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The Beast, the Disease and the Breakthrough: A Way Forward for ME/CFS and Fibromyalgia

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By Cort Johnson • • February 16, 2017

The Beast, the Disease and the Breakthrough: A Way Forward for ME/CFS and Fibromyalgia
Reprinted with the kind permission of Cort Johnson and Health Rising.
The “Beast” was just twenty-five years old. A physical specimen, David Fajgenbaum went from gym rat to invalid incredibly quickly. First his lymph nodes swelled, then red dots appeared on his chest. This medical resident got so fatigued that he began stealing naps in empty exam rooms.  He became temporarily blind in one eye and then in two weeks gained 70 pounds. His ability to think plummeted. His doctors were stumped – cancer, lupus and mononucleosis were all suggested – and discarded.
He slowly improved after treatment with chemotherapy drugs and walked out of the hospital, but a month later his symptoms came rushing back. The Mayo Clinic diagnosed him with Castleman Disease (CD) – a rare disease that afflicts about 20,000 people in the U.S. – about the same number as Lou Gehrig’s disease.
Health and a New Disease Model
When he first became ill, Fajgenbaum spent 4 1/2 months over a seven-month period hospitalized. At one point, he was administered last rites.  Another bout with the illness left him near death again and he was given five years to live. Over the next couple of years, he came close to dying five times.  He realized that letting the research process proceed in its rather leisurely manner likely meant a death sentence.
Fajgenbaum got into action. He did two things: he began to make a meticulous record of his weekly immune test results to see if he could discern a pattern, and he began to assess the entire field.
Like other CD patients, Fajgenbaum would end up flipping between relapses and remissions over the next couple of years – a pattern that ended up serving him well. Meticulously recording the results of his weekly blood tests, Fajgenbaum noticed his immune system began changing a full five months before his latest relapse.
First his T-cells turned on, then two months later an immune factor called VGEF started bumping up.  Pay close attention to the next step because this is exactly what Ron Davis and other researchers hope to do.
Looking upstream, Fajgenbaum found that activation of the mTOR immune pathway could explain both. The next step was simple: scour drug databases for drugs able to inhibit mTOR pathway activation.
A kidney transplant rejection drug called Sirolimus (Rapamune) that no one in a hundred years would have considered for Castleman’s disease, popped up. Fajgenbaum dropped his cancer drugs and started on Sirolimus and his immune system returned to normal.
It’s not clear how many Castlemans patients the drug will work for, but three years later, Fajgenbaum is completely healthy and is still disease free.
Relapsing-Remitting / Good Day – Bad Day ME/CFS Patients a Key?
Fajgenbaum had a disease that gave him — with its relapsing-remitting status — a shot at capturing the disease process as it proceeded.  While little is heard about it – and no attention that I know of has been given to it in the research literature – ME/CFS does have its own subset of relapsing-remitting patients that a similar approach might work on.
An online Health Rising survey suggested that many people with ME/CFS experience significant and repeated remissions from which they later relapse. A former doctor, epidemiologist and longtime ME/CFS patient, Dean Echenberg described what that’s like:
Over the past 30 years, the illness has waxed and waned and not at all in a subtle away.  It is almost like I have an on and off switch.  The remission phases have varied in timing but not in character. At times I seem to be completely better. So much so that for years I thought I was “cured.”  During this phase, even close family who didn’t see me when I was in the attack phase had difficulty believing that there anything was wrong with me.
But then, when they saw me in the attack phase, (the bed to couch and back again phase) they had no doubt.  All they had to do was look at me and they knew I was seriously ill. I would seem perfectly normal, then BAM.  It was obvious to them that, suddenly, there was something seriously wrong with me. This was especially problematic for me during the earlier decades when I became ill.  If I saw a clinician during a remission phase, I was almost embarrassed to tell them what was wrong, it seemed so far-fetched.
Extensive testing of these patients could possibly reveal pathways that are becoming activated or de-activated in ME/CFS as they become ill. These patients could have a different disease entirely or they could have a turn-off switch that allows them to temporarily escape ME/CFS. If the latter is the case, both a turn-on and turn-off switch could be identified.  The task is a bit harder with ME/CFS because we don’t know that it is an immune disease or which factors to test. Nor has anyone that I know highlighted the relapse-remission (R-R) subset.
In lieu of identifying an R-R subset, several good-day /bad-day studies that are underway may also identify which pathways get activated (or de-activated) as patients get worse or better. Ultimately, attempts could be made to use drugs that turn those pathways on or off.
New Disease Model
Fajgenbaum began to understand the critical need to think outside the box. I recently had a conversation with Ron Davis in which he asserted that it was essential for us to think about chronic fatigue syndrome in new ways.
Fajgenbaum began to wonder if the accepted wisdom around Castleman’s disease was wrong. The lymph nodes doctors believed were driving the disease looked exactly the same as the lymph nodes in people with rheumatoid arthritis and other diseases. Plus, IL-6 didn’t always correlate with disease relapse, and chemotherapy used to treat the tumor believed to be producing the lymph node issues across the body didn’t always produce results.
Something else had to be happening. Ultimately, Castleman’s disease went from a disease believed to be caused by tumors that produce cytokines to a disease caused by a hyperactive immune system that produces cytokines. It went from a disease primarily treated by chemotherapy to a disease treated immunologically.
Flipping Biomedical Research on its Head

