Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

I suspect this information listed below is why ME patients still are interested in interferons.

Information Taken from Phoinixrising on interferon Link: https://phoenixrising.me/treatment/...ng-chronic-fatigue-syndrome-mecfs-interferon/

Yes, I did suspect it might be motivated by the idea that ME/CFS was due to lingering viruses. Chia's work has consisted of a series of disconnected observations, none of which convincngly show involvement of viruses in ME/CFS. I suspect it harks back to the original concept of 'ME' that was thought to be an atypical enterovirus infection in the 1970s but has nothing much to do with ME/CFS as we now understand t;

But have no idea what interferon alpha/gamma would be. There is interferon alpha and there is interferon gamma. I suspect this was alpha. It is pretty strange since t is well recognised that a common side effect of interferon alpha is severe fatigue.

I left Phoenix Rising because of the uncritical way such old myths were paraded around (there was a rule that you could not criticise others' treatments). I hope we have moved on from all that.
 
But have no idea what interferon alpha/gamma would be. There is interferon alpha and there is interferon gamma. I suspect this was alpha. It is pretty strange since t is well recognised that a common side effect of interferon alpha is severe fatigue.

I was able to find that both were used, and a higher dose of gamma ( weekly) was administered compared to alpha. "Clinical and virological response to combination treatment with interferon α and interferon γ. Biweekly energy level, the sum of daily energy index (0–10) for two weeks, was recorded by two patients (A, B) before, during, and after a one month treatment with interferon α (Pegasys 180 μg; once/week) and interferon γ (100 μg; three times/week).

I do not understand how an atypical enterovirus infection is not relevant to ME/CFS patients. Is covid persistence not relevant in long covid patients?
 
Is covid persistence not relevant in long covid patients?
There seems little solid evidence of this no. And certainly none in ME/CFS. People talk about the theory of viral persistence in both but there’s never been any proof of it and no anti viral treatments have worked AFAIK.
That page says

In 2009 Dr. Chia announced that he is no longer using Interferon because he has found that Oxymatrine – an herbal preparation from China – is as effective, is much (much) less expensive and has fewer side effects.
It sounds like he doesn’t have much faith in interferon and has moved to using TCM as an alternative, based upon what evidence I’d ask.
Interferon can cause flu-like symptoms, fever, headaches, chill, fatigue, nausea, muscle pain, mood changes and more. Dr. Chia noted that a severe increase in symptoms may occur early in the treatment. Side effects usually quickly disappear once the treatment is terminated
None of this sounds convincing to me in any way.
 
I was able to find that both were used, and a higher dose of gamma ( weekly) was administered compared to alpha.

OK, but without a proper trial improvements could mean anything - they are not 'responses'.

I do not understand how an atypical enterovirus infection is not relevant to ME/CFS patients. Is covid persistence not relevant in long covid patients?

The idea of an atypical enterovirus infection was raised by the claim of local neurological signs during the Royal Free acute epidemic illness and maybe also the Iceland epidemic. Subsequently it seems likely that these apparent neurological signs were unconfirmed and quite likely due to imprecise neurological technique by the physician (who was not a neurologist). Enterovirus was suspected because of a speculated similarity to polio. Nobody ever found an enterovirus, so the whole idea seems to have been an irrelevance.

Some of those Royal Free patients went on to have what we call ME/CFS, but as such they are no different from the hundreds of thousands of people who get ME/CFS after a whole range of infections. The evidence that persistent virus is relevant to any of these is pretty strongly negative. The evidence in Covid19 is unconvincing.

A big problem with ME/CFS research is that it is often done by people who have picked up old ideas that have long since been found unconvincing and done inconclusive work trying to find supportive evidence. All this sort of stuff is to my mind a distraction.
 
Thank you for the reply! Could you link the study mentioned, did these patients have ME/CFS? That is highly concerning, and I do not think I will pursue any treatment with IFNγ.

I suspect this information listed below is why ME patients still are interested in interferons.

Information Taken from Phoinixrising on interferon Link: https://phoenixrising.me/treatment/...ng-chronic-fatigue-syndrome-mecfs-interferon/

Dr. John chia reports
Interferon alpha/delta – Eight of 14 severely ill ME/CFS patients with enteroviral RNA in their blood returned to work on a half or full time basis after interferon alpha/delta therapy but most relapsed several months later. Heavy exertion was a common relapse trigger. Some patients responded well to another course of interferon”

“Interferon alpha/gamma – One patient receiving interferon alpha/gamma three times a week returned to full-time work two months later and was well for 14 months when she relapsed. Another patient had a similar response. Dr. Chia reported that eight of 14 severely ill ME/CFS patients with enteroviral RNA in their blood returned to work on a half or full time basis but most relapsed several months later.“

These patients all had severe ME/CFS. To go from bedridden to full time work is quite an extreme improvement, even if the patients didn’t permanently stay at those levels after the treatment
You trust this doctor?

