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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

#121

Post by pygy_ »

Engineering-MD wrote: post #120
pygy_ wrote: post #102

Earlier quoted context omitted.

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. Par…

Definitely, and dealing with malingerers is infuriating.

That being said, when in doubt, I thin that doctors should trust patients (defendants are presumed innocent, patients should be presumed to be sick).

Stiffing the ill to spite possible asshats is a bad societal bargain.

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

#123

Post by soudiere »

cpncrunch wrote: post #92
maxehmookau wrote: post #59

Earlier quoted context omitted.

> 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…

There was a Valtrex trial a few years ago, and the results weren't impressive. Valtrex didn't even reduce EBV titers more than placebo (table III): https://iv.iiarjournals.org/content/invivo/21/5/707.full.pdf Other trials into antivirals have been negative.

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...

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

#124

Post by dahfizz »

pygy_ wrote: post #121
Engineering-MD wrote: post #120

Earlier quoted context omitted.

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. Par…

Definitely, and dealing with malingerers is infuriating. That being said, when in doubt, I thin that doctors should trust patients (defendants are presumed innocent, patients should be presumed to be sick). Stiffing the ill to spite possible asshats is a bad societal bargain.

Even if a doctor believes a patient, what are they supposed to do against a disease with no tests and no treatment?

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

#125

Post by soudiere »

Workaccount2 wrote: post #74
soudiere wrote: post #67

Earlier quoted context omitted.

"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.

Doctor isn't writing a prescription for exercise, they're suggesting you work towards performing more of it because the best (limited) clinical evidence we have suggests it helps.

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

#126

Post by burkaman »

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.

Say that then. "I don't know what is causing this. I've ruled out everything I can, you may have CFS or psychosomatic symptoms, but I can't test for either. Here are some resources on both. Psychiatry has helped x% of patients with your symptoms, I can't guarantee it will help but here's a referral."

Much better to say "I don't know" than to give a confident diagnosis just because you've run out of things to test for.

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

#127

Post by majormajor »

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's a HUGE difference between saying "we don't know what's wrong and we're sorry but we can't help with medication, but sometimes there can be mental things that help" and "we've diagnosed you with a mental issue, your body is fine." The latter is way more dismissive and angering, and assumes that we know a lot more than we do about the physical systems in the body.

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

#128

Post by hollerith »

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 only way a competent clinician can fail to distinguish CFS from depression is if the patient is outright lying. Most CFS patients for example have exercise intolerance, in which after the patient exercises more than his or her limit (which in severe cases could be walking on level ground for 10 minutes) everything proceeds like it does for a healthy person for 24 hours, then he or she becomes incapacitated for days. Eating lots of carbs, glutamine and creatine will tend to make the period of incapacitation shorter than they would otherwise be at least in non-severe cases of CFS. And this is consistently what happens after every exercise session that goes above the patient's individual exercise threshold. And if the threshold changes, it does so only gradually over a period of months. And if it changes, it changes for reasons other than how diligently or frequently the patient exercises.

My experience (in California) has been that most doctors have been willing to assume I am being truthful, but a significant fraction seem to want to spend their time and energy only on conditions that the patient cannot be deceiving them about.

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

#129

Post by jkingsman »

Invictus0 wrote: post #107
BobbyTables2 wrote: post #31

Earlier quoted context omitted.

Have you ever had an EKG done (for the heart)? I recently had a minor cold that caused some sort of heart inflammation and could have exacerbated/triggered a latent heart rhythm issue. About 1-3 times a minute while resting, my pulse wouldn’t follow the normal rhythm (PVCs — could feel it too while pressing finger into the neck, without EKG). It made me feel less energetic long after the inflammation subsided. I coul…

I don't think you mean to be disrespectful but your comment is almost the equivalent of "did you try taking iron supplements".

I get where you're coming from (and it's great to be on guard for that!), but I think suggesting a specific diagnostic that can indicate a clear pathophysiology known to be associated with the symptoms they're experiencing is a little bit different.

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

#130

Post by 01100011 »

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…

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).
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