Sunday, March 31, 2013

Alexander Khoruts, M.D.

I first read about Alexander Khoruts and his work a good number of years ago.  He is right here in Minnesota at the University of Minnesota. He is a world leader in fecal transplantation and it is exciting to have him working so close by to where I live in Minnesota. Minnesota is not known to be a state that is aware of or gives legitimacy to ME/CFS (an understatement), so the possibility that a treatment for ME/CFS might emerge here is welcome news.

Here is an article on Dr. Alexander Khoruts, from the Guardian. As usual, the comments are interesting and informative.

Llewellyn King on ME/CFS

A friend sent me this article this morning. It is written by Llewellyn King,  a journalist who has come to champion this illness called ME/CFS.

This is an important article, especially for those who may want to educate themselves about this little recognized illness. Society in general takes a dismissive and disbelieving attitude towards this serious illness - and one wonders why?

The article can be read here.

We need to thank Llewellyn King for writing with such completeness and such clarity. Llewellyn King also covers this illness in his video interview journal ME/CFS Alert.

Thursday, March 28, 2013

Two articles

Two interesting articles appeared in the NY Times recently.

The first tells of a new MS drug that works on inhibiting oxidative stress.

The second adds to the recent articles on the fascinating field of gut ecology.

Sunday, March 24, 2013

Jessica's Story - Severe ME

Here is a video of Jessica, a young woman with Severe Myalgic Encephalomyelitis. Jessica has been bedbound for seven years. The video is entitled "Seven Years in the Making", and depicts the realization of her Birthday Wish.

Here is another film on Jessica entitled "The World of One Room". These powerful films highlight Myalgic Encephalomyelitis at its most fundamental core and we must thank Jessica for giving us this extraordinary view into her world. These videos are important.

Saturday, March 23, 2013

Dr. Omar Amin at the Physicians Roundtable 2013

I attended the 2013 Physicians Workshop in Tampa FL in January. This conference features researchers and clinicians dealing with chronic illnesses. It is a rangy affair with emphasis on “outside of the box” thinking. The conference is run by Sue Vogan and her husband Tim.  Sue is a phenomenon in many ways. Her husband is pretty amazing also.

The Physicians Roundtable takes place in January, usually in Florida. SueVogan appears to organize and direct this conference single-handedly. It is difficult to see how she does this.  

Sue Vogan personally makes no money off this conference.  Essentially she is a non-commercial person. Non-commercial people are a rarity in this field - as most people have their hand out for some sort of payment. Sue runs this conference for her own reasons – to bring help to others. She is sick of the Industry surrounding chronic illness, and this conference is an attempt to break out of it.

After enough money has been raised to float the conference, Sue gives away tickets to other interested parties - including yours truly.

The conference is designed to encourage conversation between practitioners and researchers.  Attendees come from the world of hepatitis, Lyme disease, ME/CFS, mold, heavy metals and parasites. The conference is run Gordon-style (no audio or video recording) in order to encourage participants to speak their minds on subjects. The conference is a combination of lectures and guided roundtable conversations.

This year’s conference included Stephen Bock, Dennis Hooper, Johnny Delirious, Lee Cowden, Ann Colson, Omar Amin, Armin Schwarzbach, Judy Mikovits, Chitra Bhatka, Stephen Fry and Warren Levin, among others. Scott Forsgren has posted the slides of a lecture by Ann Colson. It can be found here. In time I imagine that Scott will file a detailed report on this conference on his very informative site on Lyme disease and its complications. Scott covers many conferences and takes scrupulous notes and writes them up. He does a great service for all those who cannot attend these conferences. Scott says that he likes to do this - and he is good at it. 

I attended a good roundtable discussion on probiotics run by Steven Weil. It was very helpful in increasing my information on probiotics and their categorization.

This year’s conference was incredibly hard hit by the flu - and by winter storms in the northeast.  Fully a third of the registered attendees were not able to make it to sunny Florida. Foremost amongst those missing were Ritchie Shoemaker and Alan McDonald. It was rewarding to watch Sue Vogan cruise through this choppy sea with equanimity – unflappable this woman is.

