"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. 

CFSAC Testimony of Anonymous #3

The testimonies of the recent CFSAC meeting are now online. They can be found here. Why these meeting cannot be streamed live and put immediately on the internet, I do not know. Much of a person's testimony is attached to his or her physical self, gestures and voice. To get the true feeling one needs to see the person presenting the testimony (when possible). It is so easy, it is done everywhere now. It is part of modern life.

The fact that these meetings were not streamed and made available immediately speaks to an "intention" - and that intention is "not good". The decision goes beyond stupidity and it is very worrisome - very worrisome. Things have meaning, actions have meaning.

The testimonies are worth reading in their entirety as they give a tremendous collective overview of ME/CFS.

If I were to pick one testimony that everyone interested in learning about ME should read, it is the testimony of Anonymous #3 - a person of a great courage. What this woman writes is like the very most precious gold. To mine more, read the CFSAC Spring testimony of Anonymous #3 here.

To the Members of the Chronic Fatigue Syndrome Advisory Committee:

Thank you for your service and for the recommendations you made at your meeting last May. In particular, I thank you for recommending that “chronic fatigue syndrome” be moved out of the wastebasket R codes of the United States’ next version of the International Classification of Diseases, the ICD- 10-CM.

In my testimony in May, I described my daily life as a severely ill ME patient. I got sick at age 20 and have been ill for more than 17 years; seven of them spent essentially bedbound. I’m sorry to report that I have lost more function since your May meeting. Now I often can’t lift a pillow from the floor to my bed, and I can no longer swing my laptop computer from my bedside table onto my bed. In order for me to lie on my back and type this testimony, one of my parents, who are my caregivers, had to lift and position my computer for each writing session.

Today I would like to tell you about my last doctor’s appointment--the only time I have been able to go downstairs, outside, and leave my home in the past year.

For severe ME patients, leaving one’s home is an extraordinary undertaking that requires weeks of preparation and months of recovery. A week before the appointment, my parents began to fill our van, which they have converted into an improvised ambulance, with items I would need for the trip. The day before the appointment, I struggled through my monthly bath in the tub and my mother washed my hair. Ordinarily, I bathe in my bed and change my nightgown twice a week, with help. Due to my extreme orthostatic intolerance, I can’t sit long enough to shower, even with the aid of a shower chair.

The morning of my appointment I put on street clothes for the first time in several months. This activity so exhausted me that I could not carry a lightweight purse. I tackled the stairs, which are next to my bedroom, by slowly walking down three steps on rubbery legs, then sitting and resting for a couple minutes, then wobbling down three more with support from the railing. From the foot of the stairs I was pushed in my wheelchair out to our porch, where my father had backed up our van to a loading platform he had constructed.

The bright colors of the outdoors dazzled me. After six months mainly spent lying on this mattress in my small bedroom with one window, I wanted to linger on the porch and take in the vast, arching sky, the touch of breeze against my skin, the hum of insects in the sunlit fir trees. But I had to lower my body onto the bed in the back of our van and rest with eyes closed, wearing earplugs to block the noise of traffic, so that I would have enough energy to get through my appointment.

At the hospital, I had to transfer five times. I heaved my leaden body from the van to my wheelchair, then to a bench in the waiting room where I lay motionless as 85-year-olds hurried past me, then back to my wheelchair, and finally to the table in the exam room.

All of this extra movement and sitting upright took so much of my energy that by the time I reached the paper-covered table, I could barely lift my arms. I lay there blinking at the harsh fluorescent light and wincing at the hospital noises: distant machines beeping, conversations, doors opening. I was glad my doctor was 20 minutes late, because the effort of changing from my street clothes into the hospital gown weakened me so much that it was a while before I could speak again.

And what was the result of my enormous effort in getting myself to the doctor? Essentially, nothing. My doctor renewed my prescriptions for thyroid medication and B12 shots, ordered a few routine blood tests--which came back normal--and did a cursory physical exam. Then she told me to come back in a year and walked out. She had no treatment whatsoever to offer for the sickness that has destroyed my life. Can you imagine HIV or MS patients getting minimal medical care only once a year?

At least she didn’t mock me like past doctors who have said such things as, “It must be nice to get so much attention” and “You’ll have a lot more opportunities in your life if you leave your home.” And in fairness, my doctor has been very good about completing paperwork related to my illness.

Back at home, my parents called a young woman from our local emergency squad and asked her to bring a special carry chair with handles so I could be carried up our stairs. While we waited for her, I lay on the futon in my mother’s office downstairs, a room I had not even seen for more than a year.

Many of my old college textbooks were on her shelves, and I stared at their spines, remembering my active life before I got sick. I took a full course- load, worked part-time, jogged daily, volunteered, and happily partied with my friends.

Now I can no longer read books. Now I spend up to ten hours per day resting with eyes closed, about six hours sleeping, and only short periods here and there listening to audiobooks or checking my email.

