Exertion is unrelated to me/cfs symptoms / crashes

[Grip]

I wanted to share a recent epiphany:

physical and mental exertion is unrelated to me/cfs symptoms and crashes. At least for the type I am personally familiar with (and there is ample evidence that this is a widely pervasive type), Me/cfs is to near certainty an autoimmune disease. Regardless of how much mental or physical exertion is made or not made, the symptoms / crashes will occur all the same. There is no connection.

One caveat: with physical exertion such as strenuous exercise, I’m given to understand that a normal immune response is the release of cytokines and/or other immune agents. Thus, in the short term, exercise can possibly exacerbate symptoms. On the other hand, the more the body becomes accustomed to exercise, the lesser and more diminished this immune response becomes, thus consistent exercise should increase symptom management and tolerance in the longterm. For mental exertion however, there is absolutely no connection.

The misguided notion that exertion triggers me/cfs symptoms is a remnant of the unwillingness to accept that in many cases, me/cfs is, and should be medically treated, as a severe autoimmune disease, with strong immunosuppressive therapy. Lobbying the medical community to handle it as such is essential for improving and saving the lives of so many patients.

Sending you all much support and strength.

 

[Rufous McKinney]

the more the body becomes accustomed to exercise, the lesser and more diminished this immune response becomes, thus consistent exercise should increase symptom management and tolerance in the longterm.

I have not found this to be true in my case, altho I do believe there is a strong autoimmune component to the illness.

I also believe there can be a strong mechanical component. Perhaps not in everyone, but a subset.

 

[keepontruckin]

Something emotionally upsetting can cause big crashes too.

 

[Rufous McKinney]

I will always wonder, when I got so much worse a few years ago, if the severe gastroperesis events literally just really messed up my lower brain stem/neck/spinal cord and created a whole MESS that took at least 50 years to develop.

Florida Neck Guy: might agree with me....

 

[Murph]

I wanted to share a recent epiphany:

physical and mental exertion is unrelated to me/cfs symptoms and crashes. At least for the type I am personally familiar with (and there is ample evidence that this is a widely pervasive type), Me/cfs is to near certainty an autoimmune disease. Regardless of how much mental or physical exertion is made or not made, the symptoms / crashes will occur all the same. There is no connection.
.

For severe people, they will often be in a crash whether or not they exert. But that crash can get worse if they do exert!. For mild-moderate people, they can avoid symptoms by pacing.

Fatigue that has no relation to exertion is not going to be defined as ME/CFS under the canadian consensus criteria. I agree there are autoimmune diseases where fatigue can be improved by exercise. These are not ME/CFS.

 

[GreenEdge]

Physical and mental exertion causes inflammation. Somehow this interrupts sleep which I think causes most of our symptoms. Adapting to physical and mental exertion by pacing if done successfully improves our resilience but can also very easily trigger a crash. I would suggest waiting a week before repeating any particular exercise.

I don't believe in immunosuppressive therapy. Inflammation is part of the healing process in which your body adapts to the stimulus and gets stronger. Suppress the inflammation with say vitamin C (a powerful anti-inflammatory) and you will suppress the adaption and not get stronger.

The inflammation in our digestive track is chronic and unnatural. Leaky Gut Syndrome is believed to be the cause of all autoimmune conditions. The Lion Diet (the ultimate elimination diet) has been successful in reversing all autoimmune conditions by reducing inflammation and helping the gut to heal.

 

[Wishful]

I’m given to understand that a normal immune response is the release of cytokines and/or other immune agents.

This part I agree with. My physically-induced PEM seemed to come only from exertion that would damage muscle cells and thus activate an immune response, but not from simple exertion. The 24 hr delay was consistent with the rise in IFN-g expected from exertion.

Me/cfs is to near certainty an autoimmune disease.

This part I'm not convinced of. I agree that the immune system is involved in some way, but not necessarily an autoimmune response. I'm not sure of the state of the art of immunology: can existing tests reveal if an autoimmune response is involved, or is that still too difficult?

Furthermore, immunosuppressants don't seem to reliably reduce ME symptoms, so that seems to be evidence against it being an autoimmune disease.


I'm not sure whether cognitive exertion (or emotional spikes) triggers immune activation in the brain. Neural activity does influence (stresses? activates?) the brain's immune cells (glial), so that could explain why cognitive exertion triggers the same symptoms as cytokines from elsewhere in the body. My cognitively-induced PEM caused the same symptoms as my physically-induced PEM, but instead of a consistent 24 hr delay, it was variable and could be less than one hour. To me that's consistent with physical exertion's delay in releasing cytokines which then trigger glial activation.

me/cfs is, and should be medically treated, as a severe autoimmune disease, with strong immunosuppressive therapy.

I'm pretty sure it's been tried, and not gotten reliable results. Does anyone know more details? I tried cyclosporin (strong immunosuppressant) and it had no noticeable effect. Later I discovered that it doesn't cross the BBB. I'm not even sure that it should affect glial cells even if it did cross the BBB.

