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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

#151

Post by 01100011 »

mwerty wrote: post #137
01100011 wrote: post #130

Earlier quoted context omitted.

Interesting. I got a very weird illness last November and all I can say is that it wasn't COVID. Ever since, my energy levels have plummeted, I can't stop gaining weight, I've had worsening cognitive issues, and I've become intolerant to exercise(yes, the weight makes this worse).

Went through the same decades ago. Was prescribed Vitamin D 50,000 IU, once a week. Helped a lot. Best of luck!

Yeah I should try pumping up my D levels. I take 2,000 IU/day plus mid-day sun exposure but it doesn't hurt to try it. From what I've read, short term Vit D doses can be pretty high without causing an issue.

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

#152

Post by [deleted] »

roody15 wrote: post #143

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…

[deleted]

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

#153

Post by GordonS »

soudiere wrote: post #63
GordonS wrote: post #34

Earlier quoted context omitted.

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.

Post-exertional malaise is a poor diagnostic indicator, the sensitivity and specificity are quite low. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7988339/ First problem, I do not have ME/CFS, let's use the Maes et al (2012) scale. 0-5 scale, 5 being the worst. "1 means mild exacerbations of fatigue/pain/neurocognitive symptoms following exercise (either cognitive or physical)" Yep, after a longer, harder than norma…

I'm not saying the existence of a symptom (PEM) is as good as a diagnostic test; rather, in the absence of diagnostic tests, they are "enough" to diagnose CFS. And PEM isn't the only common symptom, there are others, such as a constant lactic acid-like burning sensation in the limbs.

I know you said you don't have CFS, but trust me - the fatigue we suffer after PEM is nothing like "normal" body fatigue after exercise.

I think we'll find a diagnostic test eventually. At least, I hope we do.

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

#154

Post by GordonS »

nradov wrote: post #99
PaulKeeble wrote: post #54

Earlier quoted context omitted.

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…

It depends on the country. In the UK for example, medications are indeed licensed to treat certain conditions. Specialist doctors are able to prescribe off-label regardless, but most are reticent to do so.

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

#155

Post by hinkley »

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.

> This study shows that endoplamic reticulum (ER) stress–induced WASF3 protein localizes to mitochondria and disrupts respiratory supercomplex assembly, leading to decreased oxygen consumption and exercise endurance. Alleviating ER stress decreases WASF3 and restores mitochondrial function, indicating that WASF3 can impair skeletal muscle bioenergetics and may be targetable for treating fatigue symptoms.

So it's a stress response, not necessarily causal. It's long been suspected that some sort of perennial stress state was involved in this problem (anything from adrenal fatigue to illness genes never turning off). So does this tell us more or is this just another biomarker?

Though I say 'just', finding a biomarker for CFS would still be something people could be tested for, which is way better than where we are now.

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

#156

Post by hinkley »

roody15 wrote: post #143

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…

Complications of Epstein Barr have not been ruled out as a cause for CFS. But the problem is that nearly everyone has been exposed so it's hard to find counterexamples (or the lack of counterexamples)

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

#157

Post by darrenf »

PaulKeeble wrote: post #52
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…

The name ME comes from the observation in the 1950s that the brain stem was inflamed as shown on CT scans run in the Royal free hospital in London (what is now called St Thomas' hospital). In the 1980s they found numerous immune and metabolic dysfunctions in sufferers as well and the list of physiological things wrong has steady increased since. Yet mostly doctors have treated patients with psychology and tried to fo…

> the Royal free hospital in London (what is now called St Thomas' hospital)

??? The Royal Free is in Hampstead, and still exists. St Thomas’ is on the south bank of the Thames at Westminster bridge.

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

#158

Post by squidsoup »

soudiere wrote: post #125
Workaccount2 wrote: post #74

Earlier quoted context omitted.

Pacing is different then the kind of exercise your run of mill doc was prescribing.

Doctor isn't writing a prescription for exercise, they're suggesting you work towards performing more of it because the best (limited) clinical evidence we have suggests it helps.

However, if you reach the threshold that triggers post exertional malaise, it can take weeks to get back to your original baseline, if you get back at all. Exercise can be dangerous to ME/CFS sufferers if it isn't carefully moderated.

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

#159

Post by underdeserver »

jhki wrote: post #114
underdeserver wrote: post #72

Earlier quoted context omitted.

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'm in the same boat brother. I've also got much better in a year, but the early months were hell. We really need proper diagnostics for this condition, so that people can be diagnosed and not dismissed or even denied benefits and support.

Here's hoping.

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

#160

Post by barryaustin »

For anyone generally curious about the ME/CFS patient experience and state of medicine, there are a couple good articles in The Atlantic[0][1].

For those interested in latest research, Dr. Bhupesh Prusty presented[2] a very plausible hypothesis with detailed evidence[3] of virus-triggered autoimmunity causing mitochondrial dysfunction in endothelial cells (vascular system).

And there's a promising treatment for Long COVID with a study[4] claiming improvement in many symptoms, and describing the targeted mechanism of disease pathology (also vascular system). Needs trials and replication, or until then doctors willing to risk off-label treatment.

[0] https://web.archive.org/web/20230728074923/https://www.theat...

[1] https://web.archive.org/web/20230731145624/https://www.theat...

[2] https://www.youtube.com/watch?v=sBmtnMenHgw

[3] https://www.medrxiv.org/content/10.1101/2023.06.23.23291827v...

[4] https://www.researchsquare.com/article/rs-2697680/v1

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