While the conference was quite intense and went from early in the morning to after ten in the evening,  I did find a few minutes to step outside of the hotel and stand against a wall in the sun. These were relaxing moments.

From the "curiosity perspective", it must be remarked that Nancy Klimas’ inaugural NSU conference was scheduled in Florida right on top of this year's Physicians Roundtable. The Klimas conference day was determined eight weeks ahead of time, months after the Physican Roundtable date announcement. How can this be? There must be a reason for scheduling of a ME/CFS/Lyme conference on top of another one?  What could it be? Aren’t there other weekends in Florida in the winter?  Am I the only person who would like to have attended both? This was a bit irritating.

While the Physicians Roundtable follows the Gordon style, a few of this year’s lectures were videotaped - including several by Dr. Omar Amin.

Dr. Omar Amin gave a series of lectures right before and right after lunch. (I suppose, in terms of eating, there is never a good time for a lecture on parasites.) Dr. Amin is one of the foremost parasitologists in the world. He attended this conference with his son, Karim, who works with him. Parasites are one of those elusive elements that show up in chronic illness, lyme and ME/CFS.  Often it is understood that parasites need to be dealt with first on the road to recovery. Parasites can really confuse matters, matters that are already confused.

If the reader is looking for a parasite lab to do precise and accurate stool testing, your problem is solved. Take a look at these lectures and be convinced that Dr. Omar Amin’s Parasitology Center is the place to go.  If something parasitical can be identified, Dr. Amin will find it – and he has a treatment plan that will eliminate the problem.

The videos were made by Peter Cairns. 

(Sue Vogan hosts a radio program called In Short Order on Blog talk radio. This show covers a broad range of topics.)

Monday, March 18, 2013

Closing the loop

ME/CFS is often thought to be virally induced - especially in rapid onset cases. The early literature looked for viral association with enteroviruses, followed in ensuing years by other viruses - HHV-6, EBV, CMV and Parvo 19. Most likely, all of them will eventually be associated with ME/CFS, and we can look forward to Dr. Ian Lipkin's study for clarification.

Most of potential viral involvements in ME/CFS are measured by viral titers in the blood. Various clinicians - Montoya, Lerner - have attempted to "read" these titers, especially in regards to EBV and HHV-6,  and to give them diagnostic meaning. Their results have been inconclusive.

In several cases clinicians have done actual tissue biopsies on heart, stomach and muscle, looking for viruses or fragments of virus in ME/CFS patients. Most intriguing is Dr. John Chia's enteroviral study done in 2007, found here. I have seen the frightening slides of Dr. A. Martin Lerner's biopsies of heart tissue showing EBV intrusion. He stopped doing these heart biopsies after two or three cases - as they were dangerous to the patient. More recently Dr. Kenny De Meirleir, Dr. Vincent Lombardi and Dr. Marc Fremont have been looking at stomach tissue for HERV-related viral activation in this Whittemore Peterson Institute sponsored study.

I have shown my daughter's viral titers results to various ME/CFS physicians. Most glance at the sheets of paper and shrug their shoulders, saying nothing. I have shown various physicians results on my daughter showing consistently high viral titers to Coxsackie B3 and Coxsackie B4. Mostly they are mute in their response. Dr. Derek Enlander is an exception. In reaction to viewing high Coxsackie B viral titers, he said, "These might be significant." Once in a while doctors say that there is nothing that can be done with Coxsackie B. This is not entirely true. On Cort Johnson's fine site we find Dr. John Chia saying, "There is no doubt in my mind that this is a treatable disease."

And help could be on the way - especially with a little more clarity.

Unlike HERV- stimulated viruses and the set-aside XMRV, Coxsackie B3 and B4 are associated with various serious human disease states - myocarditis and diabetes for starters. Coxsackie B viruses are not seen as benign, happy viruses. Maybe part of ME/CFS is a coxsackie B3 virally induced myocadritis. That would explain a lot. 

And yet the world of Coxsackie B viral titers is not consistent. Viral titers for Coxsackie B are measured in various ways. Here is an example.

In December 2012 this result came back from Focus lab (through Quest).

