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

Hubris said:
I often quote POTS to show how dysfunctional medicine is. It's an illness with objective symptoms and a diagnostic test, yet nobody takes it seriously.

I think doctors use some kind of misguided instinctual understanding of the nature of illness to decide if an illness is "real" or not. They don't necessarily care about biomarkers or objective symptoms. I'll cite an anecdote that i think is relevant:

Over the years, i saw many neurologists, many of them being considered really high level. Almost all of them consider ME to be a fake illness, not to be taken seriously. They didn't care that i had POTS either. But for some reason, they took my sleep disorder (which is an ME symptom) seriously. My sleep cycle lasts 25 hours instead of 24 so i keep shifting forward infinitely, and half of my life I'm sleeping during the day. For some reason, neurologists can tell that this is a "real" symptom. From my perspective, i don't really get why. If my fatigue or cognitive impairment is not real, cant they just claim that i sleep like this because i have a poor sleep hygiene or something? Or a psychological disorder? I would think so, but for some reason they don't do that. From my POV, there is no difference between this symptom and the others (aside from it being far less disabling), but apparently for doctors there is a world of difference.

Despite having no biomarker or objective symptoms, It is a rare illness that neurologists take seriously https://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=73267 they even made a drug for it!
For me, it's like the least disabling symptom i have and i really can't see why they would take this one seriously and not the others.

What I'm saying here, is that it's not as simple as ME not being taken seriously because it lacks a biomarker or objective symptoms. We should dig deeper into this and figure what is really going on. Maybe there is a way we could have a dialogue with doctors, as unlikely as that sounds. I find that the ME charities have never tried to dig deeper into this sort of thing and restricted themselves to very surface level thinking. There is never any real constructive dialogue, half of the time they are yelling "take us seriously!", the other half sponsoring quack treatments or very low level researchers. I feel that the people leading our charities do not have any real insight or understanding as to why doctors don't take us seriously (not to mention how quality research is done but that's another topic)
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I know in marketing there is the need to get people to relate eg if giving a figure giving something ballpark to give a sense of what that magnitude means.

I hate to say it but women feeling awful or collapsing is just a bigotry people are happy to write off and not try to imagine could happen to them. I think it’s that simple for many. Having said that the sleep thing has been probably the aspect that has made me most rejected and unacceptable to laypersons and medics but those weren’t neurologists

Maybe the treatment (I wasn’t aware there was one) helps as it means they can be in that easier ‘do their job mode’ where there is a drug and then a follow up and dosing etc

one weird thing to note is that I was taught that most people’s circadian rhythm is nearer to 25 than 24hrs. That’s obviously different to the sleep disorder in symptoms, reality and almost certainly measurable somewhere in your body, but I’m intrigued by what it is they think they can see and if/how that actually distinguishes between the two.
 
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rvallee said:
Generic practitioner would actually be a good term for anyone trained in BPS stuff. It's so generic that it means nothing and applies to everything.
I want to know why bps model of healthcare is being foisted on the UK public without our consent, and what it would take for us to be able to simply withdraw our consent for it, and stop ALL the gaslighting nonsense which is besetting every single healthcare appt and stressing patients out - not to mention causing misdiagnoses, delayed treatment and sometimes deaths.
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Hubris said:
What I'm saying here, is that it's not as simple as ME not being taken seriously because it lacks a biomarker or objective symptoms. We should dig deeper into this and figure what is really going on.
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That's something I said several times over the years, and I really don't know what to do with this. Our problems aren't unique, they are part of far larger and more fundamental issues within the profession. I don't think we can make much progress without either addressing those, reforming medicine from the ground up, should be easy peasy, or somehow getting the kind of "off the black list" that peptic ulcers got by being able to come up with both a comprehensive theory and safe and effective treatment at the same time. Which is almost guaranteed to not happen for us, it's way too complex.

I see those issues everywhere and they are so bizarre, they almost amount to calling the profession negligent and incompetent, and frankly it seems right and accurate. They are doing poorly, progressing slower than all the other expert professions means they have gotten way behind everyone else, while moving slower still as complexity builds up. But they can't handle this, any affront on their expertise, even accurate, is usually met with doubling down even stronger on being wrong. It's flexing power just because they can most of the time, but they really can most of the time so what are we supposed to do?

