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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

#171

Post by tootie »

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…

My wife was recently diagnosed with fibromyalgia and the doctor explained it exactly this way. It literally just means "nerve pain". There were no markers for rheumatoid arthritis so they just give it a label that is essentially just a placeholder. They can only treat symptoms anyway so it doesn't matter. I've got narcolepsy which was identified decades ago, but the mechanism was only isolated about 20 years ago and there's no direct treatment. Only ways to reduce symptoms. My condition definitely originates in the brain and can be treated with the same kind of CNS stimulants they give to people with depression or ADHD. So declaring a condition to be "in your head" isn't really synonymous with it being imaginary. For narcolepsy, most patients have a very explicit emotional trigger for symptoms. Emotions trigger neurotransmitters and neurotransmitter failure is the specific mechanism for causing the syndrome. So you can say it is most assuredly "psychosomatic" without that connotating it being some kind of emotional weakness. Your brain is part of your body. It controls thought, perception (including pain), emotion and literally every physical process beyond basic reflexes. Malfunctions in your brain can do all sorts of unpredictable things.

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

#172

Post by lilyball »

tootie wrote: post #171
circlefavshape wrote: post #28

Earlier quoted context omitted.

> 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…

My wife was recently diagnosed with fibromyalgia and the doctor explained it exactly this way. It literally just means "nerve pain". There were no markers for rheumatoid arthritis so they just give it a label that is essentially just a placeholder. They can only treat symptoms anyway so it doesn't matter. I've got narcolepsy which was identified decades ago, but the mechanism was only isolated about 20 years ago and…

Fibromyalgia is more than just a placeholder, there are specific symptoms associated with it (such as the presence of myalgia in multiple locations on both sides of the body above and below the waist), it's just that it's severely understudied, not much is known about the cause, and it's pretty much diagnosed by exclusion.

Fun fact, the drug Xywav which has been FDA-approved for narcolepsy (and ideopathic hypersomnia) has also been shown in studies to help with fibromyalgia. They even sought FDA approval for that but the FDA rejected it on the grounds that there are too many fibromyalgia patients and therefore the risk of abuse is too high (the drug is related to GHB).

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

#173

Post by lilyball »

I would love to know if these results apply to fibromyalgia as well, as CFS/ME-like fatigue can be present with fibromyalgia. For example, in my case, the only reason I wasn't given a concurrent CFS/ME diagnosis with my fibro is because I couldn't point to a viral infection that triggered the fatigue.

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

#174

Post by jodrellblank »

swores wrote: post #103
maxehmookau wrote: post #68

Earlier quoted context omitted.

> 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…

https://old.reddit.com/r/AskReddit/comments/15shhd4/who_was_...

> "He didn't discover it, he was told by midwives over and over and over until he looked into it. Midwives at the hospital observed that when doctors delivered babies, mothers were at a higher risk. Any housewife knew that food would spoil faster if handled with dirty hands and they always used vinegar solutions to clean their hands, tools, and surfaces. Any housewife would do this and midwives did it because mothers and their babies are more important than pumpkin preserves. Only doctors never washed their grubby hands while it was a deeply ingrained habit in most midwives. Semmelweis listened to women. No wonder they locked him away."

Which is uncited/unsupported, but back in the Black Death time of the 1660s: "The villagers established a system of boundary stones around the village’s periphery, boring holes into the rocks and leaving coins soaked in vinegar – they believed it acted as a disinfectant – in the holes. Merchants from surrounding villages would collect the money and leave bundles of meat, grains and trinkets in return." - https://www.bbc.com/travel/article/20151026-the-sleepy-villa...

And from the same Reddit thread:

> "Oh again with this "before Germ Theory no one knew anything about disease!" bullshit. We always knew dead and dirty things caused disease. Dead animals for artillery ammo, dead animals buried by wells, leaving your swords in latrines. We also knew how copper and silver could help heal and prevent disease."

So, it's not like Semmelweiss proposed Germ Theory, or was the first to observe a connection between death and disease, or between 'disinfectant' of some kind and reduced disease. And https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1299347/ says:

> "(notably Alexander Gordon of Aberdeen) had shown that puerperal fever was contagious some 40 years before Semmelweis. The mortality rate in lying-in hospitals did not fall but rose after Semmelweis' treatise was published, and his ‘much-cited but seldom-read’ thesis is immensely long (over 500 pages) and so badly written that it is almost unreadable. [...] Semmelweis deserves to be remembered for his observation in 1847 that making medical students wash their hands in a disinfectant solution before going from the post-mortem room to the lying-in wards of the Vienna lying-in hospital, led to a fall in mortality due to puerperal fever from a very high level to a moderate level. [...] After his death in 1865, Semmelweis was totally forgotten, not only in Vienna but also in Hungary where he was born and to which he returned in 1850. It was not until the late nineteenth century that the introduction of Listerian antisepsis applied to obstetrics led to a steep fall in deaths from puerperal fever. Only then was Semmelweis' work recalled and his faults forgotten."

Which is fine, he shouldn't be knocked, but how did it take 200 years for humans to decide to use the tools that were already internationally known (vinegar) to a large number of people (housewives, midwives) to avoid some kind of death-related contamination, on childbirth and hospital and post mortem scenarios? And why did it take a guy writing a 500 page near-psychosis rant?

Was that low hanging fruit and if so, how much more of that is still in the world today?

