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

[Mary]

Once a Death Sentence, This Heart Condition Is Finally Treatable​

Okay - the subject of this article, cardiac amyloidosis, may be of interest to a small subset of PR members, but that's not why I'm posting it. What I found fascinating was this portion of the article which I think may help explain the medical profession's willful ignorance about ME/CFS:

For decades, cardiac amyloidosis was cast aside as a rare disease. Early signs include carpal tunnel syndrome, a narrowing of the spine and a rupture of the biceps tendon, as amyloid plaques accumulate across the body. 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 that's how it works - we get a drug, supplement, anything, which can actually treat ME/CFS, maybe we'll finally get some recognition and respect, and, hopefully, help. But since doctors are unable to do anything for us, they have no incentive to learn about ME/CFS or to even believe it's real. It really doesn't make any sense - you would think they would want to learn anyways, but apparently an inability to help patients is a disincentive to learn about what's actually going on with them. And the default response to what they don't know about is, of course, it's all in your head.

 

[Viala]

Yeah explosion in recognition. Effective treatments meaning drugs, meaning doctors educated by pharmaceutical representatives or reading pharma sponsored medical articles advertising drugs, because they need a lot of diagnoses to sell drugs, now they connect the dots. How gracious. Goes well with a theory that ME/CFS will become popular when corporations will be able to make money off of it.

There is gaslighting here, this 'little incentive cause they are helpless' is such a bs, they don't believe in a disease because pharma big boy didn't tell them to, so they treat patients like hypochondriacs or worse, even when patients are connecting the dots for them and bringing them printed medical articles to get a proper diagnosis. Someone is whitewashing medical mistreatment crimes here.

 

[Mary]

@Viala - I think you make some very good points!

But it still was a little jarring to me to read the NY Times state so openly that once a treatment was available, suddenly doctors would become aware of the condition - it was an open acknowledgement of just how poor or lacking medical education is.

Though the article made it sound like doctors didn’t want to learn about something if there was no way to treat it.

And you’re right, most of that education is now being done by pharmaceutical companies selling their drugs - the doctors will learn about a medical condition once the pharmaceutical reps start coming around.

 

[southwestforests]

Related content:
Two things
Have this from my health care provider's organization,
granted, it has a shed the best light on the thing point of view,

Diagnosis Limbo? What Happens When Doctors Don’t Know What’s Wrong
January 29, 2024

https://livehealthy.muhealth.org/st...at-happens-when-doctors-dont-know-whats-wrong

It mentions what I have, what we have,

Why It’s Hard to Diagnose Some Diseases

Not all conditions and disorders are easy to spot. A condition may be hard to diagnose because:

Some conditions don’t have good diagnostic criteria: Some conditions and diseases, such as fibromyalgia or chronic fatigue syndrome, don’t fit into a neat little box. Imaging, blood tests or other definitive criteria can’t identify them.

Diseases don’t follow a textbook: The same condition doesn’t always look the same in different people. How a disease presents can change depending on your age, gender, genetic makeup and other chronic conditions.

The condition may be rare: Rare diseases are challenging to diagnose, especially in children, who comprise half of the 30 million people in the United States with a rare disease. It may take six to eight years for children to be diagnosed with a rare disease because of limited knowledge and clinical evidence related to that disease.

When Doctors Don't Know What's Wrong
How to leverage your doctor's biases in your favor.

Posted October 26, 2009

https://www.psychologytoday.com/us/...rld/200910/when-doctors-dont-know-whats-wrong

The first patient I ever saw as a first year resident came in with a litany of complaints, not one of which I remember today except for one—he had headaches. The reason I remember he had headaches isn't because I spent so much time discussing them but rather the opposite: at the time I knew next to nothing about headaches and somehow managed to end the visit without ever addressing his at all, even though they were the primary reason he'd come to see me.

Then I rotated on a neurology service and actually learned quite a lot about headaches. Then when my patient came back to see me a few months later, I distinctly remember at that point not only being interested in his headaches but actually being excited to discuss them.

