Thread by @8Homeslice8

It's #MEAwarenessHour

ME is a complex physiological malfunction.

It's not something that a person can cure themselves from. It is unrelated to attitude.

It doesn't matter how hard a person tries or how positive they are.

So please be supportive of anyone you know who has ME.

World class scientists have not yet figured out the whole picture with regards to why people with ME are sick, and there are no licenced medications.

Behavioural therapy can be a coping strategy but is not a cure & can be very harmful.

There's no evidence that diet helps.

What scientists do know is that something has gone physiologically wrong in the bodies of people with ME, and in most cases it appears to be a complex interplay between viral infections, genes, metabolism, immune system, nervous system & cardiovascular system.

To complicate things, not everyone with ME is the same. There appear to be subtypes of the disease, potentially with different pathophysiologies, of different variations on a cluster of physiological abnormalities.

It's complex and not fully understood yet.

So when you wonder why the person you know who has ME isn't better yet, or why they can't just snap out of it, remember they don't know exactly what is wring with their body and there are no proven or licenced treatments and very patchy medical care.

Most likely they were undiagnosed for several years during which their life fell apart, then when they got diagnosed they received no medical care and if they are lucky some ill-conceived advice based on outdated psychosocial research which either didn't help or did them harm.

So then they tried to figure out how to treat themselves, and searched the internet, which was full of scams, 'miracle cures', and frankly outlandish suggestions like burn all your belongings and go live in a shipping container in the desert.

By this point they likely had lost their friends, job, reputation as a sane and credible person, etc. and had become very isolated. Something of a social outcast. And everyone thought ME isn't serious, it's not a big deal, they are just being pathetic and need to get s grip.

So by this point they are likely feeling very alone in the world. Nothing they have tried improves their health, but they need food and housing so they put all their meagre energy into survival, and spend 22 hours a day crashed with pain, weakness, excruciating sensory overload.

So nobody sees them. They effectively disappear. And their friends and family feel offended. Why aren't they making the effort to keep in touch? To be a good friend? It's just ME? They should stop being so selfish. We have problems too... etc. etc.

ME destroys lives. It beats people down and when they get back up again it beats them right back down again just as fast. It is there every second of every day. There is no respite. The more you fight it and try to get up and go, the harder it crushes you.

People who live with ME are strong. How many people do you know who get beaten up by a complex multi-system disease on a daily basis, with little to no support or understanding from friends & family , little to no healthcare, who get back up every day and try again?

Most sick and disabled people have the understanding of a doctor or some friends or family. Most people with ME have nothing but a bunch of stigmatising articles in the Times written by professionals who are supposed to care for them, about what horrible people they are.

So when you think of the person you know who has ME, try to understand the context in which they exist, the severity and complexity of the disease, and to recognise the strength it takes for them to still be here despite everything they have been through and go through every day.

Think of the person they were before they got sick. Were they motivated? Active? Friendly? Kind? Sociable? Funny? Imperfect but still your friend?

Inside they are still that person and they crave every second to be well enough to live a full and active life.

They most likely spend hours dreaming of all the things they would love to do, of plans they hope for in the future when an effective treatment is discovered, and also of the relief of one day being treated with belief and respect.

You can help by believing them now.

And by doing something for them occasionally that won't exhaust them but might make them feel cares for and less alone.

Send them a nice but short message, or a card sometimes. Or if you see something they might like, take a photo and send it to them.

If they can leave the house and you have a car, pick them up one day and drive them somewhere beautiful that they wouldn't be able to travel to themselves. Bring a blanket to keep them warm & keep chatter to a minimum. Just be there with them in silence as talking exhausts them.

You don't have to be all serious around them. They are the same person inside as they always were. Treat them like your good friend who has a terrible (non-infectious) flu. You can smile, joke etc. Just don't be too loud or raucous because sound hurts them.

And finally, one of the best things you can do for anybody you care about who has ME is to advocate for them. Show that you don't buy into or support the stigma. Share a message for ME awareness, do a fundraiser for biomedical research, speak up publicly in support of ME patients

If you do nothing else, speaking up publicly against the stigma and in support of the need for biomedical research will mean more to someone with ME then any present you could ever buy them. A show of solidarity will mean the world to them.

Thank you for reading my essay! ♥️