Striker drugs or terrain modulation?

Here in Minnesota, I try to escape the role of a patient advocate for a few hours and recapture my own reality. Often I go into the Minneapolis Institute of Art, a very deep and broad collection that takes you into unexpected realms. The museum is always near empty. I am not complaining about this, but it does say something about the larger "culture" in which we live.

I have many favorites here and I visit them each time as if they were old friends, which indeed they are. The above portrait by Goya is high on my "favorites list" and represents for me what doctoring is about - in this age or any age.

It is entitled "Self-portrait with Dr. Arrieta". Goya painted it in 1820 in appreciation of his physician, who saved his life. The inscription at the bottom, painted in oil paint, reads, "Goya gives thanks to his friend Arrieta for the expert care with which he saved his life from an acute and dangerous illness which he suffered at the close of the year 1819 when he was seventy-three years old. He painted it in 1820."

This painting speaks for itself - with subtleties that reveal themselves on close and repeated viewing. In this world of ME/CFS, there are a number of doctors who match Goya's idea of Dr. Arrieta, both for skill and devotion. One of them is Dr. Dan Peterson, who was recently interviewed by Debra Waroff on ME/CFS Alert. As quickly as this twenty-minute video appeared on the internet, it disappeared - for unknown reasons. ProHealth has a written transcript of the interview here.

I stood by chance in a room with Dr. Peterson at the IACFS/ME conference in Reno, NV, in 2009, and witnessed an outpouring of love for this physician from his patients. It was a powerful moment, perhaps the most moving public testament that I have ever seen. Since then I have had the opportunity on a number of occasions to see Dr. Peterson making presentations and lobbying for more research into this nasty illness, ME/CFS.

At the FDA meeting this spring in Bethesda I stumbled into the room where Dr. Peterson was sponsoring, along with Simmaron Research, a small, informal but powerful roundtable discussion regarding treatment. Other physicians were present, including Dr. Nancy Klimas and Dr. Derek Enlander, both of whom provide support and care in the old-fashioned manner of Goya's Dr. Arrieta. The discussions were both lively and informative and more interaction between well-meaning clinicians should be taking place. This specific (pre-FDA meeting) gathering was entirely the result of Dr. Peterson's effort, spending his own time and money to make this happen. Dr. Peterson is a generous soul.

In recent years Dr. Peterson has reached out to establish research and treatment relationships with many other people, most noteworthy being Dr. Andy Kogelnik of the Open Medicine Institute. This looks to be a fruitful collaboration.

I have witnessed similar but larger discussion formats instituted by InvestinME each year now, where they gather a large group of researchers and physicians in one room to have day-long discussions.

In March, Dr. Peterson made a presentation of a clinical study of his use of Vistide in ME/CFS. An article on the use of this drug by Cort Johnson can be found here. Vistide is a heavy-duty antiviral drug that needs to be carefully managed. Dr. Peterson has by far and away the most experience with this drug - and also with Ampligen. Dr. Peterson uses other modalities, also that are in the category of what I would call "striker drugs". They are designed to knock the hell out of a target and allow (or hope to allow) the immune system to get back on top of whatever. I myself have met a number of individuals who have gone through Dr. Peterson's treatments and come out the other side being able to build a better life. On the other hand, I wonder how many patients "blow out" on his treatments?

In looking at Debra Waroff's fine interview I found myself wanting to ask how Dr. Peterson determines that a particular patient would qualify for treatment with Vistide - or for that matter with Ampligen? He obviously makes his decision based on viral titers and other tests - and on his clinical judgement. The specifics interest me.

It is noteworthy that in this short interview Dr. Peterson does not speak of lyme disease or its coinfections, nor does he address mycoplasmas or mycotoxins.

Debra Waroff speaks of Dr. Peterson as the "Father of CFS". In this she is partially correct, as there were two fathers of CFS - the other being Dr. Paul Cheney. Each of these physicians has continued, in straight-line fashion, their separate pursuits of the diagnosis and treatment of this illness. The manner in which they diverge in their approach is worth noting, as their angles of approach are so different and almost seem unbridgeable. One might even believe that they are dealing with two different illnesses. And yet their patient cohorts must be similar, both involving patients coming from all over the world.

If Dr. Peterson utilizes heavy duty drugs to strike a particular target ("a serious drug for a serious illness"), Dr. Cheney eschews this, leaning more in the direction of "terrain issues", the larger contextual field in which the illness pathology operates ("The microbe is nothing, the terrain is everything"). The language of Dr. Cheney does not intersect at all with Dr. Peterson's. With Dr. Cheney there is no mention of Valtrex, or Ampligen, or even Acyclovir. Instead, from Dr. Cheney we hear terms like bison cell-signalling factors, trophic factor, Vaso Intestinal Peptide, adult stem cells, MAF 314, GcMAF, BLAK water, Isoprinosine (Inosine) - all used variously in an effort to alter the terrain instead of directly striking an approximate or assumed target. When Dr. Cheney does bring out the "big guns" to attack a virus it is Artesunate or Colloidal Silver.

