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A protein that disrupts cells’ energy centers may be a culprit in CFS/ME

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Re: A protein that disrupts cells’ energy centers may be a culprit in CFS/ME

#101

Post by PaulKeeble »

maxehmookau wrote: post #68
hotdogscout wrote: post #62

Earlier quoted context omitted.

Unwillingness to admit they don't know what's happening, memes, resentment of criticism after malpractices. Any illness with primarily neurological symptoms have a history of medical malpractice and gaslighting. As early as 1944, an author in the Journal of Nervous and Mental Disease remarked: "The history of prefrontal lobotomy has been brief and stormy. Its course has been dotted with both violent opposition and wi…

> Unwillingness to admit they don't know what's happening, memes, resentment of criticism after malpractices. Let's assume that all doctors fit your description. (I don't agree, but let's go with it.) What's the alternative? I just can't accept that the vast majority of medical professionals are ignoring a potential cure or refusing to accept that one for ME may exist because it might hurt their egos.

Which is how it's managed to persist because no one believes the victims. This is going to have it's me too moment at some point and people are going to be horrified how widespread it really is.

Re: A protein that disrupts cells’ energy centers may be a culprit in CFS/ME

#102

Post by pygy_ »

circlefavshape wrote: post #28
aestetix wrote: post #14

There needs to be more research into this horrible disease. There are no yet confirmed biomarkers for it, so doctors dismiss patients as crazy or "making it up." Once there is a biomarker, perhaps like this protein, we can actually start testing treatments to see what works. The scary thing is that there seems to be a vicious path, of COVID->long COVID->ME/CFS. We're not sure what makes COVID evolve into long COVID,…

> doctors dismiss patients as crazy or "making it up" It's very easy to frame what doctors say like this, but in my experience at least that's not really what they're doing. A doctor is a classification machine - they take your symptoms as inputs and output a disease or a syndrome, hopefully with mitigation measures associated with it. When my wife had long covid for 3 years and doctors couldn't find anything wrong w…

Doctors behave as if medical knowledge was exhaustive, and infer that symptoms they don’t understand come from mental illness.

Most diseases have a psychological component, but patients are seldom referred to a psychiatrist for treating their heart ache when they get an infarction.

I just mentioned these findings (and others about autoimmunity against the satellite cells in dorsal root ganglia) to my mum, a doctor specialized in physical therapy and rehab. She went into retirement this year and many patients with ME/CFS.

Her reaction: "So fibromyalgia is real now. I have a hard time believing it… I spent my career fighting it."

Re: A protein that disrupts cells’ energy centers may be a culprit in CFS/ME

#103

Post by swores »

maxehmookau wrote: post #68
hotdogscout wrote: post #62

Earlier quoted context omitted.

Unwillingness to admit they don't know what's happening, memes, resentment of criticism after malpractices. Any illness with primarily neurological symptoms have a history of medical malpractice and gaslighting. As early as 1944, an author in the Journal of Nervous and Mental Disease remarked: "The history of prefrontal lobotomy has been brief and stormy. Its course has been dotted with both violent opposition and wi…

> Unwillingness to admit they don't know what's happening, memes, resentment of criticism after malpractices. Let's assume that all doctors fit your description. (I don't agree, but let's go with it.) What's the alternative? I just can't accept that the vast majority of medical professionals are ignoring a potential cure or refusing to accept that one for ME may exist because it might hurt their egos.

When it was first suggested that doctors/surgeons not washing hands & medical equipment between patients was harming patients, the majority of the medical community was up in arms calling the person who suggested it crazy and taking it as an attack on their professionalism.

Being medical professionals doesn't educate them away from having the same human flaws and cognitive biases that we all are capable of.

edit: I'd forgotten his name, it was Ignaz Semmelweis - see for example https://globalhandwashing.org/about-handwashing/history-of-h... or https://www.npr.org/sections/health-shots/2015/01/12/3756639...

Re: A protein that disrupts cells’ energy centers may be a culprit in CFS/ME

#104

Post by nradov »

PaulKeeble wrote: post #51
worrycue wrote: post #26

Earlier quoted context omitted.

> seemingly because politicians don't want to admit they fucked up How did politicians fuck up?

On ME/CFS they failed to fund any research for 70 years, on many occasions saying things that led to patients being abused and not believed by their families or doctors. This led to an attitude in the NIH that it wasn't worth funding research which persists still to this day. There has been no real funding for research out of the NIH since a brief spurt in the 1980s, even now what funding its allocated has mostly end…

The NIH puts significant funding into CFS. You can attend their public webinars to find out more.

https://www.ninds.nih.gov/about-ninds/who-we-are/advisory-co...

Re: A protein that disrupts cells’ energy centers may be a culprit in CFS/ME

#105

Post by opless »

FollowingTheDao wrote: post #88
hgomersall wrote: post #69

Earlier quoted context omitted.

The problem really is the stigma associated with mental illness as opposed to other kinds of illness. There are clearly mechanisms through which psychiatric effects manifest as real physical symptoms. If there's no obvious physiological cause to symptoms, working with it having a psychiatric basis seems perfectly reasonable. That doesn't mean we shouldn't try to understand more about it though.

Person with Schizoaffective Bipolar Disorder here: You know, doctors told me for years that the pain in my chest and back was all because of my mental illness, even though my brother and mother both needed spinal surgery for Anklysoing Spondylitis by the time they were 60. They dismissed me till I told them I wanted an MRI of my spine and chest and there it was, Non-radiographic axial spondyloarthritis, the precursor…

It is amazing how doctors continue to get away with gaslighting their patients because they refuse to believe them/look at family history, even to the point of not even attempting to rule those things out.

