The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome (Hanson, 2023)

[Judee]

Got to 85%, and have stayed that way.

Are you saying you haven't needed to keep taking the lambda to maintain the gains?

Also do you have anyone else in the initial group that stuck with it and are also improved like this?

Plus, you were taking something else at the same time, iirc. How much do you think it contributed to your improvement and do you think you would have improved even w/o that other? Did others improve w/o it?

 

[godlovesatrier]

Dr Bansal is convinced I have an entereovirus. But whether my body cleared it and now has other issue is a mystery, also a mild patient it's hard to know for sure. And without being in america accessing testing is pretty difficult. MAybe one day I'll fly stateside to get them

 

[consuegra]

Connected to, but that doesn't mean that it was the actual cause of ME. Since people develop ME without signs of viral infection, it could just be that some viruses are better at setting the stage for ME's core dysfunction to switch into the ME state. Other viral infections could be better at making ME symptoms more severe, but that's just adding to the baseline ME symptoms.

I understand what you are saying.

However if you were a parent whose adult daughter has ME, and that daughter has had consistently high viral titers via ARUP labs to Cox B3 and B4 for over twenty years, and have a son who is type one diabetic, and the father himself has elevated titers for Coxsackie B4, with microscopic colitis, you might give it some thought. Something went through my family at some point and registered with three people. What concerns me is that no one has given it any serious thought besides Dr. Chia and Dr. Enlander. The general and rapid dismissal is too predictable and superficial.
Chris

 

[sometexan84]

Are you saying you haven't needed to keep taking the lambda to maintain the gains?

Also do you have anyone else in the initial group that stuck with it and are also improved like this?

Plus, you were taking something else at the same time, iirc. How much do you think it contributed to your improvement and do you think you would have improved even w/o that other? Did others improve w/o it?

I haven't taken Lambda in months and have maintained the gains. However I have started feeling a bit more tired lately. Not sure if that's a random thing or if I'm starting to go back in opposite direction.

Bunch of people from initial group saw significant gains, then it plateaued, even while still on the Lambda. But the thing is (and we didn't know at that time), most of the Lambda was very low active protein content. I think the later batches were the worst. So it was Lambda but was inactive.

Yes I was doing GS + Lambda.

But this is getting off the topic of this thread a bit, so we should prob keep that in mind.

 

[unto]

Connected to, but that doesn't mean that it was the actual cause of ME. Since people develop ME without signs of viral infection, it could just be that some viruses are better at setting the stage for ME's core dysfunction to switch into the ME state. Other viral infections could be better at making ME symptoms more severe, but that's just adding to the baseline ME symptoms.

hi, about 50% of people who have had Covid19 didn't realize they had encountered the virus......, this may very well have occurred due to the germ(virus?) that causes ME/cfs, i.e. many people who have ME may not remember a viral onset simply because, when it happened, they mistook it for a normal cold/flu, or because they had no symptoms at all...... in fact the classic symptoms of ME, in my experience, came months after the onset; those like me who have a clear memory of when it all began (Dr. Maureen Hanson could verify this) they remember it because from that moment on they were no longer able to achieve full health....
I think that our illness is not due to the "terrain" prepared (by trauma, viruses, genes.....) but is simply caused from an unknown and persistent virus....., this would perfectly explain why it is not detected in the bodies of patients and the many relapses of which we are victims...... The hope is that "serious" researchers will start looking for it in tissues favored by the virus such as: brain-marrow, nerves, heart, lungs, kidneys... We patients should organize a powerful network, between clinicians (who select), microbiologists who with means of precision and passion scrutinize the tissues donated by ourselves.
Good night

 

[Wishful]

but is simply caused from an unknown and persistent virus....., this would perfectly explain why it is not detected in the bodies

I'm not convinced that persistent viral infections can completely switch off over a period of minutes, and then switch on 100% again some hours after that. Also, my temporary remissions were triggered by at least three completely different chemicals, (prednisone, cuminaldehyde, and T2), and I don't think that fits persistent viral theories either. To me, a positive feedback loop among some cellular mechanism is a better fit.

I'm presently still fighting (persistent cough and congestion) a flu virus, but it didn't have much effect on my ME symptoms. Would the immune systems going to all-out war against one virus not have an effect on a "hidden, persistent" virus?

 

[Osaca]

I'm presently still fighting (persistent cough and congestion) a flu virus, but it didn't have much effect on my ME symptoms. Would the immune systems going to all-out war against one virus not have an effect on a "hidden, persistent" virus?

This is actually something that should be able to be answered from anecdata of Post-Ebola patients. It's not part of any post-Ebola studies, since that's also a dramatically underfunded field of study, but there should be some anecdotal stories researchers should know about.

In HIV my hunch would be that the answer is no, possibly the same for persistent HepC or other viruses?

 

[hapl808]

I'm not convinced that persistent viral infections can completely switch off over a period of minutes, and then switch on 100% again some hours after that. Also, my temporary remissions were triggered by at least three completely different chemicals, (prednisone, cuminaldehyde, and T2), and I don't think that fits persistent viral theories either. To me, a positive feedback loop among some cellular mechanism is a better fit.

