• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

What is different between healthy people and PWCs?

Waverunner

Senior Member
Messages
1,079
Yesterday I talked to a friend. He is perfectly healthy, has no allergies, does lots of sports and is in perfect shape. When we talked about his work, he told me something that doesn't go out of my head. Despite the fact that he is perfectly healthy, he said, that there are days, where he has to get up very early in the morning, works (physical) and gets home late at night. He has normal meals but he is so tired then, that he goes to bed early. He doesn't even want to watch TV. His fatigue seems to be very much like PWCs fatigue. In this state, additional tasks just wear him out. In contrast to PWCs however, after one night of sleep he is back at 100% energy. Another thing he said was that when he gets not enough sleep for several days he will suffer from bad concentration and fatigue during the day. Not exactly like brain fog but going into this direction. He is less able to accomplish his tasks as good as he normally does. So in the end, it would be very interesting to know what fatigue actually is and why the bodies of healthy people can suffer from the same fatigue as PWCs (if they work hard enough) do but are able to overcome it within one night. What's the difference? For me it seems that we don't even know what fatigue actually is. ATP, mitochondria, hormones, neurotransmitters?
 
Messages
15,786
I think it's pretty likely that our muscles can't produce and/or recycle energy quickly. But I do think we can store it normally, if we have enough time and are able to be inactive enough.
 

hixxy

Senior Member
Messages
1,229
Location
Australia
I don't believe we can store it properly. My body is unable to build up glycogen stores. this was diagnosed based on a 3 hour glucoses tolerance test with draws of cortisol and insulin at 30 min intervals. This told that I was producing the insulin and cortisol fine, but blood sugar continued to fall.

The cortisol should have signalled the body to pull from glycogen stores. The response was ineffective, meaning either there aren't any glycogen stores, or my ability to access them said stores is impaired. Doctor seemed to think it was the no glycogen stores.
 

RustyJ

Contaminated Cell Line 'RustyJ'
Messages
1,200
Location
Mackay, Aust
I don't believe we can store it properly. My body is unable to build up glycogen stores. this was diagnosed based on a 3 hour glucoses tolerance test with draws of cortisol and insulin at 30 min intervals. This told that I was producing the insulin and cortisol fine, but blood sugar continued to fall.

The cortisol should have signalled the body to pull from glycogen stores. The response was ineffective, meaning either there aren't any glycogen stores, or my ability to access them said stores is impaired. Doctor seemed to think it was the no glycogen stores.

Hi Hixxy, who did this for you, Deed? What was the purpose? Was treatment tailored for this problem?
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Wow, Hixxy, that's interesting. I was diagnosed with hyperinsulinemia because I over produce insulin which causes my glucose to get too low. It comes up but then it takes a dive downwards due to the insulin.

I wonder how many of us have something like this. Dr. Myhill says that her CFS patients have chronic hypoglycemia.

BTW ... even tho I tested positive for this via GTT + insulin, I've found that I can eat fruit, not juice tho, easily. I was limitting my fruit to one peice a day broken up into 3 - 4 servings based on this study and how it made me feel. I slowly increased and and NOW, I'm eating about 5-6 pieces of fruit a day. I feel much better this way ...

So maybe we just over react to sugar or whatever was in that liquid we drank ... or we need the fiber found in fruit to slow down the process ... tc ... x
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I think many of us have glucose tolerence/insulin resistance issues as our hormones are all screwed up. Many issues hormonally eg elevated estrodiol in men can cause insulin resistance. low cortisol was mentioned and can have an effect. Might be why so many of us function better on low carb diets too??

cheers!!!
 

hixxy

Senior Member
Messages
1,229
Location
Australia
Hi Hixxy, who did this for you, Deed? What was the purpose? Was treatment tailored for this problem?

This was ordered by Dr Melvyn Sydney-Smith. Guy is majorly expensive and sent me broke! He loved pathology for pathology's sake. The treatment was a specific compounded amino acid powder to help build glycogen stores up. Didn't really work so well. I've had hypoglycemia problems all my life and it vanished for a short while after abx a while back. So still thing treating the HPA Axis directly (for me at least) is a waste of time. I want that damn infection dead!!
 

hixxy

Senior Member
Messages
1,229
Location
Australia
Wow, Hixxy, that's interesting. I was diagnosed with hyperinsulinemia because I over produce insulin which causes my glucose to get too low. It comes up but then it takes a dive downwards due to the insulin.

