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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

#71

Post by circlefavshape »

francisofascii wrote: post #58
circlefavshape wrote: post #28

Earlier quoted context omitted.

> 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…

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…

I'm not saying psychiatry helped my wife - it didn't, because she didn't go to a psychiatrist. Eventually she got better, as you say.

I think it's unlikely, however, that symptoms are never psychosomatic. If what we think had no effect on how we feel then the placebo effect wouldn't exist

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

#72

Post by underdeserver »

francisofascii wrote: post #58
circlefavshape wrote: post #28

Earlier quoted context omitted.

> 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…

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 panic attack before. Sometimes felt something was wrong but clear thinking and a few deep breaths and I was okay. Not this time.

In the subsequent couple of months I had a few more random panic attacks - once on a highway; I had to pull over.

So I went and saw a therapist. I don't think they actually helped reduce the attacks - the frequency dropped with time, together with the fatigue. Now, two years later, I only have the mildest of attacks (and I'm at around 60-70% of energy). But they did help me calm down, gave me tools to deal with an attack when it happens and reduced my stress around the entire experience.

It was definitely money well spent, and as much as I can tell from being my own carer, clinically relevant.

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

#73

Post by qbxk »

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 of ACE due to it being removed or disabled by your immune system

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

#74

Post by Workaccount2 »

soudiere wrote: post #67
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…

"Tried to force them to exercise ... ignores all the science and evidence" This is a baseless claim, there's a Cochrane review showing exercise is beneficial. Pacing appears to be a common strategy, and it's exercise in of itself.

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

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

#75

Post by InSteady »

treprinum wrote: post #22
manmal wrote: post #13

Earlier quoted context omitted.

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?

This has been found to be effective, although it has a huge list of potential side effects [0]. Anecdotally, among people with GI problems, especially IBS, it can often cause reactions such as nausea, anxiety, and bloating (some practitioners estimate this to occur in about 30% of patients). For this reason it is often recommended to start in small doses (3-5g), sometimes split throughout the day, and gradually increase up to the 30g target over the course of several weeks. Given the list of side effects, including less common but potentially serious ones, it is very much worth running this by your healthcare professional prior to use.

Although there is less research into it than l-glutamine, there is rapidly growing interest into the effects of creatine supplementation on dysfunctions of the epithelial barrier (which would include intestinal permeability aka "leaky gut") [1]. The upshot is that it is an well studied supplement that is very well tolerated by almost everyone.

Zinc carnosine is another one that can be helpful, if tolerated. However it is believed that enteric-coated formulations are required to be effective (which may be hard to find) due to very high absorption rates and susceptibility to stomach acid prior to reaching the intestines [2].

[0] https://www.mayoclinic.org/drugs-supplements/glutamine-oral-...

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8145094/

[2] https://www.sciencedirect.com/science/article/pii/S221074012...

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

#77

Post by InSteady »

rocqua wrote: post #45
treprinum wrote: post #10

Earlier quoted context omitted.

Did you try antihistamines? This could be some form of acquired allergy or auto-immune reaction.

Is there a plausible mechanism for histamine to affect gut-health? I thought histamine was just an airway thing.

Mast Cell Activation Syndrome would be the main one. Mast cells are an integral part of the intestinal epithelial barrier. When they become over-sensitive, even small amounts of dietary histamine (present in a large number of foods) can trigger GI and systemic symptoms. H2 blockers have shown some efficacy, as well as DAO supplements (which break down dietary histamine).

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

#78

Post by cpncrunch »

francisofascii wrote: post #58
circlefavshape wrote: post #28

Earlier quoted context omitted.

> 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…

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…

>Because doctors can't spot the cause, so it must be psychosomatic?

No, because the only replicated findings are that stress (and infections) are triggers, believing in a physical cause is a perpetuating factor, and multi-disciplinary rehabilitation leads to improvement in about 2/3rds and recovery in about 1/3rd of patients.

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

#79

Post by cpncrunch »

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…

No, that's not true. The first CT scanner wasn't invented until the 1970s. There was never any inflammation found: Acheson said that it was always "presumed". The name ME was dropped in the 90s because of a lack of inflammation.

>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

None replicated as yet.

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

#80

Post by cpncrunch »

j_maffe wrote: post #27
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…

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.

Which studies have been replicated?
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