Dr. John Chia and Enterovirus. Old hat? Nope - a key.

Recently, the 12th Invest in ME conference in London ended. This ME/CFS conference is three days of serious research discussion and presentations. It is one of the best conferences on difficult diseases. The sponsors Richard and Pia Simpson exert an extreme effort to put on this conference, a conference which expands in scope every year. These two individuals are extraordinary people.

One wonders, with all the comprehensive research at this conference, if Dr. Chia and his Enteroviral research were even mentioned at the Invest in ME conference conversations this year?

Is it possible that the low level of response to his research will continue indefinitely? Let's hope not.

Dr. John Chia knows that enteroviruses are a cause of ME/CFS.

I first met Dr. John Chia at the Invest in ME conference many years ago. Dr. Chia made a presentation on enterovirus and ME/CFS. He has made several other presentation at Invest in ME and I have written about him before, here and here and here and here.

Recently I came upon the NIH RFI request sent out this spring. Various people responded and the publication of responses can be found here. Dr. Chia's is the third response down, talking about his subject - enteroviral involvement in ME/CFS. The real question is if anyone - specifically the NIH - will pick up the thread.

Dr. Chia made a three-hour presentation on Enteroviruses at the IACFS/ME conference in the fall of 2016. In it, he makes the case that he has been making for many years now.

Dr. Chia keeps working on enteroviruses involvement in ME/CFS. He is undeterred and is committed to continue until there is a solution. In the meantime, Dr. Chia treats patients with oxymatrine. A certain percentage respond. He also uses Epivir in some cases. More recently he recommends dihydroquercitin and specifically Swanson's Russian Rejuvenator. Dihydroquercitin appears to inhibit coxsackie b4 virus and stabilizes mast cells. It has various other activities - anti-inflammatory, neuroprotective, combats oxidative stress - that you can read about online. It suppresses the release of histamine.

Dr. Chia has no problem with the recent metabolome data coming from Naviaux, seeing it as a step in the process of ME/CFS. He believes that a number of drugs might modulate the cellular function in the brain but eventually the viral replication or related mechanisms will have to be inhibited. This will come with anti-virals against coxsackie B and Echo viruses. It is known that two European companies are working on a anti-viral coxsackie drug, but they keep their work very quiet. The companies working on this have extra motivation now, knowing that their market for this drug is greater than originally thought.

By sheer chance, my daughter started doing the ARUP coxsackie antibody test in 2005. Only in 2007 did I hear Dr. Chia state the importance of doing this specific test. My daughter's antibodies to CVB4 and CVB3 have been at the top of the range for ten years. To me this means something, as opposed to many other test results, which are indeterminate. I know a lot of people with ME/CFS - and a good number of doctors who try to treat it. To all of them I urge doing the coxsackie antibody test via neutralization at ARUP. Amazingly, I have yet to convince one patient or one doctor to do this test. This in itself says something - and it is not good. It appears that they just do not want to know.

More can be read on Dr. Chia and enteroviruses on the Phoenix Rising forum and another one on PR here.

There are a number of interesting responses in the NIH RFI cited above. For instance check out Dr. William Weir's response. It is the second one from the top.

More on Enteroviruses and ME/CFS

A few recent comments on the history of research into enteroviral involvement in ME/CFS are worth highlighting. These comments come from Dr. Charles Shepherd and from Hip, of the Phoenix Rising forums. Hip contributes multiple, important observations to the Phoenix Rising forum and his ideas are always insightful.

From Charles Shepherd:

"I have now met and listened to Dr. Chia on several occasions and I was at the IACFS/ME conference in San Francisco - where he again presented his findings relating to persisting enteroviral infection. I agree with Tony Komaroff that these findings cannot simply be dismissed and we do need another independent group of virologists to see if they can replicate these findings. I have made these points in my own detailed summary of the conference - which is now being prepared for publication. At present, the balance of evidence (much of which was done in the UK by Professor John Gow and colleagues in Glasgow) relating to persisting enteroviral infection in ME/CFS is against any such link. But I think we should adopt a position of 'the jury is still out' on persistent enteroviral infection in ME/CFS until someone has tried to replicate what is a very thorough and interesting piece of virology research."

From Hip:

"Hi Charles Shepherd,

I believe Professor John Gow primarily looked for enteroviruses in the muscles of ME/CFS patients. However, generally speaking, muscle symptoms such as muscle pain are not that common in ME/CFs, whereas gut and of course especially neurological symptoms (e.g. brain fog, sound sensitivity) are the norm. Thus unless you look for enteroviruses in the areas where the symptoms exist, i.e. gut and nervous system or brain, you may not find much evidence for these viruses. Dr. Chia looked in the gut, and found a strong association between ME/CFS and enterovirus infection; but ideally I think you would want to look in the brain and nervous system (in postmortem studies), because neurological symptoms are really the core of ME/CFS. It is known that when enteroviruses like coxsackie virus B enter the brain, they form a persistent infection of the astrocyte cells and the neural progenitor cells. So these perhaps are the areas where we should be looking for enteroviruses in ME/CFS. Two brain autopsies on deceased ME/CFS patients did indeed find enterovirus in the brain.
See:
Viral Isolation from Brain in Myalgic Encephalomyelitis (A Case Report) 2001 J. Richardson www.oocities.org/vitamvas/viralfm.html 
Enterovirus in the Chronic Fatigue Syndrome 1994. McGarry F, Gow J, Behan PQ. www.ncf-net.org/library/enterovirusincfs.htm

Also, it is now known that enteroviruses such as coxsackie virus B form two distinct types of infections in the body: first the normal lytic enterovirus infection, and second the noncytolytic enterovirus infection.  The latter resides purely within human cells, and is not easily detected. Nevertheless, Dr. Chia, and other researchers such as Dr. Nora Chapman, suggest these hard to detect noncytolytic enteroviruses may play a significant role in ME/CFS. Thus ME/CFS studies need to search for both lytic and noncytolytic enteroviruses in ME/CFS patients.