I'm also not convinced that persistent viral infections explain all of ME/CFS. I think it very well may be involved, but more likely a part of the picture rather than the whole thing. In other words, like MS seems correlated with EBV, but obviously not everyone who gets EBV develops MS. So possibly we have dysfunction immune systems that can't fight normal persistent viruses, but then the solution may be fixing the immune system rather than eradicating all viruses (although that sounds nice, too).

 

[unto]

I'm not convinced that persistent viral infections can completely switch off over a period of minutes, and then switch on 100% again some hours after that. Also, my temporary remissions were triggered by at least three completely different chemicals, (prednisone, cuminaldehyde, and T2), and I don't think that fits persistent viral theories either. To me, a positive feedback loop among some cellular mechanism is a better fit.

I'm presently still fighting (persistent cough and congestion) a flu virus, but it didn't have much effect on my ME symptoms. Would the immune systems going to all-out war against one virus not have an effect on a "hidden, persistent" virus?

hi, I don't know if those substances can cure your ME, we are all a little different in terms of the disease; I also think because each of us has our own health history, for example: some have not encountered any herpes virus, some only some, some all, our microbiome are different, our genes also so one substance helps you and another it helps me, but it doesn't heal us...... many viruses/bacteria/fungi survive many colds/flus that over the years patients have had... some herpes viruses for example strengthen (HSV1/2) and manifest themselves during influenza....

HCV and HIV are not damaged by the immune storms we have during the flu, on the contrary...... when I have the flu or a cold it seems that I can return to a certain normality but it is only an appearance due to the fact that the symptoms of the virus prevail over those of ME which seem to disappear .

good night (to those who live in Europe)

 

[Wishful]

So possibly we have dysfunction immune systems that can't fight normal persistent viruses,

I've had occasional cold sores all my life, and the frequency didn't seem to change following ME. I think I had fairly normal numbers and severities of colds and flues as a child, but fewer and less severe than typical in adulthood, before and during ME. From that, it doesn't seem that my immune systems are responding abnormally to common infections. Response to bacterial and fungal infections seems fairly normal too.

My vague hypothesis is that ME involves a feedback loop in some part of one of the immune systems, probably glial. Instead of returning to normal after an immune activation event, something keeps some part of the immune cells locked into an abnormal state, with various effects downstream of that.

but then the solution may be fixing the immune system rather than eradicating all viruses

That's my feeling too: that eradicating one or more viruses might fix a few PWME whose ME could switch off if not for persistent immune activation, but it wouldn't actually cure them of ME, and a new infection, possibly from a different virus, could restart it. Avoiding allergens avoids the symptoms of allergy, but it doesn't cure the allergy.

 

[Wishful]

hi, I don't know if those substances can cure your ME,

Since I still have ME, they obviously didn't cure me. The cuminaldehyde did permanently cure my PEM and cured the problem that the T2 was treating, so it certainly did something. It did convince me that while PEM is a very common symptom of ME, it's not part of the mechanism keeping us locked in the ME state.

 

[godlovesatrier]

Dr Bansal thinks this is what I have and yet if its true I wonder which one as I am still mild at this point. If it is an EV my body must be capable of keeping it relatively subdued if I control symptoms appropriately.

Be amazing to have a blood test or something that would test for a variety of these things, like the old neutralization test before it almost entirely disappeared.

 

[Bobby Peru]

Dr. Chia always speaks of multiple hits.

This intrigues me. Is there a specific document or study where he lays this out?

 

[Oliver3]

https://www.statnews.com/2023/10/16/long-covid-brain-fog-serotonin-interferons/

How relevant is this...if I understand this correctly, this is about a lack of tryptophan causing the plethora of issues?

 

[sometexan84]

This intrigues me. Is there a specific document or study where he lays this out?

There's an old Chia interview here that goes over some of it. I know he's talked about this more in other articles/videos, about multiple hits ("perfect storm) causing ME/CFS.

Multiple Hits causing ME/CFS, a Perfect Storm scenario

I know he's mentioned at least these before...

• Multiple viral infections around the same time, perhaps multiple enteroviruses
• He found large pattern of people taking corticosteroids, then developing ME/CFS
• Obviously getting Enterovirus (and it becoming persistent in stomach)
• He mentions correlation of having asthma as a kid

Others...

• Exercising too much. Like over-training w/ lifting and such, as this can lower your innate immune response, and can help Enterovirus take hold
• Stress. Abnormally heavy stress during time of infection can do same as above, allowing EV to take hold
• Genetic predisposition
• Heavy antibiotics during acute EV infection

 

[Wishful]

if I understand this correctly, this is about a lack of tryptophan causing the plethora of issues?

I had worse ME symptoms from extra TRP. Avoiding dietary TRP didn't reduce any symptoms. 5-HTP had no effect on symptoms, so my serotonin pathway wasn't involved; it was the KYN pathway.

I think this is one of those factors that is individualistic: some people might benefit from more TRP or serotonin, and others might have the opposite response, and the majority might have no response.

