Um. It’s #MEAwarenessDay. I find this weird to talk about online in any depth really. Making movies is a lot more fun and it’s nice to have A BIT of escapism from being ill BUT.

I got ME/CFS after a viral infection and, like. I feel like that might be pertinent right now?

So here’s a thread on ME/CFS, why everyone should know what it is right now, and why everyone should care a lot that it’s chronically dismissed and underfunded. #MEAwarenessDay

I have ME/CFS & it’s awful. Luckily mine is ‘mild’. For me, mild means I can pretend to live a pretty normal life whilst suffering from fatigue, migraines, pain, sickness, collapsing and any other number of these fun symptoms from the privacy of my own home / empty room.

FUN FACT. This double life stuff makes it quite hard to convince your friendly GP that you’re actually unwell. The ‘do you look ill’ litmus test is still going strong apparently. #MEAwarenessDay

I'm a pretty persistent lass, but I still haven't been referred to my local ME/CFS services. Instead, I’m told to self-refer for therapy.

For my complex multi-system illness.

CBT is incredible for so many life destroying things, but I don’t think it can heal mitochondria.

To be fair, we don’t truly know what causes ME/CFS. Other than a lot of people get it after having a serious virus. WE’LL GET TO THAT.

The @MEAssociation have put out a list of all the working theories of what causes ME/CFS if you’re into deep dives. https://www.meassociation.org.uk/wp-content/uploads/MEA-M.E.-Research-Summary.pdf

SPOILER: none of these theories involve patients being conditioned to believe they’re ill when they’re actually fine. This is, AND I KID YOU NOT, the party line I hear from medical professionals. #MEAwarenessDay

The psychological theory of ME/CFS is, um, not great. Anyone who has ME/CFS knows it can’t be true. AND YET the two leading treatments for ME/CFS in the UK would ONLY WORK if you accept that the psychological model of ME/CFS is true.

Another spoiler: the NHS treatments don’t really work, by in large. One treatment might actually make you worse. But that’s a whole other thread’s worth of words.

There are some ace people doing brilliant work into the biological causes of ME/CFS. But they're systematically underfunded to the point where the EU had to give a statement saying how bad it was.

So here we are. No money, no treatment. And a whole lotta stigma from GPs.

I want to emphasise again, I have MILD ME/CFS. If you have severe ME/CFS, you can’t sit or stand. You depend on a carer 24/7. People also don’t recover from ME/CFS. Without a treatment or cure, it’s usually lifelong.

Now remember how I said that ME/CFS can be caused by viral infections? Yeah, I meant that in a big way. @jenbrea has a great thread on different viruses and the number of people who go on to report post-viral fatigue. It’s… um, scary. https://twitter.com/jenbrea/status/1238988538844033024?s=20

Now, not everyone who has post-viral fatigue will go on to develop ME/CFS. But some will. So let’s say, on average, 10% of people get post viral fatigue after a serious viral infection. COVID-19, for example.

They don’t really know why, and in some cases will be told BY THEIR GP that they should go out & exercise to get their fitness back up. Now, that seems fair to your uninitiated punter. Exercise is good for you, right?

WELL, yes. But fitness isn't the main problem here. So many studies have shown that if you have post-viral fatigue and try to push through, it will have terrible consequences.

Most of the millions recovering from COVID right now, I’m guessing, won’t know this. They’ll want to get back to life, back to work, back to normality. I don’t blame them. COVID sounds traumatic, scary and something I’d want to forget.

BUT I really worry for people with no awareness of what could happen to them and lots of bad advice out there from the very people they will go to for answers. How many of them won't recover? Why isn’t everyone talking about this? Why is hardly ANYONE talking about this?

I guess my point is. If you get COVID and feel like you’re not recovering, please don’t try and push through it. Pace yourself and work within your limits. Please. Because I didn’t. I didn’t know. And now I'm here, 10 years later, unsure I’ll ever get better. #MEAwarenessDay

Yeah, not the sunniest point to end on but THAT’S WHERE WE ARE FOLKS.

Plz stay safe <3