Exercise induced relapse - autoimmune theory?

[Spindrome]

Hi all,

I suffered a big relapse 2 years ago after I did some yoga.
I know that exercise induced relapses are common in people with ME, made worse by GET for example. I've not been able to find any references or discussion on how exercise could be causing these relapses and what could potentially be going on biologically. I'm interested in anybody's thoughts or if there have been any other discussion I've missed on here.

Here is my own personal view which is obviously pure speculation (it's difficult not to when you are in this position):

Autoimmunity seems to be a popular theory for the disease mechanism of at least a subset of ME patients e.g. Rituximab. It doesn't seem to be much of a jump to think that an exercise induce relapse could be an autoimmune response to some component of exercise.

Im also interested in the treatment implications, For example Could people who have had an exercise induced relapse be potential responders to Rituximab? I did have some benefit from LDN but was unable to tolerate due to side effects.

Any thoughts would be most welcome.

 

[ljimbo423]

Hello @Spindrome - Here is a quote from Chris Armstrong, one of the leaders in cfs/me research-

"Well we all experience a bacteremia when we exercise. The type of bacteria that enter your bloodstream are usually quite controllable by your immune system but if your gut is further compromised they may release more bacteria into your blood or more pathogenic species or your immune system may already be depleted.

This is the concept for the chronic sepsis or SIRS and this is what I think may be behind PEM."

LINK

After many years of research I have reached the same conclusion. I don't know how long you have had cfs/me but I think over time, at least a few years. The innate immune system becomes exhausted from fighting the lipopolysaccharides(LPS) getting into the bloodstream from bacteria in our gut, causing an immune system imbalance and symptoms, as Chris suggests.

The first few years of the illness appears to effect the immune system by causing the innate immunity to be overly active and cause symptoms.

After a few years though, the innate immunity becomes exhausted, creating the opposite imbalance and symptoms. I think an immune system imbalance, is causing symptoms and actually, an immune system imbalance is the underlying cause of autoimmune disease. Which makes those of us with cfs/me, more vulnerable to autoimmune illness.

Mady Hornig, another leader in cfs/me research, recently put out a paper showing that in the first few years of illness certain cytokines are high, but after that, the same cytokines are low, as if the immune system had become "exhausted".

“It appears that ME/CFS patients are flush with cytokines until around the three-year mark, at which point the immune system shows evidence of exhaustion and cytokine levels drop,”

LINK

I am having good success in boosting my innate immune system with Reishi, a medicinal herb and treating the dysbiosis that is causing my leaky gut or the LPS to get into my bloodstream and disrupt my immune system, causing symptoms. Reishi helps to re-balance my immune system and lessen symptoms, primarily giving me more energy.

However, if you have been sick less than 3 years you would probably need to take herbs that boost your adaptive immunity, rather than your innate immunity, because the innate immunity is high for the first 3 years, according to Hornig.

 

[Spindrome]

Great thanks for all the info I was aware of the Hornig paper I will be coming Upto the 3 year mark soon, which is a concern. I will check out the Chris Armstrong link looks very interesting.

I'm looking into healing a leaky gut and an antifmlamatory/autoimmune diet as well. I think I may have had a leaky gut/poor absorption before I got ME.

 

[ljimbo423]

You're welcome.

I'm looking into healing a leaky gut and an antifmlamatory/autoimmune diet as well. I think I may have had a leaky gut/poor absorption before I got ME

It sounds to me like you are on the right track! I am quite sure,now, that I had dysbiosis and a leaky gut, years before I got cfs/me. I don't think that's a coincidence. I think as time went by, the dysbiosis and leaky gut got worse and I developed cfs/me.

 

[RogerBlack]

Im also interested in the treatment implications, For example Could people who have had an exercise induced relapse be potential responders to Rituximab? I did have some benefit from LDN but was unable to tolerate due to side effects.

LDN is to Rituximab as a tickle with a feather is to a hammer.

Rituximab helps a large fraction of CFS patients, to a level that no other treatment has - the effects are not 'maybe it's helped me', or 'some benefit' as I understand it.

The problems are that it is a expensive drug, requiring IV administration, and monitoring while its being given.