Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

[MrMagoo]

Post today from a patient who saw one of the PACE trial members.

Story about a really bad doctors appointment



Poster continues —

Dear Redditor,
It sounds unbelievable only to people who have not experienced these “medics” themselves. We here are all too familiar with this attitude. Join us, you’re very welcome.

 

[Yann04]

have compared us to terrorists and other nefarious people. Which is as insane as it's ridiculous.

Seems like they were a early user of the emergent definition of “terrorist” which seems to be “People who threaten our institutional status quo”

 

[rvallee]

Huge german influencer ranting about ME and getting millions of views in just 1 day

It's a TikTok video (physicians hate this one trick) that apparently got 1M+ views and lots of comments, including from other influencers.

Someone auto-translated the video:

It starts with you just being sick.
You have the flu or coronavirus, so you take a week off to finally recover properly.
But it doesn't get better.
You go back to work anyway, because life must go on.
But suddenly, you're completely out of it, just because you walked up a few flights of stairs.
It gets worse and worse, until you're so weak that you can't even get up.
Everyone tells you you just need to recover, but you're already lying in bed 24/7, not even on your phone or watching TV, because even that's too much of a strain.
You wear hearing protection because you can't stand any more noise.
The windows are completely blacked out because you can't stand any more light. You spend your life in loneliness and darkness, and the hope that things will get better diminishes with each passing day.
That is Sarah's fate, or rather, it was Sarah's fate because Sarah is no longer here.
That was Sarah before her illness, when she still worked as a nanny.
But in 2022, Sarah gets Covid.
That turns into long Covid, and it simply never goes away.
It only takes two years until Sarah lies in complete darkness 24 hours a day, alone with her thoughts; sometimes she doesn't even have the strength to eat.
And because Sarah eventually loses hope that things can get better, she decides to commit suicide.
Sarah had chronic fatigue syndrome (ME/CFS), making her one of over half a million people in Germany, even though Sarah's case was particularly severe.
ME/CFS is currently incurable, and those affected are morally let down.
To date, we know very little about the disease, and that's primarily because far too little money is being invested in research.
Even the federal government now only wants to invest a maximum of 15 million euros in research, which is less than 30 euros per person suffering from ME/CFS in Germany.
The fate of over half a million people affected by ME/CFS is currently worth as much to the federal government as a good restaurant per year.
And that's also because people who are seriously ill with ME/CFS can't speak out because they don't have the strength to do so.
But these people need us to not forget them. And research needs one thing above all else, and that is money.
Therefore, raise awareness that these people exist.
And dear federal government, 15 million a year is not enough.

 

[Utsikt]

Came across this series from a month back from an NHS orthopaedic surgeon and departmental clinical director. I won't put the quotes behind a spoiler as I think people are familiar with this thread and what we're up against, but worth recording.

Caution: ahead there be dragons















Link | Link | Link | Link

(As invited, I have indeed saved those comments and look forward to showing him he was wrong at some point in the future.)

Should someone send them the DecodeME preprint now?

 

[SNT Gatchaman]

Haha, I might just have to do that this morning!