Hi Charles Shepherd,

Also, if you look at the list of enterovirus studies by British researchers from 1983 to 2001 (which includes Prof. Gow's studies), these all found a pretty strong association between ME/CFS and enteroviruses such as coxsackie virus B. This list of enterovirus studies can be found here.

As far as I can see, there seems to be solid and consistent evidence over several decades for the role of enteroviruses in ME/CFS."

Thanks again to Hip and Dr. Charles Shepherd

"Hanging Fire" – Dr. John Chia

I remember well the ME/CFS researcher Jonathan Kerr. Many people might not remember that he wrote a paper on enteroviral involvement in ME/CFS, a copy of which can be found here.

“The role of enterovirus infection as a trigger and perpetuating factor in CFS/ME has been recognized for decades.”

Soon after this, Jonathan Kerr "was disappeared" from ME/CFS research. I wonder where he is? I miss his efforts on our behalf. The more I think about his departure, the sadder I get. In the last few years we have lost a number of serious ME/CFS researchers. These losses have been distressing.

On a less disturbing note, we might put forth the idea that ME/CFS research has never been so broad and far-ranging as it is today. Some would say that we are making progress, and that hope stands right around the corner (probably leaning against a wall, whistling - or smoking a cigarette).

In this world of optimism, one astonishing item continues to be set aside or ignored: the enteroviral association with ME/CFS established by Dr. John Chia. Something needs to be done about this. Dr. John Chia's critical work should be put center stage. Dr. Chia holds in his hand a key to unlock a part of this illness.

Recently there has been a fine set of video interviews with this unsung hero of ME/CFS. Part one can be seen here with the others following. These interviews are conducted by Llewellyn King, who speaks with a knowledge and ease that is admirable. Llewellyn King’s series ME/CFSAlert has focused on many clinicians and researchers. However, this four-part interview with Dr. John Chia is the best. It is worth viewing these videos more than once - for the key points to sink in.

Ten years ago, Dr. Chia’s son Andrew became sick with what turned out to be ME/CFS. In his desire to help his son, Dr. Chia did what many smart people do - he turned to the past (history) - and studied the early literature of ME. Things fell into place for Dr. Chia as he reviewed the older, known connection of ME/CFS to enteroviruses. Enteroviruses fit the picture.

Early clinicians in the field, especially Ramsey and Richardson, suspected enteroviral involvement. This belief held particularly true in the UK, where the disease is known by its proper name - Myalgic Encephalomyelitis (ME). 

If one wants to get a real fright about the seriousness of this illness and what enteroviruses can do in the human body, read John Richardson’s “Enteroviral Medicated EncephalomyelitisSyndrome Pathologies”.

In time, the pursuit of an enteroviral association with ME/CFS lapsed. There are several reasons for this.

In 2007 Dr. Chia and his son Andrew Chia reignited this enteroviral idea and published a paper demonstrating a strong association of enteroviruses in ME/CFS.  The surprising and convincing aspect of their study was that they were looking at real human tissue – stomach biopsies. This is hardly ever done in ME/CFS research.

As a researcher/clinician, Dr. Chia has constructed a world of his own. He has gathered his profound insights through making no great new discovery. He has just connected the dots. His studies are the product of persistent, dogged effort. As he says, his work is not sexy. Dr. Chia and his son continue to build research into enteroviral involvement in ME/CFS.

Since his paper was published in 2007, no one has tried to substantiate or replicate his work. Why? How can his be?

Dr. Chia has left “something of significance” for us sitting on the table in plain view.  To get further with this it needs to be taken up by someone else. No thinking is involved. All it needs is the hard work of replication.

(InvestinME has done a great service in elevating Dr. Chia’s research. They invite him to speak each year. Unfortunately, his research efforts are at a standstill with his ideas gaining no traction. What is Dr. Chia supposed to do – replicate his own study?)

Anyone familiar with the research world of ME knows the implications of nailing down one corner of the illness through substantiating an association with an infectious agent.  Let me repeat that: if you nail down one corner of this illness with an infectious agent, you nail down the whole thing.

Instead, everyone wants to go in their own direction and solve this illness on their own. Is that the idea? - Everyone comes up with their own idea that will never be substantiated? Is this how real science is done today? Does the ME/CFS research world have to be that constricted?

Why doesn’t the Whittemore Peterson Institute (WPI), Mt Sinai ME/CFS Center, Ben Natelson, Peterson’s Simarron Research Foundation, Klimas’ Nova Institute for Neuroimmune Medicine, the Chronic Fatigue Initiative, Kolgenick’s Open Medicine, Jose Montoya at Stanford, or the CAA, step up to the plate and substantiate Dr. Chia's work?

The most likely person to pursue the enteroviral connection in ME/CFS is Ian Lipkin at Columbia. Lipkin has an inquisitive nature. I would be surprised if he is doing tissue biopsies, which seems the way to go.

It is time for someone to make a serious effort to replicate Dr. Chia’s work - and to find out what exactly it means. 

Nothing would get the government agencies or the drug companies interested faster than scientifically demonstrating a viral association to ME/CFS.

You can petition the government as long as you want but nothing will change until the science is built in a coherent fashion. Giving them a replicated study of Dr. John Chia’s work would be a very good first step. It would put a sudden halt to the research merry-go-round of the last twenty-five years. 

Whoever participates in this will get a very big feather in their cap.