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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

#111

Post by touisteur »

7thaccount wrote: post #85
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 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 sudden fear and anxiety that compounded the situation. I called 911 a week later because I felt very strong and unusual heart symptoms, feeling like a heart attack. Nothing on either ecg, doppler, blood analysis, heart mri, effort test, absolutely nothing - the EMT said at first 'so many calls these days, most looking like panic attacks, poor people suffering with no physical traces of a problem'. ER doc was 'we didn't find anything but don't hesitate next time, it wasn't nothing and even if it's "just" a panic attack we can help'. The problem went away after 6 months of doing frequent/daily light cardio activity...

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

#112

Post by qbxk »

candiodari wrote: post #94
qbxk wrote: post #73

Earlier quoted context omitted.

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 o…

With a disabled RAAS pathway, you die. Quickly. And that's ignoring that there is a mechanism normally preventing this. And what happens when you become allergic to your own hormones is called a cytokine storm ... and it's serious enough that you can say comfortably that no doctor will miss it.

we're not talking about disabling an RAAS pathway though, we're just talking about interfering with it and making it less effective. it's a gradient of many shades

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

#113

Post by joshjhargreaves »

All I can say is that having significant gut dysbiosis is enough to have significant fatigue - think for sure, you can end up having fatigue from cell energy production issues, but it's clear to me that there are definitely different causes of CFS.

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

#114

Post by jhki »

underdeserver wrote: post #72
francisofascii wrote: post #58

Earlier quoted context omitted.

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 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.

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

#116

Post by ypeterholmes »

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?

There was also a study out of Yale showing effectiveness with a combination of guanfacine and N-acetylcysteine (NAC), an anti-oxidant also used for the treatment of TBI.

https://medicine.yale.edu/news-article/potential-new-treatme...

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

#117

Post by niffydroid »

FollowingTheDao wrote: post #93
niffydroid wrote: post #24

As a side note there is the following study CFS/me which might be of interest "We aim to find genetic causes of why people become ill with myalgic encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) with our ground-breaking research. Take part from your home" https://www.decodeme.org.uk/

Sorry, but they will not find it. At best ME/CFS has a polygenic cause but unless they are also testing for nutrient deficiencies this will come to nothing. The cure can only come from personalized medicine, looking at the individual, not looking for a common cause.

But surely this is a treasure trove of data? Sure the research is aiming to find some sort of common ground, but it still would be possible to use the raw data later on

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

#118

Post by peterfirefly »

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…

Would it have worked to spend lots of money on this kind of research 50 years ago? Were our tools -- scanners, DNA/RNA chips, etc -- and our knowledge anywhere near good enough to make it likely it would have paid off?

To me it sounds like trying to do rocket research in the hope of reaching the moon back in 1900.

Doing it once the time is ripe is a completely different matter. I hope it is ripe now.

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

#119

Post by dahfizz »

ksenzee wrote: post #109
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…

No, your wife _was_ dismissed. Not only that, she was misdiagnosed. And she’s part of a huge patient population that gets misdiagnosed routinely. She has every right to be angry. Misdiagnosis is not benign. It sends you down the wrong path and costs you years.

What should the doctor have done instead?

By all accounts, there is no way to test for or to treat CFS. Assuming it is real, and OPs wife did have it, what is to be done? The doctor ruled everything else out, and now there is nothing more they can do.

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

#120

Post by Engineering-MD »

pygy_ wrote: post #102
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…

Doctors behave as if medical knowledge was exhaustive, and infer that symptoms they don’t understand come from mental illness. Most diseases have a psychological component, but patients are seldom referred to a psychiatrist for treating their heart ache when they get an infarction. I just mentioned these findings (and others about autoimmunity against the satellite cells in dorsal root ganglia) to my mum, a doctor sp…

The difficulty is most clinical diagnoses (and some with specific criteria) will be a heterogenous group of diseases. Some patients with the label CFS may well have real pathology which can be treated, but some will be mostly psychological in nature, and some will be malingerers. Of course diseases without a proper diagnostic test will attract malingerers and then make people question those with a real diagnosis. Part of the problem of uncertainty in medicine.
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