That's why I say often that our way out is almost certainly through AI. We can't get through the humans because those issues are found in human nature, they are everywhere. They are basically the medical equivalent of "I'm just doing my job", where most of the time not doing so would cause them personal problems, so they just comply with the orders, doing the wrong thing, because there is no alternative. That's found everywhere, absolutely not unique or particular to medicine. And the higher you go, the more political it gets, so no hope there. We've seen public health and medical leaders supporting eugenics, if not proudly at least without any protest. No help there.

We're dealing with politics, and everywhere medicine doesn't have sound biological science, it's all politics all the time. Except when it's ideology, so basically just different politics. We have a problem with how human nature works, and how easily it is to dismiss other people when they aren't our responsibility. Especially people who are struggling, who can't work their weight. Our hunter-gatherer ancestors used to leave those people behind, now we have institutions doing that for us, except no one's actually going anywhere.
 
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Merged thread

Interesting Reddit Threads

This is a general thread for people to post Reddit posts/threads, preferably related to ME or similar misunderstood conditions.

I'll start:
Code: 
https://old.reddit.com/r/ChronicIllness/comments/14fo630/i_tried_a_strategy_for_getting_testmedications/jp6szq0/
 
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Code: 
https://old.reddit.com/r/JuniorDoctorsUK/comments/14zx7um/pulse_row_reignites_nice_mecfs_guidance_as/js0m6t5/
Apparently most of us are just subconscious malingerers.
Some people suffer greatly with CFS but all these subjective symptom syndromes (CFS, Fibro, conversion, NES) attract a significant number of patients who have adopted the sick role for subconscious secondary gain.
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DigitalDrifter said:
Code: 
https://old.reddit.com/r/JuniorDoctorsUK/comments/14zx7um/pulse_row_reignites_nice_mecfs_guidance_as/js0m6t5/
Apparently most of us are just subconscious malingerers.
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You have to be really dumb as a malingerer to choose ME, nobody will ever give you disability or any of the secondary benefits you are looking for. Even if it's "subconscious", you would realize it easily. If you were "subconsciously" trying to get fat, you wouldn't stuff yourself with vegetables would you? You'd be eating things that make you fat.


Doctors say these things to justify the neglect more than anything. "Most patients are malingerers, some aren't but they just slipped through our fingers damnit "
 
Australia does not have a good track record on ME, and apparently we are doing everything we can to keep it that way. :grumpy:

But the old 2002 Australian guidelines did get one thing very right. Literally the very last paragraph of the main body of the guidelines (Medicolegal Issues S46-7):

In the absence of evidence of malingering, speculative judgements about unconscious motivation should be avoided. The psychoanalytic concept of “secondary gain” has been misused in medicolegal settings and does not rest on a solid empirical base. In evaluating patients with CFS, hypothesised secondary gains should be weighed against manifest secondary losses. The notion of “abnormal illness behaviour” is contentious, and the term should not be used as a diagnostic label.​
 
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Code: 
https://old.reddit.com/r/doctorsUK/comments/15di7df/downplaying_a_patients_symptoms_based_on_gender/
Interesting thread exposes gender bias and how discrimination toward men is not more prevalent but more socially acceptable.
 
DigitalDrifter said:
Code: 
https://old.reddit.com/r/doctorsUK/comments/15di7df/downplaying_a_patients_symptoms_based_on_gender/
Interesting thread exposes gender bias and how discrimination toward men is not more prevalent but more socially acceptable.
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That’s not really what the thread does at all. In summary, it best serves to show that all kinds of prejudices are at work when symptoms are dismissed, and that at least some doctors are getting better at recognising those prejudices. Which is laudable.

One contributor suggests that clinicians are more sympathetic to persons of their own sex. Maybe. But there are clearly a host of factors at work which make some doctors empathetic and some more dismissive, and gender almost certainly plays far less of a role than the attitudes inculcated in clinical specialisation.
 
Code: 
https://www.reddit.com/r/illnessfakers/comments/15mbv7m/jessi_is_experiencing_medical_burnout/jvi71t1/?context=10000

Med student shares their astonishingly ignorant views of ME/CFS:

Chronically ill peers…and ancestors. Huh? A study publication in The Lancet in a 2016 concluded there was no increased risk of non-suicide deaths (natural/health related) in patients diagnosed with CFS compared to the general population. Mood disorders however were shown to be significantly increased in this population. Suicide is increased in this population too.

