Amy Proal at the IACFS/ME - summary

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Amy Proal, PhD, was one of the most exciting speakers at IACFS/ME 2021. Here is a summary of the key aspects of her talk:

- ME/CFS is mostly triggered by an infectious agent (virus, bacteria like lyme, environmental exposure (toxins, mold) — but it may also be a result of injuries leading to structural issues (CCI, AAI, TCS)

- The different causes of disease onset/triggers seem to be responsible for different etiologies of ME/CFS

- In most cases the immune system can not fully clear the infection --> chronic low-level inflammation --> even when the infection is over, there is a pathogen reservoir remaining mostly in the tissues --> evidence for persistent infection with EV and HHV and Covid-19 --> hard to find these viruses; simple blood tests are often not going to identify them, because pathogens can clear from the fluids (where the immune system is more active) and hide in tissues and infect nerves (HHV and some EV are neurotropic) --> the gut is an important reservoir --> EV can directly infect brainstem via cranial nerves like vagus nerve

- The chronic inflammation is picked up by the vagus nerve (which can sense infection/inflammation in any organ) which sends it as a signal to the dorsal brain stem --> activation of microglia

- The vagus nerve senses persistent infections/inflammation and activates the”sickness circuitry” responsible for the flu-like feeling

- Persistent pathogens can produce proteins that can directly interfere with gene expression (transcription and translation), they can dysregulate the immune response

- Most pathogens directly influence the metabolism of the cell they infect --> viruses must pool materials for replication purposes from glycolysis from mitochondria (TCA cycle). -->Metabolic output of the infected cell is changed
- The root cause of autoantibody generation is due to molecular mimicry -->proteins expressed by pathogens which are similar to human proteins



Then she kind of sums up:

All those different triggers (pathogens, stress and injuries) cause glial activation, mast cell activation and stimulation of that brainstem circuitry (this sickness circuitry) --> different “hits” stimulate the same circuitry and simultaneously slow down the immune response --> each exposure makes it easier for the next exposure to cause problems --> immune system is knocked out after ongoing “hits” of different stressors (pathogens, stress, injuries)

- All these “hits” collectively cause microglia priming and the next “hit” amplifies the signal that arrives at the brain

All in all she says that no two people will have the same mix of “hits” that contributes to ME/CFS
She says we need to treat the underlying root causes driving the microglia priming that is causing the neuroinflammation.



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For me that all makes so much sense that I decided to share it. It's an explanation for what I often said here that we don't have the same pathogenesis and as a consequence, we don't have the same blood results and symptoms differ and ergo the treatment that works for you doesn't necessarily work for me.
 
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Oliver3

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Amy Proal, PhD, was one of the most exciting speakers at IACFS/ME 2021. Here is a summary of the key aspects of her talk:

- ME/CFS is mostly triggered by an infectious agent (virus, bacteria like lyme, environmental exposure (toxins, mold) — but it may also be a result of injuries leading to structural issues (CCI, AAI, TCS)

- The different causes of disease onset/triggers seem to be responsible for different etiologies of ME/CFS

- In most cases the immune system can not fully clear the infection --> chronic low-level inflammation --> even when the infection is over, there is a pathogen reservoir remaining mostly in the tissues --> evidence for persistent infection with EV and HHV and Covid-19 --> hard to find these viruses; simple blood tests are often not going to identify them, because pathogens can clear from the fluids (where the immune system is more active) and hide in tissues and infect nerves (HHV and some EV are neurotropic) --> the gut is an important reservoir --> EV can directly infect brainstem via cranial nerves like vagus nerve

- The chronic inflammation is picked up by the vagus nerve (which can sense infection/inflammation in any organ) which sends it as a signal to the dorsal brain stem --> activation of microglia

- The vagus nerve senses persistent infections/inflammation and activates the”sickness circuitry” responsible for the flu-like feeling

- Persistent pathogens can produce proteins that can directly interfere with gene expression (transcription and translation), they can dysregulate the immune response

- Most pathogens directly influence the metabolism of the cell they infect --> viruses must pool materials for replication purposes from glycolysis from mitochondria (TCA cycle). -->Metabolic output of the infected cell is changed
- The root cause of autoantibody generation is due to molecular mimicry -->proteins expressed by pathogens which are similar to human proteins



Then she kind of sums up:

All those different triggers (pathogens, stress and injuries) cause glial activation, mast cell activation and stimulation of that brainstem circuitry (this sickness circuitry) --> different “hits” stimulate the same circuitry and simultaneously slow down the immune response --> each exposure makes it easier for the next exposure to cause problems --> immune system is knocked out after ongoing “hits” of different stressors (pathogens, stress, injuries)

- All these “hits” collectively cause microglia priming and the next “hit” amplifies the signal that arrives at the brain

All in all she says that no two people will have the same mix of “hits” that contributes to ME/CFS
She says we need to treat the underlying root causes driving the microglia priming that is causing the neuroinflammation.



