One way to accomplish something is imagine a future in which it has already occurred and then work backwards and show how it happened. Doing that illuminates what needs to happen now in order to produce that result. This is a thought experiment that explains how ME/CFS and FM were completely beaten in just 15 years….
DATELINE: Jan 29th, 2031 – Federal officials Announce the End of Encephalitis Variosa (aka chronic fatigue syndrome, fibromyalgia and others.)
Today the NIH announced that the medical world had conquered its first chronic illness. Encephalitis variosa, formerly known in its various manifestations as chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, interstitial cystitis and vulvodynia is no more. The most remarkable thing was not that the medicine had conquered its first chronic illness but that that it had done so with these diseases.”
NIH officials proclaimed we know how EV begins, we know to successfully treat it and we know how to stop it from occurring. Whitney Dafoe, the man who had helped spark the movement after becoming seriously ill with the disease himself, applauded the NIH and many other institutions for working together to bring the disease to an end. Sitting next to him As before and after pictures of Whitney flashed on the scree, his parents Ron Davis and Janet Dafoe sat with tears streaming down their faces.
“Hundreds of millions of people with these horrific diseases thank all of you for putting aside ego and personal gain to work in a collaborative manner to vanquish these diseases. I know – I was there. We can’t thank you enough.”
A more unlikely conclusion could not be described. Fifteen years earlier Whitney Dafoe lay in a dark room unable to tolerate any stimuli. Emaciated and feed through an IV, with ear muffs and eye shades to block out sensory inputs, and unable to communicate Dafoe’s future was more than bleak. Dafoe had been diagnosed with the most severe form of the worst kind of disease possible. His disorder – chronic fatigue syndrome or ME/CFS – had been ignored by medical funders for decades.
Dafoe, however, had helped provide the clues that enabled researchers not just to solve the mystery of ME/CFS but in a remarkable turn of events – an array of other diseases as well. Never had the medical world seen such a turnaround.
How it Happened
In 2016 ME/CFS afflicted a million people in the U.S. yet was amongst the poorest funded diseases. It had been that way for decades.
Promises of increased funding from then NIH Director Francis Collins bolstered the small but vocal group advocates for ME/CFS most of whom were sick themselves. They despaired of their ability to raise the hundreds of millions of dollars they knew their illness probably needed.
Little did they know that change was in the air.
Several years earlier, Jennie Pluffe, the daughter of the head of a prominent lobbying firm came down with infectious mononucleosis while in college. Instead of getting better over time she got worse. She left school to rest at home and got worse. The best doctors in Washington and then the Mayo clinic provided no help. Finally, the Pluffe’s got a diagnosis, their daughter, now bedridden, had a severe case of chronic fatigue syndrome (ME/CFS). There was nothing they could do but hope.
The Pluffe’s refused to believe that. When they found out how little money was being spent on the disease they sprang into action. Instead of raising funds for research, however, they took a different route. They began to pour their time and considerable resources into a multi-pronged effort to increase awareness and funding for ME/CFS. Their stated goal was to get people diagnosed but they really had other plans in mind.
Fifteen years later Jennie’s father David explained:
“Getting people diagnosed so they could get help was really our secondary goal. We knew that getting them diagnosed would help them manage their disease and give them some peace, but even if they were diagnosed we knew that few doctors had the knowledge or tools to treat them.
What we really needed was more political clout to address the funding gap. Our real goal was to use these newly diagnosed patients to build a political and financial base from which to attack these diseases.
We thought it was possible. I had many political contacts from my work and from working on Presidential campaigns. Plus we’d all had the experience of talking to someone about ME/CFS and/or Fibromyalgia and having them state that they knew someone with it. Donations to research foundations, however, were paltry relative to the spread and impact these disease had on people’s lives. Many of the patient organizations were doing good work but they were hanging on by a thread financially.
We knew that about a million people in the U.S. had ME/CFS but only a few thousand were visiting prominent ME/CFS websites. Upping that number tenfold was our first order of business.
It was really a numbers game. We knew the more people we could get to learn about this illness the better chance we had of finding individuals who would make a different in it.