Dr. Cheney's ideas are presented in a lecture in another post on this site. The ideas presented in this lecture are totally fascinating. Dr. Cheney has a very individualistic diagnostic device in his IVRT echo machine, a device to which he is seriously tethered. So far very few people seem to be paying attention to Dr. Cheney's important diagnostic and treatment criteria. This is not understandable to me, this marginalization of perhaps the most acute and complex mind in the field. One hopes that Dr. Cheney's impressive work does not go in the direction of Dr. Jay Goldstein's.

While Dr. Cheney maintains a relatively withdrawn or private image (in spite of attending many conferences), he does have important interactions with various clinicians - for instance Dr. Shoemaker, Dr. De Meirleir, and many others outside of the typical ME/CFS arena.

Interestingly, Dr. Cheney also does not talk much about lyme disease. When he does, he is indecisive, as if he is unable to decide where this bacterial element resides in the larger picture.

These two physicians, these two "fathers of CFS" - Dr. Peterson and Dr. Cheney - represent the extremes. It is as if they are in an unspoken contest to get at this illness - from decidedly different directions, from poles as far apart as possible. The world created by the tension between these divergent approaches is totally fascinating. It is in the dynamism - the crunch - of these two approaches that progress is going to happen.

My conclusion, in watching the unfolding diagnosis and treatments in ME/CFS, is that more treatment discussions need to take place, particularly regarding this dynamic of drugs versus terrain modifications.  Many other clinicians - Guyer, Enlander, Klimas - live in the world in between, adopting items from both ends of the spectrum.

There is a great need to have conferences or retreats where treatments are discussed. Some clinicians give an indication of being able to play well in the playpen while others have not. This of course can present problems.

A treatment conference should be held inviting Shoemaker, Enlander, Cheney, Klimas, Peterson, Horowitz, Brewer, Chia, Lerner, Montoya, Bhakta, De Meirleir, Kogelnik, Mikovits and others. The Invest in ME format of one day for private discussions and one day for public lectures is decidedly the best. It would be important to first develop a clinical treatment protocol for newly diagnosed patients. (Additional attention should be given to the severely ill patients, who hold the key to this illness.) There are diagnostics and interventions that can be done now. If these clinicians waver in their confidence in being able to do this, I and other advocates and patients could give them some good starting points. Many of us have learned the hard way.

Laurel B.'s ME/CFS video

Here is a re-edited version of Laurel B's fine ME/CFS video. Laurel has done a service for us all in making this essential video.


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Moving a Severe ME patient

I was at the recent FDA meeting. Whether it is this meeting or any other government meetings, no mention is ever made of severely ill ME/CFS patients. No depiction of the real severity of the illness is recorded or given. There seems to be a constitutional allergy to depicting "the core of this illness".

This is true of government bureaucrats as well as patients, advocates, physicians, and clinicians – everyone. Many "half-sick", ambulatory patients give eloquent and heartfelt testimonies at government grieving altars. Regardless of the sacrifice on the part of patients, this information does not seem to impress anyone. Nothing happens.  This is a longstanding reality.

It is a structural problem – not embracing the deep seriousness of the illness. No one wants to go there.  

ME is a dangerous, debilitating, life-destroying illness of a frightening dimension. The government’s half-baked response to this illness shows great disregard - and manifests incredible cruelty towards patients with this serious illness.

Until those at the center of this illness - those in darkened rooms - are depicted and embraced and understood, nothing will happen at the government level.

In order to set the tone, videos of severely ill patients should be presented at the beginning of any government or private conference on ME/CFS. Voices from the Shadows, Josh Biggs' and Natalie Boulton's very fine film (or similar videos ), should be mandatory - to set the stage and to get the participants in the right frame of mind.

There is clear evidence that the government has no interest in this. Multiple times they have been given the opportunity to present visual evidence of the severity of the illness, and they have said – no.  The government is content to give a grieving altar to the moderately ill and leave it at that.

The very, very ill have big problems. Everything around them represents a threat to their health. They need to be protected at every level – protected from doctors, from realtors, from neighbors, from movement, from noise and vibration, from friends, from family, from hospitals, from water, air, chemicals, mold – from everything. 

Dr. David Bell & ME/CFS patient from ME/CFS patients on Vimeo.

My daughter recently wrote about her May 2012 move from one apartment to another. She writes her blog posts excruciatingly slowly - mostly from memory, using a voice recorder, and typing on a keyboard without using her eyes.  Among other things, my daughter suffers from photophobia and hyperacusis.

This 2012 apartment move was the first time my daughter had been out of the house since April 2010. She has been out of the house twice in seven years.