-----------------
For me that all makes so much sense that I decided to share it. It's an explanation for what I often said here that we don't have the same pathogenesis and as a consequence, we don't have the same blood results and symptoms differ and ergo the treatment that works for you doesn't necessarily work for me.
Thanks for that. Intuitively sounds right
 

Irat

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I have watched some stuff of Amy few years ago.she had ME herself and recovered with different antiviral and antimicrobial protocols as far as I can remember..but I honestly can t see anything new which isn't already out there she talks about kindling, and that other "hits" like physical,psychological ,environmental toxins can lead to ME.

Even Medical Medium puts out everything about the inflamed vagus nerv and how pathogens hide in tissues and organs and can t be detected by blood work.and explains different pathogens and the microbes and the neurological symptoms cause by viral neurotoxins(where ever he has his information from,lol ,because of course I don t believe in his ghost)


But she is nice, enthusiastic and the community needs ppl like her


But not everyone of course is able to do all the research themselves and find out through tests what are the different causes So it's soooooooo important that we finally have doctors who are informed and help patients,This is most important .
 
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but I honestly can t see anything new which isn't already out there
No, that's right. I just thought it would be a good summary of a thesis that I sympathize with. And for me personally it provides hope that I can do something and I thought maybe the same would be true for someone else here who reads it.
she had ME herself and recovered with different antiviral and antimicrobial protocols
That's new to me. I feel that's encouraging.
 

Irat

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No, that's right. I just thought it would be a good summary of a thesis that I sympathize with. And for me personally it provides hope that I can do something and I thought maybe the same would be true for someone else here who reads it.

That's new to me. I feel that's encouraging.
Yes it's a very good summery,and exactly how I think about ME,MCS etc...,.I was in remission myself (by different natural treatments) but now I m so f.....ed.....that I can t use anything I know and helped me once....but I encourage everyone keep trying ,there is already so much help out there...it just needs to resonate with oneself and every one is different
 
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Oliver3

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Yes it's a very good summery,and exactly how I think about ME,MCS etc...,.I was in remission myself (by different natural treatments) but now I m so f.....ed.....that I can t use anything I know and helped me once....but I encourage everyone keep trying ,there is already so much help out there...it just needs to resonate with oneself and every one is different
Can I ask which supplements you used?.
I've had like mini mini remissions. Like with quercetin, or high vit c, or chlorella with antidepressants. Aspirin
Literally a day of feeling normal. But then they stop working. Its like there's some mechanism trying to override the antiinflammatory nature of the stuff I'm taking..then it seems harder to exist at the new baseline, just for that days relief
 

seamyb

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It's an explanation for what I often said here that we don't have the same pathogenesis and as a consequence, we don't have the same blood results and symptoms differ and ergo the treatment that works for you doesn't necessarily work for me
Which has the profound implication that the medical establishment has failed, neglected and even abused people with not one disease, but several and possibly many. All because of that one symptom we all share - fatigue.

After all, everybody gets tired sometimes.
 
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Which has the profound implication that the medical establishment has failed, neglected and even abused people with not one disease, but several and possibly many. All because of that one symptom we all share - fatigue.

After all, everybody gets tired sometimes.
This term “fatigue” is one I will never get. It describes ME as accurately as cancer.
 

Irat

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Can I ask which supplements you used?.
I've had like mini mini remissions. Like with quercetin, or high vit c, or chlorella with antidepressants. Aspirin
Literally a day of feeling normal. But then they stop working. Its like there's some mechanism trying to override the antiinflammatory nature of the stuff I'm taking..then it seems harder to exist at the new baseline, just for that days relief

What helped me does n t mean it will help you.for example if you have mold toxicity,does n t make sense chelate mercury and the other way round,or everyone has different success with different diet,if you don t have MCAS does n t make sense taking mast cell stabilizers and so on.

My story is really long and my first trigger which caused neurotoxicity and ME was an SSRI.i was hospitalized 3 times and had 200 plus symptoms ,first started with tons of tests.i was a nurse and knew a good doctor which did everything......first 3 years I could not concentrate on my healing,I was too sick and mostly bedbound.so weak that i could not brush my teeth,later the days I was able to go out and get some fast food in my street ,as I could not cook, I did wear my pyjamas under the jacket.

