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

And, like millions of people, I would simply stop using Reddit if they ever forced the new interface on us.

Horrible junk. I have no idea what they're thinking over there.

 

I mostly stopped when they changed the API so that you’re basically forced to use their add filled, junky mobile app.

I had a period when I started again when I discovered the cfs and covidlonghaulers space but after a while decided my time was better spent on S4ME.

Edit: Incase useful for anyone, you can look up reddit anonymously on mobile without being forced to use their app or singing in using this unofficial open source frontend
https://rdx.overdevs.com/

 

I wonder how much of that is from misdiagnosis or underdiagnosis, versus patients being unwilling to discuss with a doctor? The problems we can face with an ME/CFS diagnosis can be daunting, and for someone very sick the easiest solution might be simply to never mention it. However its also uncommon for doctors, in my experience I might add, to actively look for the diagnosis.

 

Also lack of access. Since I became very severe and can’t leave my bed, I interact less with the medical system than I did before I got ill, paradoxically.
(To be fair I had a knack for getting injured before I got ill ahah. Broke my foot and destroyed my knee in the 6 months before I got ME. But even before the injuries I had more contact with the medical system than I do now)

 

This is one of the reasons I try to bring information about ME/CFS to my doctors whenever I have an appointment. Since I'm still moderate I see doctors for a bunch of other health issues (from cardiac ablation to osteoporosis to UTIs). So I want to help as many doctors as possible to learn more about ME/CFS.

I've given a hard copy of the Concise Clinical Review from the Mayo Clinic Proceedings (8 pages) to several doctors. And I mention the CME course that's associated with that document. (MEAction has a page with links - https://www.meaction.net/cme/)

I know my cardiologist read this document because he mentioned something (can't remember exactly what) from the document in the follow-up notes for one of my visits! One of life's little victories!

 

Thank you ahimsa for doing that. Is this the 8 pg one you give from Mayo Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ?

There's also an 18 pg one Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management - Mayo Clinic Proceedings

 

Yes, that's the one, the Concise Review for Clinicians. I figured it was better to give doctors a fairly short document.

A lot of doctors won't take any information from me (those are the doctors I see once and never return). So I'm pretty happy when I find doctors who'll accept it.

 

Another thread on the Medicine sub about fad diseases with Long Covid and Chronic Lyme included. Not any about ME/CFS this time but related presentations like POTS.

 

POTS was described as a real issue, though. But there was a lot of confusion about what LC is - presumably none of them actually reads the definitions..

 

Did Doctors call AIDS a fad back in the day?

It’s hard for me to see how they justify it. Post-Lyme Syndrome has been documented basically ever since we discovered Lyme. Same as Post-COVID with COVID.

Is it a “fad” because they don’t know about it and it’s common? What is making doctors claim it’s a fad?

It’s kind of funny/bleak that an illness is a “fad” to the medical system precisely when the medical system fails to understand it. It shows how much they see themselves as the arbiters of truth. “Whatever we don’t understand and acknowledge is a fad”.

 

Also, literally the wrong use of the word fad. If it lasts for decades, by definition it can't be a fad, as it explicitly means short-lived. Quacks have been asserting for decades that no one will talk about those fads, without ever doing any self-reflection. Words and their meaning, so complicated. While they chastise us about misusing words, which is entirely their fault for abandoning millions of sick people.

 

I think things are a bit more complicated. 'Chronic Lyme' did become a fad in the sense that a number of private physicians used phoney tests to diagnose it on large numbers of people who almost certainly didn't have it.

I don't think doctors ever saw AIDS as a fad.

POTs is probably also a fad in that POT is probably a pretty normal finding and not a very useful basis for explaining why someone is ill. Again, there are private physicians who will diagnose POTS on almost everyone.

And so on.

 

But thats a fad amongst the medical profession. Not the patients. Basically waxing and waning popularity of different diagnostic lables and mechanistic assumptions.

 

Exactly, so 'fad' is more complicated.

With long Covid we seem to mostly have the fad of some doctors saying that it is a fad! Since it is so poorly defined that just seems to be saying that a load of people are skiving off work.

 

Jonathan, as a aside, what is your definition of POTS?

 

I don't try to define POTS but my understanding is that it is said to be a combination of POT as judged by some increase in heart rate on going upright and various symptoms that are supposed to go along with that. The problem for me is that I haven't seen much evidence for there being a special set of symptoms that go with POT.