Jo Maybin

Researcher, Writer & Coach for progressive change. Prev @TheKingsFund @BBCNews. Parenting in #neurodiverse family. Living w #LongCovid. *On social media break*

[Jo Maybin @jomaybin]

After 18 mnths off work sick with #LongCovid, I’ve lost my job of 17 yrs. It has been a huge part of my identity, purpose & social world. And our income. Unusually, I will be getting some medical pension. Most sufferers aren’t so lucky. Disability + poverty. You don’t want this.

[Office for National Statistics (ONS) @ONS]

There are now 2.5 million people not working nor looking for a job because of long-term sickness, up 400,000 since the start of the #COVID19 pandemic.

Today we’re looking in more detail at this, including those who report more than one health problem.

➡️ https://t.co/CYmnzXY2yT

[Jo Maybin @jomaybin]

Hi @dhlexpressuk You were due to collect a medical sample from me this morning. Nobody has arrived, your customer service line isn’t working & your website & online chat say they don’t recognise the waybill number. Pls can you get in touch? 🙏

[Jo Maybin @jomaybin]

@Jos21Bell I’m so so sorry to hear this. Joss was very generous with her knowledge and experience of long Covid when I was at my most severe. It sounds like that was typical of her. Sending warmest possible wishes to her family and friends. X

[Ziyad Al-Aly, MD @zalaly]

🚨 Coming Soon: We're publishing a major review on Long COVID and a comprehensive roadmap for policy and research priorities.

🗓️ Release Date: Friday, August 9, 5:00 AM ET

📣 Journalists who are interested in covering this, please contact us via email.

[Jo Maybin @jomaybin]

@DrAnnaDixon @TheKingsFund You looked a total natural Anna! I was so proud and so moved. ❤️

[Jo Maybin @jomaybin]

So brilliant to see newly elected Labour MP @DrAnnaDixon use her first question in Parliament to raise awareness of #longcovid. Thank you Anna 🙏
Let this be the govt which invests in prevention, research, care & support for all those suffering from post-viral illnesses #ME

[Anna Dixon MBE 💚 @DrAnnaDixon]

Was thinking of my dear friend and former @TheKingsFund colleague @jomaybin as I asked my first question in Parliament today.
#LongCovid

[Anna Dixon MBE 💚 @DrAnnaDixon]

Was thinking of my dear friend and former @TheKingsFund colleague @jomaybin as I asked my first question in Parliament today.
#LongCovid

[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

[Jo Maybin @jomaybin]

@ZebraLoveCo @Naomi_D_Harvey Just checking you know of @BendyBrain ‘s work...

[Jo Maybin @jomaybin]

@RorPreston @JanetDafoe @coco_chatel @SawyerBlatz @MichaelPelusoMD @PutrinoLab @zalaly @MEResearchUK @MEAssociation @weandmecfs Also wondering about social venture capital as a route? (Though I’m afraid I know nothing more than that it is a thing…)

[Janet Dafoe @JanetDafoe]

@coco_chatel @SawyerBlatz @MichaelPelusoMD @PutrinoLab @zalaly Add Ron Davis to the list of critics. For one thing he’s been ready to go with a clinical trial of Abilify and can’t get it funded. There are many clinical trials that are ready to go but don’t have funding. That response is so disingenuous

[Sarah O'Connell @SarahOC_MECFS]

I'm looking for #LongCovid patients over18 yrs old who live in Ireland to contact me or @LCAIreland via DM. We will reply with details of the study & survey link
The study is to assess LC as a fluctuating illness; an aspect we believe its very important for society to understand

[Jo Maybin @jomaybin]

@charlie_psych Also push for constant “growth” [sic] is exhausting. So self-feeding system!

[Jason Hickel @jasonhickel]

2. Second, capitalism is organized around - and dependent on - perpetual expansion, meaning ever-increasing production of commodified goods. It is the only intrinsically expansionary economic system in history (meaning it basically has a crisis if it doesn't continually expand).

[Jo Maybin @jomaybin]

@senresourceblog Oh and such a lack of understanding & provision for PDA resulting in at best implicit parent-blaming and use of social services for surveillance.

[Jo Maybin @jomaybin]

@senresourceblog EPs! Seems to be a choice between sig underpowered rx from LA EPs or waiting many months & spending £2k+ on private. Happy to DM further details if helpful.

[Jo Maybin @jomaybin]

@CiaraGlenville Thank you. Shall meet you at the woods in due course! 🤞😊

[Billboards for LC/MECFS @LCMEBillboards]

For Long Covid Awareness Day on March 15th, we will be hiring a Digivan for 8 hours and will be covering a route that includes the Palace of Westminster, the DWP building and Downing Street in London. The van will be able to park in the streets around this area and drive as close to the targets as possible (security permitting) with audio, images and video playing for anyone in the vicinity.

[Dr. Lucky Tran @luckytran]

I think it's a positive sign that such a large consumer-focused outlet like @MensHealthMag is warning its readers about COVID reinfections, Long COVID, and is recommending masking in 2024. More of this, please!

[Gwen B. with LC 🍂🫖🌬☕𓅓 @PenGwenWithLC]

#DidYouKnow #AScreenReaderCanReadThis
#butnotthis
And that's why it's important to use Camel Case in your tags

Especially if you're a disability/Long Covid advocate

💕Solidarity doesn't leave our community and allies out💕