Once a death sentence, this heart condition is finally treatable; NY Times, Aug. 8, 2025; THIS MAY HELP EXPLAIN DOCTORS' IGNORANCE OF ME/CFS

[Rufous McKinney]

Isn’t this the time to bring our questions and complaints to the US Medical Board?

I am admitting that my husband and I both experienced serious mishandling of dental issues when we had this terrible HMO dental plan. The dental office was ripping off customers, lying, diagnosing everybody with gum disease, scheduling 10,000$ procedures nobody can afford. I watched people breaking down in the office lobby. I proved they lied about my adult daughter, as I sent her for second opinions. They simply lie and tell everyone to hand over $10,000.

It was extremely terrible, and at some. point in time, I literally left the chair and fled the office and never returned. They'd lied and ripped me off, yet again (over a crown). I had four meetings with the office manager to obtain the correct crown, and correct did not happen. Yes, the office is not run by the dentist.

Bottom line: we ultimately never filed any formal complaints against these people and shame on us for having been so traumatized, we simply could not cope at all any longer. I recall seeing the office building recently, and yes, PTSD happened.

 

[SWAlexander]

yes, PTSD happened.

Yes, flashbacks are like a merry-go-round, triggering PTSD until we are vindicated. Though the alarm signal remains on forever.

 

[SWAlexander]

And the default response to what they don't know about is, of course, it's all in your head.

Oh yes, this is something I had to find out for myself, especially in Germany. At least now I know, and I can better prepare myself before seeing another doctor.

Unlike the U.S., Germany has no direct equivalent to the American Medical Board. What I discovered is this: the German State Chambers of Physicians do not regularly revalidate all licensed doctors through systematic testing of updated knowledge. Instead, they rely on Continuing Medical Education (CME), known as Fortbildung, and a model of self-regulation. While participation in CME is mandatory under State Chamber regulations and is common across the EU, it does not involve the kind of structured, recurring assessments seen in some other countries.

 

[Artemisia]

But with little awareness of the condition, it was difficult for doctors to connect the dots.

And there was little incentive to do so, Dr. Kittleson said, because without any treatments for cardiac amyloidosis, they could only stand by and watch patients succumb to the disease. . . .

However, the turning point for cardiac amyloidosis was the development of effective treatments. With doctors now able to actually help patients, there was an “explosion in recognition,” Dr. Kittleson said.

So the NYT is saying that the vast majority of doctors have no or little intellectual curiosity and are conformists who cannot produce an original or creative thought. They're glorified automatons who prescribe a certain drug for a certain condition. They do as they're told.

I would be so embarrassed to read this if I were a doctor, but I'm sure many doctors would find nothing wrong at all with this.

 

[Artemisia]

we get a drug, supplement, anything, which can actually treat ME/CFS, maybe we'll finally get some recognition and respect, and, hopefully, help.

the market for such a drug would be sizable. Why isn't there more funding to research and develop a potential money maker?

 

[Rufous McKinney]

the German State Chambers of Physicians do not regularly revalidate all licensed doctors through systematic testing of updated knowledge.

I read California requires Continuing Education courses be taken every two years when they renew their licenses.

I also read the we have an issue with old age in doctors. The law has not been modified to deal with that potential problem

 

[hapl808]

So the NYT is saying that the vast majority of doctors have no or little intellectual curiosity and are conformists who cannot produce an original or creative thought. They're glorified automatons who prescribe a certain drug for a certain condition. They do as they're told.

I would be so embarrassed to read this if I were a doctor, but I'm sure many doctors would find nothing wrong at all with this.

100%

The rare self-aware doctors know this. They will flat out tell you their job is not to be innovative - that's what a PhD is supposed to be for, not an MD.

Most doctors, however, lack even a shred of self-awareness and consider themselves as close to divinity as humanly possible.

 

[Rufous McKinney]

They will flat out tell you their job is not to be innovative

if they started out with any creativity, the insurance industry in the United States will make sure to squelch that.

 

[SWAlexander]

old age in doctors

Unfortunately, my experiences with older doctors have generally not been very positive except for one: my endocrinologist in New Mexico. He took the time to explain the crucial role of the hypothalamic system in regulating the rest of the body, which gave me valuable insight into hormonal health and my adrenal insufficiency.

There were also two younger doctors who stood out for their attentiveness and perceptiveness. One was at Kaiser Permanente in California, around 2002. Unbeknownst to me, she had arrived at the hospital parking lot at the same time I did and observed me walking normally, until I reached the 20 steps leading up to her office. She was the first to ask a critical question: “Since when have you had difficulty climbing stairs?” I told her it had started after a high fever that lasted more than three weeks when I was six years old. She immediately referred me for a treadmill test and an EKG.
She also took my month-long diarrhea seriously, while others simply recommended dietary changes. She began by asking where I lived, and when I told her it was in a rural, country-like area, she immediately ordered tests and suggested I have my water supply tested as well. Both the stool and water (well water) samples came back positive for Clostridium difficile (C. diff).

The second young doctor was at a heart institute in Albuquerque in 2007, after I collapsed just four minutes into a treadmill test. He waited until his senior colleague had left the room before asking more probing, thoughtful questions. I had a strong impression that both of these younger doctors suspected I had post-polio syndrome, but for reasons unknown, neither mentioned it explicitly in their reports. Post-polio seems to be a dead-end subject in many medical settings. As one doctor put it, “There is no 100% marker,” only a clinical diagnosis.

In contrast, nearly every older doctor I saw dismissed my symptoms—insisting that I simply needed more exercise or implying that I just wasn’t trying hard enough.

