("ad astra per aspera" - "a rough
road leads to the stars")
Several summaries have emerged of the IACFS/ME
conference, for those who are interested in the details. The first is the
transcription of Dr. Komaroff's summary at the end of the conference. We have Patricia Carter of ME/CFS
forums to thank for this. Another summary is by Dr. Charles
Lapp. It can be found here
Several paragraphs in each summary caught my
interest and both deal with a favorite subject of mine: Dr. John Chia and his
research into Enterovirus and ME/CFS.
From Patricia Carter's transcription of Dr.
"Dr Chia reported again at this meeting, as he
has in the past, the expansion, the latest summary of data from a remarkable
report and a remarkable amount of work, Enterovirus Antigen and nucleic acid
found in biopsy samples from stomach in cases and control subjects. Finding very
marked differences in the frequency of both antigen and nucleic acid in CFS
patients compared with controls. He then also reported that when you took
the biopsy specimens that these tests suggested contained enterovirus and
injected them into mice that, in fact, you found when you sacrificed the
mice, evidence of enteroviral infection, a virus in the mouse, indicating
that this thing lit up looking like it might be an infectious agent of the
biopsy tissue actually produced an infection in another animal.
To me, these results are very impressive, but it's
also depressing to see that, to my knowledge, no academic enterovirologists
have sought to try to reproduce this, not even in bulk, to take the samples
that already have been collected at enormous effort by Dr. Chia and test them
themselves to see if they get the same results that Dr. Chia does. It's a great
shame and I hope it changes."
In fact two of the infected mice died over a weekend, one on a Friday, one on a Monday. "If they do not believe in death, then what do they believe in?" At least one enterovirologist, and perhaps two, have worked with Dr. Chia's samples.
And then there is this from Dr. Lapp:
"Dr John Chia is an infectious disease specialist and pathologist from Lomita CA. He and his son contracted CFS/ME and were found to have enterovirus infections in their stomachs (see his article in the Journal of Clinical Pathology
, Jan 2009. After treatment with a Chinese herbal called oxymatrine (there is no other known therapy for EV) both have recovered and stayed well. Dr. Chia reported to us on further EV studies from his lab. To demonstrate the infectiousness of EV, Chia injected the lysate (Osterized tissue or homogenate) from 24 EV-positive human stomach biopsies into immune deficient SCID mice. When the mice were later sacrificed, 13 out of 20 were positive for EV in their spleens, but only 1 of 10 control mice were positive. However, Chia could not culture the virus from any of the spleens suggesting that although the infections were transferred, incomplete viruses were formed in the receiving mice. In a second study, Chia obtained pathology specimens from 27 women with CFS/ME who had undergone total hysterectomy or salpingo-oophorectomy for chronic pelvic pain. 24 or 27 specimens stained positive for EV, whereas none of 15 healthy control specimens were positive. Three SCID mice were injected from EV-positive specimens and the mice were sacrificed at either 2 or 5 weeks. Spleens and fallopian tubes stained positive for EV at both 2 and 5 weeks, although spleen stain was less obvious at 5 weeks. Western blot studies of all mouse fallopian tubes demonstrated enteroviral proteins. (Ed. note (Lapp) Dr. Chia is making a strong case for enterovirus as a common trigger for CFS/ME, and these studies imply that the infection is transferable. I found it interesting that chronic pelvic pain was localized to the infected fallopian tube in his patients, and that surgery relieved the pain. Sadly, no one else has taken on the task of confirming Dr. Chia's studies. Also there is no known antiviral therapy for EV - just an ill tolerated herbal preparation. Hopefully someone with Chia's expertise will investigate this further and confirm these important findings!)"
It has been seven long years since Dr. Chia's important paper
of potential enteroviral involvement in ME/CFS. No one has significantly picked up on his study. As the backbone of his work, Dr. Chia has studied and revisited the history of ME especially in the UK. He has personally re-ignited important and forgotten associations. Dr.Chia is not coming out of nowhere on this.
"We need to declare EV as one of the causes of ME/CFS. It has been 30 years!"
"Enteroviruses need to be accepted as one of the causes of this illness this year, or else we will wait another ten or more years before a drug will be available for this disease. You need to ask the researchers at Stanford and at the meeting why they are not working on enteroviruses."
I personally have witnessed several virologists flatten Dr. Chia's work. A prominent virologist (regarding Dr. Chia's work, which I had sent him) gave this blunt assessment: "It's crap". There is evidence that this prominent virologist might have altered his views - and perhaps might be willing to help.
We need to move on beyond these attitudes and find out what Dr. Chia is finding. Dr. Chia himself says: "I have spent considerable time trying to convince that I am right. Now it is time for others to prove that I am wrong."
After this IACFS/ME conference it seems that things are turning in a more positive direction for Dr. Chia's stupendous efforts in trying to get at this nasty illness. For those interested, there is more information on Patrick W. Calvins' Quixotic blog.
And then there is the recent very exciting news regarding new drugs for Hep C. One drug, Sovaldi
, from Gilead was approved by the FDA and is both well tolerated and extremely successful in treating Hep C. Two more amazing Hep C drugs are in the pipeline, one from Abbot and another from Bristol-Myers. There is some hope that one of these drugs might be effective against enteroviruses. "If this proves true, it will make all the difference in the world".
So there is some urgency here, and some real hope - but only if Dr. Chia's work is followed up on.
Glad to see this posting. I do hope someone follows up on Dr. Chia's work and that more research attention is focused on enteroviruses.ReplyDelete
I have now met and listened to Dr Chia on several occasions and I was at the IACFS/ME conference in San Franciso - 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 stil 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
More attention needs to be focused on gastroparesis and CFS.Delete
Having been involved in CFS for 25 years, the more severe cases of CFS sometimes also present severe gastroparesis. Gastroparesis can be one of the most disabling and uncomfortable symptoms of CFS, but it recieves little attention. I wish Dr. Chia well, and thank you for this piece.
Hi Charles ShepherdDelete
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 (eg brain fog, sound sensitivity) are the norm.
Thus unless you look for enteroviruses in the areas where the symptom exists, ie, 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 coxsackievirus B enter they brain, they form a persistent infection of the astrocyte cells (see www.ncbi.nlm.nih.gov/pubmed/24027313) and the neural progenitor cells (see www.ncbi.nlm.nih.gov/pubmed/21471247). So these perhaps are the areas in which 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
Enterovirus in the Chronic Fatigue Syndrome
1994. McGarry F, Gow J, Behan PO.
Also, it is now known that enteroviruses such as coxsackievirus 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 ShepherdDelete
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 coxsackievirus B.
This list of enterovirus studies can be found here:
I 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.
The FDA will someday accept his work.ReplyDelete