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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

#141

Post by anonuser123456 »

PaulKeeble wrote: post #51
worrycue wrote: post #26

Earlier quoted context omitted.

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

On ME/CFS they failed to fund any research for 70 years, on many occasions saying things that led to patients being abused and not believed by their families or doctors. This led to an attitude in the NIH that it wasn't worth funding research which persists still to this day. There has been no real funding for research out of the NIH since a brief spurt in the 1980s, even now what funding its allocated has mostly end…

> on many occasions saying things that led to patients being abused and not believed by their families or doctors.

Yes, but what part of “a gentleman’s hands are always clean” do you not understand?

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

#142

Post by francisofascii »

tomrod wrote: post #12
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…

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?

> It's probably not COVID hiding in the tissues?

It totally could be. Viral persistence is a strong suspect. HIV hides in "sanctuary" tissues. Other viruses and bacteria probably can evade the immune system in certain types of tissue.

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

#143

Post by roody15 »

Throughout my late teens and early 20’s I suffered from chronic fatigue. Tested positive for mononucleosis three times until later finding these were false positives to Epstein Barr.

Later learning my body was having an autoimmune inflammatory response to viral activity causing debilitating fatigue.

Took variety of treatments including steroids, anti depressants, supplements … and so on.

When I was 22 I met person on the campus of mizzou who simply showed me some meditative stretches and breathing exercises. The idea was to just slow down and focus on improving your bodies own health where it’s at.

This is a oversimplification but the key for me was to stop thinking this was a virus or disorder or in general things were happening to me .. in which I was a passive unfortunate recipient looking for professionals to help.

Instead I decided from now on I would just try and be a healthier person in mind body and spirit where I was at that moment.

The change of mindset to where it is my responsibility to improve my own well being has paid massive dividends. As a middle man I have no real health issues, no chronic fatigue or reoccuranr high white blood cell accounts indicating and over reactive immune system.

My case will lot insipidity apply to all but if I could impart any wisdom would be just take things into your own hands and be an active person working on improving your own condition whatever it may be.

Change the mindset of shoots this sucks and no treatments work … why is this happening to me… to what are things I can do to improve my existence. Am I a nice person. Am I healthy (weight / exercise).. do I like my job and find it is meaningful…

Sorry if sounds dumb and corny but made a world of difference for me.

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

#144

Post by 7thaccount »

touisteur wrote: post #111
7thaccount wrote: post #85

Earlier quoted context omitted.

I have only anecdotal proof, but I believe there is also a link with caffeine. After getting COVID, I went from being an avid coffee connoisseur to getting extreme anxiety from a cup (I've never had anxiety either). I switched to decaf for 2 years before finally incrementally building my tolerance back up. Several colleagues and random people I've met have had similar issues. It goes away over time, but is very real.

We're doing anecdotes here, so... I think the post-COVID symptoms made me aware of parts of my body I had never had to 'deal with' or pay serious attention (I'm not into sports...). Feeling your heart doing weird stuff in normal conditions, isn't surprising to trigger anxiety and panic. The first time I felt like keeling over after some mild-the-month-before bicycle effort, I fell not only the heart symptoms but sudd…

Holy cow. I'm fairly young and also had weird heart issues during COVID too. Felt like I could feel my heart slow down and get out of rythem a few times over maybe a month.

I went to a cardiologist and did a stress test. Nothing showed up and eventually it also went away. Note, I was a little stressed from work, but nothing unreasonable. Home situation wasn't too bad either.

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

#145

Post by abecedarius »

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?

Indeed, why expect any difference between a human doctor and an old-fashioned GOFAI expert system?

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

#146

Post by codeTired »

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…

It took some 20 years for this to become an accepted truth.

I remember learning about a physician who helped his sister with child birth and she died. He was aware of the washing hands but ignored it. I believe he ended up committing suicide as he wasn’t able to cope with basically killing his sister due to his ignorance.

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

#147

Post by abecedarius »

flyinglizard wrote: post #41
Steuard wrote: post #36

Earlier quoted context omitted.

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.

Besides the other responses so far, consider this: the consequences of mistakes about this are asymmetrical. A doctor could be exactly correct about the probability of "making it up", but the cost to the patient of a missed diagnosis is not balanced by the benefit of correctly dismissing other cases. A conscientious doctor could try to consciously account for this, but there's no feedback making them get it right (and pressures against, in our current reality).

Also, when a patient succeeds in getting a correct diagnosis after trying multiple doctors, the previous doctors generally will not find out about their mistake, so there's a bias against them actually learning the right probabilities: you can expect them to be overconfident on this score.

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

#148

Post by hotdogscout »

swores wrote: post #106
hotdogscout wrote: post #20

I got long covid in Jan 2022 but after 9 months the neurological symptoms went away. I got sick just this week and the brain fog came back. Taking probiotics and supplements (omega 3, Multivitamins) and aspirin accelerates the process of getting better for me. I use n-back exercises from Brain Age Concentration Training as measure.

Im confused as to how you reached the conclusion that probiotics and those supplements speeds up the recovery, if your data points are 1) that took 9 months to recover and 2) that only happened in the last week. Is it that this week's brain fog has already gone away and the only difference you can think of is taking those things? In which case it's really nowhere near enough data points to draw conclusions. Really, e…

Feeling and performing better after taking an aspirin as opposed to days I did not take it. Effects don't last more than a day.

Clinical trials and online polls convinced me to try homemade probiotics and multivitamins. I can link them once I'm not busy. No idea if they had any effect but might as well include.

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

#149

Post by codeTired »

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.

I believe it has been found that the new h1 inhibitors like Allegra can inhibit TNF-a, so it could technically work on several inflammatory diseases.

This is what some biologics do.

I have spoke to people who had improvement after doing an antihistamine protocol. In the long covid/cfs space.

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

#150

Post by cpncrunch »

soudiere wrote: post #123
cpncrunch wrote: post #92

Earlier quoted context omitted.

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.

Discussion is more nuanced This study screened for active vs latent on number of viruses in patients vs assumed health controls, bottom chart here is what you would evaluate Valtrex effectiveness against. https://translational-medicine.biomedcentral.com/articles/10...

I don't see any mention of Valtrex there. The point is, multiple studies have been done for antivirals in ME/CFS, and there is no difference in fatigue between arms.

EBV, HHV6 and HHV6 tend to reactivate during stress, but don't typically cause symptoms. I think what we're seeing in ME/CFS is this reactivation, but it's not necessarily what is causing the problem (if it was, antivirals would help, but they don't).

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