Seeing Dr John Chia on Friday, What Questions Should I Ask?

[sometexan84]

How much do you think the CBV2, EBV, HHV-6, Echovirus, and CpN titers are contributing to my illness in comparison with the CBV4 titers?

Not much if at all, it's the CBV4. The other titers are likely past infections.

It's an answer like this that makes me question Dr. Chia. And I'm not just referring to this question/answer, I mean for all I know he looked at all the labs and interpreted them correctly as all past infections.

But I've seen enough on Dr Chia to know that he is oddly dismissive of other possible CFS causes. Seems like he's always like "No, it's enterovirus.". Um, okay.....?

I for one, have fully active enterovirus and EBV infections. And there's no way I could reach 100% just treating one or the other.

Of course, there is aways the issue that once patients recover, they may lose interest in the ME/CFS community, and just get on with their lives.

That's the case w/ everyone though. Everyone and every virus and every condition.

But then how to explain Chia's claims? I don't think he's actively misleading people to promote a supplement he sells at cost. That doesn't seem to be in his character. I also don't think he's blind to his own patient population's level of improvement.

Probably not. But aside from the money, it's about his lifelong research. And I have a theory that in the past 10 yrs, he's realized that his theories and research weren't as important as he initially had thought. Which might be why we don't hear a ton from him these days. And I also believe he qualifies his patients, which could skew results. Think about all the things he said about that...

66% effectiveness against coxsackie B. Better in younger patients (considered 30 young), better for men, people early into the illness, and African Americans / Hispanics.

He's also said it's better in people that are fatigued w/out pain. He clearly has looked into this a lot and knows who it will and will not work on, which could skew the success rates.

Switching into brainstorming mode for a moment, the first crazy idea that springs to mind is that because Dr Chia is based in Southern California, then assuming many of his patients are locals, they are going have higher sunshine exposure, which leads to higher levels of vitamin D, which effects Th1/Th2 in complex ways.

Sorry to criticize something you wrote 3 yrs ago Hip. But.. that's a bit of a stretch...

 

[sometexan84]

Do you think my HHV-6 (21.38), EBV (547), and CpN IgG (1:256) titers are significant? And if so can Equilibrant treat those infections as well?

These levels are not significant, but he has seen Equilibrant substantially bring down HHV-6 titers in another patient.

And again, Dr Chia is totally dismissive of this.

HHV-6 (21.38) - Since these number look like ELISA, it's likely <0.90 is the Negative, which would make this a 24-fold titer increase. Are you kidding me?

EBV (547) - Uh, this just looks like VCA IgG or something, so it's not relevant. Would love to see the other numbers though

CpN IgG (1:256) - This is supposed to mean active infection. Not insignificant w/ all the studies out there on this.

I can see how he could say the EBV level is insignificant. But the other two? They appear to be active infections. And are both commonly associated w/ CFS symptoms.

My recent blood test shows elevated pyruvate and very low cis-aconitate implying metabolic dysfunction in the Krebs cycle and low ATP output. Besides using Equilibrant and IVIG upstream, is there a way to directly treat the aconitase enzyme?

Thinks this is caused by enteroviruses

Of course he does.

 

[consuegra]

It's an answer like this that makes me question Dr. Chia. And I'm not just referring to this question/answer, I mean for all I know he looked at all the labs and interpreted them correctly as all past infections.

But I've seen enough on Dr Chia to know that he is oddly dismissive of other possible CFS causes. Seems like he's always like "No, it's enterovirus.". Um, okay.....?

I for one, have fully active enterovirus and EBV infections. And there's no way I could reach 100% just treating one or the other.


That's the case w/ everyone though. Everyone and every virus and every condition.


Probably not. But aside from the money, it's about his lifelong research. And I have a theory that in the past 10 yrs, he's realized that his theories and research weren't as important as he initially had thought. Which might be why we don't hear a ton from him these days. And I also believe he qualifies his patients, which could skew results. Think about all the things he said about that...


He's also said it's better in people that are fatigued w/out pain. He clearly has looked into this a lot and knows who it will and will not work on, which could skew the success rates.


