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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

#181

Post by quenched »

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…

> The difference is that exercise is thought to help with those conditions and exacerbates ME/CFS

It's proven to be the case. A repeat cardiopulmonary exercise (2-day CPET) is currently the only widely replicated biomarker for ME/CFS. Only ME/CFS shows a reduction in performance and a lowering of ventilatory threshold on the second day. Anyone else (sedentary, cancer, heart or lung disease, MS, depression) will show an improvement. [1]

A study this year showed a striking effect looking at the metabolites in urine after exercising female ME patients vs sedentary healthy controls. The ME patients just did not excrete metabolites as the healthy controls did. [2]

"This indicates that ME/CFS patients have a general metabolic dysregulation that is part of their exercise intolerance and PEM in which altered metabolic excretion is a contributing factor."

There's also a very simple clinical discriminator between ME/CFS and depression. If you ask a depressed person what they would do if they were suddenly cured, their answer will be "Not sure, I don't know, I can't think of anything, nothing really." If you ask someone with ME/CFS the same question, the response would be "Go to the shops, drive my car, walk on the beach, see my friends... etc".

[1] https://www.mdpi.com/2227-9032/8/3/192

[2] https://www.mdpi.com/1422-0067/24/4/3685

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

#182

Post by ksenzee »

dahfizz wrote: post #119
ksenzee wrote: post #109

Earlier quoted context omitted.

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.

There is no simple lab test for CFS, and there are no miracle treatments, but it can be diagnosed, and some of the symptoms can be treated.

For diagnosis, there are clear diagnostic criteria, including the presence of post-exertional malaise, which is very easy to recognize simply by talking to the patient. (“I went grocery shopping last week, and I didn’t think I’d overdone it, because I felt okay that afternoon, and I had a full night’s sleep, but I woke up the next day feeling terrible and I could hardly get out of bed all day.”) There is a lab test that can be done for it, but it essentially consists of making the patient “crash” by exercising two days in a row and observing how much worse they are the second day. It’s not recommended for diagnosis because it’s harmful (it can take months to recover from a bad crash) and, again, not necessary.

For treatment, there are a few supplements and prescription drugs that can help each of the symptoms. Many patients experience dysautonomia (it’s in the diagnostic criteria) and there are several treatment options for that (beta blockers, drugs to raise blood pressure, drugs to encourage sodium retention, and others, in addition to non-pharmaceutical options like increasing salt and water intake). The fatigue itself is harder to treat, but a few supplements have been found to help. Cognitive dysfunction is a major problem that is definitely treatable (with ADHD and dementia drugs); that alone is enough reason to get diagnosed and treated.

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

#183

Post by ksenzee »

quenched wrote: post #177
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…

There is no evidence for functional neurological disorder, it is simply a hypothesis. As a diagnostic category it is essentially a "god of the gaps" construct. Remember also that the name is a re-branding of what used to be called conversion disorder (previously known as hysteria), that was found to be an acceptable term to patients.[1] It's heavily published on and widely accepted as valid by neurologists, but that…

Thank you for this excellent synopsis. One would think rheumatologists would be curious how many people with these symptoms could be helped with immunosuppression. Alas.

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

#184

Post by pygy_ »

circlefavshape wrote: post #71
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…

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

Every disiease has a psychological componnent, and a great part of the placebo effect comes from social status and support.

Being told you're crazy is a net nocebo.

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

#185

Post by aszantu »

treprinum wrote: post #10
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.

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

I'm constantly eating beef and occasionally cheese with no issue, so I haven't been thinking about histamine. I don't seem to react to cheese, other fermented milk or fermented meat or canned fish.

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

#187

Post by cameronh90 »

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…

This mirrors my experience very well, except it started about a decade ago for me. Completely out of the blue, I had a panic attack. Haven't ever experienced anxiety or panic before that, and medical investigations found nothing.

Therapy didn't help but sertraline helped me a lot. I still have no idea what the root cause is, and I've never quite been the same since, especially my energy levels.

However, I am at least functional and can hold down a job!

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

#188

Post by soudiere »

cpncrunch wrote: post #150
soudiere wrote: post #123

Earlier quoted context omitted.

Discussion is more nuanced This study screened for active vs latent on number of viruses in patients vs assumed health controls, bottom chart here is what you would evaluate Valtrex effectiveness against. https://translational-medicine.biomedcentral.com/articles/10...

I don't see any mention of Valtrex there. The point is, multiple studies have been done for antivirals in ME/CFS, and there is no difference in fatigue between arms. EBV, HHV6 and HHV6 tend to reactivate during stress, but don't typically cause symptoms. I think what we're seeing in ME/CFS is this reactivation, but it's not necessarily what is causing the problem (if it was, antivirals would help, but they don't).

Great point, agreed, viral re-activation seems suspect on causality.

I was suggesting to crossreference Valtrex effectiveness against the activated virii in the study I linked. If Valtrex is not effective against the reactivated cohorts, we need more falsification around antivirals ME/CFS.

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

#189

Post by cashsterling »

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…

One should get regular blood tests if possible for a lot of reasons... but supplementing with 50k IU Vit D per week is safe for almost everyone. Should take K1/K2 as well.

Not going to go into detail but there are several recent studies showing that daily intake of up to 50k IU is safe. The concerns over hypercalcemia, etc. were tied to much larger doses per day.

https://pubmed.ncbi.nlm.nih.gov/28012936/

https://pubmed.ncbi.nlm.nih.gov/30611908/

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

#190

Post by atv123 »

quenched wrote: post #177
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…

There is no evidence for functional neurological disorder, it is simply a hypothesis. As a diagnostic category it is essentially a "god of the gaps" construct. Remember also that the name is a re-branding of what used to be called conversion disorder (previously known as hysteria), that was found to be an acceptable term to patients.[1] It's heavily published on and widely accepted as valid by neurologists, but that…

Said by no neurologist ever... This reflects a complete lack of understanding of the diagnostic criteria. FND is not just a diagnosis made when it doesn't fit anything else. If you actually understood the diagnosis and still felt like it was BS for some reason, it would be because you would be arguing that patients are intentionally feigning their symptoms rather than "the diagnosis just does not exist at all" or that symptoms can be explained by an immunological or other medical cause. Just ask Dr. Google about the Hoover's sign or tremor entrainment and once you understand them, the corticospinal tract, and the most basic neuroanatomy of movement, and then see how big of an idiot you look like for posting this.
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