“Depend upon it, sir, when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.” Samuel Johnson

Becoming a patient had changed Fajgenbaum’s approach to research.  Fajgenbaum had never considered the biomedical research process problematic until he came to be a patient, but the inefficiencies present quickly became apparent.
Faced with a dismal diagnosis and a five-year life expectancy, Fajgenbaum dove into action. After Josh Summer, a young man with another rare disease, urged him to produce a game plan “to drive the sometimes rickety research train toward a clear destination,” Fajgenbaum contacted Castleman’s researchers and set up a meeting.
The meeting revealed an isolated research community stuck in procedural and methodological issues much like chronic fatigue syndrome (ME/CFS) has been.  Few researchers collaborated with each other, and many – coming from different fields – didn’t even know of each others’ work. Disagreements about basic issues such as disease terminology and which cells were worth studying left research efforts floundering. No consensus criteria for diagnosis had been produced, medical information on the disease was often wrong (the UpToDate website was not ‘UpToDate’), and the accepted model for the disease didn’t make sense. Plus, there was zero patient advocacy.
Realizing that the disease was in desperate need of a game plan, Fajgenbaum changed course. Upon completion of his medical degree, he headed back to college to get an MBA at the prestigious Wharton School of Business and produced a road map for a disease cure. Drawing on what he learned, Fajgenbaum formed the Castleman Disease Collaborative Network (CDCN) that was designed to facilitate collaboration, mobilize resources and invest in impactful research.
It wasn’t just Castleman’s disease that was the problem. Fajgenbaum had become schooled in problem solving at Wharton. Looking at the way we approach disease from a problem-solving perspective, Fajgenbaum came to believe that the way the medical profession, in general, attacks diseases is slow, inefficient and wasteful.
The current research paradigm is usually driven by a grant application process where individual researchers are rewarded for creative grant applications. Fajgenbaum realized that a process which rewards individual initiative can easily ignore the needs of a field.  Fundamental problems (such as diagnostic criteria) can hamper a field for decades if no one in the field steps forward to address them.  (Witness the Fukuda Definition in ME/CFS). A field can grow rapidly or not depending on which researchers it happens to attract.
If no one is watching out for the needs of the field, they very likely will not be met.  Overarching strategies dedicated to highlighting basic research priorities and knocking them off one by one will likely not be developed. Plus, the competitive nature of the grant application process prevents collaboration, and patients are often excluded from the research process completely.
Fajgenbaum used his Wharton Business school experience to strategize. The Castleman Disease Collaborative Network (CDCN) Fajgenbaum created set out to advance disease research in three phases.

First, they connected 400+ physicians and researchers via meetings and discussion boards and 6,000 patients and supporters through online portals. Researchers were asked for a list of possible studies and Fajgenbaum’s team developed a list of high priority research projects, one of which included sifting through lymph node samples for pathogens that might be triggering the disease.
The next step in that project included making a list of the top immunologists in the world to test the samples (if this sounds like Ron Davis’s vision of how an ME/CFS consortium would work, it is…). Then a bit of serendipity struck. One of Fajgenbaum’s partners had a connection to Ian Lipkin and Lipkin – their top choice –  agreed to help out.

The CDCN also created a state of the knowledge resource, established an ICD-10 code and convened an international symposium to establish diagnostic criteria, and is building an international patient registry. It was able to increase research funding ten-fold between 2015 and 2016.