 

[unto]

There's an old Chia interview here that goes over some of it. I know he's talked about this more in other articles/videos, about multiple hits ("perfect storm) causing ME/CFS.

Multiple Hits causing ME/CFS, a Perfect Storm scenario

I know he's mentioned at least these before...

• Multiple viral infections around the same time, perhaps multiple enteroviruses
• He found large pattern of people taking corticosteroids, then developing ME/CFS
• Obviously getting Enterovirus (and it becoming persistent in stomach)
• He mentions correlation of having asthma as a kid

Others...

• Exercising too much. Like over-training w/ lifting and such, as this can lower your innate immune response, and can help Enterovirus take hold
• Stress. Abnormally heavy stress during time of infection can do same as above, allowing EV to take hold
• Genetic predisposition
• Heavy antibiotics during acute EV infection

hi, I think that Dr Chia is wrong, it's the typical mistake of doctors when they don't find the cause/explanation
of a pathology, it has been like this throughout the history of medicine, as has happened in recent decades with Helicopter Pylory (stress, diet, fat, smoking, trauma........it was just a bacterium that managed to live in the stomach.) or for HIV (eating disorders, psychological disorders, stress, repeated infections, sins........it was an unknown virus.), so in ME, I am convinced, it is just another unknown virus.......
If I hadn't noticed that other people were getting sick around me I would have also accepted his hypothesis (like the others), but in 38 years of ME I am convinced that our illness is caused by a single germ (virus?) and nothing other; certainly the health/genetic history of each patient influences the severity and prevalence of some symptoms....in fact we recently had the teaching of Covid19. With this new virus, 70% of those infected had mild symptoms and 30% of these didn't even notice... (as in ME), 5%(?) had pneumonia (like serious ME sufferers), some had prevalence of gastric symptoms, other sore throat and cough, etc., naturally they had: tiredness, joint pain, drowsiness, cognitive fog, weak memory as the majority of virosis damage.
ciao

 

[sometexan84]

hi, I think that Dr Chia is wrong, it's the typical mistake of doctors when they don't find the cause/explanation
of a pathology, it has been like this throughout the history of medicine, as has happened in recent decades with Helicopter Pylory (stress, diet, fat, smoking, trauma........it was just a bacterium that managed to live in the stomach.) or for HIV (eating disorders, psychological disorders, stress, repeated infections, sins........it was an unknown virus.), so in ME, I am convinced, it is just another unknown virus.......
If I hadn't noticed that other people were getting sick around me I would have also accepted his hypothesis (like the others), but in 38 years of ME I am convinced that our illness is caused by a single germ (virus?) and nothing other; certainly the health/genetic history of each patient influences the severity and prevalence of some symptoms....in fact we recently had the teaching of Covid19. With this new virus, 70% of those infected had mild symptoms and 30% of these didn't even notice... (as in ME), 5%(?) had pneumonia (like serious ME sufferers), some had prevalence of gastric symptoms, other sore throat and cough, etc., naturally they had: tiredness, joint pain, drowsiness, cognitive fog, weak memory as the majority of virosis damage.
ciao

It's the idea that 1) Yes, it is a virus causing it, but 2) multiple factors come together all at the same time that allow the virus to take permanent residence forming a reservoir

 

[Oliver3]

There's an old Chia interview here that goes over some of it. I know he's talked about this more in other articles/videos, about multiple hits ("perfect storm) causing ME/CFS.

Multiple Hits causing ME/CFS, a Perfect Storm scenario

I know he's mentioned at least these before...

• Multiple viral infections around the same time, perhaps multiple enteroviruses
• He found large pattern of people taking corticosteroids, then developing ME/CFS
• Obviously getting Enterovirus (and it becoming persistent in stomach)
• He mentions correlation of having asthma as a kid

Others...

• Exercising too much. Like over-training w/ lifting and such, as this can lower your innate immune response, and can help Enterovirus take hold
• Stress. Abnormally heavy stress during time of infection can do same as above, allowing EV to take hold
• Genetic predisposition
• Heavy antibiotics during acute EV infection

Everyone s allostatic load is different.
At the core is weak connective tissue. Throw all the other stuff in and we buckle.
I really believe we need to do d ways to strengthen the tissue. Thin skin is symbolic of our illness both physically and mentally.
What's gonna stop us from shutting down again.
This world is full of toxins and challenges but we get it early.
I have a friend who has Asperger's and his children do too. They're already calmed by histamines.. obviously an mcas issue, they're sensitive to viruses, chemicals, stress etc.
It's the connective tissue type that triggers the cascade. It's not a virus that most human beings can't handle my it's us . We are the sensitifs.

Whatever your allostatic load is..that's the breaking point. Sone people are freakishly durable. Some people, like us are freakishly not durable.
Look at gulf war illness. That was a combo of insults to the system and the vulnerable got taken down and stuck in a trap they can't get out of.
Jen brea is of the same opinion. I really think human tissue type is gonna be an important field in medicine one day. What is resilience. And durability.
I knew there was something not durable about me early on.
Viruses may have got to me, but the ground zero is not the virus

 

[Wishful]

At the core is weak connective tissue.

My connective tissue seems fine, yet I still have ME.