In April 2010, in a similar coordinated operation, we took her to a neuro-ophthalmologist.  I was concerned about her eyes. (I still am.) My eldest son flew in from Baltimore and, along with a MN friend, we drove my daughter the 12 minutes to the doctor's office. My daughter lay in the back seat of a Chevy sedan. As I was helping my daughter out of the car she said that she felt “like she had been beat up”.  (I learned something there.) We rolled her into the office on a wheel chair. The office staff was compliant. They lowered the shades and turned off the lights. The neuro-ophthalmologist did the first half of an eye exam and found nothing remarkable.  When the doctor left the very small office for a few minutes, my daughter got out of the examination chair and lay on the floor on a mat that we had brought with us. This seemed to disarm the doctor. A few minutes later we were back in the car, heading home. Once back in her apartment, my daughter recovered slowly - taking nine weeks to reach baseline. Moving an ME/CFS patient is a precarious business.

While this trip was difficult, and costly in terms of recovery, my feeling was that at least we had gained one doctor in MN. This turned out to be a delusion - as this physician proved unwilling to deal with my daughter through an advocate. Pleas to do so from another more compliant physician fell on deaf ears.

Recently I have learned from an ME/CFS friend a little more about moving severe ME patients. Here is my friend’s explanation:

“A car trip with CFIDS can be exhausting and unsafe, yet necessary to get to medical appointments. Lying across the back seat with no seat belts is highly uncomfortable and unsafe and the average backseat is rarely flat and small cars aren’t wide enough for a horizontal adult. Although a front passenger seat can be tilted back, it does not go completely horizontal and often is uncomfortable as well and the seatbelt can actually be dangerous to use with the passenger seat tilted down. 

After many months of research I decided to put an ambulance cot with seat belts in my van. I worked with an ambulance outfitter and we removed one of the back seats in my Honda Odyssey and then bolted the ambulance cot through the floor. This van-with-cot and harness seat-belt innovation has greatly improved my ability to get to medical appointments even if they are far away and even, though rarer, to occasionally make a nonmedical trip. It has made car travel possible in two very different, but equally critical ways:

1) It allows for long trips in both comfort and safety and one can also switch to the front passenger seat to be upright for a while. 

2) It also allows a CFS patient who can drive a few miles to have the ability to rest at any point during the trip as you can pull over and get in back and rest as long as needed before continuing the trip or errand. 

I was able to sell my old car for the same price I bought a 1996 second hand Honda Odyssey and I was lucky to get a free ambulance cot that had been removed in an upgrade. My only cost was the $200 installation. The cot is outfitted with pillows and a lightweight blanket and sleeping bag. A stick-on-protection film on the window reduces the sunlight. The original ambulance mattress was pretty hard so it's helpful to add a medium density latex 2” topper which can be cut to size.”

Circumstances now lead us to contemplate moving my daughter from Minnesota to Philadelphia. This is a much more complicated process and there is very little information to guide us, to help us to make decisions. One has to be extremely careful with a severely ill ME patient. Movement, sounds, smells, sights, vibration, touch can all be destructive for the patient – and not just in an incidental manner. I will write more about this later.

Mindy Kitei at the FDA

Paul Cheney lecture - March 22, 2013

Here is the first part of a Paul Cheney lecture given in North Carolina on March 22, 2013. It is entitled "Compassionate Use Treatment of Chronic Fatigue Syndrome using both chemical and probiotic (MAF 314) forms of GcMAF".

The lecture was given at the Forsyth Center Maya Angelou Center for Women's Heatlth and Wellness in Winston Salem, NC. It was sponsored by the Winston Salem Chronic Fatigue Syndrome, Fibromyalgia and Lyme disease support group.

The lecture was free to the public.

Teresa Simmons provides this title of one of the lectures: "Chronic Fatigue Syndrome as a cellular energy disorder related to poor redox buffering followed by progressive complications arising from a low cardiac energy system related to energy-linked cardiac diastolic dysfunction". The title itself gives a clue of what the viewer will engage in these videos.

Dr. Cheney has evolving and innovative treatments and this lecture will present his latest ideas. Thanks to Teresa Simmons for this video presentation of this important lecture.

Dr. Cheney gives public presentations every few years, encapsulating his unique treatment ideas and protocols. His lectures are long, usually three hours, and complex. They invite repeated viewing as they encompass so much information and presented in his inimitable manner.

Great progress is being made in the availability of research and treatment ideas in these complicated illnesses. I saw the 2009 lecture of Dr. Cheney in VA, which was only available to the wider audience on a DVD at a significant cost. Times are changing and now others worldwide have access to Dr. Cheney's latest thinking. Maybe other clinicians will view this and connect the dots - adding in and  testing out some of Dr. Cheney's ideas. And maybe some ideas will flow the other way, from the outside into Dr. Cheney's brain, made possible by the information disseminated in this lecture video.

The second and third part are here.

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.

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.