Sorry to criticize something you wrote 3 yrs ago Hip. But.. that's a bit of a stretch...

Hi,

As you know, ME/CFS is a complex illness. I have known a lot of doctors and heard a lot more speak. There is a range to various doctor's treatments and diagnoses. Dr. Lerner was terrifically focused on EBV and had the tests and treatment protocols which were geared towards knocking back EBV. Lerner did not swerve too much from his belief in a viral cause and a specific virus. He certainly had his successes. Dr. Chia is somewhat similar in that he too focuses on a specific virus, coxsackie b4. Amazingly he cured his own son. His son is now healthy and in pharmaceuticals. Dr. Chia builds his ideas through experience and through considering the early history and research of ME in the UK. Incidentally, this history has been widely ignored, except for Byron Hyde.

I don't see this focussing on one virus as a problem. In these particular cases, I see it as a strength. The real question is why is Dr. Chia so marginalized? For years he has presented his ideas at conferences. He gets almost no traction. And yet he does not give up. It would be a better world if there were more ME/CFS physicians like Dr. Chia,

There are powerful lessons in history. We are learning that now the hard way, with this coronavirus.

Regards,

Chris

 

[sometexan84]

According to Chia's published letter, he finds enterovirus the most common cause, in 109 out of 200 ME/CFS patients, but in second place surprisingly is Chlamydia pneumoniae, in 18 out of 200 patients. Though I have almost never come across Chlamydia pneumoniae ME/CFS patients on this forum.

Another super questionable thing. Dr Chia's studies don't fit with anyone else's. First off, I have active C. Pneumoniae, so there's one. And if you put all the studies together from the past 10 yrs, EBV will is definitely #1 as far as CFS infection associations. I don't think there can be an argument w/ that.

I know that he does not rule out EBV entirely, because in this published letter by Dr Chia, he finds that EBV is the cause of ME/CFS in 6 out of 200 patients he tested.

The only way this is true is if he qualifies his patients and those he uses in his studies. I shouldn't have deleted the CFS EBV studies I had. But you can find a couple dozen EBV studies that show active EBV anywhere from 20% - 70% of CFS patients, significantly higher than the healthy controls used. And tons of studies showing that EBV can and does cause CFS.

Now I think I've gone from not trusting the guy completely, to just not liking him.

 

[sometexan84]

Dr. Lerner was terrifically focused on EBV and had the tests and treatment protocols which were geared towards knocking back EBV. Lerner did not swerve too much from his belief in a viral cause and a specific virus. He certainly had his successes. Dr. Chia is somewhat similar in that he too focuses on a specific virus, coxsackie b4.

That's not true. Dr Lerner treated EBV, HHV-6, CMV, Mycoplasma pneumoniae, Streptococcus infection, and a bunch of other bacterial infections. He even treated enterovirus. He pretty much covered all the known suspects, despite treating his patients many yrs ago, prior to everything we now know. Smart dude.

https://phoenixrising.me/interviews...ntiviral-treatment-study-0510-by-cort-johnson
https://www.healthrising.org/forums...ibromyalgia-antiviral-treatment-protocol.134/

EBV was his "main focus" only because it was the most prevalent in his CFS patients. And studies today still consistently gravitate towards EBV being the most important aspect in CFS, as far as infections go.

I don't see this focussing on one virus as a problem.

It's not a problem. Heck, if we could be a super smart mind behind each individual infectious agent, I think we'd all benefit. I just don't like his disregard for other infections, and his studies seem suspect.

The real question is why is Dr. Chia so marginalized?

Is he? Well that's good to hear.

For years he has presented his ideas at conferences.

He presents the same thing over and over, regurgitating the exact same stuff about treating his son, equilibrant, and finding enterovirus in various places of peoples live or dead bodies.

 

[JES]

Another super questionable thing. Dr Chia's studies don't fit with anyone else's. First off, I have active C. Pneumoniae, so there's one. And if you put all the studies together from the past 10 yrs, EBV will is definitely #1 as far as CFS infection associations. I don't think there can be an argument w/ that.

