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

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.
Click to expand...
 
SNT Gatchaman said:
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.)
Click to expand...
Should someone send them the DecodeME preprint now?
 
SNT Gatchaman said:


Noting this reply that encapsulates medicine's "thinking" —
Click to expand...

"I told my doctors all this and they said “Good. Keep exercising as much as you can. Keep pushing yourself.” When I went to the doctor one day in a PEM crash too weak to hold my head up, I got ordered for physical therapy for “deconditioning” even though I was still working out."

Whatever you do will never be enough to pass the doctors purity test. If you tell them you are exercising they wont believe you anyway.

I find the way recent papers have pivoted to sub PEM exercise (including people like David Putrino's clinical guide on Long Covid with PEM) as if that will magically fix the problem just disturbing. I am sure they will find plenty of evidence it works, but that is because they just can't see all the clear failures that are right in front of them for decade upon decade. The patient declines right in front of them one appointment to the next and its not viewed as a disease process at all. Its maddening.
 
Last edited:
SNT Gatchaman said:
My counselling psychologist ended our therapeutic relationship as I "do not challenge myself" in regards to CFS

Notable for the number of (appalled) psychotherapists with ME/CFS replying in the comments. I doubt they'd be pleased reading Jake Hollis.
Click to expand...
Seems to be the usual way in which this goes. Psychotherapist goes along with the patients view in the beginning and uses it to build trust to then use that trust to try and get them to exercise and do more. Its all just a ruse to try and make it appear like they believe in the ME/CFS disease but their real intention is to deliver the same old BPS exercise with CBT regime.

David Putrino and co at Mount Sinai have done this switcheroo with their guide recently, its a tactic as old as the approach, lie to the patient until they will do what you know is best for them but which they refuse to do because they have fake illness beliefs.
 
What’s the most ridiculous explanation a doctor has given you

Another good list of some of the BS medicine inflicts on people.

Shout out to —

been told my fatigue is caused by doing too little.
And by doing too much.

Award goes to the doc who told me both. In the same appointment.
Click to expand...

When I finally got it through to her that after my initial illness I was very active, exercising and pushing myself a lot and I went right back to normal activity, that my health slowly deteriorated over 2 years no matter how much exercise I did and that I became bedbound two and a half years /after/ my initial infection, she dropped the [deconditioning] issue and told me it was anxiety instead and if I did ongoing CBT for my "poor mental health" I'd be fine in 6 months.
Click to expand...

A consultant in rehabilitative medicine told me, "Some people are short, some people are tall. Some people are mentally strong, and some people are mentally weak." This was his explanation for why I had ME. I was 18 years old
Click to expand...

I was told by the occupational therapist who ran the NHS group course I attended that the only reason I didn't think the course had helped me physically was because I was too much of a perfectionist
Click to expand...

"You are not happy in your body. Get a Hobby."
Click to expand...

Dr: You just need to exercise.

Me: I was 18 and on the high school varsity rowing team when this all started. I didn’t join the rowing team in college because I physically couldn’t.
Click to expand...

Some girls aren't sick, they just get hospital appointments to get a husband.
Click to expand...

“I see women all the time like you who were high flyers and they’ve just crashed and burnt. I suggest you simplify your life, get a dog. Don’t be so ambitious”
Click to expand...

"perhaps you should drink." As in alcohol. Nevermind the fact I'm completely intolerant of it.
Click to expand...

"Is it possible you're just scared to walk?"
Click to expand...

That I was getting older and ”everyone gets tired as they age”. I was 16.
Click to expand...
 
There was a short article by a patient I read many years ago describing the endlessly contradictory suggestions and advice they received from all directions, personal and professional, about what was wrong with them and how they should deal with it.

I thought I had a copy but can't find it now, but it was a very neat pithy summary of how completely batshit insane it all was and what it felt like.

Nothing has changed.
 
Hubris said:
From the moderation team:
Many of the comments about people with ME/CFS on Reddit are ill informed and unkind, and may cause distress. We recommend that you consider whether the benefits from reading them outweigh the negative personal impact.
[edited for clarity]

Reddit thread headed:
What is the deal with all the h-EDS, chronic fatigue syndrome, IBS, MCAS bullshit?
Code: 
https://www.reddit.com/r/Residency/comments/13b7l45/
Click to expand...
Appreciated !
The days tough enough…
 
Hubris said:
From the moderation team:
Many of the comments about people with ME/CFS on Reddit are ill informed and unkind, and may cause distress. We recommend that you consider whether the benefits from reading them outweigh the negative personal impact.
[edited for clarity]
Click to expand...
Also horribly fascinating. What strikes me most is the amazing resilience of the PwME posting on Reddit who have been faced with the barking madness of some health professionals.
 
This just makes me realize how lucky I've been with my current GP. He lacks knowledge about us, as most GP's seem to do. But he's been open-minded and when something didn't work(the CBT/GET I pushed for in 2005), he acknowledged it, made notes and made sure I wasn't sent down that path again. If I want to try something, he reads up before giving his opinion. If I've got new info to share he actually listens. Whether it be personal or when I brought up the new IOM criteria for example.

He wrote a great letter for me for my disability hearings as well.

It's so messed up that this seems to be the exception rather than the rule.
 
Solstice said:
This just makes me realize how lucky I've been with my current GP. He lacks knowledge about us, as most GP's seem to do. But he's been open-minded and when something didn't work(the CBT/GET I pushed for in 2005), he acknowledged it, made notes and made sure I wasn't sent down that path again. If I want to try something, he reads up before giving his opinion. If I've got new info to share he actually listens. Whether it be personal or when I brought up the new IOM criteria for example.

He wrote a great letter for me for my disability hearings as well.

It's so messed up that this seems to be the exception rather than the rule.
Click to expand...
I think we just don't know how PwME are being treated by their GPs overall. It's natural for people to complain when they're treated badly and to not say anything when their expectations are met. I'm also treated well by my GP practice, though of course they have no specialist knowledge and shouldn't be expected to. We should have specialist services.
 
You must log in or register to reply here.
Back
Top Bottom