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.

"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. 

Dr. John Chia with Llewellyn King

Just today I was speaking to a friend about Llewellyn King's gifts at interviewing people. Here is another example of his fine work, another section of an interview with Dr. John Chia. Dr. Chia is one of the very finest minds working in the field of ME/CFS.