In the meantime, the first drug for Castleman’s Disease was FDA approved.
Rare Diseases Make Good 
Prevalence statistics indicate that chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) are not rare diseases, but in other ways they are similar. Low funding levels plague ME/CFS, FM and many rare diseases.
(The NIH does not list funding levels for Castleman’s Disease. The fact that it does not list funding levels for Sjogren’s Syndrome, irritable bowel syndrome or Chorodoma either demonstrates another strange inconsistency.  Because the NIH uses data mining searches to come up with its funding totals, there’s no reason it can’t come up with numbers for those diseases – it just doesn’t.)
Even rare diseases can be successfully attacked. Josh Summer’s Chorodoma Foundation, for instance, brought in $2,000,000 for a rare type of bone cancer that affects 1 in 125,000 people. Only 2,400 people in the U.S. have it, yet the foundation is currently screening six drugs. ME/CFS and FM patients may howl at the discrepancy, but in some ways Chorodoma is easy compared to ME/CFS and FM; the diagnosis and proximal cause of the disease is clear – a tumor.
The same is true for Castleman’s disease. Fajgenbaum’s sudden collapse when he was twenty-five was accompanied by widespread organ problems.  It was clear from the beginning that Castleman’s was an immune mediated disease. Contrast that with ME/CS where no real consensus around cause has emerged. A strategic approach, nevertheless, is beginning to show up.
Ron Davis’s vision of an international consortium taking on ME/CFS along the lines of the Human Genome project has yet to been achieved, but there is some movement to bring order and a common vision to this wide and varied field. Suzanne Vernon has been promoting ways to mature this field for as long as I can remember.  Zaher Nahle, the Research Director of the SMCI, took a similar path to Fajgenbaum. After immersing himself in the medical field, he went to the Kennedy School of Government in order to learn how to make the biggest difference. The talent and the vision is there – the resources are not yet but they are emerging.
The Pathways to Prevention Workshop for ME/CFS identified research priorities and gaps in current research that informed the NIH’s RFAs. Those RFAs require that the new research centers collaborate with each other and provide a common data center.
The Open Medicine Foundation has pledged to make its data public. A Common Data Element (CDE) project that requires NIH research studies to use common data elements will allow studies to be directly compared for the first time and that should help produce a new research definition. The Solve ME/CFS Initiative is expanding its Patient Registry.
Some of the infrastructure, then, is being built yet both ME/CFS and FM have so far to go. As welcome as any increase in funding is, the NIH’s RFAs for ME/CFS are simply a down payment on the funds really needed to build a strong and vibrant field.
An organized, efficient, well-resourced approach to ME/CFS can be created. Autism’s rise to significant funding was bolstered by a $25 million contribution, the unification of three organizations and the development of a united front. Something like that could happen in ME/CFS or FM.
Over a million people in the U.S. likely have ME/CFS, most of whom don’t know they have it. Millions more have fibromyalgia. Every effort to raise consciousness, every media event like Unrest, every blog or media post shared, every book like Valerie Free’s “Lighting Up a Hidden World” promoted, every sharing of our stories in any number of ways expands understanding, recruits new allies and potentially touches the people who will make the big difference in this disease.
A recent conversation changed one group’s approach to a treatment for muscle wasting disease. Realizing that their proposed treatment probably works better for ME/CFS, they switched diseases and are now focusing their efforts on ME/CFS. It’s not clear that their approach will work, but the trigger was sharing: they learned about ME/CFS from a conversation with Dr. Montoya. (A blog is coming.)
Most people are too sick to do much. We can’t build a truly successful effort on the bodies of people with this disease, but we can reach out, we can find the allies who have the strength, the commitment, the guts, and the resources to make the difference this disease is calling out for.
More healthy people like Mary Dimmock, Linda Tannenbaum and Carol Head are out there. The big donor able to pledge the $10 million a year or more to lift this field onto its feet is out there. The person able to declare that they’ll pledge $2 million a year, if five or ten other people join them – that person is out there. The horrific effects of this illness call for things like that to happen. Our job is to share, share, share – so that it does.

About the Author: ProHealth is pleased to share information from Cort Johnson.  Cort has had myalgic encephalomyelitis /chronic fatigue syndrome for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort's and other bloggers' work at Health Rising.

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