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