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

I did say "perhaps"! And also Fluge and Mella are paragons.

Speaking of cancer, for interest here's a counterexample with a rare condition: where most GPs will never see a case of osteosarcoma in their entire career, but I see a new case every 3-4 weeks.
 
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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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.
 
rvallee said:
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.
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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/
 
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SNT Gatchaman said:
I didn't encounter it in 30 years
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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.
 
alex3619 said:
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.
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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)
 
Yann04 said:
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.
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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! :)
 
ahimsa said:
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/)
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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



 
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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. :rolleyes:
Fad: definition said:
an intense and widely shared enthusiasm for something, especially one that is short-lived and without basis in the object's qualities; a craze
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Yann04 said:
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.
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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.
 
Jonathan Edwards said:
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.
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But thats a fad amongst the medical profession. Not the patients. Basically waxing and waning popularity of different diagnostic lables and mechanistic assumptions.
 
voner said:
Jonathan, as a aside, what is your definition of POTS?
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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.
 
Came across this series from a month back from an NHS orthopaedic surgeon and departmental clinical director. I won't put the quotes behind a spoiler as I think people are familiar with this thread and what we're up against, but worth recording.

Caution: ahead there be dragons

‘ME/CFS’ is absolutely a psychosocial disorder. Hill I’m prepared to die on.
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All secondary, not primary. Psychosocial disorders are absolutely capable of causing profound physiological changes. ‘Mind over matter’. cf anorexia nervosa. The psyche is incredibly strong. The #1 feature of ME/CFS is the manipulative, obsessive need for sympathy/attention/drama. Flabbergasted ANY doctor with frontline clinical experience is taken in by these people.
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Prejudice? It’s the truth. ‘ME/CFS’ will NEVER be cured by the ‘medical model’. Happy for you to save this and come back to me at any time in future to remind me I was wrong. Sufferers who recover do so spontaneously without antibiotics, some fancy immunotherapy or wonder drug. They are left with no physiological sequelae. Idea that modern medicine and science are missing some basic pathology that explains ‘ME/CFS’ as well as ‘Long Covid’, Chronic Lyme etc. linking all the symptomatology together is absurd. Whereas realising they are ALL psychosocial disorders makes sense. Especially explains how some 80% are female. Cue frothing at mouth for being sexist but it’s FACT female of species is more prone to these disorders. Anorexia nervosa sufferers are almost all women.
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Sheer nonsense. All of it. Regrettably much is now seen as settled science amongst the ‘ME/CFS’ crowd and you cannot reason your way out. Yes, I don’t believe ‘ME/CFS’ is a physical illness. Yes, I think it is psychosocial in origin. Everything else about it is secondary, not the primary cause. Yes, I’m quite dogmatic about it.
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I loved my neurologist friend - he took all my crazies as an orthopaedic surgeon. Thankfully not that many as compared to some specialties, but there was always one on the boil at any one time. We were a triumvirate with an excellent clinical psychologist.
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To my mind it is barn door mass hysteria/delusion with a bewildering myriad of SECONDARY symptoms / disorders. It is no surprise these encompass autonomic dysfunction and even a few physiological abnormalities. Such is the power of the psyche over the body. These are learned responses, not of primary origin. Problem is the psychology of ‘ME/CFS’ is complex and deep seated. Incredibly difficult to reverse. cf anorexia nervosa. How is it that people do that to themselves? (AN). To rest of us it is inexplicable. AN has a dismal prognosis. Why? How?

I’m not a psychologist / psychiatrist so I have no clue how a deeply entrenched psychosocial disorder should be treated. What would work best. I DO NOT have to be either to recognise that ‘ME/CFS’ is NOT a physical illness. Treatment of ‘ME/CFS’ by medical model will never work. Never. Bookmark this and come back to me at ANY time to show me I was wrong.
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Are you sure the 75% who disclose an awful experience with medical treatment by a physician are reliable witnesses? See, as clinical director of a large hospital surgery department it fell to me to oversee complaints. I was regularly stunned by how patients get things wrong.
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Link | Link | Link | Link

(As invited, I have indeed saved those comments and look forward to showing him he was wrong at some point in the future.)
 
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