It took three people to carry me up the stairs in the chair, though my weight is normal. A few times, as they strained and sweated, I thought we would all go tumbling down the stairs. I clung to the banister, remembering how I used to run up and down those stairs all day as a teenager. Even when my ME was more moderate, I could walk up and down them whenever I wanted to.

Finally, I was back in my room, so depleted I could barely turn my head. And here I have remained for the past six months. A few times a day I walk to the bathroom, but mainly I just lie here, listening to the whoosh of my air cleaner. On my computer I see photos of my old friends, who have gone on to careers, marriage, children and beautiful homes. Outside my window, another year goes by.

Members of CFSAC, my doctor can do nothing for me, but you can. You can influence the Secretary of Health and Human Services, and in turn, the government and public at large. I ask you to please pass strong recommendations on the following issues:

1. Promote the study and awareness of severely ill ME patients--those who score below 10 on the Bell Disability Scale.

A. Count them. No one knows how many American ME patients function at my level or below because no one--including the CDC and the CFIDS Association of America--has ever studied us. The CAA, which promotes psychotherapy and exercise as treatments, has chastised severely ill patients for supposed “kinesiophobia” (fear of movement) and advocates mainly for people with mild fatigue or “unwellness.”

B. Study them. Encourage several research studies composed entirely of severe patients, those who function below 10 on the Bell Disability Scale or who require a nursing home level of care, like me. I’m not a scientist, but it’s logical that the underlying pathology(-ies) of ME should be more pronounced in severe patients and therefore easier to detect

in their bodies. Testing severe patients will have “trickle up” benefits for mild and moderate patients.

C. Include them. Severe patients should comprise half the cohort of all research studies to avoid skewing results toward mild patients. In order to include the severely ill, researchers will have to make accommodations such as sending phlebotomists into patients’ homes. I was able to participate in a Whittemore Peterson Institute study, in which I tested positive for HGRVs, because the WPI--under the leadership of Dr. Judy Mikovits--hired a phlebotomist to come into my bedroom and draw my blood. We may not be able to undergo invasive procedures such as spinal taps in our homes, but there’s no reason why we can’t provide blood, stool, saliva and urine samples to researchers. Stop excluding from your studies the very people whose bodies are most likely to yield answers for all ME patients!

D. Publicize them. Making severe patients the public face of ME is an efficient way to get medical professionals, lay people, and government agencies to take this disease seriously. Rather than being seen as an asterisk, afterthought, or anomaly, severe patients should be the focus of newspaper articles, advocacy materials, and the CDC website. As long as high-energy patients--those who can care for themselves and their families and even hold jobs--are seen as typical, the government will continue to starve ME research of funds. This is a disabling disease, and the severely afflicted are the most capable of showing that!

E. Make teachers of them. Medical school students should be required to make house calls to severe ME patients. Most doctors and researchers have no idea how disabling ME can be because virtually all the patients they see have mild/moderate ME. Why? Because severe patients have extreme difficulty traveling to doctors, or can’t travel at all. Even many ME experts have never met a severe patient in person. After seeing us up close, perhaps future doctors won’t dismiss us with “I’m tired too.”

F. Form a CFSAC task force devoted to severe patients. The Secretary of Health and Human Services has repeatedly ignored your resolutions, but there’s no reason why the CFSAC itself can’t create a committee to actualize the above recommendations for these most overlooked and underserved of patients.

2. Ask for a vast increase in funding. As I wrote in May, if our government believes in equal rights for equal disabilities, it must increase funding for ME research by twenty-fold. Even a private endeavor, the poorly named Chronic Fatigue Initiative, is spending $10 million on research--twice what our government outlays for ME or CFS each year. Ask Secretary Sebelius how she can justify spending on Multiple Sclerosis 100 times, per capita, what she spends on ME or CFS, when I am more disabled than anyone I know with MS. Why has our government left us to decompose in our beds?

3. Adopt and promote the new International Consensus Criteria (ICC) for ME, which were published recently in the Journal of Internal Medicine by a panel of 26 respected clinicians and scientists from 13 countries. Researchers must closely adhere to these strict guidelines to create homogeneous cohorts. Note that to receive an ME diagnosis defined by the ICC, a person must function below 50% of normal activity. While this requirement may be too restrictive for diagnosis, it should be observed for research. Doing so will keep the focus on more disabled patients and facilitate the search for biomarkers and treatments.

4. The term “chronic fatigue syndrome” should be phased out. In particular, research using the Empirical Definition--which was co-authored by Bill Reeves, Beth Unger and Suzanne Vernon--should not receive government funding. Research based on this definition is virtually meaningless because it does not correspond to any disease entity but to a hodgepodge of psychiatric conditions, simple tiredness and unwellness. Any research on “chronic fatigue syndrome” must be based on the Canadian Consensus Criteria, which, like the ICC, defines a distinct neuro-immune disease and requires patients to function below 50% of normal activity.

Patients who don’t fulfill the ICC or CCC should not be admitted to studies of either ME or CFS because they confound research results.

Thank you for reading my testimony, which took me five weeks to write because I can concentrate for only short periods.