Is there anything I can do to reduce PEM?

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powertool4, having read your question and the thread, I can only say that it confirms my concerns that there is no easy help for us, or even no help at all. Just swell, right?

I've been thinking about posting a question about my condition and a way to solve the problem for... many years actually... but... this would require a description of all of my symptoms and all of my treatments and all of my tests (and there were soooo many). So it's simply impossible to be done. This one time I had to write a detailed description of my symptoms and history - it took 8 hours. Almost no test results were included... And no stupid mistakes, misconceptions that doctors presented.
Yes, reading is faster than writing but the person reading such a long description will likely not grasp the problem in full anyway. Who'd want to read such a long description?

And so every time I have a question, I end up checking with this forum and with google and I somehow manage to find the answer.

And we can concentrate only on certain aspects of your as well as my PEM/CFS problem.
I wouldn't rely on tests too much however. They give a false sense of hope and false sense of being correct. But these were never conclusive for me. And they were misleading for me. The same applies to doctors - a lot of money spent, no results at all, they were almost only unhelpful.

I guess CFS may be defined in this way: the doctors do not help you, only make you worse, haha.
What helped? A thorough analysis of metabolism and trying out many of the conclusions on myself. I spent a lot on supplements. Maybe like 20% of them really worked for me (though they kind of wear off eventually).

So the ultimate answer is to try supplements as well as other methods one after the other, after understanding what side effects they may cause, etc. Thus you may actually to be able to reach a conclusion. After 10 years of this I became quite proficient in counteracting side effects, etc., figuring out what to take, how to take, etc.

But...
I don't do well with supplements
What does that mean? You can't tolerate them? Too many side effects, sensitivities?
If it is so, then it's really a pity because there is no other way. You have to try them out one by one, even if at smaller doses. Even if it takes years. What's the alternative? You have to do something.

I also can't (couldn't) tolerate supplements. I usually have to split a tablet into 4-8 fragments. Or buy very small doses (these are really really not cost-effective, however, so it's better to buy a higher dose and split it). I have to take extraordinary precautions in order not to take an offending component (like rice flour) in a supplement.

But things got better, after some milestones were achieved (ie. I stumbled upon coQ10 among other things). Before coQ10 even a small dose of a supplement was causing me side effects (manganese, comes to my mind, for example), after coQ10 I can take it without such problems.

So, this means that I have to try all of my supplements again. Which won't be that difficult now, but may take a long time. Another such an enabling supplement is vitamin D.

Note that the above are enabling because their scope is so important and so broad. But in your case there may be a supplement that is enabling because you are deficient in it or resisant to it (like in vitamin D resisance) or you simply need much more to see the effect (like in B2 responisive fatty oxidation diseases).

The possibilities are endless here and many times exome sequencing may help find an answer. But in my case it didn't. In my case it's all about the gut and the consequences of the problems with it. Even this coQ10 deficiency - I assume that it's purely a nutritional deficiency.
 

gbells

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Cumin (Cuminum cyminum) works very well for me, both preventing physically-induced PEM and reducing symptoms once PEM has occurred (after forgetting to take it on schedule) and starts working within hours. A level tsp does the trick for me, and lasts 3 days. Sadly, no one else has reported that it works for them, so maybe it's unique to my biochemistry or biophysiology. However, it's cheap and easy to try, and you might even have it already in your kitchen.

If cumin doesn't work for you, then you can try the other PEM treatments listed in the forums, and then try things at random. Since we don't know what causes PEM, and what works for one person doesn't work for another, trying things at random seems just as effective as trying things from unproven theories or anecdotal evidence.

I wonder whether your very severe long-duration PEM has a different mechanism than the more common shorter, less severe type, and the treatments for the latter type might not be effective for you.


Re-reading your posting makes me wonder whether you've triggered a latent virus or other infection, or possibly triggered dysbiosis. Maybe get testing for signs of an infection. For dysbiosis, ask in the gut issues sub-forum: there are people there who are more familiar with the signs of gut problems. I suppose there could be other organ problems that feed back on ME. You might want to get a full examination now; negative results while you weren't experiencing this severe PEM may no longer be valid.

I 2nd the recommendation for curcumin. Remember that it needs to be a highly absorbable form preferably with a longer half life like c3. It works by blocking the NF - KB inflammatory pathway which is used by viruses to inhibit apoptosis. This allows the virus to remain in the body so that the body can't kill it. It is important also not to overdo antioxidants because they interfere with this process. Many patients worsen their condition by using high dose antioxidants which makes them feel better for a day and then triggers a crash the following day.
 
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Archie

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I started supplementing these to get energy , only things in the list i still dont have is ALCAR Acetyl-L-carnitine and Astragalus .

