Researcher, Writer & Coach for progressive change. Prev @TheKingsFund @BBCNews. Parenting in #neurodiverse family. Living w #LongCovid. *On social media break*
London
Joined March 2011
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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.
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.
➡️ ons.gov.uk/employmentandlabo…
ALT Bar and line chart showing overall economic inactivity has been decreasing since May to July 2022, whereas inactivity because of long-term sickness has continued to increase.
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 retweeted
🚨 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.
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
Was thinking of my dear friend and former @TheKingsFund colleague @jomaybin as I asked my first question in Parliament today.
#LongCovid
Jo Maybin retweeted
Was thinking of my dear friend and former @TheKingsFund colleague @jomaybin as I asked my first question in Parliament today.
#LongCovid
Asked my first question in Parliament today in response to @patmcfaddenmp statement on 1st report of the Covid Inquiry.
Important we don’t forget all those who continue to suffer with long Covid including children.
#CovidInquiryUK #CovidInquiryreport #CovidInquiry #LongCovid
Jo Maybin retweeted
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 moonpig.com from anywhere in the world delivered tomorrow.
🔗 moonpig.com
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 moonpig.com. it will only look good on 4.5" tall by 3.5" wide cards, any larger and it will get pixelated.
whitneydafoe.com/pictures/Mi…
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 retweeted
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
Jo Maybin retweeted
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 retweeted
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.
Jo Maybin retweeted
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!
ALT Men's Health How Repeat Covid Infections Can Harm Your Health They might push up your risk for diabetes and other chronic problems.
ALT hy You Still Need to Take Covid Precautions You’ve likely stopped masking and might not think about Covid as much as you used to, but it remains a major cause of death and disease, Dr. Friedberg says. Still, Covid seems to have joined the ranks of other respiratory and infectious diseases, like the flu, that are here to stay, Dr. Loafman says. However, Covid isn’t necessarily following a seasonal cycle, like the flu—instead, it keeps hanging around with new variants emerging and periodic spikes happening. So, it’s crucial to keep following all the guidelines we’ve learned over the past four years to protect yourself and others. Stay up to date on vaccines, Dr. Loafman says, and if you do get sick, wear a mask and stay away from others. “Each infection is like taking a chance at the lottery,” Dr. Friedberg says. “The odds are a bit better than they were three years ago, but there is still a chance you could end up with serious illness..."
Jo Maybin retweeted
#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💕
Jo Maybin retweeted
Watched #Breathtaking? Appalled by what you saw? Some NHS workers never recovered from the infections caught due to non-existent/suboptimal PPE and now have Long Covid. In this vlog @BrendaEadie talks about loosing her job : shh-uk.org/i-now-have-no-job…
Jo Maybin retweeted
📣 New in @ScienceMagazine
I teamed up with @EricTopol to write this #SciencePerspective on Long Covid
Solving the puzzle of #LongCovid
A long 🧵
science.org/doi/10.1126/scie…
Jo Maybin retweeted
Rishi Sunak met King Charles at Buckingham Palace yesterday afternoon for the first time since his cancer diagnosis.
🔗 bbc.co.uk/news/uk-68363202
Now, do you see what I see?! 👀
It’s a HEPA air filter, prominently positioned in the background of many of the photos!
1/
Jo Maybin retweeted
"There's a culture and attitude that M.E. doesn't exist."
For years many doctors believed M.E. was 'all in the mind' of those who were suffering. Times reporter Sean O'Neill lost his daughter Maeve 2021 aged 27 after suffering from severe M.E.
Jo Maybin retweeted
📢🚨🚨🚨New paper dropping Thursday.
Embargoed until 2:00 PM ET Thursday February 22 .
Interested journalists, email me.
No DM please.
#LongCovid
Is this an opp to match comparison schools w/out filters to look at wider health impact of air filtration, inc on covid & post-viral disability in kids & families? #longcovid #ME @CathNoakes @SadiqKhan @UKHSA @hmtreasury bbc.co.uk/news/uk-england-lo…
Jo Maybin retweeted
Berberine got all trendy-like but I wish folks took it more seriously - it’s not candy.
BBR can rival metformin and paxlovid for LC without causing lactic acid buildup or bone thinning. In fact, BBR mitigates lactic acidosis and strengthens the bones. Nothing else does this.
I cannot overstate the extent of dysfunction in our own experience of the LA SEND “support” system. It feels anything but supportive. Months & years of relentless battling to try to get the system to deliver on its statutory duties. Cock-up & conspiracy. theguardian.com/education/20…