Re: A protein that disrupts cells’ energy centers may be a culprit in CFS/ME

#106

Post by swores »

hotdogscout wrote: post #20

I got long covid in Jan 2022 but after 9 months the neurological symptoms went away. I got sick just this week and the brain fog came back. Taking probiotics and supplements (omega 3, Multivitamins) and aspirin accelerates the process of getting better for me. I use n-back exercises from Brain Age Concentration Training as measure.

Im confused as to how you reached the conclusion that probiotics and those supplements speeds up the recovery, if your data points are 1) that took 9 months to recover and 2) that only happened in the last week. Is it that this week's brain fog has already gone away and the only difference you can think of is taking those things? In which case it's really nowhere near enough data points to draw conclusions.

Really, even for stuff like people saying "when I get a cold, I always recover faster if " is almost certainly either a placebo effect, or a random opinion that may or may not align with actual medical reality. Because not only does something like "a cold" or "a flu" or "covid" cover many variants rather than being a single identical type of infection, but even if they somehow knew that every time they had been infected by an identical form of a virus there are still so many variables such as how much of the virus initially breached their body, how much sleep they'd had in the lead up to and post- infection, what they'd been eating around the time, etc etc

Which is why we use studies looking at large numbers of people to figure out what does and doesn't help recovery rather than relying on anecdotes.

And in your case it seems like even less data than someone making a judgement based on potentially dozens of colds over their lifetime, it's just one or two data points?

(Although since probiotics and vitamin supplements won't, in typical doses, cause any harm except to your wallet, there's certainly no harm in taking them after a sickness - and even if there isn't a link between them having a physical impact in speeding up recovery, they could still or course work wonders as placebos too!)

Re: A protein that disrupts cells’ energy centers may be a culprit in CFS/ME

#107

Post by Invictus0 »

BobbyTables2 wrote: post #31
hliyan wrote: post #2

> the onset of ME/CFS is often associated with viral infections by patients I can personally attest to this. I was an extremely energetic person (shooting straight out of bed in the morning, never requiring daytime naps or rests) until one specific week in April of 1996 when I had what I thought was a mild flu. The post-flu fatigue never really went away. I became acclamatised to it over the years and rarely notice i…

Have you ever had an EKG done (for the heart)? I recently had a minor cold that caused some sort of heart inflammation and could have exacerbated/triggered a latent heart rhythm issue. About 1-3 times a minute while resting, my pulse wouldn’t follow the normal rhythm (PVCs — could feel it too while pressing finger into the neck, without EKG). It made me feel less energetic long after the inflammation subsided. I coul…

I don't think you mean to be disrespectful but your comment is almost the equivalent of "did you try taking iron supplements".

Re: A protein that disrupts cells’ energy centers may be a culprit in CFS/ME

#108

Post by francisofascii »

circlefavshape wrote: post #71
francisofascii wrote: post #58

Earlier quoted context omitted.

I am not buying that psychiatry actually helped. With this type of condition, some people get better over time. So those people would have gotten better anyway without the psychiatry. I also think the medical community should also rethink the notion some symptoms are psychosomatic. Why is that true? Because doctors can't spot the cause, so it must be psychosomatic? Maybe the cause is there but undetectable or not und…

I'm not saying psychiatry helped my wife - it didn't, because she didn't go to a psychiatrist. Eventually she got better, as you say. I think it's unlikely, however, that symptoms are never psychosomatic. If what we think had no effect on how we feel then the placebo effect wouldn't exist

Agreed. And the placebo effect is a good point.

Re: A protein that disrupts cells’ energy centers may be a culprit in CFS/ME

#109

Post by ksenzee »

circlefavshape wrote: post #28
aestetix wrote: post #14

There needs to be more research into this horrible disease. There are no yet confirmed biomarkers for it, so doctors dismiss patients as crazy or "making it up." Once there is a biomarker, perhaps like this protein, we can actually start testing treatments to see what works. The scary thing is that there seems to be a vicious path, of COVID->long COVID->ME/CFS. We're not sure what makes COVID evolve into long COVID,…

> doctors dismiss patients as crazy or "making it up" It's very easy to frame what doctors say like this, but in my experience at least that's not really what they're doing. A doctor is a classification machine - they take your symptoms as inputs and output a disease or a syndrome, hopefully with mitigation measures associated with it. When my wife had long covid for 3 years and doctors couldn't find anything wrong w…

No, your wife _was_ dismissed. Not only that, she was misdiagnosed. And she’s part of a huge patient population that gets misdiagnosed routinely. She has every right to be angry. Misdiagnosis is not benign. It sends you down the wrong path and costs you years.

Re: A protein that disrupts cells’ energy centers may be a culprit in CFS/ME

#110

Post by robbintt »

flyinglizard wrote: post #41
Steuard wrote: post #36

Earlier quoted context omitted.

Sometimes it is exactly what they're doing. 15 years ago, shortly after surgery to remove a tumor from my femur, I ran into a physical therapy assistant whom I'd been working with when my doctors thought my leg pain was a soft tissue problem. He said he'd heard about my surgery and was glad I was doing well, and then as we parted ways he cheerfully commented offhand that when I'd been working with him and his supervi…

Statistically speaking, you were making that all up. Of course in your case it turned out to be serious, but think about how negligible the odds of that are when you're seeing dozens of patients a day during your career.

It's not negligible, BECAUSE you are seeing dozens of patients a day. When you're a doctor, factoring the odds into your diagnosis will screw up your diagnosis BECAUSE you are exposed to the whole probability spectrum, not a quanta of it.

Using "chance of occurrence" is a major logical fallacy for diagnosis identification and can ruin the whole practice.

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