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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

#161

Post by atombender »

Wistar wrote: post #139
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…

"Seabiscuit" author Laura Hillenbrand wrote a disturbing (to me) essay entitled "A Sudden Illness" recounting the exact moment of the onset of her struggle with CFS. The apparent precursor infection was strep. https://www.newyorker.com/magazine/2003/07/07/a-sudden-illne... Also, Dianna Cowern, "Physics Girl" has been dealing with long COVID and CFS/ME for about a year now. Horrible. https://twitter.com/thephysicsgirl…

Strep, in particular Streptococcus pyogenes, is really fascinating, and is potentially implicated in a lot of things. It's capable of what's called molecular mimicry, where a virulence factor called M protein cross-reacts with host antigens, causing autoantibodies to attack your own tissue, i.e. autoimmunity [1].

S. pyogenes has been implicated in other autoimmune disorders like psoriasis [2], which we know can be triggered by strep bacteria. In psoriasis, we have some evidence that it may set off a kind of bogus vicious cycle where a type of T-cell called a tissue-resident memory T-cell is "programmed" by an initial bacterial infection, but gets into a confused state where inflammation keeps going even long after the bacteria are physically gone. With other disorders, PANDAS [3], the cross-reactivity causes strep affect the brain and cause neuropsychiatric symptoms.

In some cases, strep bacteria are thought to linger in the body even long after a symptomatic infection, hiding in biofilm or in reservoirs like the tonsils, occasionally re-emerging to cause an immune response, similar to the Epstein-Barr virus. I would not be surprised if strep turns out to be the ultimate cause of some illnesses like ME.

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6684244/

[2] https://pubmed.ncbi.nlm.nih.gov/19781993/

[3] https://www.nimh.nih.gov/health/publications/pandas

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

#162

Post by Aurornis »

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!

50K IU of Vitamin D per week would push many people into overdose range after a few months. Anyone taking high doses like this needs to also get blood tests to make sure they're not accumulating too much. Remember that it stays in the body a long time and therefore overdose can take many months or over a year to finally show up.

Vitamin D only really has dramatic effects in people who are severely deficient. Despite all of the influencers and podcasts claiming it's a miracle supplement and that we're all deficient, actual Vitamin D studies don't show much or any benefit outside of people who are significantly deficient.

But yes, if your Vitamin D is actually low then getting it into the normal range could have some dramatic effects.

Some doctors will prescribe short courses of Vitamin D as an almost-placebo when they can't find anything else wrong. It works quite well as a placebo for many people because podcast health influencers have been talking about it so much lately.

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

#163

Post by tysam_and »

I have a post-viral syndrome case of chronic fatigue. I've not been diagnosed with CFS formally, but I match many of the symptoms required, including orthostatic intolerance.

It is an extremely complicated condition. I personally have had a pet theory that disturbed barrier function is involved somehow, and seeing this article is extremely confirming for me, since it mentions that as a potential factor. In fact, one study on just the metabolites of people with CFS vs healthy people found that a Vitamin E derivative -- one often a part of healthy cell barrier function -- was significantly lacking in CFS people compared to the normal population, and was a strong marker. However, this seems to have been largely brushed over in later literature, with more popular things like fatty acid processing and such being mentioned.

What has worked for me: -- Ketogenic diet (avoiding lactic acid production) -- greatly dampened PEMS. -- Blood glutamate scavengers + Niacinamide + Ribose (1g): Provides NAD + a cofactor needed to transform glutamate in the blood into something else. For some reason, this really seems to help with CFS patients. Helps with resting fatigue. The cheap and accessible BGS I use are NAC, pyruvate, and (sometimes) malic/citric acid. Malic is better as it is right before oxaloacetate, a BGS, in the Krebs cycle, and it turns into Citrate. Citrate IIRC raises the levels of one of the enzymes that eliminates lactic acid. Your blood cells can only use glycogen, so there will always be some level of lactic acid production to be suppressed. -- Reduced glutamate + free glutamate intake: Lower-glutamate proteins (tuna, etc), no hydrolyzed soy protein, yeast extract, etc. -- Gotu Kola (biases the glutamateGABA conversion towards glutmate->GABA as I understand, a double-bonus), various anti-inflammatories (Quercetin+non-citrus C, liposomal Turmeric+curcuminoids (!! Important, piperine inhibits both Pgp and glucoronidation, which increases absolutely everything in absorption. Liposomal is better), and boswellia for LOX-5 inhibition. Looking to move to a stronger Boswellia extract (5-Loxin) as it's lighter weight.

These changes, while I still have energy issues, have made it safe enough for me to be able to backpack outdoors for extended periods of time. My longest so far has been a 2 month trip (with 1-2 nights indoors).