 

[southwestforests]

https://myalgicencephalomyelitiscfstom.tumblr.com%2Fpost%2F786042826249158656

 

[Mary]

I also read the we have an issue with old age in doctors. The law has not been modified to deal with that potential problem

Actually the 2 doctors I've seen who actually knew/know anything about ME/CFS and believe it's real (how strange and awful we have to say that!) were/are both in their 70's. My first doctor died several years ago unfortunately. he kept up with research, had a private practice - no corporations involved - had treatment suggestions, took Medicare, he was exceedingly rare. And the 2nd doctor who I now see is not as thorough but he's something and is willing to work with me. It's just I have nothing to bring him - no real new research or treatment suggestions, but if something pops up, he would at least listen to me. And he has a private practice as well. I think almost any doctor who is basically owned by a corporation (and so many are now) probably will not be able to do anything for us. Their patient time is strictly calibrated, they're not encouraged to do research etc.

 

[SWAlexander]

@
[IMG alt="southwestforests"]https://forums.phoenixrising.me/data/avatars/m/38/38343.jpg?1566242745[/IMG]

southwestforests​

It happens all the time: when doctors reach the limits of their medical knowledge, they turn to psychology.

While I was on IV vancomycin and ciprofloxacin, my PICC line frequently got clogged with blood clots. Each time, I had to go to the hospital to have it flushed. On this occasion, I was so close to passing out that my friend had to drive me the 30 miles to the hospital.

Since I’d been there multiple times before, the specialist nurses recognized me and began the usual procedure. But this time, the attempt to clear the line with Alteplase didn’t work, and my blood pressure shot up to 196.

A doctor on duty was called in. When she arrived, the first thing she said was, “You should take lessons in mindfulness.”

My friend, sitting beside me, looked at me with wide eyes, probably wondering if I was going to jump up and choke her. I was too sick, too weak—otherwise, I just might have.

 

[southwestforests]

Reminds me of the time in 2009 when the mental health guy here in town said, "You're not bipolar, you've never been bipolar, you are autistic, here's why ..."

Went and told my Psychiatrist grad student over at MU Health's clinic, he said something along the lines of, "Well, let's look at that."
Went and got the supervising Psychiatrist,
They went back over my records and said, "Ya know, he's right. Let's stop the bipolar medication."

Went and told my grey haired physician at the now closed rural hospital and health clinic about that,
and he said, "Your insisting that you are not bipolar is proof you are bipolar because that's what bipolar people do."
And that's what went in my medical records.

Which then brings to mind November 2023 when I went to Urgent Care at the new MU doctor, physical therapy, & urgent care, clinic in our little town.
I was pretty sure I was having a reaction to the antibiotic I'd just a day or two ago started for a skin infection on my chest.
Doctor said "You would already be in the hospital if that was a drug reaction, you have covid"
Two in-clinic covid tests later he was still insisting I had covid even though tests were negative.
Showed I didn't have, had not had, covid.
Dr said "Those tests aren't the most reliable", so they did a send it off to a big lab, test.

I went home, trashed all the covid care papers, stopped the antibiotic.

Two days later I felt better enough to hand drill eight tiny holes in a model locomotive.
Finally remembered the drug fact insert papers are available online.
Looked up that antibiotic.
There were 8 things under heading of CONTACT DOCTOR IMMEDIATELY IF ANY OF THESE HAPPEN.
8 things on that list.
I had 4 going on, FOUR.

Oh, by the way, that send off to the big lab covid test also showed no covid, never had covid.

And those are not the only things of similar nature which have happened in my life.

 

[SWAlexander]

he was exceedingly rare

I'm so glad to hear that! My endocrinologist was also close to 70, - such a rare and special experience.

 

[SWAlexander]

"Your insisting that you are not bipolar is proof you are bipolar because that's what bipolar people do."

What was your reaction? Did you insist on having it taken off your record? I would have.

 

[southwestforests]

What was your reaction? Did you insist on having it taken off your record? I would have.

My reaction was while on the way out stopping at the front desk to schedule follow up I told the front desk gals to not schedule me again with that doctor.

Did not discover it was in my records until getting a printed copy of my records when the hospital and clinic went out of business in January 2020, eleven years later, and several years after that grey haired guy retired.

Had another grey haired doctor guy retire in 2024, he was a bit better.
His young gun replacement stated that he had never heard of ME/CFS when I asked him about it.

 

[Artemisia]

if they started out with any creativity, the insurance industry in the United States will make sure to squelch that.

Good point. Even the good doctors are in a stranglehold by big pharma and the insurance system.

 

[Rufous McKinney]

You should take lessons in mindfulness.”

the Take a Yoga Class flyer was posted on the wall inside my doctors office,

 

[Rufous McKinney]

“You should take lessons in mindfulness.”

We need to practice better retorts.

For instance, Yoga Classes and Mindfulness Courses; a fun retort there might be: "Ah, yes, I teach courses in Mindfulness on Saturdays at the local Recreation Center".

 

[Zebra]

The insight that @Mary shared in her original post is good information for us to have as patients.

Especially as patients with mysterious or difficult to diagnose medical conditions of various kinds.

By learning HOW DOCTORS THINK (there's an excellent book on this) we can prepare for our appointments accordingly.

Additionally, considering time constraints, influence of big pharma, insurance reimbursement challenges, etc., that's all good knowledge to have going into an appointment, and you may consider adjusting your expectations accordingly.

I wish healthcare providers met my lofty expectations of them, but they are human, and they work within a flawed system, and that makes things messy and complicated for all of the reasons others have observed in this thread.