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

Wow. One strong theme seems to be coming through on this one, which is projection and that their issue is clearly driven by their [HCPs on here] own laziness, given that word gets mentioned so much. So they are trying to label the patient with what their own attitude issues are, because the patient won't be coerced into making their life easy by their illness disappearing. The hassle of having no easy place to send someone seems to have been transferred to being the patients fault

Sad such people undermine their own wishes by engaging in counterproductive behaviour (suggesting managing them out by making things more unpleasant will make them more ill/cause PEM in me/cfs), that makes a patient iller and makes things further from being able to move forward by bullying and then being 'all shocked' that someone isn't going uphill from their wonderful 'treatment', given that doesnt' work for any other ill people. Then can't see the problem in themselves

 

A doctor who advises lifestyle changes to fatigue sufferers and gets poor ratings for not listening to their "bad" patients.

 

It's funny how it's always physicians who bring up magic. We know the process actually happens through working out the problem using science, which they refuse to even try. We know this isn't magic, it's the whole damn point: they aren't magicians. Until they put in the work they will never solve this, and sure enough they haven't, so they still go around projecting how it is we who want magic, when it's them who are pushing it relentlessly.

 

What you can clearly see from threads like this one is most doctors consider ME to be an attitude problem and not a psych one. There are some comments calling for psychotherapy, but there are also other comments saying "get a psych eval and when it comes out negative discharge the patient forcefully, hospitals are not homeless shelters".

The consensus in medicine is these patients are actually perfectly healthy people who are choosing to be lazy and unpleasant towards the medical staff. Like kids in the classroom not doing their homework and choosing to annoy the teacher.

Even the doctors who try to Google stuff and end up finding CBT/GET, or that come up with an explanation that maybe the patient has depression, as considered niche, especially as nowadays there are often disclaimers on the lack of proven efficacy of things like CBT, GET and antidepressants for these patients.

You'd think this would be a step forward, but instead it was a step backwards. We are now back to "nothing is wrong with the patient at all, so just get rid of them it's not my problem if they end up homeless".

This shows the problem is much bigger than just "BPS". It has something to do with the doctors' decision making algorithm.

 

There is this “magical” thing you can use called honesty and empathy. Where you say “we just don’t know enough about it for me to suggest anything, I’m sorry, I understand you want an answer, I don’t have any” but that’s impossible for a doctor to say. It’s hard to know whether it’s more difficult for a private healthcare one to say it than an NHS one.

 

Not much to go on with, but this thread on the LC sub-reddit has several MDs and scientists talking about LC and what they know of it and of ME/CFS.

Certainly a much different perspective than what we usually see.

Are there any doctors/medical experts who browse this sub?

 

Thanks rvallee. S4ME is brought up a couple of times. Here's one:

 

As a non-reddit user, and only occasional reddit reader, I'd like to know what "old.reddit.com" is. There are no dates on reddit threads that I've read, so I can't figure out how old.reddit.com is populated. Note that as a non user of reddit there are a lot of thing about reddit I don't like or don't understand. I hate the display of threads, for example.

 

old.reddit.com is just the old design of reddit.com. They upgraded it, but they kept the old version at that URL for anyone that liked it better. All the same content. If you remove old in the above URL, it'll go to the new version.

 

Thank you!

 

It seems weird to still believe that you’d never encounter someone with ME/CFS, though. And especially considering how underdiagnosed it is.

 

Fluge and Mella are oncologists. Although they met diagnosed patients and saw that it wasn’t like normal cancer issues.