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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

#131

Post by callalex »

njroute22 wrote: post #100
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.

I am also carnivore with NO energy or fatigue issues. HOWEVER, I am constantly experimenting with foods, isolation, etc. - and I discovered that PLANT-BASED milks or creamers for my coffee give me TERRIBLE CFS. - Almond Milk - Cashew Milk Specifically "big brand" names you find at chain stores. They must be chemically treating these foods with something. I don't trust them. Back to cow's milk for me.

That’s not what CFS is.

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

#132

Post by johnchristopher »

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…

Apparently I had mononucleosis and my friends still tell me nowadays that I was sleeping all the time everywhere back then. I clearly remember something switching in my energy patterns around 17yo but it's hard to distinguish it from other possibilities like atypical depression or sleep apnea for instance or combinations.

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

#133

Post by drc500free »

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…

Doctors literally say "you're making it up." In those exact words. There is no misunderstanding.

My wife had an emergency department refuse to treat her because they disagreed with an unrelated diagnosis that was in her medical record. Until she admitted that she was "making it up" and didn't have it, so they could "correct" the record, they would not treat her. She ended up having to leave and go to another hospital.

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

#134

Post by njroute22 »

callalex wrote: post #131
njroute22 wrote: post #100

Earlier quoted context omitted.

I am also carnivore with NO energy or fatigue issues. HOWEVER, I am constantly experimenting with foods, isolation, etc. - and I discovered that PLANT-BASED milks or creamers for my coffee give me TERRIBLE CFS. - Almond Milk - Cashew Milk Specifically "big brand" names you find at chain stores. They must be chemically treating these foods with something. I don't trust them. Back to cow's milk for me.

That’s not what CFS is.

That is what I was referring to - a period of lethargic, listless, slow physical being. The "zip" is not there. A few days after terminating consumption of plant-based creamer - back to normal.

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

#136

Post by dahfizz »

majormajor wrote: post #127
dahfizz wrote: post #119

Earlier quoted context omitted.

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.

Neither of us were in the room, but it sounds like the doctors did the former. They diagnosed with FND, a real physical disease (although kind of a catch-all diagnosis with no tests or treatment, like CFS), and recommended that therapy may help.

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

#137

Post by mwerty »

01100011 wrote: post #130
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).

Went through the same decades ago. Was prescribed Vitamin D 50,000 IU, once a week. Helped a lot. Best of luck!

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

#138

Post by anonuser123456 »

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".

Inflammatory responses are well know triggers of ectopic beats… at least according to my cardiologist and IM provider.

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

#139

Post by Wistar »

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…

"Seabiscuit" author Laura Hillenbrand wrote a disturbing (to me) essay entitled "A Sudden Illness" recounting the exact moment of the onset of her struggle with CFS. The apparent precursor infection was strep.

https://www.newyorker.com/magazine/2003/07/07/a-sudden-illne...

Also, Dianna Cowern, "Physics Girl" has been dealing with long COVID and CFS/ME for about a year now. Horrible.

https://twitter.com/thephysicsgirl?lang=en

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

#140

Post by anonuser123456 »

BobbyTables2 wrote: post #31
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…

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 think most general cardiologists know when to send you to an EP. Mine has an EP in his his group and just sends you down the hall.
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