WorkingAndNotWorkingWithLongCovid

1/ We will add here links to resources for workers and stakeholders on #WorkingWithLongCovid some we were involved in. These are mainly U.K. but some have transferability to other countries. Please share and tag us to other resources 🐝 #LongCovid

If you feel like a shit person because you’re on benefits, you’re not. You feel that way because power needs you to - it’s a distraction from the real takers. You are alright.

On 22/05/26, there will be a launch event for the new national Resist Rent Rises campaign. The campaign is targeted at encouraging tenants to use their new rights and to fight for rent controls. WHERE? The Jain Centre, Longsight, M12 4QE WHEN? 20/05/26 at 6pm. 🏘️📢

🫶 Living with Long Covid affects whole families. For our June newsletter, SHH-UK is inviting short lived experience pieces from carers, partners, families & healthcare workers affected by Long Covid. Your story could help others feel less alone #LongCovid #HealthcareWorkers

🚨Breaking! 🚨 Motability scheme withdraws compulsory black boxes after criticism. Motability boss Andrew Miller said the "Drive Smart" programme was introduced to help reduce accidents, but had been paused amid concerns and "anxiety" from users. bbc.co.uk/news/articles/…

Two week reminder to fill in the Timms review into PIP. I know we have been through countless consultations but it WILL be worse if we don’t push back and it’s vital those in MH respond as we are a key target and our organisations tend to be tamer. tinyurl.com/3h56djf7

Excellent thread by @BehindWards ⬇️⬇️⬇️⬇️⬇️

Long Covid has become one of the most common chronic diseases, as common or more common of conditions "such as ischaemic heart disease, gout, chronic obstructive pulmonary disease, and rheumatoid arthritis." Yet it remains poorly addressed and treated newsroom.co.nz/2026/05/14/the…

Starting now. ☺️

📰 Our concerns about Garner, Chalder & Carson at #RCPsychIC in the @TheCanaryUK "The signatories state that these concerns are not abstract academic disagreements, but issues that directly affect clinical reasoning, service design, and patient care pathways." thecanary.co/uk/news/2026/0…

Oh boy the day after ME/CFS Awareness Day. So many emotions. It's ok to feel let down by the world for not seeing us despite our profound efforts to be seen. We deserve better. But most importantly, take it easy today. The worst thing you can do is push yourself while in a crash - this could lead to devastatingly permanent worening and whatever it is - it's not worth it. And I know many of us crash for #MECFSawarenessday. So give yourself permission to rest today or for weeks or however long you need, knowing we did everything we could. We're in this together and we'll keep going until the world sees us. ...and apologizes. #MECFS

#DWP #NoMoreBenefitDeaths The Disability News Service (DNS) has obtained a secret DWP paper that shows that the DWP’s failure to make promised call backs and failure to action changes of address can lead to the death of claimants. benefitsandwork.co.uk/news/dwp-call-…

Greater Manchester still says no to NHS data platform with Palantir at its heart Public concern has only grown, says ICB, while evidence of benefits remains thin Manchester showing the way

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…

For the full story on: 🔹History of the Royal Colleges in ME 🔹Key issues of why change is needed 🔹 Download the Open Letter 🔹Link to Audio longcovidadvoc.com/post/open-lett…

✉️ Anyone is welcome to sign the open letter. The form is open for 2 weeks & then will be sent to President-Elect Prof Subodh Dave on May 26th. @subodhdave1 Thank you for your support. With collective effort we hope for change from the Royal College that will benefit all people with ME & Long Covid. forms.gle/UCNpAs2d43ydaF…

Wow! Our morning total has come in another 10 orgs have signed and 175 peeps 🔥 💐 Thank you everyone! Signing link 💌 forms.gle/UCNpAs2d43ydaF…

We Need Your Help Imagine starving to death and being allergic to all food.  And everyday trying to decide between starvation and a deathly allergic reaction.  ME/CFS is like an allergy to energy expenditure.  Imagine everyday trying to decide between doing something that makes you feel alive or deathly sickness.  The more you do, the less alive you feel.  And the less you do, the less alive you feel.  And the more you do, the less you are physically capable of doing.  That is ME/CFS.  Everyday.  For decades.   But if you don’t have ME/CFS, and are not allergic to life itself, you could decide right now to help us.  And it won’t cost you anything but an extra work day, or one less toy or luxury, or some other small sacrifice in an otherwise life full of blessings and opportunity.  Which I would not want to take away for a second.  But a small sacrifice from you would go a long way towards helping people living in absolute hell.   Go here to donate to ME/CFS research:  whitneydafoe.com/donate Learn more about ME/CFS here: whitneydafoe.com/mecfs/whatisme… ================= ================= #mecfs #mecfsawarenessday #mecfsawarenessday2026 #chronicillness #pwME #spoonie

It took 7 years but we have managed to publish an article in the physiotherapy frontline magazine "Do no harm". Thank you to the @thecsp for publishing. Over 65,000 UK physios will see this important message about #pwme @PhysiosForME

Dr @BinitaKane explains how a theory that #MECFS is caused by deconditioning and a fear of exercise permeated medicine and framed the illness as psychological. This led to the patients being neglected, gaslit, and some would say abused. Causing huge trauma for the community.

'Prolonged Close Contact' is the new 'It's not airborne'.