I often find myself thinking back to that experience when I'm confronted with a patient who has a complaint I can't figure out, and I thought it would be useful to describe the various reactions doctors have to patients in general when they can't figure out what's wrong, why they have those reactions, and what you can do as a patient to improve your chances in such situations of getting good care.

Remainder of article has a detailed look at doctor mindset and behavior and is well worth reading.

 

[hapl808]

hough the article made it sound like doctors didn’t want to learn about something if there was no way to treat it.

I think it's both.

Doctors don't like learning new stuff so unless a cute sorority girl pharma rep tells them over a steak dinner, how would they possibly insert new information into their brain? Sorry, my respect for doctors is pretty low at this point.

In addition, many doctors like feeling important and respected - which is close to the opposite of helpless. They often got into the field because it's one of the most respected and valued positions you can hold in society. Admitting that they can't help is bad - even worse is admitting they don't understand something and can't help.

Even with diseases we accept are not treatable (some late stage cancers, etc), our system is set up to tell people not to 'give up' and doctors will put patients through all sorts of end-of-life horrors just so they can all feel like they're doing something. It's anathema to our system to say, "I'm sorry, there's not much I can do other than try to make you more comfortable and improve the QoL you have left."

Michael Crichton talked about it in one of his non-fiction books when he was still in medical training and had his first encounter with a terminal patient. Had a really nice discussion and interaction - then he shamefully admitted he said something 'positive and encouraging' when leaving, and he said he could just read the disappointment in his patient's face. (Lots of reasons Crichton went to Harvard Medical and decided not to become a doctor.)

 

[Viala]

But it still was a little jarring to me to read the NY Times state so openly that once a treatment was available, suddenly doctors would become aware of the condition - it was an open acknowledgement of just how poor or lacking medical education is.

Yeah they just said the quiet part out loud and powdered it with some alleged good intentions.

There's obvious conflict of interest. Conventional medicine is in a very bad condition if doctors learn from businessmen and trust them more than real people with actual diseases. Their sudden change of heart is a glaring sign of corruption. It's fraud, all of it.

 

[Oliver3]

It's like being forced to comply with mobsters.
The type of people attracted to medicine also are not always the type of people who should be involved in medicine. That goes from the floorboards up to the managerial level

 

[Rufous McKinney]

Medicine is not just about prescribing a pharmaceutical pill. or "cut and cure". Or: apply poison.

But it's become that, and in the US, the insurers exist to restrict and control. So we diverted health dollars to restriction and control activities.

That obviously kills off any creativity or nuance, that most doctors might enjoy trying out, but the system breaks them.

 

[Rufous McKinney]

medicine also are not always the type of people who should be involved in medicine.

that part I know about, because I took courses with Pre Med students. I know exactly. I was younger then, and for instance, you'd never want to date one of these "students". Let alone have them lay a hand on you. I know they are not ALL the examples, but were representative enough.

 

[Oliver3]

that part I know about, because I took courses with Pre Med students. I know exactly. I was younger then, and for instance, you'd never want to date one of these "students". Let alone have them lay a hand on you. I know they are not ALL the examples, but were representative enough.

I agree. Its a bit like there are good politicians in it for the right reasons.. but then there's the rest.
Honestly, the sooner we have robots looking after us the better ( I'm only half joking)

 

[BrightCandle]

One of the bigger problems of recognition coming with a treatment is that the lack of recognition is causing suppression of research and funding. The medical field are the people everyone else looks to regarding diseases and whether people should be believed or not and their disbelief has held back science in many conditions. Their prejudice against those with ME/CFS is the worst of all the conditions, their dismissing language is the worst against it so not surprisingly they have suppressed progress in the disease the most.

I think if the public understood just how badly medicine had messed up this and so many other diseases, the level of prejudice that was being practised they might treat them more like the police than angels and trust the researchers instead.