Anyway.....what I tried over the years was akkupunkture,homöophaty,hypnotherapy first ..with this i was able zu function more and could start to cook,First many soups i could put in the freezer.i went fully plant based with tons of herbs and teas for my specific symptoms i researched ,later focused on healing my gut and went more meat based,bone broth and ate liver.Supplements I only took zink,Vit C and chromium piccolinate for my blood sugar problems.

Most important for me was going fully off the internet ,no smartphone at one point and started a very strict routine ,but of course still collapsed many hours in bed .but I got better and better,started reading books I like,knitting for hours ,painting and going with a friend every morning into the forest .I also did lots of sun exposure .

I still had flu like symptoms ,PEM, and needed to rest a lot.

But by year 6 I felt pretty much normal.and I could hike,which was my hobby etc

There were some more trial and error stuff I did,I can t remember.it was a long journey .

Unfortunately I had to take an Antibiotic 4 years ago and it f...ed me up beyond repair,80 percent bedbound plus severe MCS,MCAS
 
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going with a friend every morning into the forest
I've seen studies showing that “foresting” increases BH4 and NK cell activity.

But your nearly remission story sounds a lot like most remission stories. What I mean is that ppl who recover do usually not rely on one treatment. I've talked with Raelan Agle again (after around 6 months) and she told me that all the ppl she interviewed who recovered/got much better focused on many things. Including mental health (only as a piece of the pizza)
 

Irat

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I've seen studies showing that “foresting” increases BH4 and NK cell activity.

But your nearly remission story sounds a lot like most remission stories. What I mean is that ppl who recover do usually not rely on one treatment. I've talked with Raelan Agle again (after around 6 months) and she told me that all the ppl she interviewed who recovered/got much better focused on many things. Including mental health (on0ly as a piece of the pizza)
Yes,but it took me 6 years to get there.i can say that the forest,and no internet helped me most in the last phase.i also had a dog ( which was the first 3 years with my mum and later i had a dog walker) but this routine at one point going evey day in the forest and having good talks with a stable ,calm friend helped so much....definetely.better
than every therapy
 
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Yes,but it took me 6 years to get there.i can say that the forest,and no internet helped me most in the last phase.i also had a dog ( which was the first 3 years with my mum and later i had a dog walker) but this routine at one point going evey day in the forest and having good talks with a stable ,calm friend helped so much....definetely.better
than every therapy
Do you have any explanation/idea why it stopped working?
 
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Yes, I had to take an Antibiotic and a jaw surgery,this made me very sick,but the straw that broke the camel back while trying recovering from the antibiotic was a shoe spray which gave me MCS and MCAS.
I'm sorry to hear that. Do you think implementing your old treatment plus maybe sth new can bring you back?
 

Oliver3

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What helped me does n t mean it will help you.for example if you have mold toxicity,does n t make sense chelate mercury and the other way round,or everyone has different success with different diet,if you don t have MCAS does n t make sense taking mast cell stabilizers and so on.

My story is really long and my first trigger which caused neurotoxicity and ME was an SSRI.i was hospitalized 3 times and had 200 plus symptoms ,first started with tons of tests.i was a nurse and knew a good doctor which did everything......first 3 years I could not concentrate on my healing,I was too sick and mostly bedbound.so weak that i could not brush my teeth,later the days I was able to go out and get some fast food in my street ,as I could not cook, I did wear my pyjamas under the jacket.

Anyway.....what I tried over the years was akkupunkture,homöophaty,hypnotherapy first ..with this i was able zu function more and could start to cook,First many soups i could put in the freezer.i went fully plant based with tons of herbs and teas for my specific symptoms i researched ,later focused on healing my gut and went more meat based,bone broth and ate liver.Supplements I only took zink,Vit C and chromium piccolinate for my blood sugar problems.

Most important for me was going fully off the internet ,no smartphone at one point and started a very strict routine ,but of course still collapsed many hours in bed .but I got better and better,started reading books I like,knitting for hours ,painting and going with a friend every morning into the forest .I also did lots of sun exposure .

I still had flu like symptoms ,PEM, and needed to rest a lot.

But by year 6 I felt pretty much normal.and I could hike,which was my hobby etc

There were some more trial and error stuff I did,I can t remember.it was a long journey .

Unfortunately I had to take an Antibiotic 4 years ago and it f...ed me up beyond repair,80 percent bedbound plus severe MCS,MCAS
Ah...I've tried all that n more my friend. Thanks for taking the time to reply.
I think there's a fault deeper than what we realise. Ron Davies has eds and had a viral infection of the heart as a kid. His son is sick.
Same thing with my mum, the heart infection and I'm sick.
There's some connection I'm sure between connective tissue and the ease with which viruses can hideaway me
. Healthy people don't react like we do to antibiotics. There's something deeper that allows the virus a foothold, or allows mould etc