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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

#41

Post by flyinglizard »

Steuard wrote: post #36
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…

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.

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

#42

Post by tomrod »

pja wrote: post #16
tomrod wrote: post #12

Earlier quoted context omitted.

It's probably not COVID hiding in the tissues? I wonder whether injection of genes by the virii result in altered DNA producing broken proteins. Is 23andMe data of sufficient quality to test altered DNA?

23andme looks for specific single nucleotide polymorphisms (SNPs) so it’s completely unsuitable for looking for this kind of DNA alteration that could be anywhere in the genome.

Thank you for the correction.

How would you look for DNA alteration, generally?

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

#43

Post by aestetix »

maxehmookau wrote: post #25
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." I don't think that's true, at least not in my experience anyway. People (myself included) are too quick to conflate "all in your head" with "making it up". Things "in your head" can and do have real, physical, life-limiting, effects. If it turns out that ME/CFS doesn't has a physical marker, then what? There may never be a way to verifiably test for it other than…

> If it turns out that ME/CFS doesn't has a physical marker, then what? There may never be a way to verifiably test for it other than symptomatically. It's no less real for the people living with the effects, but there may be no pill to take, or injection to administer.

To me, this argument does not make sense. Consider the example of Physics Girl (I linked the video in another comment). The video shows her before COVID, and after COVID. It's obvious that her COVID infection did something to cause her to go from being an amateur astronaut to being bed-bound. There is clearly some kind of imbalance, somewhere. We use biomarkers like CRP levels to determine whether someone has an infection, others for cancer, or any other disease. Why would it be different for this?

If we can identify some kind of biomarker... be it a protein, something in the blood, etc, and link it to COVID, then we can start testing treatments to see how they impact the biomarker.

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

#45

Post by rocqua »

treprinum wrote: post #10
aszantu wrote: post #6

The WASF3 Protein shows up in other studies as well. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8703627/ I'm esp. interested in any interaction with food. Because I get depression 4 days after I ate a food. I don't have any other symptoms than low energy and a sense of impending doom. Symptoms stay for 3 days then go away. Started collecting the info in my github. I'm very interested if anyone has more ideas.

Did you try antihistamines? This could be some form of acquired allergy or auto-immune reaction.

Is there a plausible mechanism for histamine to affect gut-health? I thought histamine was just an airway thing.

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

#46

Post by maxehmookau »

aestetix wrote: post #43
maxehmookau wrote: post #25

Earlier quoted context omitted.

> doctors dismiss patients as crazy or "making it up." I don't think that's true, at least not in my experience anyway. People (myself included) are too quick to conflate "all in your head" with "making it up". Things "in your head" can and do have real, physical, life-limiting, effects. If it turns out that ME/CFS doesn't has a physical marker, then what? There may never be a way to verifiably test for it other than…

> If it turns out that ME/CFS doesn't has a physical marker, then what? There may never be a way to verifiably test for it other than symptomatically. It's no less real for the people living with the effects, but there may be no pill to take, or injection to administer. To me, this argument does not make sense. Consider the example of Physics Girl (I linked the video in another comment). The video shows her before CO…

> Consider the example of Physics Girl (I linked the video in another comment). The video shows her before COVID, and after COVID. It's obvious that her COVID infection did something to cause her to go from being an amateur astronaut to being bed-bound.

I didn't really make an argument to "not make sense". Right now, ME/CFS may just be a collection of symptoms rather than a specific _thing_ that can be tracked, measures and cured. Or it may be a specific infection. We don't know.

Sure, it's compelling. But the plural of anecdote isn't data. It may seem obvious, but so far we haven't found the biomarker yet and must surely keep an open mind that one may not exist.

I'm not saying we should stop looking, but that the thing we're looking for may not appear.

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

#47

Post by aestetix »

maxehmookau wrote: post #46
aestetix wrote: post #43

Earlier quoted context omitted.

> If it turns out that ME/CFS doesn't has a physical marker, then what? There may never be a way to verifiably test for it other than symptomatically. It's no less real for the people living with the effects, but there may be no pill to take, or injection to administer. To me, this argument does not make sense. Consider the example of Physics Girl (I linked the video in another comment). The video shows her before CO…

> Consider the example of Physics Girl (I linked the video in another comment). The video shows her before COVID, and after COVID. It's obvious that her COVID infection did something to cause her to go from being an amateur astronaut to being bed-bound. I didn't really make an argument to "not make sense". Right now, ME/CFS may just be a collection of symptoms rather than a specific _thing_ that can be tracked, measu…

Ah, I see what you're saying.

I think a more logical approach (for me) would be to say that there might be multiple biomarkers which could present ME/CFS type symptoms in different ways.

Dr. Bhupesh Prusty has recently given some lectures on his discoveries related to Fibernectin, for example. That could be a massive breakthrough, but we need more studies on it.

One other data point that might interest you: apparently a large percentage of ME/CFS patients are finding relief through valtrex. Apparently there is some relation to the herpes virus, although nobody understands how or why.

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

#48

Post by yldedly »

rocqua wrote: post #40
londons_explore wrote: post #15

Earlier quoted context omitted.

One potential mechanism for fatigue: * Virus' have a high failure rate - many infected cells never go on to multiply. * However, those infected cells may also not still perform correctly. * If you have a good chunk of your cells in your body no longer performing their function, yet not dying and making way for replacements either, everything isn't going to work as well. That would explain why it is a wide range of vi…

That seems like a plausible hypthosis, but hard to test for. In this hypothesis, what would be a solution? Best I can think of is Chemo-therapy, to kill of the bad cells. But that feels incredibly heavy handed, as well as liable to do more damage.

Probably not a solution, but many people have reported benefits from fasting, which increases cellular autophagy which degrades disfunctional cell parts - and might play a role in programmed cell death, though the relationship is not clear.

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

#49

Post by lixtra »

rocqua wrote: post #40
londons_explore wrote: post #15

Earlier quoted context omitted.

One potential mechanism for fatigue: * Virus' have a high failure rate - many infected cells never go on to multiply. * However, those infected cells may also not still perform correctly. * If you have a good chunk of your cells in your body no longer performing their function, yet not dying and making way for replacements either, everything isn't going to work as well. That would explain why it is a wide range of vi…

That seems like a plausible hypthosis, but hard to test for. In this hypothesis, what would be a solution? Best I can think of is Chemo-therapy, to kill of the bad cells. But that feels incredibly heavy handed, as well as liable to do more damage.

Intermittent fasting could work.

And time.

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