This isn’t necessarily surprising though. Many people “diagnosed with CFS” have mental health conditions which cause them to continually seek out care. They doctor shop until someone will validate their false narrative. I think the increased suicide rate is more likely correlated to the increased rates of mental health conditions. The CFS diagnosis is simply a byproduct of Munchausens*. There is no test for “fatigue” or “pain” which make CFS one of the easiest diagnoses to lie your way into receiving. The doctor relies on the information provided by the patient.
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Research indicates that about a third of chronic fatigue syndrome diagnoses are either fictitious or psychosomatic. This is why we see such a high rates of comorbid mental illness that usually presents prior to the onset of the fatigue. Chronic fatigue system is diagnosed based on patient history and interview. Both are provided by the patient. There is no diagnostic testing currently available for confirmation.

We have been trained to treat patients based on what is in front of us. We are trained to believe patients, especially regarding pain. If a patient says her pain is a 7 out of 10, who am I go invalidate her? Pain is relative to each person.

My frustration is that most, let’s say 85%, of diagnostic criteria for CFS overlap perfectly with the criteria for Major Depression. A CFS diagnosis is used as a miscellaneous bucket when nothing else fits.

In my experience, true clinical CFS is very rare. It usually involves neurodegeneration and spontaneous seizures. It can be life threatening. We learn more about the nervous system, biochemistry of fatigue, and perception of pain every year. And what we’ve learned is that most CFS patients have undiagnosed major depression, undiagnosed disordered thought type disorders (such as anorexia), PTSD, or reactive attachment disorder. We know now that mental illness isn’t only mental. Biochemical disruption in the brain ripples through the whole body. Causing symptoms like fatigue. We know now that emotional trauma has serious epigenetic consequences in the body. It causes a snowball of psychosomatic issues.

Lyme disease can also appear identical to severe CFS. Celiac can appear like CFS. Long Covid can present like CFS.

For these reasons, you’ll find younger physicians diagnosis CFS less and less. Because it was evolving into the “junk drawer” of diagnoses for stuff that doesn’t fit elsewhere. Fatigue is a symptom, not a syndrome.
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Edit: * Note the author here is on a subreddit discussing subjects that almost certainly do have Munchausen's, which is important context for their first comment.
 
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Funny that most of what they say is right. Here's a heavily edited version:
Chronically ill peers…and ancestors. Huh? A study publication in The Lancet in a 2016 concluded there was no increased risk of non-suicide deaths (natural/health related) in patients diagnosed with CFS compared to the general population. Mood disorders however were shown to be significantly increased in this population. Suicide is increased in this population too.

This isn’t necessarily surprising though. Many people “diagnosed with CFS” have mental health conditions which cause them to continually seek out care....I think the increased suicide rate is more likely correlated to the increased rates of mental health conditions....There is no test for “fatigue” or “pain”...The doctor relies on the information provided by the patient.

...This is why we see such a high rates of comorbid mental illness that usually presents prior to the onset of the fatigue. Chronic fatigue system is diagnosed based on patient history and interview. Both are provided by the patient. There is no diagnostic testing currently available for confirmation.

...A CFS diagnosis is used as a miscellaneous bucket when nothing else fits.

Lyme disease can also appear identical to severe CFS. Celiac can appear like CFS. Long Covid can present like CFS.

...Because it was evolving into the “junk drawer” of diagnoses for stuff that doesn’t fit elsewhere. Fatigue is a symptom, not a syndrome.
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While the premises are right, the conclusion is definitely wrong. But they correctly state that the lack of a test and usage of loose diagnostic criteria (not requiring PEM) likely leads to many people, including some people with mental disorders, being misdiagnosed with ME.
 
Literally all of the above are things 1) medicine is responsible for, 2) that we have been raising forever and 3) have been constantly vilified for saying even though they're simple and obvious.

And they still blame us anyway. Really disturbing, especially that they see the problem, they just can't imagine medicine bearing any blame whatsoever. Even though it's blatant.
 
Pilk said:
Med student shares their astonishingly ignorant views of ME/CFS:
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That comment has now been deleted. I would have liked to ask them for evidence of their claim that 1/3 of CFS is factitious or psychosomatic. Their usual excuses are appeals to authority and appeals to popularity, and perhaps a few studies where there were so few participants that no conclusion could be made.
 
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