 

[southwestforests]

Honestly, the sooner we have robots looking after us the better ( I'm only half joking)

What comes to my mind is that those robots will have their origin within the same humanity from which the previously mentioned med students are drawn.

 

[Oliver3]

What comes to my mind is that those robots will have their origin within the same humanity from which the previously mentioned med students are drawn.

Yeah for sure, but scandals will eventually lead to them being proper little seraphic beings!

 

[Oliver3]

One of the bigger problems of recognition coming with a treatment is that the lack of recognition is causing suppression of research and funding. The medical field are the people everyone else looks to regarding diseases and whether people should be believed or not and their disbelief has held back science in many conditions. Their prejudice against those with ME/CFS is the worst of all the conditions, their dismissing language is the worst against it so not surprisingly they have suppressed progress in the disease the most.

I think if the public understood just how badly medicine had messed up this and so many other diseases, the level of prejudice that was being practised they might treat them more like the police than angels and trust the researchers instead.

I agree. Also once you lift the lid on cfs and it's relationship to medicine, you start to see behind the curtain you see how goddammit toxic tgis world us.
Like ' ths miracle' of modern farming. I have a friend who got an agricultural degree here in the UK.
They're indoctrinated to believe pesticides are harmless, haven't destroyed bee colonies abd have no effect on the human body.
Meanwhile, anyone with a normal I..q has joined the dots years ago.
But you can't argue with them. They're ' right'.

One thing that really grinds me off is that regenerative medicine is largely relegated to Panama.
Just so the pharmaceutical s and the insurance industry have endless cash cows.
Sane with the oil industries.
It's essential apparently. For wars and plastic in our blood yes!

Maybe we should start our own free state!

I'm hoping China forces the west into a medical arms race with regenerative medicine

 

[Oliver3]

One of the bigger problems of recognition coming with a treatment is that the lack of recognition is causing suppression of research and funding. The medical field are the people everyone else looks to regarding diseases and whether people should be believed or not and their disbelief has held back science in many conditions. Their prejudice against those with ME/CFS is the worst of all the conditions, their dismissing language is the worst against it so not surprisingly they have suppressed progress in the disease the most.

I think if the public understood just how badly medicine had messed up this and so many other diseases, the levelsad t hin of prejudice that was being practised they might treat them more like the police than angels and trust the researchers instead.

Sad thing is, the researchers are mostly compromised too as they have to work within structures that pay for their livelihoods but are based around profit abd not safety or health

 

[bad1080]

"i can't help you therefore it must not exist!" -gods in white

 

[kushami]

I'm not sure that reasoning makes sense: Cardiac amyloidosis is hard to diagnose. And there was no incentive to diagnose it because there was no treatment.

But if the patient was undiagnosed, how could the doctor know that there was no treatment for their condition?

 

[kushami]

I do agree that once a treatment becomes available, there will be articles and publicity about it, and this may catch some doctors' attention and diagnosis rates may improve.

 

[bad1080]

But if the patient was undiagnosed, how could the doctor know that there was no treatment for their condition?

"Early signs include carpal tunnel syndrome, a narrowing of the spine and a rupture of the biceps tendon"

i bet those were diagnosed individually but treating those didn't improve the patient's underlying condition. that's where they start telling you things we all heard before like "anxiety" or "it's all in your head"...

 

[SWAlexander]

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

Their Statement:
State medical boards handle physician licensing, investigate complaints, and take disciplinary actions, while the Federation of State Medical Boards (FSMB) supports these state boards by providing policy, education, and services to enhance patient safety and the integrity of the medical profession.

So, if the primary purpose of a US medical board is to protect the public from incompetent, unprofessional, or unlawful medical practice by licensing physicians, enforcing standards, and disciplining those who violate regulations, I ask how educated is US medical board?

https://www.fsmb.org/u.s.-medical-r...-the-united-states/about-physician-discipline

and

https://www.abms.org/