He's another one of these doctors that have amazing success that no one can replicate. Why is he doing this? To earn money.
 
Didn’t he develop and sell a proprietary herbal supplement based upon Oxymatrine (see my previous post)? Presumably he made or makes money from that? There’s a trademark and a company that seems registered to a family member.

https://www.equilibranthealth.com/
https://me-pedia.org/wiki/Equilibrant
Sophora Health LLC company details
Firstly, he does not charge you regarding paperwork he signs for school or government forms. Every doctor I have met so far, both in my own country and overseas charge you for this. Even if I haven’t gone in appointment, rather all through email I am still charged.

Secondly, his supplement include Vitamin A 2,000 IU, Vitamin D 150 IU, calcium 600mg, selenium 30mcg, herbal blend 1,500mg of astragalus root extract, shrubby Sophora root extract, olive leaf extract, shiitake mushroom extract. He sells 90 tablets for 55 USD.

The key ingredient here is oxymartine which is the Sophora root extract (20% oxymartine). The only other brand that sells oxymartine is White tiger brand which for me is being sold at 44 USD (84 tablets) from Amazon. This will only include the oxymartine and nothing else. There is really not a huge price difference but hard to compare the two due to the ingredient list and dosing. I do not think this would count as a doctor trying to make huge profits at this price range.

Thirdly, A friend of mine who visited him payed 500$ for a full check up, even follow-ups. This is standard prices for most specialists. I payed the same price for my own specialist and only got one follow up appointment and had to pay for extra. Some friends of mine in Australia who are seeing a specialists are paying the same price. My friend had his follow-up lasting for 6-7 months without any further payment - again very contradicting to a doctor who wish to make a lot of money.

Before chia begins this treatment with oxymartine he does blood tests to check for different enteroviruses. Certain viruses do not respond much if at all to oxymartine. From there Dr chia says it is up to the patient if they wish to try the treatment or not to see if it responds. One of the patients I know who saw him had a specific strand that is particularly difficult so chia let him now prior to treatment. He decided to try and he tried for 3 months. Dr chia informed him that he could stop trying the treatment since he isn’t seeing any effect. From my understanding most doctors who wish to profit will tell the patients they have to keep taking it to see effects which leads me until my next point

There has been reports of patients having major benefit in their symptoms. In these patients, especially those in the beginning of his experiment with oxymartine, he thought the patients could stop treatment. So the patients did, and symptoms quickly returned from working back to bedbound. Then he informed the patient to start treatment again after seeing high titers in the blood once again, and symptoms improved. This happened to a range of his patients. This is why he now states if it works you may have to be on it for a lifetime especially since we don’t have effective antivirals for it as per now, which is something he wish could change.

A doctor encouraging a search for an antiviral that will fully eradicate a virus and symptoms is not someone who is greedy imo

Lastly I wish to also respond to the comment regarding Dr chia being the only one finding enteroviruses in us. This is false, I have come across multiple patients in the community who has seen other doctors and ME clinics which has found enteroviruses with a very abnormally high amount of titers

Now regarding the testing you can find more information of how it’s done under “Detection of non-cytolytic infections” https://me-pedia.org/wiki/Non-cytolytic_enterovirus#Detection_of_non-cytolytic_infections

Please note that Dr chia was not the first to be able to find positive chronic enteroviruses in humans through more advanced testings. We might believe we have good testing tools in today’s world, but it seems that we do not and many tools aren’t able to pick up a range of different pathogens. It’s another great issue which needs to be addressed in my opinion. I would also advice you to look further into the tissue biopsy Dr chia has conducted in ME patients.

I understand many doctors out wish to sell us ridiculous protocols filled with medication and supplements. I understand there are many who have fallen for this and wasted tons of money, but seeing the history of Dr chia and his patients I cannot see any evidence for stating that he is only after money.
 
"There have been reports". So coming from Dr Chia's mouth?

You realize this is the same story right. Reports. Then patients try it and have no success. They post on reddit that it didn't work.

These stories keep happening. Conclusion is the doctor was just saying it to earn money.
 
Last edited:
I understand many doctors out wish to sell us ridiculous protocols filled with medication and supplements. I understand there are many who have fallen for this and wasted tons of money, but seeing the history of Dr chia and his patients I cannot see any evidence for stating that he is only after money
I have no clue about his motives. In my experience as soon as someone’s financial interests are tied in with things to me it does get murky, but that seems to be the way healthcare works in the US.

You asked a question and I tried to help by giving some information. But it seems you’re very knowledgeable about him and how he works, far more than me, and obviously have a lot of faith in him.
 
