Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

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

science.org

Post reply on HN
Print view View original

91–100 of 195 posts

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

#91

Post by FollowingTheDao »

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…

Better potential mechanism:

* person gets infected

* enyzmes needed to fight infection are used more

* these enzymes need cofactors like manganese, zinc and iron

* Patient becomes depleted in Manganese, zinc and iron.

* since these cofactors are needed to control oxidative stress in the mitochondria there is more oxidative stress in the mitochondria

* fatigue

https://onlinelibrary.wiley.com/doi/10.1016/j.cdtm.2020.11.0...

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

#92

Post by cpncrunch »

maxehmookau wrote: post #59
aestetix wrote: post #47

Earlier quoted context omitted.

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: apparentl…

> apparently a large percentage of ME/CFS patients are finding relief through valtrex _Are they though?_ This needs a citation. What constitutes large? A majority? That's unlikely, especially in the UK where medications aren't prescribed unless there's measured clinical value in it. I'm sure some are finding relief, but until we know how many and how much relief it could just be a placebo effect, right? I hope that a…

There was a Valtrex trial a few years ago, and the results weren't impressive. Valtrex didn't even reduce EBV titers more than placebo (table III):

https://iv.iiarjournals.org/content/invivo/21/5/707.full.pdf

Other trials into antivirals have been negative.

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

#93

Post by FollowingTheDao »

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/

Sorry, but they will not find it. At best ME/CFS has a polygenic cause but unless they are also testing for nutrient deficiencies this will come to nothing.

The cure can only come from personalized medicine, looking at the individual, not looking for a common cause.

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

#94

Post by candiodari »

qbxk wrote: post #73
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,…

my pet theory is that long covid is associated with an autoimmunity to the ACE hormone. If covid uses the ACE2 receptor to enter your cell, the spike protein must resemble a portion of the ACE hormone, and it's easy for your immune system to "miss" and attack the wrong thing. Once you are "allergic" to your own hormones, you have two problems: 1) chronic immune response and inflammation and 2) lack of effectiveness o…

With a disabled RAAS pathway, you die. Quickly.

And that's ignoring that there is a mechanism normally preventing this. And what happens when you become allergic to your own hormones is called a cytokine storm ... and it's serious enough that you can say comfortably that no doctor will miss it.

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

#95

Post by zzzeek »

underdeserver wrote: post #72
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…

A a few weeks after I had COVID I started having panic attacks. I went up a couple of flights of stairs at work and felt immensely exhausted - way more than I should have, I use the stairs at work all the time. I started feeling like there might be something wrong with me and that turned into a panic attack. (Later, of course, that turned out to be a symptom of long COVID fatigue.) I was 32 at the time. Never had a p…

I've suffered from nearly lifelong depression and panic attacks.

however, about ten years ago my general feeling of anxiety suddenly got much worse. I was able to cope with it using all of my usual anxiety coping skills but it seemed kind of off that everything had shifted. I went onto Lexapro, which helped. But then in 2019 or so things really started getting nutty again, where I'd be up all night with panic, often waking me up in the middle of the night, would be up until 5 am, finally fall asleep, then would have another during-sleep panic attack that would last all day.

Turns out I have a node in my thyroid producing thyroid hormone. I now take a very low dose of medication for hyperthyroidism and my panic-esque anxiety levels are kind of lower than they've been for like my entire life (still need the lexapro though, I am sure that my anxiety issues are not strictly the thyroid node).

Basically it sucks to have psychiatric illnesses that are standalone, but also compounded by other non-psychiatric pathologies.

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

#96

Post by csours »

qbxk wrote: post #73
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,…

my pet theory is that long covid is associated with an autoimmunity to the ACE hormone. If covid uses the ACE2 receptor to enter your cell, the spike protein must resemble a portion of the ACE hormone, and it's easy for your immune system to "miss" and attack the wrong thing. Once you are "allergic" to your own hormones, you have two problems: 1) chronic immune response and inflammation and 2) lack of effectiveness o…

According to medical professionals I trust, Long Covid is likely to be multiple diseases with multiple causes, and any individual can have some of each.

Autoimmune reactions may be the longest covid; cell/organ damage is another; it is also possible that people may have less-than clinically detectable viral activity, or viral activity in some "pocket".

I'm not a medical professional, this is not medical advice.

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

#97

Post by nradov »

sp332 wrote: post #83
flyinglizard wrote: post #41

Earlier quoted context omitted.

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.

Why would any of those patients make up being in pain, let alone... most of them?

Opioid addicts frequently make up being in pain in order to obtain prescriptions. That's far less common in physical therapy patients but it does occasionally happen.

https://my.clevelandclinic.org/health/diseases/9833-munchaus...

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

#98

Post by cpncrunch »

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…

>It's obvious that her COVID infection did something to cause her to go from being an amateur astronaut to being bed-bound

We know that infections cause sickness behaviour (fatigue, depression, etc.) due to the effect of the cytokines on the brain. The interesting thing is that the brain itself releases similar cytokines in response to mental stress, and mental stress also activates the glial immune cells in the brain.

Infections also activate the HPA axis (the body's stress system) in the same way as mental stress does. This is to give the immune system energy to fight the infection, and also to prevent a fatal over-reaction by the immune system. Chronic long-term stress can result in a blunted HPA axis response, and this is commonly seen in ME/CFS.

Patients who have been bedbound with ME/CFS report that they were trapped by fear that there was something wrong with their bodies, and they felt fear when going outside or doing anything, and this caused further symptoms. Reducing that fear, and experimenting with activities again in a calm manner seems to be key to recovery. Looking at some of the tweets from physics girl, it looks like she may be stuck in this state.

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

#99

Post by nradov »

PaulKeeble wrote: post #54
AnimalMuppet wrote: post #50

There is some research currently on low doses of naloxone as a treatment for long Covid/CFS/ME. Would naloxone have anything to do with this protein, or is it an unrelated approach?

We think it just reduces some of the brain inflammation and thus alleviates some of the symptoms. Its also a treatment sufferers become tolerant to and it stops working. Its also very hard to dose right and requires constant adjustments and its not without side effects that often make it not worthwhile and for some people it never works. It should be authorised as a treatment for ME/CFS and Long Covid in the short te…

There's no process to "authorize" an existing approved prescription drug as a treatment for ME/CFS and Long COVID. Doctors can already prescribe those drugs off label if they wish (although the patient might have trouble getting insurance coverage for those claims depending on their policy). In order to make them on-label treatments then the drug company or some other party will have to conduct a large-scale clinical trial and go through the FDA regulatory process to prove that it is safe and effective. This is expensive, but drug companies do such studies all the time in order to increase revenue and extend patent protections.

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

#100

Post by njroute22 »

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.

I am also carnivore with NO energy or fatigue issues.

HOWEVER, I am constantly experimenting with foods, isolation, etc. - and I discovered that PLANT-BASED milks or creamers for my coffee give me TERRIBLE CFS. - Almond Milk - Cashew Milk

Specifically "big brand" names you find at chain stores. They must be chemically treating these foods with something. I don't trust them.

Back to cow's milk for me.

Post reply on HN