I wonder how many of us have something like this. Dr. Myhill says that her CFS patients have chronic hypoglycemia.

BTW ... even tho I tested positive for this via GTT + insulin, I've found that I can eat fruit, not juice tho, easily. I was limitting my fruit to one peice a day broken up into 3 - 4 servings based on this study and how it made me feel. I slowly increased and and NOW, I'm eating about 5-6 pieces of fruit a day. I feel much better this way ...

So maybe we just over react to sugar or whatever was in that liquid we drank ... or we need the fiber found in fruit to slow down the process ... tc ... x

Are you avoiding fructose containing fruits?
 

hixxy

Senior Member
Messages
1,229
Location
Australia
I think many of us have glucose tolerence/insulin resistance issues as our hormones are all screwed up. Many issues hormonally eg elevated estrodiol in men can cause insulin resistance. low cortisol was mentioned and can have an effect. Might be why so many of us function better on low carb diets too??

cheers!!!

I function horrendously on low carb high protein. All the glutamine / glutamic acid sends me brain off the rails. It's possible it's also the ammonia maybe?

I've also read somewhere that a spike in dietary glutamic acid can cause excess insulin release and therefore hypoglycemia. So that lovely reaction isn't exclusive to sugar/carbs.

I feel better eating lots of small meals.
 

adreno

PR activist
Messages
4,841
Maybe the main thing that separate PWMEs from normal people is low NADPH levels.
 

hixxy

Senior Member
Messages
1,229
Location
Australia
I eat protein with each meal, don't get me wrong, but I absolutely have to balance it with carbs! Paleo type diets are just a major no no for me.
 

hixxy

Senior Member
Messages
1,229
Location
Australia
I'm sick of chasing symptoms. Bring on the lipkin study. Also bring on any kind of treatment that fixes this immune mess (GcMAF / Rituximab), or improved pathology for detecting the infections we can't currently detect.

Chasing symptoms and patching yourself up with drugs and supplements endlessly is financially crippling. Not something I can sustain.
 

adreno

PR activist
Messages
4,841
I'm sick of chasing symptoms. Bring on the lipkin study. Also bring on any kind of treatment that fixes this immune mess (GcMAF / Rituximab), or improved pathology for detecting the infections we can't currently detect.

Chasing symptoms and patching yourself up with drugs and supplements endlessly is financially crippling. Not something I can sustain.

You said yourself earlier that there's no single cause of ME. IMO, it's a wastebag diagnosis, a semi-persistent pattern of symptom clusters at best. The cause of your illness is likely to be different from mine. So you'll be waiting a long time for those studies.

Anyway, since no causes are known, we have only the symptoms to work with.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Are you avoiding fructose containing fruits?

I eat protein with each meal, don't get me wrong, but I absolutely have to balance it with carbs! Paleo type diets are just a major no no for me.

Dont all fruits contain fructose ? Is this a trick question ? :confused:
But no, I'm eating most fruits except that I don't eat a lot of those that are high oxalate.

Paleo is meat, veggies and fruits. Basically any food that doesn't have to be processed in order to eat it .. hunter gatherer ... I'm actually on the WAHLS diet now which is a version of Paleo and I'm getting plenty of everything from this diet. I was actually surprised that eating a ton of dark leafy greens seems to help my digestion .. duh ...

tc ... x

PS back to the original thread ... IF this healthy person gets sick with a cold, flu, etc he's going to feel like we do. The difference being that his body will recover and he'll go back to getting tired like a normal person.
 

Waverunner

Senior Member
Messages
1,079
I'm sick of chasing symptoms. Bring on the lipkin study. Also bring on any kind of treatment that fixes this immune mess (GcMAF / Rituximab), or improved pathology for detecting the infections we can't currently detect.

Chasing symptoms and patching yourself up with drugs and supplements endlessly is financially crippling. Not something I can sustain.

It's not only a financial burden but also very annoying because you never treat the cause but only a consequence. While you may fix one symptom, others may appear. Moreover the human body is complex and we have many systems that work synergistically, so it's always best to start fixing problems at the deepest level because higher level treatments will not be required then.