PQQ ¤Support mitochondria
Coenzyme Q10 ubiquinone ¤Support mitochondria
Oral glutathione Jarrow Formulas, Glutathione Reduced ¤Support mitochondria
ALCAR Acetyl-L-carnitine ¤Support mitochondria
Astragalus ¤ Support /protects mitochondria
Vitamin D3 ¤Enhance mitochondria function
Vitamin K (multible forms ) ¤Support mitochondria
Vitamin E ( all natural 8 forms ) ¤ Help with balance mitochondiria oxidation
ALA ¤ improve the structure as well as the function of mitochondria
Beef liver ( vitamin A )
vitamin C
Vitamin B komblex
selenium
magnesium
Iodine

PQQ Pyrroloquinoline quinone should help create new mitochondrias , i just started it and planning to use it non stop for at least next 6 months, possible even rest of my life , one 40mg pill once a day with food ( might not need so strong, 20mg should be also ok )

Oral glutathione 1000-1500mg maybe 3 -4times a day . Also trying to avoid the toxic minefield , food that is not organic ,which i believe is one huge factor behind CFS , toxics can be get from drinks and other sources too thought,from water also . I have a theory that it`s the toxic substances that are the triggers for genes, once some genes are triggered with man made chemicals , bad things to health can start happen, so by trying to avoid the triggers and taking things like Glutathione,ALA, selenium etc i am trying to avoid the triggering event and hope the switch is in time changing to back in to the original position , which is know to be possible after the environmental factors are eliminated . And toxics also directly cause poisoning in the whole body systems .Glutathione is important for detoxification and antioxidant , i would love to use only liposomal glutathione only but it is too expensive for use longer everyday use.

Cold showers also can give boost for energy , and boost immunity also .


I think the rabbit hole go just so deep with the all toxic stuff out there, numerous mechanism inside body how they mess up /cause systemic malfunction, some toxic substances are also immunotoxic, so to me it is no wonder why then body cant anymore keep the viruses at bay .


I dont know does the above help, but you could give a try at least PQQ +Q10 +ALCAR +glutathione+Astragalus if you can , i know it`s hard if cant much tolerate supplements.
 

gbells

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I disagree with taking antioxidants and PQQ. It raises your risk of cancer because you are inhibiting cancer defense.

A large trial reported in 1994 (pdf) that daily megadoses of the antioxidant beta-carotene increased the risk of lung cancer in male smokers by 18 percent and a 1996 trial was stopped early after researchers discovered that high-dose beta-carotene and retinol, another form of vitamin A, increased lung cancer risk by 28 percent in smokers and workers exposed to asbestos.
https://www.scientificamerican.com/article/antioxidants-may-make-cancer-worse/
 
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I disagree with taking antioxidants and PQQ. It raises your risk of cancer because you are inhibiting cancer defense.
gbells, I think you are not entirely correct. The picture is not that simple that we could say: take or do not take antioxidants.

So, what are my reservations?
First of all, the idea is that we, as people suffering from CFS, have a much lower concentration of intrinsic antioxidants. Maybe because we don't make them as efficiently as other people but who cares what the reason really is. So we need to supplement in order to get better. That acquired concentration may still be not enough to cause cancer (because we were deficient in the first place) or we just have to take this risk, at least temporarily, until we get better and can do something else about it.

Second of all, not all antioxidants are created equal. Beta-carotene is this one case where it was proven that it may hurt you (and you have to be a smoker BTW, it's worst for the smokers). You have to consider every antioxidant on a case-by-case basis (eg. check the studies) and see if there are no issues with it. I can tell you right away that there may be problems with selenium and vitamin E - AFAIR both, when taken separately, cause increased cancer rate but together they cooperate and work just fine. As in life - you have to be very careful.

Third of all, not all antioxidants are created equal (again!), because there are simple compounds like vitamins and there are also more complicated ones, like polyphenols. Everybody thinks that their most important function is being an antioxidant but surprise, surprise: it's not. To add to confusion polyphenol strength is measured by antioxidant assays (like TEAC - trolox equivalent antioxidant capacity). The most important function is however this: chemical modification of metabolism, being chemotherapeutic agents, hormetic agents, decreasing insulin resistance, etc., etc.

There is a good explanation why polyphenols exhibit both antioxidant and the other function but as of now I'm getting too sleepy to explain. Maybe tomorrow, if there are requests :sleep:
 

gbells

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If some dosing regimen helped SIEDs patients (perhaps speeding up exercise recovery from crashes) then there should be research validating this theory. My own use of these supps has shown they suppress symptoms for a day then there is a crash.
 
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Archie

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I think the beta-carotene studys, several of them have been debunked years ago

beta carotene study were flawed


Oxidation itself is not the enemy, our mitochondria make energy by oxidation of food , but at same time experts have think that too much oxidation in the mitochondrio can also harm the mitochondria itself, and i think there has been some kind of envoronmental factors for 60-70 years that has impact our bodys to use/make antioxidants , for example heavy metals can cause low glutathione , the master antioxidant in the body, so as mitochondrias are naturally equipped to handle oxidation and ROS, the environment has changed around us so much that the system might be compromised and thus cant anymore do it`s job balancing the whole oxidation/ROS thing.

The optimal situation in mitochondrio requires oxidation to make ATP , but if it goes out from the normal line , issues can follow like damage to mitochondria, cell death etc .
 

gbells

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I think the beta-carotene studys, several of them have been debunked years ago

beta carotene study were flawed


Oxidation itself is not the enemy, our mitochondria make energy by oxidation of food , but at same time experts have think that too much oxidation in the mitochondrio can also harm the mitochondria itself, and i think there has been some kind of envoronmental factors for 60-70 years that has impact our bodys to use/make antioxidants , for example heavy metals can cause low glutathione , the master antioxidant in the body, so as mitochondrias are naturally equipped to handle oxidation and ROS, the environment has changed around us so much that the system might be compromised and thus cant anymore do it`s job balancing the whole oxidation/ROS thing.

The optimal situation in mitochondrio requires oxidation to make ATP , but if it goes out from the normal line , issues can follow like damage to mitochondria, cell death etc .
That counter study is questionable. It doesn't disprove the connection. Also there was another study that confirmed it (see link above). So that makes two studies.

You can't fix broken mitochondria by just smothering them with antioxidants.