless_priest]

I find it's really hard to promote stuff like this online, for whatever reason.

I knew before I started, even if everyone was good enough to share, it would only get a few hundred views.

If I posted about masks or LC vs. ME or something, the algo would promote it more.

[Keith Siau @drkeithsiau]

@danaparish I had no idea horseflies can be associated with Bartonella, the culprit behind cat scratch disease, but you’re right 🙇🏻‍♂️

[Renegade Research @RenegadeRes]

We're excited to host @amaticahealth @NBoydGibbins for a research roundtable on July 23 at noon!

Amatica's RNA Sequencing Research

Amatica has one of the largest patient-driven RNA datasets in ME/CFS & Long COVID (159 disease vs 85 controls). Nick Boyd-Gibbins will share what the data is starting to reveal.

[Liam's LC/ME Journey @liamsLCjourney]

Until now, there has not been a list of recommended UK Long COVID and ME doctors all in one place... so we decided to make one!

https://t.co/NnYarA6rEq 🇬🇧

We painstakingly collated hundreds of comments from Reddit, Twitter, and group chats with only the most-rated doctors, pricing, and pros and cons from real patients.

25 doctors and clinics are listed, from NHS to private specialists, pharmacies for LDN and ketotifen, and even a link-out to @ChronicLiving1 for therapy options!

This is a living document and will be continually updated. Suggestions and updates welcome!

[Rebecca Ryan @DrRebeccaRyan]

POTS - Salt and water
Whenever I diagnose a pt with POTS, I explain how POTS affects their body (but in particular their gut). I then show how this leads to the development of symptoms. And how to treat.
For every disease we should always discuss treatments

[Adam @ABrokenBattery]

“These [Prevention of Future Deaths] reports make it clear that it’s not just a question of future improvement but a question of patient safety now. More deaths from ME must be prevented.”

Baroness Scott of Needham opening the House of Lords debate on Severe #MECFS

[Adam @ABrokenBattery]

“Perhaps the most damaging experience of all though is not simply the illness itself. It is not being believed.”

MSP Morven-May MacCallum speaking about her experience of Lyme disease and other chronic illnesses, including #MECFS, in the Scottish Parliament.

[ME Research UK @MEResearchUK]

On 18th June, a short debate (no more than 1 hour) in the House of Lords has been secured for 'The treatment of, and research into, severe myalgic encephalomyelitis' - https://t.co/bPc0pABoV1

[Adam @ABrokenBattery]

“They’re in a darkened room, they can’t tolerate light or sound… some are even tube fed. They’re so unwell, you almost can’t fathom it”

Former Team GB rower @oonagh_cousins on people with very severe #MECFS and #LongCovid and the importance to advocate for those who can’t.

[Adam @ABrokenBattery]

“They’ve had their lives completely demolished by this illness.”

Millions are living with #LongCovid while society has moved on.

Former Team GB rower @oonagh_cousins developed #MECFS following Covid and had to retire.

[Carole Bruce @CaroleBruce17]

I’ve just listened to this podcast. Thank you so much @oonagh_cousins for doing it and saying so many things that need to be said about the too often hidden world of #ME #LongCovid . It must have been exhausting, so much gratitude to you for speaking for so many of us xx

[Adam @ABrokenBattery]

Chronic Fatigue Syndrome is a terrible name for a disease. It does not convey the severity or the nature of the condition.

“It trivialises and stigmatises the illness.” - Dr Anthony Komaroff

Repost for #MEAwarenessMonth - now optimised for phones.

[PolyBio @polybioRF]

One of PolyBio’s key goals at this Spring symposium on Friday, May 22: defining neuroimmune mechanisms of disease in infection-associated chronic illness. This Friday, you’ll hear our research collaborators discuss projects from a novel retinal biomarker for cognitive dysfunction, to a whole-body T cell activation study using PET imaging.

Register now for PolyBio’s scientific symposium (Friday, May 22 11 am-5 pm ET/ 3-9 pm UTC, free to attend): https://t.co/pWwNZ8QC65

[Aaron @Aaronca11]

My old account is gone permanently due to inactivity for 30 days so I lost all my connections to the #LongCovid and #MECFS community.

Need to get following everyone again…