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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

#21

Post by Madmallard »

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,…

they could do transport chain simulation with blood or muscle samples most likely but it would require expensive equipment so not really feasible if a million people have it

perhaps organic acids testing could show something?

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

#22

Post by treprinum »

manmal wrote: post #13
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.

Some ideas: - Gastroparesis - Thiol intolerance (impaired sulfur metabolism) - could try molybdenum and maybe Boron supplementation (ask doctor if ok) - High gut permeability („leaky gut“) -> undigested proteins enter blood stream -> autoimmunity (eg via viral mimicry; all kinds of viruses can do that, but COVID and EBV come to mind). Water fasting could help, maybe digestive enzymes - Mechnical interaction, eg dysbi…

Wouldn't large quantities of glutamine daily (30g+) be the best way to reduce gut permeability?

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

#23

Post by [deleted] »

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.

[deleted]

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

#24

Post by niffydroid »

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/

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

#25

Post by maxehmookau »

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 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.

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

#26

Post by worrycue »

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?

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

#27

Post by j_maffe »

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…

Yes but recent studies have shown that it's neither of those, meaning that the symptoms are physiological. Not that I'm dismissing the importance of proper care of people with my psychiatric issues with fatigue or pain, it just doesn't apply to ME/CFS/LC anymore.

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

#28

Post by circlefavshape »

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 with her a neurologist diagnosed her with a "functional neurological disorder" and suggested psychiatry. My wife felt dismissed and was really mad about it, but the reality is that some sets of symptoms are psychosomatic, and psychiatry can help, so if the neurologist saw 100 people with my wife's symptoms and made the same recommendation to them all, some of them would benefit (as opposed to her making no diagnosis and none of them benefiting)

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

#29

Post by krisoft »

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?

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 harming. If you can't tell them apart the system is bound to hurt someone.

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