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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

#31

Post by BobbyTables2 »

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 couldn’t identity anything specifically “wrong”. After having a cardiac ablation, I feel a lot better.

If you do, find a electrophysiologist, not a regular cardiologist. Asking the latter is like asking a plumber to find an electrical issue in your house.

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

#33

Post by aestetix »

worrycue wrote: post #26
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,…

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

The two easy areas I can cite are the lackluster results of the RECOVER initiative (https://erictopol.substack.com/p/long-covid-mitochondria-the...), and the complete failure of any government to distribute vaccines well.

Another: 19 September 2022, US President Biden declares COVID to be "over" https://www.youtube.com/watch?v=tHT1enFH2sI

Meanwhile, it is easy to get Pfizer and Moderna vaccines (mRNA based), and hard to get Novavax (protein based). By hard I mean impossible. mRNA are not well understood, have nasty side effects for some people (including me), and lose their efficacy after a few months, thus the need for boosters. You can verify this with blood tests that show antibody levels. With Novavax, which is based on technology that's been around for 20 years, it appears (based on studies) that it keeps its efficacy for at least a year after multiple doses, and it has minimal side effects (including my own shot).

That said, many governments have relationships with Pfizer and Moderna, and so these vaccines are easily attainable, while no such relationship exists with Novavax, and it is impossible to get it. I say impossible after asking about 50 doctors, contacting pharmacies, and finally contacting Novavax themselves, who told me that it is not possible to get until the new mix comes out.

So why would a vaccine that seems to actually work be unavailable, while ones that do not work are easy to get?

I realize that this is more a commentary on COVID than ME/CFS, but I'm arguing that they are very similar. Just consider Physics Girl, who contracted COVID a year ago, and is now bed bound: https://www.youtube.com/watch?v=vydgkCCXbTA

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

#34

Post by GordonS »

krisoft wrote: post #29
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? The problem is that ME/CFS is similar in presentation to other conditions such as for example certain kinds of depression. The difference is that exercise is thought to help with those conditions and exacerbates ME/CFS. Thus there are two different groups of people, one who you are helping by encouraging them to exercise and one who you are harmi…

PEM (post-exertional malaise) is a core symptom of ME/CFS, but I've never heard of it being a symptom of depression. IME it's more correct to say that depression can be a symptom of ME/CFS - having your life blow up can do that.

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

#35

Post by GordonS »

niffydroid wrote: post #24

As a side note there is the following study CFS/me which might be of interest "We aim to find genetic causes of why people become ill with myalgic encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) with our ground-breaking research. Take part from your home" https://www.decodeme.org.uk/

I participated in this, and would encourage others to do so. It's really easy: they send you a spit kit, you do it and post it back, simple as that.

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

#36

Post by Steuard »

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…

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 supervisor, "I thought you were making it all up!" (I still feel angry about that occasionally, all these years later.)

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

#37

Post by rocqua »

worrycue wrote: post #26
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,…

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

Probably GP meant they fucked up by downplaying the danger's of COVID and doing the least possible to keep the hospitals from overflowing. Where, instead, they should have done more to prevent people from getting COVID.

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

#38

Post by aszantu »

icoder wrote: post #8
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 purposely leave out what type of food or was that a typo? Because that would be an (the) interesting part of your experience!

I'm on carnivore diet. I seem to tolerate almost only meat, plants only in small quantities. I did okay with 1 grapefruit/day for a while but that's come to an end.

I seem to be okay with fermented thyme.

Pepper is no good, swollen eyes, but chilly seems to be okay. Those are never consumed in big quantities, I could test with chilly capsules though and maybe I will.

Diet consists of Lamb, once a day, then some yoghurt or kefir in the evening. Some koffee and milk as well.

Haven't collected everything yet, maybe you find something that helps - or can add some. Trying to get diagnosis for leaky gut, it's a drag to get an appointment. https://github.com/cutestuff/FoodDepressionConundrum

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

#39

Post by rocqua »

GordonS wrote: post #34
krisoft wrote: post #29

Earlier quoted context omitted.

> If it turns out that ME/CFS doesn't has a physical marker, then what? The problem is that ME/CFS is similar in presentation to other conditions such as for example certain kinds of depression. The difference is that exercise is thought to help with those conditions and exacerbates ME/CFS. Thus there are two different groups of people, one who you are helping by encouraging them to exercise and one who you are harmi…

PEM (post-exertional malaise) is a core symptom of ME/CFS, but I've never heard of it being a symptom of depression. IME it's more correct to say that depression can be a symptom of ME/CFS - having your life blow up can do that.

The point was that for depression, exercise is a treatment. Whilst for ME/CFS, exercise is harmful.

Hence it is important to make a distinction between the two, so you give proper treatment.

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

#40

Post by rocqua »

londons_explore wrote: post #15
PaulKeeble wrote: post #3

This is a finding more about cellular fatigue and might explain what fatigue actually is. The root cause of ME/CFS and Long Covid Fatigue is almost certainly a chronic infection in tissue without much detectable presence in fluids making it difficult to identify and treat. It is an interesting finding since some treatments for ER stress exist and are worth testing. It's also somewhat linked to the Itaconate shunt the…

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.

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