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

jonathan_h said:
This new thread on the hospitalist subreddit about a person with LC/ME is one of the most upsetting I’ve ever seen. Truly frightening.
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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
 
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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.
 
jonathan_h said:
This new thread on the hospitalist subreddit about a person with LC/ME is one of the most upsetting I’ve ever seen. Truly frightening.
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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.
 
jonathan_h said:
This new thread on the hospitalist subreddit about a person with LC/ME is one of the most upsetting I’ve ever seen.
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As often with these threads there are a few gems of rationality/experience buried way down in the replies. In this case it's here with some follow-on replies —

MD, not a hospitalist: Just as a counter point, obviously I don’t know this patient. I was an anesthesiologist until just over a year ago. I had to stop working due to long COVID. I look 100% normal. I can put on a face and hold a conversation for a while. If you didn’t know me you’d think I was [Full of Shit]. I used to be the chief of anesthesia at my hospital. I was a top level athlete. Now I am just shy of bed bound and would be house bound if my wife didn’t drive me around. I’m trying desperately to find a viable treatment. At this time it is elusive.

For sure this pt doesn’t need in patient care. [Skilled Nursing Facility] is likely appropriate. Make no mistake, this illness is no joke, and no one would fake this lifestyle. It sucks. There is likely good reason for her to not participate in PT. Learn about PEM, post exertion malaise. It is real and it is devastating. Arranging proper discharge will be difficult. But if you kick her to the curb, she’ll likely just vanish and die in obscurity.
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With a reply —

Sad, but true. I can relate more now to the patients I had in the past who said a shower wore them out for the day.

It kills me to see so many in the field mock those who truly have it. I may be able to put small amounts of food in my system but not if I also have to prepare it and clean up afterwards.
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rvallee said:
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.
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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.
 
Doctors like to consider themselves some of the biggest smartest toughest truth tellers in this world. And in fairness they often do have to deal with and tell patients some pretty harsh truths.

But they also squeal and whine louder than anybody when they get told some hard truths about themselves.
 
[Trigger warning on the linked post, redacted in below quotes.] A couple of doctors/clinicians responding in this thread posted by a young doctor. Eg —

Initial said:
I am a medical doctor, 29 years old, male. I can say with certainty that this is the most serious disease that exists on planet Earth. If this disease were deadly, then it would not be the worst disease. Precisely because it is not fatal and because the patient suffers terrible symptoms […] At the beginning of the disease I was mild, I could work, train, go out, but I was constantly tired and had mild PEM after exertion. As time went on that fatigue and PEM got worse and worse, so I'm currently in bed 90% of the time. […] Because of this disease, I lost my job, my girlfriend, my friends, my life
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In reply

I am also a doctor and we didn't even cover it. Post-viral fatigue from EBV was mentioned, but nothing about how devastating CFS/ME can be.
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continuing…

I am a surgeon with this same issue. As a doctor I have seen most diseases and illnesses and this is indeed one of the absolute worst. Most cancers, MS, heart attacks, most strokes, all more manageable than this terrible illness. There are studies that show quality of life with CFS/ME is worse than stage 4 cancer and multiple sclerosis. […] There is some evidence that this disease is heritable and I am so terrified my children will get this god forsaken illness. I wish I would have never met my wife because I have destroyed the lives of my wife (who is an angel and doesn't deserve this), and likely my children who could easily end up with this same illness, which is worse then death. It's all very difficult.
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Separately (and happily using "ME/CFS").

I am an RN with ME/CFS acquired from Covid in 2020 and I understand exactly how you feel. This is one of the most cruel deaseses on the planet. I have manged to maintain myself in the moderate category by strictly pacing and by using some medication, but nothing miraculous. I was actually able to get my nursing degree with this deasese as well, but it was not easy. I am currently able to work 2 days a week at a job where I walk less then 1000 steps per day. I believe there is hope for ME/CFS and it's a desease that IS somewhat reveseable with the right treatment (that only issue is we don't know what that treatment is yet) but I believe there is hope.
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rvallee said:
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?
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Thanks rvallee. S4ME is brought up a couple of times. Here's one:

I think when major papers drop, with significant findings they'll be posted here or in r/cfs but beyond Reddit the main scientific discussion is at Science For ME. It is the largest global forum of patients, researchers, caregivers and advocates and covers both research and medico-political aspects.

There is a wealth of experience and strong scientific literacy. Eg the principal investigator of DecodeME I mentioned above is there (Prof Chris Ponting), along with researchers like Chris Armstrong, Rob Phair and many others.

Every week a summary of the major research is posted, eg this week. While often the discussion can be very technical there are multiple members who express delight in seeing the discussions happening, even if they don't themselves have the relevant scientific background, eg this comment. Nevertheless the patient-experts many of whom have decades of lived experience have contributed immensely to the researchers' understanding.

Other than that there are social media hashtags to follow, eg this one on Bluesky. And some excellent blogs such as ME/CFS Skeptic. HealthRising is another blog that is very readable, eg the muscle findings from Jan 2024.
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rvallee said:
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?
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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.
 
Arnie Pye said:
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.
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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.
 
forestglip said:
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.
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If you use Firefox browser they have an Extension you can install called Old Reddit Redirect that loads the page in the old.reddit format automatically. Had it installed for years.

Also available for Chrome browser.
 
I didn't encounter it in 30 years, that I can recall. However, I did have nursing colleagues who had recovered from it well enough to return to work, so it was theoretically on my radar to recognise. You can imagine there would be specialties that wouldn't encounter it: pathologist or neonatologist might be examples. Perhaps gerontologists and oncologists might also rarely discriminate it in their patients, especially if not previously diagnosed, as it might be conflated with frailty or cancer fatigue or chemo-brain fog.
 
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