B1    under 1:8            
B2    under 1:8 
B3    under 1:8
B4    under 1:8
B5    under 1:8 
B6    under 1:8 
reference: under 1:8

Meanwhile, the same patient in September 2012, three months earlier, had this result from ARUP labs in a coxsackie B viral titer test by neutralization.

B1       under 1:10
B2       1:10
B3       1:640
B4       over 1:640
B5        1:640
B6         under 1:10
reference: under 1:20

In  two results from the same blood draw of October 2009, my daughter got these discrepant results.

October 2009, at Focus Diagnostics
b1 1:16
b2 under 1:8
b3 1:16
b4 1:16
b5 1:8
b6 1:8

October 2009, at ARUP labs
b1 under 1:10
b2 1:320
b3 1:80
b4  over 1:640
b5 1:10
b6 under 1:10

By chance I have been doing the ARUP testing on my daughter for about eight years. There has been a consistent pattern over this  period. Focus labs have reported low or normal Coxsackie B antibodies while ARUP has reported consistently high Coxsackie B antibody titers for B3 (often 1:320 and 1:640) and B4 (Mostly over 1:640)  - all from the same patient. 

In the last few years I have become aware that Dr. John Chia also uses this ARUP test, also hitting upon it by chance. Dr. Chia says the ARUP test is more sensitive to picking up antibodies in ME/CFS patients. The Enterovirus Foundation recommends this ARUP test. 

This is what they say about it:
"Micro-neutralization test - Persistently elevated antibody levels for one or more enteroviruses over years can suggest a chronic enteroviral infection. The Micro-neutralization test is a very sensitive, specific test and only 11 enteroviruses, coxsackie B 1-6 and echoviruses 6,7,9,11 and 30 can be tested by using this method. Titers of 1:320 and higher are good indications of current infection.

It is important to note that only one commercial laboratory in the United States is recommended for this test: ARUP in Salt Lake City. These tests can be ordered directly from ARUP or ordered through Labcorp. If ordered through Labcorp, write on the form to specifically state to send this test to ARUP.

Indeed these more elevated ARUP test results helped Dr. Chia complete the puzzle of his rediscovery of the older association of enteroviruses with ME/CFS. The proof is in the pudding. Dr. Chia cured his son Andrew's ME/CFS (or put it in permanent remission).

It might be of interest if ME/CFS clinicians refocus interest in enteroviruses and test their patients for Coxsackie B and Echoviruses via neutralization at ARUP. The hope would be that Dr. Lipkin is also looking at this enteroviral association. If patients who formerly have low viral titers to Coxsackie and Echo viruses start coming back with higher titers through doing this ARUP test, interest in the association with enteroviruses in ME/CFS might be heightened - and lead to renewed interest in confirming what Dr. John Chia has found in tissue samples. It is a great mystery why no one has tried to confirm Dr. Chia's findings in 2007. There has to be a reason. What is it?

In 2007, Dr. John Chia and his son Andrew Chia,  found 82% of 165 patients postiive in stomach biopsies for VP1 - enteroviral capsid protein. VP1 testing for enteroviruses was done from blood from ME patients as far back as the late 1980's by Professor James Mowbray and Dr. John Richardson in the UK (until this VP1 test was "deeped sixed" by Wessely in 1989.)

For years I have heard that there is not a clear association of a virus with ME/CFS. Why does everyone look somewhere else when the potential for one viral association is sitting in clear view? 

To some this might look like an insignificant detail. Quite the contrary: a clear viral association (not necessarily cause) with ME/CFS would be a tremendously big deal - and potentially nail down one corner of this illness.

It is time to reignite interest in the association of enteroviruses in ME/CFS. Confirming this would be a  big step in the right direction - and perhaps encourage drug companies to wake up regarding enteroviral drug research. Nailing down an enteroviral associaton with ME/CFS would not take years of research. It could be done quickly. Dr. Chia has given us the start. Hepatitis drugs are coming down the pipeline - and they might work. Researchers, clinicians and patients need to do more to raise awareness of establishing enteroviral association with ME/CFS.

As patients we can help by switching out these tests and seeing what results are gotten.

Several more articles on enteroviruses can be found at InvestinME here and here