This.

“You’re so lucky! I wish I didn’t have to work!” People act like we’re getting a permanent vacation. We’re forced to live in legislated poverty. Barred from earning or marrying without losing our meagre benefits. Denied autonomy. And we’re sick & in pain. It’s a 24/7 job.

Everyone is sick because we’re in a big COVID surge. Everyone is sick because our Public Health authorities aren’t giving the public the advice they need to avoid infection. Everyone is sick because we still don’t clean the air in all schools and hospitals.

Does anyone ever find themselves asking, What am I missing? Why am I not getting better? What am I doing wrong? Why despite everything I’ve tried does my health not improve? That’s what having a disease with no healthcare, no support, and no treatment looks like. Devastating.

The DfE have published guidance on reducing the spread of illness this Winter. Much of it focusses on things like handwashing & catching sneezes which WON’T stop airborne illnesses spreading. BUT I’m pleased to see a whole section on VENTILATION, CO2 MONITORING & AIR FILTERS.

This fascinating new paper compares the similarities between COVID & HIV/AIDS. Whilst the underlying mechanisms are different, they do share certain outcomes, eg. immune dysfunction, viral persistence & neurological disorders. Both are also marked by stigma & delayed response.

I don’t remember what it felt like to have good health days.

Kemi Badenoch The The Green Party are the only party that has a plan to address Covid, Long Covid and cleaning the indoor air. Your post here says nothing. You have no plan. Your party CAUSED this. You told everyone to get sick, now lots of ppl are chronically ill. This is your fault!

There is a COVID cover-up going on. It’s why the authorities don’t encourage testing. It’s why the ONS stopped reporting the long COVID numbers. Authorities are happy to let rising sickness and disability get blamed on everything apart from SARSCoV-2 and you’re falling for it.

COVID-19 increases your risk of getting Shingles. Which will obviously be one reason why Shingles has been increasing in the population. COVID-19 accelerates dementia. And cancer. My big take-away would be try to limit the number of times you get COVID-19.

Oh look. Labour taking yet another terrible Tory policy and pushing it further. Embedding job advisers in GP surgeries? Just more pressure on the sick & disabled, forcing them into grueling jobs they can’t handle and shattering their trust in healthcare. Why did we vote Labour...

And out of every 10 people who are infected, (at least) one will become chronically ill. That means nearly every covid infection entering a Welsh hospital will disable someone else. This is why I mask at work. I refuse to disable my patients.

The big picture of ME/CFS is overwhelming & demoralising. But the cumulative impact of small actions matters. Every day we make a difference in someone's life in our community (online or offline). Here are some actions in the ME community that give me hope:

Colour palette of the liquidambar tree just now👇🏼. Pause for a moment if you’re feeling tired/anxious-my photo’s likely to cause dopamine release in your brain due to a positive response to gentle colour gradation, certain bright colours & looking at images our brains find

Long Covid Is Real — And It's Changing an Entire Generation “Hundreds of thousands of kids in America are struggling with an illness that many doctors and schools refuse to recognize” Rolling stone covering this … imagine that. rollingstone.com/culture/cultur…

Pic from our festival hour🥹when you can’t go out to one, have one come to you❤️(& make it quiet, around a bed, & to your needs!) So incredibly thankful for my family & their love, creativity, thoughtfulness, support and fun. We go through hell, but we get through it together❤️

Today's guest blog is from Rosie, who writes about her sister Alice's experiences. Rosie outlines the challenges people with v. severe ME face navigating sensory sensitivities, at home and in hospital - and the creativity & flexibility needed to provide safe care.

You can read Rosie's post here 👇 thereforme.uk/p/sensory-hell…

When someone seeks to bring me down (it’s been tricky on here today) I have a strong urge to channel the grimness & angst into something positive. So, here’s a photo I took of some things I grew-really hope it makes your brain feel good🌿