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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

#51

Post by PaulKeeble »

worrycue wrote: post #26
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,…

> 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 ended up on Cancer.

That is all a political failure that has led to no progress on the disease and widespread abuse of patients.

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

#52

Post by PaulKeeble »

maxehmookau wrote: post #25
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." 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 force them to exercise despite being intolerant to it and despite thousands of papers showing the biology of the disease. None of what medicine has done can be justified, it ignores all the science and evidence.

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

#53

Post by manmal »

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?

I think it’s worth a shot, yeah.

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

#54

Post by PaulKeeble »

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 term alongside Ablify as sufferers should get to try these and see if they work but they are both very far from a good treatment and do nothing for the core parts of the condition.

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

#55

Post by soudiere »

krisoft wrote: post #29
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? The problem is that ME/CFS is similar in presentation to other conditions such as for example certain kinds of depression. The difference is that exercise is thought to help with those conditions and exacerbates ME/CFS. Thus there are two different groups of people, one who you are helping by encouraging them to exercise and one who you are harmi…

All exercise excerbates ME/CFS? Only certain types?

Cochrane systemic review, "exercise therapy for chronic fatigue syndrome", 8 studies, 1518 participants

"Investigators compared exercise therapy with 'passive' control in eight trials, which enrolled 971 participants. Seven studies consistently showed a reduction in fatigue following exercise therapy at end of treatment, even though the fatigue scales used different scoring systems ... Serious adverse reactions were rare in both groups (RR 0.99, 95% CI 0.14 to 6.97; one study, 319 participants; moderate‐quality evidence)"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6419524/

Fairly plausible, mitchondrial biogensis is an adaption to exercise, it may be impaired in ME/CFS patients, but not totally inhibited, and more mitochondria may lessen the severity of the pathogenesis of ME/CFS.

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

#56

Post by maxehmookau »

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…

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 a specific biology for the disease that could be targeted and treated why would any doctor ignore that?

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

#57

Post by [deleted] »

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…

[deleted]

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

#58

Post by francisofascii »

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…

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 understood yet.

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

#59

Post by maxehmookau »

aestetix wrote: post #47
maxehmookau wrote: post #46

Earlier quoted context omitted.

> Consider the example of Physics Girl (I linked the video in another comment). The video shows her before COVID, and after COVID. It's obvious that her COVID infection did something to cause her to go from being an amateur astronaut to being bed-bound. I didn't really make an argument to "not make sense". Right now, ME/CFS may just be a collection of symptoms rather than a specific _thing_ that can be tracked, measu…

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 anyone affected by ME finds relief, but the discourse online about it always confuses me. There's always a slight undercurrent of "those mean doctors" and a breakthrough _just_ on the horizon:

"That could be a massive breakthrough, but..."

"apparently a large percentage of ME/CFS patients are finding relief..."

"Apparently there is some relation to the herpes virus, although nobody understands how or why."

In reality, nobody actually knows. Some scientists have got some ideas, some of which stand up to some form of scientific scrutiny. But that's basically it.

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

#60

Post by aestetix »

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…

I agree 100%. That's why I used words like "seems" and "apparently."

It's also why I opened my initial post with "There needs to be more research into this horrible disease."

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