This guy is off his rocker!


Really? Really?

The only way this is true is if he qualifies his patients and those he uses in his studies. I shouldn't have deleted the CFS EBV studies I had. But you can find a couple dozen EBV studies that show active EBV anywhere from 20% - 70% of CFS patients, significantly higher than the healthy controls used. And tons of studies showing that EBV can and does cause CFS.

Now I think I've gone from not trusting the guy completely, to just not liking him.

Not sure what made you specifically bring up Chia, maybe you had a bad experience with him, but as far as I can see, most ME/CFS doctors are "Dr. Chia's", i.e. they have one leading hypothesis of what causes the disease and they focus on treating that one. Since we haven't established what the cause of ME/CFS is or even biomarkers, the pragmatic approach with today's limited understanding might actually be for a doctor to focus on treating one aspect of the disease and refer the patient to their colleagues for other treatment approaches.

You mentioned Lerner isn't focused on one virus, but all his publications and talks are about herpesviruses, of which CMV and HHV-6 are part of. Other examples on top of my head are Kenny de Meirleir, who is often accused of seeing everything as chronic Lyme, Jose Montoya, who like Lerner seems focus on herpesviruses and treatment with antiherpesvirals and recently we have a bunch of neurosurgeons who sees CCI in most of their ME/CFS patients and think a CCI surgery will most of the time cure them. To me all these doctors are in the same category, they try their best to help ME/CFS patients, with slightly different approaches, but so far we have no strong evidence of efficacy with any form of intervention, so we are still talking about off-label treatments and hypotheses.

I went to a bunch of doctors over the years and got a different answer from almost every one of them. The first doctor wanted to treat my "active" mycoplasma infection with antibiotics - made no difference. The second doctor I visited for years was convinced all forms of ME/CFS are some form of autonomic nervous system dysfunction caused by inherited collagen defects like EDS. Finally last year I visited a doctor who thinks increasing salt intake alone will fix my orthostatic issues, but meanwhile he also got me tested and found autoantibodies against adrenergic and muscarinic receptors, so it's the antibodies or salt deficiency that is the cause now? We are all still pretty much in the dark.

 

[sometexan84]

Not sure what made you specifically bring up Chia, maybe you had a bad experience with him,

This is an old Dr Chia thread, I'd stumbled on it for whatever reason, thought I'd revive the thread. Lots of stuff here!

I didn't use Dr Chia. No bad experience.

You mentioned Lerner isn't focused on one virus,

See the post I made just before your post.

But really, I was just talking about how, and why, I distrust Dr. Chia. Like, unrelated to other doctors.

The first doctor wanted to treat my "active" mycoplasma infection with antibiotics - made no difference. The second doctor I visited for years was convinced all forms of ME/CFS are some form of autonomic nervous system dysfunction caused by inherited collagen defects like EDS. Finally last year I visited a doctor who thinks increasing salt intake alone will fix my orthostatic issues, but meanwhile he also got me tested and found autoantibodies against adrenergic and muscarinic receptors, so it's the antibodies or salt deficiency that is the cause now?

Haha, I think all 3 doctors are right though. (minus "inherited collagen defects" and that guys salt solution)

HEY! You got the ß2 autoantibodies!?! "Rapid improvement" in 7 of 10 patients (w/ high ß2 autoantibodies) with Immunoadsorption. If you have $20,000, you should try it! Would love to hear the results.

 

[frank1001]

Wow, all this time and I did not know that either! Thanks @Hip!

And @Jesse2233 I saw Dr. Chia for a one-time consult over a year ago and brought my medical records and a list of questions w/me. My husband had come w/me to the appt and had some questions, too. The doctor was very angry that his enterovirus theories were not taken seriously and actually told me that he refused to view any records that I had brought from OMI (where I am a regular patient) even though the EV tests were done by the same lab that he used, "ARUP" along w/Quest and/or Lab Corp.