Hope this helps anyone who struggles with this and is looking to experiment. I wish I was back to 100%, but being able to be out in nature after being mostly bedbound is...well, my heart is much more full when I am. <3 :')

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

#164

Post by Aurornis »

barryaustin wrote: post #160

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…

A warning about Long COVID research: Any long-term trials that don't have a control group are virtually useless. When large Long COVID patient groups are studied without any treatment, the number of people reporting Long COVID symptoms declines over the course of the study.

The takeaway is that for many (but not all!) Long COVID symptoms naturally get better over time. This is a huge problem for Long COVID treatment studies that don't include a control group because there's no way to tell if the treatment made the patients better any faster than they would have normally healed.

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

#165

Post by Aurornis »

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…

> 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,

Depression is a comorbidity of chronic illness. It's hard not to become depressed when dealing with an unexplained illness.

Psychiatric treatment can reduce the contribution of the comorbid depression, which can create a net improvement for these patients.

Too many patients with chronic illness will refuse any psychiatric treatment because they are resistant to the idea, but they end up suffering more than necessary.

When doctors can't identify or treat the core illness, they can at least address comorbidities and work on increasing quality of life. Psychiatric care is at the top of the list for helping people's quality of life in these situations.

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

#166

Post by rincebrain »

maxehmookau wrote: post #56
PaulKeeble wrote: post #52

Earlier quoted context omitted.

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…

Your comment kinda casts doctors as the boogiemen though and I struggle to understand the motive for them to act in this way. Doctors, generally, want the best outcome for their patients. I find it hard to believe that they're doing something actively harmful that's against accepted best practices, informed by scientific literature, because... they hate their patients? If there truely were thousands of papers showing…

Doctors generally want the best outcome for their patients, but are heavily optimized for what they see most often.

If 90% of your patients come in sneezing and it's a flu for 30 years, then you generally give them advice for handling a flu and it works most of the time. But that also means you have a tenth of the experience handling the edge cases, at best.

Confounding variables make this a lot worse, like people having multiple symptoms, or not telling the doctor things because they felt dismissed before, or that they stopped seeing them because they gave actively harmful advice.

Having a lot of experience with doctors is what has convinced me medical training needs reform. Doctors actively ignore patients telling them objective factual reasons their advice is incorrect or harmful, and treat you as a hypochondriac for arguing.

I have stopped seeing a number of doctors over the years after they looked at my medical history and said "let's try X again", and when asked why, "just to see", when I have already tried X and two or three other medications in the same family as X, in the history (often from their own larger department, not something I provided), in the last 2 years.

I have stopped seeing doctors over me telling them that raising the dose of a medication made me much worse and having them then cut the visit short by leaving the office, saying they were late for something else, and telling me they were writing a script for double the dose as they left (and no, the drug in question did not have strange dose-response relationships like, say, Seroquel).

I have stopped seeing doctors over them insisting I just had a cold when I told them I was too exhausted to reliably walk two blocks to their office without an escort, every day for a week, not sleeping, and unable to keep any food down, without changing their mind, when I turned out to have pneumonia.

None of them were trying to be harmful.

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

#167

Post by barryaustin »

Aurornis wrote: post #164
barryaustin wrote: post #160

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…

A warning about Long COVID research: Any long-term trials that don't have a control group are virtually useless. When large Long COVID patient groups are studied without any treatment, the number of people reporting Long COVID symptoms declines over the course of the study. The takeaway is that for many (but not all!) Long COVID symptoms naturally get better over time. This is a huge problem for Long COVID treatment…

Yes, that's why I said "needs trials and replication". That small clinical study is useless for insurance companies and standard medical practice today. But it is very useful to point the way toward promising areas of further research, and for any pioneering risk-takers who might be willing to try.

That is, after all, how we learned that stomach ulcers are not psychosomatic (caused by "stress"), but rather by the bacterium H. Pylori. A doctor infected himself, got ulcers, and cured himself with antibiotics!

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

#168

Post by lujim »

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…

ahh. I know the exact month and year as well. March 2004.

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

#169

Post by tootie »

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…

Viral infections can also induce narcolepsy. I'm not sure if that's what did it to me, but I developed symptoms in my 40s and it was a few years after a bout of what I think was meningitis.

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

#170

Post by Terr_ »

Aurornis wrote: post #162
mwerty wrote: post #137

Earlier quoted context omitted.

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

50K IU of Vitamin D per week would push many people into overdose range after a few months. Anyone taking high doses like this needs to also get blood tests to make sure they're not accumulating too much. Remember that it stays in the body a long time and therefore overdose can take many months or over a year to finally show up. Vitamin D only really has dramatic effects in people who are severely deficient. Despite…

Tacking on for anyone alarmed or curious: The main distinction is fat-soluble versus water-soluble.

Fat-soluble vitamins (A/D/E/K) can accumulate in your tissues over time if you keep taking too much.

Water-soluble vitamins (such as C) are much easier for your body to filter and flush via urine. You could still overdose in the short-term, but a chronic accumulation is unlikely.

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