 

[Wishful]

Somehow this interrupts sleep which I think causes most of our symptoms.

I have to disagree with that hypothesis too. I occasionally have good sleep, but that doesn't affect my ME symptoms any more than a lack of good sleep does. I think I have close to zero correlation between my sleep quality and my ME symptoms. My present 'more likely to have insomnia' issues may be the result of my ME, or may not be, or may be so far downstream of ME that it's only very indirectly related.

It's too bad that we don't have any drugs or techniques that can more or less guarantee good quality sleep. Well, for lots of reasons, but in this case it would be a good test for the 'sleep causes ME symptoms' hypothesis.

 

[Rufous McKinney]

but that doesn't affect my ME symptoms any more than a lack of good sleep does.

I believe the lack of proper cleansing of the brain, is a key factor and that is being influenced negatively by our non-refreshing sleep syndrome.

What is causing that is another issue altogether.

 

[Wishful]

I believe the lack of proper cleansing of the brain, is a key factor

I have counterevidence for that hypothesis. If waste accumulation due to poor sleep was causing our symptoms, reducing those symptoms would require a period of proper sleep. I had several temporary remissions without a sleep period. I took T2, and within an hour, all the ME symptoms were gone. It's too unlikely that T2 would have flushed out or neutralized all those waste products in less than an hour. I can't recall whether the symptoms returned before the next sleep period.

 

[GreenEdge]

me/cfs is, and should be medically treated, as a severe autoimmune disease, with strong immunosuppressive therapy.

That would increase our risk of cancer (4-500 fold) and latent viruses, etc.
See: Immunosuppressive drugs and cancer (pubmed)

 

[Viala]

Physical and mental exertion causes inflammation. Somehow this interrupts sleep which I think causes most of our symptoms.

I didn't notice that symptom myself. Once I regulated my circadian rhytm, I sleep regular amount of hours and wake up early, as long as I follow rules that don't disrupt circadian rhytm. For a long time I couldn't wake up earlier, but that was because I readjusted over the years to it. But the sleep is still not refreshing.

 

[GreenEdge]

@Wishful and @Viala, thanks for your insights. I rarely get 5 hours or more myself. When I do, I can't say it makes much difference. What I have noticed is when I do over exert myself physically, that night I often get no sleep and this can continue for several days. Like when sleep is needed the most, I can't get any. When I do eventually get some sleep, I certainly feel better for it, but I don't feel ready to exert myself again.

I don't use Lyrica anymore, but I do still have some in the fridge. I have found it helps when I can't get any sleep. Today I over did exercise, so I'll try using it tonight as I need to take break from cannabis anyway - to restore it's effectiveness.

 

[Viala]

@GreenEdge Five hours of sleep is not much. Have you tried taurine, gaba, magnesium?

 

[GreenEdge]

@GreenEdge Five hours of sleep is not much. Have you tried taurine, gaba, magnesium?

Yes, Magnesium Taurinate and Baclofen - a (GABA)-B agonist.

 

[Viala]

Yes, Magnesium Taurinate and Baclofen - a (GABA)-B agonist.

Ok there's still taurine, a dose like 1g to 3g daily. I'm not sure if magnesium taurinate works the same as taurine. Anyways the safest route for you would be to stop overexerting for now and pace a bit, and I would look into why you sleep only 5 hours a day.

 

[GreenEdge]

Magnesium taurinate is magnesium attached to taurine. Magnesium can't be absorbed by human body unless attached to something. Fun fact:- elemental magnesium is so reactive that on contact with water it will react with the oxygen and produce fire.

You're spot on. I need to stop overexerting and practice pacing.

 

[Garz]

Fun fact:- elemental magnesium is so reactive that on contact with water it will react with the oxygen and produce fire.

i think you may be confusing magnesium with sodium or potassium

these will spontaneously ignite if dropped in water - magnesium will not ( it will burn with an exceedingly bright light if heated to white heat in the presence of oxygen - so perhaps this is where the confusion is coming from)

by the way, we absorb simple ionic salts of potassium and sodium just fine - so i am not sure a metals reactivity with oxygen is a good guide for our bodies ability to absorb it.

 

[Wishful]

What I have noticed is when I do over exert myself physically, that night I often get no sleep

For me, physical or cognitive exertion past ~2:30 PM will trigger insomnia. Exertion before that doesn't. It doesn't take much exertion; even simple handwork (unscrewing some screws) at the wrong time will make me wake up at 1 AM or so. It may be different for you, but you could experiment with doing necessary exertions at different times of day.

 

[Wishful]

these will spontaneously ignite if dropped in water - magnesium will not

To make it more confusing, magnesium burns hot enough to dissociate water and then combine with the oxygen, so water won't extinguish a magnesium fire. Most hot water tanks contain a magnesium rod, so obviously it doesn't spontaneously ignite in water.