He immediately said that I had an EV in my brain, stomach, etc, but offered no proof and I'd never had a biopsy or brain scan. We were not permitted to ask questions until the very end (even though we tried!) and it was an upsetting experience b/c I was put on the defensive as soon as he walked in the door b/c I was an OMI patient. He absolutely refused me IVIG (which I later got through OMI and my MCAS doctor) and it is the single best treatment I have done in four yrs of being ill. I 100% understood why he refused Equilibriant b/c I have Hashimoto's and am very autoimmune. But I did not understand the rejection of IVIG in my case.

I also got the feeling that he did not believe that MCAS existed (one of my diagnoses which is now in remission from IVIG but was still very acute at that time). I left very disappointed but on the plus side, he was local and took my insurance so it was not a financial loss, just an emotional one. I am literally praying that your experience goes better than mine did and am sure it will. I think we must have caught him on an off-day. I think he is a brilliant man and researcher but he was not able to help me.

Sorry if I'm being a doorknob but how would I go about becoming at patient at Open Medical Institute?

 

[Learner1]

Sorry if I'm being a doorknob but how would I go about becoming at patient at Open Medical Institute?

It is now the Center for Complex Diseases in Mountain View, CA. Call them and ask.

 

[elvira]

Another super questionable thing. Dr Chia's studies don't fit with anyone else's. First off, I have active C. Pneumoniae, so there's one. And if you put all the studies together from the past 10 yrs, EBV will is definitely #1 as far as CFS infection associations. I don't think there can be an argument w/ that.



The only way this is true is if he qualifies his patients and those he uses in his studies. I shouldn't have deleted the CFS EBV studies I had. But you can find a couple dozen EBV studies that show active EBV anywhere from 20% - 70% of CFS patients, significantly higher than the healthy controls used. And tons of studies showing that EBV can and does cause CFS.

Now I think I've gone from not trusting the guy completely, to just not liking him.

Hi @sometexan84 ! I was wondering what made you change your mind on Chia, considering the lambda project?

 

[sometexan84]

Hi @sometexan84 ! I was wondering what made you change your mind on Chia, considering the lambda project?

Well, congrats, I think you're the first one to notice this, and say something publicly.

This was almost 2 years ago when I made those comments. I was pretty new to ME/CFS, and I feel pretty dumb when I look back at this. I've since learned my lesson, to not be so quick to assume, or too quick to judge. And so these days I collect a lot more data and info before making definitive statements like that. And even after that, I am now more hesitant to make definitive statements.

I even said some things in that comment that are flat out incorrect. Like this...

"if you put all the studies together from the past 10 yrs, EBV will is definitely #1 as far as CFS infection associations. "

It's a quote of mine from 2 yrs ago. And it's actually not true. It wasn't til later, that I actually collected all the studies, qualified them, and it turns out EBV is actually NOT the most associated infection w/ CFS.

There were many things I did wrong at that time. I like to think that I now have a much better understanding, not just of ME/CFS, but also how to go about researching and data gathering in general.

"I was wondering what made you change your mind on Chia, considering the lambda project? "

I think one of the bigger things that changed my mind was actually reviewing all the infection studies, and learning that Enterovirus was #1 (which was hard to do, because you have to know about the previous study flaws in order to qualify them, like their method of detection).

Another big one was when I started getting my ARUP labs showing my Enteroviruses, and then finding how common it was for all of us.

Also another big one... was when that study came out showing not only how Type III interferon is very effective against Coxsackie B, but was also the first study to demonstrate how the virus has these proteases that cleave important innate immune response signals in the cell, thus evading the interferon activity.

But there were a handful of important studies that came out in 2020 and 2021 that kept me thinking there was something there... and so I went further and further down that rabbit hole. Eventually, it all just fit together.

Later, I learned why Chia's studies appear odd, or like, unimportant to other research scientists, which I couldn't really wrap my head around at the time.

 

[Rufous McKinney]

Later, I learned why Chia's studies appear odd, or like, unimportant to other research scientists, which I couldn't really wrap my head around at the time.

is that discussed around here?

 

[elvira]

Well, congrats, I think you're the first one to notice this, and say something publicly.