I have no clue about his motives. In my experience as soon as someone’s financial interests are tied in with things to me it does get murky, but that seems to be the way healthcare works in the US.

You asked a question and I tried to help by giving some information. But it seems you’re very knowledgeable about him and how he works, far more than me, and obviously have a lot of faith in him.
Thank you for the reply and I do agree that many doctors wish to profit as mentioned in my previous post. I do not believe Dr. Chia has all the answer, I just do not think he is doing this for profit reasons

I myself do not think I would benefit from his supplement as I do not suspect I am walking around with an enterovirus, neither do I think all other patients are.

Another important thing to mention regarding his supplement is that he started out with prescribing interferon treatment which was quite expensive for patients (he did not profit by this method). Due to the high cost for patients and not seeing permanent improvement, he tried to find other ways to boost immunity and help the body according to his theory, lower the viral load. He found oxymartine according to his experiments to be just as effective as interferon. This seems to be whole point of making the supplement, to make it more accessible to patients and a cheaper way to reduce enteroviruses in the suspected patients.
 
He found oxymartine according to his experiments to be just as effective as interferon. This seems to be whole point of making the supplement, to make it more accessible to patients and a cheaper way to reduce enteroviruses in the suspected patients.

But without proper trials he would not have been in a position to judge. I doubt Dr Chia sells supplements simply to make a living. I think he may believe they do good. But if you do not have reliable evidence for the value of what you sell that is just as potentially harmful as doing it for profit and is a deceit if you claim to know it is effective.

Anyone genuinely interested in patient wellbeing will do informative trials - I know because I have been in that situation myself many times.
 
I just do not think he is doing this for profit reasons
While none of us can claim to know the motives of anyone else, there is no getting around the fact that Chia 1) potentially earns money from his products, and 2) have patients go to him because he is know for giving them what he wants (medications, diagnoses, etc). This is a basic market mechanism where his behaviour is increasing the demand for his services.

He benefits in terms of having a more stable and potentially larger revenue base, and in more immaterial ways of e.g. self-esteem and feeling that he is helping.

However, he is unable to document that he is actually helping the patients, and seemingly unwilling or unable to perform appropriate studies to confirm it. The contrast to how things should be done in medicine as demonstrated by e.g. Fluge and Mella is staggering.

What Chia is doing is no doubt unethical. He is not alone in doing this - it’s far too normal nowadays, but we can’t lower the minimum standards just because a lot of doctors struggle to meet them. We have to expect them to do better.
 
"There have been reports". So coming from Dr Chia's mouth?

You realize this is the same story right. Reports. Then patients try it and have no success. They post on reddit that it didn't work.

These stories keep happening. Conclusion is the doctor was just saying it to earn money.
There has indeed been patients claiming equillibrant has caused a significant improvement to their ME/CFS.

A friend of mine was put on Equillibrant through Dr. Nancy Klimas clinic and had improvement. He could not leave the house at all, even getting the mail was impossible. After treatment he was able to travel by plane to his dads house in another state without crashing.

Here is some of the stories posted from patients in regards to improvments

(Diwi9) with enterovirus ME/CFS achieved a substantial improvement from oxymatrine (in the form of Dr Chia's Equilibrant).

ME/CFS patient (tdog333) did well taking 6 pills of oxymatrine daily.

ME/CFS patient (.jm.) with mild enterovirus ME/CFS went into remission (1-level gain) as a result of taking oxymatrine.

ME/CFS patient (CuetheFeelS) with mild ME/CFS went into remission (1-level gain) as a result of taking oxymatrine.

ME/CFS patient (abdul1436) severe ME/CFS who could not speak, walk, and slept 17 -20 hours a day went into remission (3-level gain) after 5 months on oxymatrine plus inosine, dihydroquercetin and quercetin.

Further there are stories from other patients you could look through on the same platform

"I'm still taking Equilibrant, which has lead to definite improvement" - Patrick*

"I feel better now on Equilibrant then when I started in January, so I am hopeful it is working." and "Could be the Equilibrant, could be the Inosine - not sure why, but I feel a lot better right now (knock wood). Actually had energy to mow half the lawn and then the day after still felt well enough to play frisbee with my son. I'm cautiously hopeful right now."alongside "Month 6 on Equilibrant. I am also taking Inosine, New Chapter mushroom immunity supplement, and olive leaf. Plus vitamins. I feel the best I have felt in years. Not 100%, but much better." - PGHCFS

"I have been doing very well with only 1/2 day crashes about once-a-week. i just raised my activity level on my PR profile from 3 to 5!" - RestingInHim

"It's me again. I'm still here. I'm up to 2+2 Equilibrant per day now. Today was a non-standard day because I actually felt more "normal" than I've felt in a long time." - sandy10m
 
Back
Top Bottom