Mau and ME

#MECFS for more than 20 years. I write about #ChronicIllness #Disability #Inequality #LongCovid and Cats #NoSpoonsForThisShit

[Mau and ME @_Mau_ME]

Micrographs of my blood from this week, where you can see amyloid microclots (fibrinaloids) and platelet activation.

#MECFS patient for almost 25 years, no clear onset, no known COVID19 infection and triple vaccinated (last jab in Jan).

#TeamClots

[RonaldwDavis @Ronaldw_Davis]

Community Symposium on the Molecular Basis of ME/CFS returns Sept 5 on zoom! 8am-1pm PST Attendance limited to 5,000. Registration required and can’t be shared. Registration link: https://t.co/QMlULV0d23
See photo below:

[ThereForME @ThereForME_UK]

The Xmas season can be really hard for those dealing with ME or Long Covid so we hope this advent calendar can bring a little joy.

Tomorrow we’ll see who is behind the first door in our #ThereForME advent calendar. We'll give you a little clue later!

Who would you like to see?

[Mau and ME @_Mau_ME]

@DafoeWhitney @notrendstudio Have you checked on a blood gasometry? I thought my O2 was normal from my pulse oximeter.

I also have difficulty breathing sometimes and I hate it. I use an oxygen concentrator for it and it helps a bit, but I'm not sure if it's an O2 issue or muscle weakness though 🤷🏻‍♀️

[PolyBio @polybioRF]

We are excited to have supported this new study via our #LongCovid Research Consortium.  The project team are our incredible @CUBoulderBN colleagues at the University of Colorado Boulder: https://t.co/KqpAQkAbAa

[Jo Greer @DrJoGreer]

Congratulations & many thanks to Hayley Arron 💙 & team. This should be prerequisite reading for anyone writing or speaking about / to people with M.E. especially for those in positions of power who are making the decisions #GreatestMEdicalScandal #pwME #Myalgicencephalomyelitis

[Jo Greer @DrJoGreer]

Rosanna Wregor DVM @Anonetal123 (carer for her partner with very severe ME) has formulated questions for Prof Ron Davis with input from 2 WhatsApp patient and carer groups. We are hoping these might be shared with Professor Davis via #UnitetoFight2024. Thank you so much. #pwME

[Jo Greer @DrJoGreer]

Congratulations to #UnitetoFight2024 for putting this together. Nothing short of phenomenal. Many of us in patient / carer groups have been desperately waiting for months for Prof Ron Davis' talk which promised to address issues not covered by any of the other speakers.

[Eliza Charley | Actress on Pause @ElizaCharley]

@U2Fight_World #UniteToFight2024 - Please please please give Ron Davis the full time - We really need to hear from him & it will be excellent to have the full talk recorded

Please please please 🙏 ✨

[Roisin Keogh @RoisinKeogh4]

@U2Fight_World Please invite Prof Davis back. There are literally tens of thousands of us hanging onto his every word. I know so many people who paces their day around listening to him. Please 💙

[Jo Greer @DrJoGreer]

People w/#MyalgicEncephalomyelitis need solidarity from people outside the 'ME Bubble'. Online concert to raise awareness & fundraise for @MEResearchUK and @SmileForME_xx https://t.co/uNai3S9oAo #BlueSundayforME #ThePiano @johnmcdonnellMP @PutneyFleur @CMonaghanSNP @ThePiano

[Mau and ME @_Mau_ME]

@TheChronicColab f*ck!£&# ignorance, these people are unbelievable. (It's just a blood draw by the way).
Thank you for all your help 🙏🏻

[Mau and ME @_Mau_ME]

@TheChronicColab If they don't believe the SpO2 reading ask them to make a gas blood test (standard test in every hospital). A gasometry of a severe ME patient shows very low O2 levels and high CO2.
If + they'll say prob a measurement error so ask them to test again. You'll have printed results.

[Maureen Hanson @DrMaureenHanson]

Remember to send your feedback on the Sanders’ bill for long COVID research by email to [email protected]. Right now pre-2020 ME/CFS is not included. Why not $1 billion for Long COVID-- AND-- $1 billion for ME/CFS?

[Maureen Hanson @DrMaureenHanson]

Our 2018 estimate of global incidence of ME/CFS was conservatively 65 million. Doesn’t pre-COVID ME/CFS need a billion for research also? Tell Senator Sanders at [email protected]
https://t.co/K7ap7f8jHa

[Prof Doug Kell CBE #FBPE #FBPA🔶🇪🇺 @dbkell]

New paper w @resiapretorius Herpesvirus Infection of Endothelial Cells as a Systemic Pathological Axis in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome https://t.co/YCvcOYNyyG #TeamClots #OpenAccess #MECFS

[Janet Dafoe @JanetDafoe]

Frontiers | Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopathology, and disease severity https://t.co/ugslkiMhJU

[Prof Doug Kell CBE #FBPE #FBPA🔶🇪🇺 @dbkell]

Super preprint on automated microscopy of #microclots in #LongCOVID by @cazd45 and colleagues: https://t.co/QkGgWoIOxc #TeamClots

[Mau and ME @_Mau_ME]

@DafoeWhitney I've been on anti-CGRPs for years and they sometimes block the pain but not the auras from the attack, so you still feel all the weird stuff (nausea, vertigo, muscle problems...).

I add domperidone, AINEs and triptans on top as needed, but don't always help with these symptoms.

[Mau and ME @_Mau_ME]

"There is a psychological intervention that could improve the lives of people with ME/CFS: an apology and recognition of the harms they have suffered."

Wonderful piece.

[George Monbiot @GeorgeMonbiot]

It’s the greatest medical scandal of the 21st Century. Intransigent doctors and gullible journalists have made the lives of ME/CFS patients a living hell.
A massive and shocking story in this week’s column.
https://t.co/apoW7uFGJS

[Whitney Dafoe @DafoeWhitney]

How to support Millie in the UK who is currently at risk of dying.

She is no longer sectioned but they STILL will not give her a feeding tube. 😱

IF you have the energy please send Millie a card showing solidarity and support so Millie knows we care about her and the hospital knows an international community is WATCHING them.

It's really easy to send a card on the website https://t.co/VeqNXYqSZE from anywhere in the world delivered tomorrow.

🔗 https://t.co/MTW6yrlGgR

Here is her address. You can just copy paste the text into a moonpig order.

Millie McAinsh
Lancaster Suite, Acute Ward, Royal Lancaster Infirmary
Ashton Road
Lancaster
LA1 4RP

And here is a link to a sample card you can use to make this even easier, just right click on the image and download it and upload it to https://t.co/VeqNXYqSZE.  it will only look good on 4.5" tall by 3.5" wide cards, any larger and it will get pixelated.

https://t.co/rN9ZtcElIx

Thank you for supporting Millie!  ❤️

You fuck with one of us you fuck with ALL of us. ✊

#EndMalnutritioninME #DontLetMeDie #MEKills #severeME #NHSProtocol4SevereMENow #VerySevereME #pwME #MECFS
#MedicalEducation #MedicalNeglect #MedicalAbuse #SaveMillie