This was almost 2 years ago when I made those comments. I was pretty new to ME/CFS, and I feel pretty dumb when I look back at this. I've since learned my lesson, to not be so quick to assume, or too quick to judge. And so these days I collect a lot more data and info before making definitive statements like that. And even after that, I am now more hesitant to make definitive statements.

I even said some things in that comment that are flat out incorrect. Like this...

"if you put all the studies together from the past 10 yrs, EBV will is definitely #1 as far as CFS infection associations. "

It's a quote of mine from 2 yrs ago. And it's actually not true. It wasn't til later, that I actually collected all the studies, qualified them, and it turns out EBV is actually NOT the most associated infection w/ CFS.

There were many things I did wrong at that time. I like to think that I now have a much better understanding, not just of ME/CFS, but also how to go about researching and data gathering in general.

"I was wondering what made you change your mind on Chia, considering the lambda project? "

I think one of the bigger things that changed my mind was actually reviewing all the infection studies, and learning that Enterovirus was #1 (which was hard to do, because you have to know about the previous study flaws in order to qualify them, like their method of detection).

Another big one was when I started getting my ARUP labs showing my Enteroviruses, and then finding how common it was for all of us.

Also another big one... was when that study came out showing not only how Type III interferon is very effective against Coxsackie B, but was also the first study to demonstrate how the virus has these proteases that cleave important innate immune response signals in the cell, thus evading the interferon activity.

But there were a handful of important studies that came out in 2020 and 2021 that kept me thinking there was something there... and so I went further and further down that rabbit hole. Eventually, it all just fit together.

Later, I learned why Chia's studies appear odd, or like, unimportant to other research scientists, which I couldn't really wrap my head around at the time.

Thank you for your answer! Haha sorry, I didn’t want to put you in a corner, it just made me a bit confused since I know now how much you know about Chia and his theories. But your answer helped

 

[sometexan84]

is that discussed around here?

Well, kind of. Some of it's probably mentioned in some of the threads about Peginterferon Lambda, or Enterovirus Theory.

This thread prob talks about it some - https://forums.phoenixrising.me/thr...-critical-review-oneal-and-hanson-2021.84191/

Which goes over this super important 2021 study: The Enterovirus Theory of Disease Etiology in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Critical Review

https://www.frontiersin.org/articles/10.3389/fmed.2021.688486/full

 

[Rufous McKinney]

I'm convinced EBV got me mostly, but then enterococcus showed up and was NASTIER

 

[sometexan84]

Thank you for your answer! Haha sorry, I didn’t want to put you in a corner, it just made me a bit confused since I know now how much you know about Chia and his theories. But your answer helped

No, I deserve to be called out on this. Same as anyone else should be.

It's a bit embarrassing to read some of what i'd said in 2019, and some of 2020. But I do try and learn from my mistakes and improve upon them. That learning experience would be a highlight if I ever had to rebuttal against something like "You were wrong before, so why should anyone believe you now".

Because my entire approach to research is different than it was in 2019, and even going into 2020.

Though at this point, my main response might be "I guess we will know very very soon!".

 

[sometexan84]

I'm convinced EBV got me mostly, but then enterococcus showed up and was NASTIER

You mean "enterovirus"? Or are you literally referring to the bacteria Enterococcus?

 

[Rufous McKinney]

You mean "enterovirus"? Or are you literally referring to the bacteria Enterococcus?

oh opps sorry....I meant virus.

 

[sometexan84]

oh opps sorry....I meant virus.

Enterovirus and SARS-CoV-2 can both re-activate EBV and perpetuate an acute primary EBV infection.

Sorry for not adding ref links... but lots should show up if you Google

 

[kewia]

@Jesse2233,
Thanks for the detailed insights.

Did anyone know how successful the therapy was for Jesse2233, b/c there are now new messages since 2019 from this account.

Did you know if Dr. Chia would offer telemedicine and what the price for his usual consultations is?
Further, did anyone of you heard which of the new antivirals might be the ones he mentioned to be effective for enterovirus treatment?