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

#175

Post by watersb »

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…

I managed to get through a bad flu infection in late 2003, but my health steadily declined over the next 5 years to the point where I could not get out of bed two or three days per week. Like, crawling on the floor to get out of bed exhaustion.

I've been tested and evaluated for lots of things. Fortunately, not a dire progressive disease like multiple sclerosis or Parkinson's.

Unfortunately, I have not been able to substantially improve energy level in a sustained way. There are times when I can gain momentum for about three weeks but then there's a collapse. If I push it, I've had vital signs go awry and it's enough to scare the emergency medical personnel who are called when I pass out... and then a few hours later, nothing worse than severe fatigue.

I wonder how far away we might be to sorting it all out, things you shouldn't be doing after a viral infection, or environmental factors that we will discover, or if we will be able to understand this at all without a more fundamental rework of medical understanding.

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

#176

Post by pygy_ »

dahfizz wrote: post #124
pygy_ wrote: post #121

Earlier quoted context omitted.

Definitely, and dealing with malingerers is infuriating. That being said, when in doubt, I thin that doctors should trust patients (defendants are presumed innocent, patients should be presumed to be sick). Stiffing the ill to spite possible asshats is a bad societal bargain.

Even if a doctor believes a patient, what are they supposed to do against a disease with no tests and no treatment?

Social recognition is better than the gaslighting folks with ME/CFS and other so-called "functional" diseases (with the scare quotes read "we really think you're nuts but won't say it out loud") often have to endure.

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

#177

Post by quenched »

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…

There is no evidence for functional neurological disorder, it is simply a hypothesis. As a diagnostic category it is essentially a "god of the gaps" construct. Remember also that the name is a re-branding of what used to be called conversion disorder (previously known as hysteria), that was found to be an acceptable term to patients.[1]

It's heavily published on and widely accepted as valid by neurologists, but that does not make it true.

The concept with FND is that there is no identifiable structural pathology, but that the neural circuits are dysfunctional, and that this can be fixed with things like cognitive behavioural therapy. This is typically framed to the patient as "the hardware is completely OK, there's just a problem with the software." (As most of this audience would recognise there is very little overlap between how brains work and how computers work.)

However, more advanced imaging techniques, such as 7T MRI are now showing structural abnormalities in these patients, which is a pretty fundamental problem for the above hypothesis. An attempt to rationalise this by FND proponents is made here.[2]

A recent example involves a 10yo child who developed a movement disorder following Covid.[3] Typically these would be diagnosed as functional movement disorder [4][5][6] and psychological therapy advised. However this group showed that in fact it was due to a neuroimmune pathology, with auto-antibodies forming that targeted some portion of the basal ganglia. The patient recovered completely with immunosuppression.

[1] https://www.bmj.com/content/325/7378/1449

[2] https://neurosymptoms.org/en/faq-2/can-people-with-fnd-have-...

[3] https://link.springer.com/article/10.1007/s00415-023-11853-5

[4] https://movementdisorders.onlinelibrary.wiley.com/doi/10.100...

[5] https://cp.neurology.org/content/11/5/e686

[6] https://adc.bmj.com/content/106/5/420

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

#178

Post by htss2013 »

Aurornis wrote: post #162
mwerty wrote: post #137

Earlier quoted context omitted.

Went through the same decades ago. Was prescribed Vitamin D 50,000 IU, once a week. Helped a lot. Best of luck!

50K IU of Vitamin D per week would push many people into overdose range after a few months. Anyone taking high doses like this needs to also get blood tests to make sure they're not accumulating too much. Remember that it stays in the body a long time and therefore overdose can take many months or over a year to finally show up. Vitamin D only really has dramatic effects in people who are severely deficient. Despite…

I wish this was true but I and other family members had rock bottom low vitamin D levels in lab tests. We supplemented until it rose to normal levels. None of us noticed any perceptible difference. Suppodedly this will prevent problems but it doesn't feel like anything has been fixed. I wonder how much is placebo.

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

#179

Post by Wistar »

atombender wrote: post #161
Wistar wrote: post #139

Earlier quoted context omitted.

"Seabiscuit" author Laura Hillenbrand wrote a disturbing (to me) essay entitled "A Sudden Illness" recounting the exact moment of the onset of her struggle with CFS. The apparent precursor infection was strep. https://www.newyorker.com/magazine/2003/07/07/a-sudden-illne... Also, Dianna Cowern, "Physics Girl" has been dealing with long COVID and CFS/ME for about a year now. Horrible. https://twitter.com/thephysicsgirl…

Strep, in particular Streptococcus pyogenes , is really fascinating, and is potentially implicated in a lot of things. It's capable of what's called molecular mimicry, where a virulence factor called M protein cross-reacts with host antigens, causing autoantibodies to attack your own tissue, i.e. autoimmunity [1]. S. pyogenes has been implicated in other autoimmune disorders like psoriasis [2], which we know can be t…

Interesting! Earlier this year my spouse fell mildly ill and was diagnosed with strep (throat). She was given a high-strength anti-biotic that had two or, maybe three initial large doses followed by about 20 smaller doses. She felt better for a couple weeks but soon fell ill again. She was diagnosed a second time with strep. She was prescribed a wider spectrum antibiotic with a longer course of 28 days which seemed to do the trick.

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

#180

Post by hliyan »

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…

Have done many over the past 25 years (we call them ECGs over here). All were normal. One suggested that I may have MVP (Mitral Valve Prolapse) at the age of 18, which I thought was the cause. But then more resent scans confirm that I don't suffer from MVP.
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