We wanted to take advantage of the resources and community that had been developed. We put funds into upgrading selected websites and created a marketing campaign to drive ME/CFS patients to them. Once the patients got to the websites they were given information not just about the disease, but about its history and the need to become active politically, and we provided them the means to do that. We measured our success by the number of new subscriptions we got.
The plan worked. Intensive advertising on the internet resulted in a 100,000 new ME/CFS patients subscriptions in a year. The increased number of subscriptions gave us access to more donations allowing us to do more marketing, hire more staff, and provide a better experience for ME/CFS patients.
We also focused on increasing the number of healthy volunteers assisting the movement. Healthy volunteers form the backbone of many chronic illness advocacy movements but few had shown up for ME/CFS. As we got our message across that ME/CFS was a serious and legitimate disorder that needed their help, spouses, siblings, friends and co-workers saw ME/CFS in a new light and volunteered to help out.
The 100,000 subscribers and the army of healthy volunteers helped us successfully engage in high visibility advocacy. Our ability to successfully get 100,000 signatures for a White House Petition put President Hilary Clinton on notice and she responded. (She learned that one of her daughter’s best friends had a severe case of ME/CFS.) Congressional leaders lobbied for more funding at the NIH and the CDC and got it.
A media campaign resulted in stories being placed in prominent media outlets including, crucially, a 60 Minutes story of three ME/CFS patients highlighting the decades of neglect they had endured. Other prominent media outlets including Oprah, and the New York Times with David Tuller’s biting investigative series followed. With that subscriptions to the websites doubled again. We now had 200,000 subscribers we could access with a flick of a finger.
Among the new subscribers were Megan Gupta, daughter of Svrinda Gupta, the head of a major hedge fund; Cynthia Rawlins, the daughter of entertainment mogul, John Rawlins; and Ji Xuan the son of Jing Xuan, one of the top neuro-immune researchers in the world.
Each would play major roles in the successful fight against chronic fatigue syndrome, fibromyalgia and other diseases.
Rawlins made ME/CFS a cause celebre in the entertainment industry. Several actresses who had struggled with the disease including a recent Oscar award winner came out and made moving TV spots. Rawlins assisted in getting ME/CFS coverage on major networks and helped get the “Canary in a Coal Mine” film on the Oscar platform. Rawlins turned out to be a one man funding machine bringing in another hundred million dollars to the project.
Jiang prompted the NIH and other institutions to, for the first time, devote significant resources to examine the long term effects of infection.
The End ME/CFS Project
Meanwhile Stanford geneticist, Ron Davis was working furiously to save his son’s life. The first year of the End ME/CFS Project had had mixed results. His intensive study of severely ill patients had uncovered some possibilities but not the major breakthrough he was looking for.
Then Hedge Fund founder Svrinda Gupta announced he would bankroll the entire project. “I’ll give you three years and a hundred million dollars. It’s all on you” he told Ron. “I just want my daughter well again.”
As Linda Tanenbaum nearly doubled Gupta’s and Rawlins’ money with matching grants and private/public partnerships, Ron Davis created a unified, strategic approach to solving ME/CFS involving many of the top researchers and top research labs in the world. Every four months the End ME/CFS team – which would grow to more than 100 researchers and several dozen research groups – would meet for a weekend to talk, hash out issues and decide on the next step.
The team would generate significant insights into the disease over the next two years, some of which allowed Davis to pull his son back from the brink. Whitney was still devastatingly ill, but he was no longer in danger.
The breakthrough they were looking for eluded them, however. Then a young graduate student, Travis Broder asserted that the statistical analyses they’d used were inadequate and proposed a novel new technique.
Davis gave him the go ahead. Three weeks later a protein regulating microglial activity popped out in Broder’s analysis The protein had been hidden because its levels didn’t need to be high for it to have an effect. Instead the immune context the protein occurred in was the key. Broder’s analysis suggested that a variety of immune signatures commonly found in ME/CFS allowed the protein to unusually effect microglial cells
If the protein operated in one immune context it produced ME/CFS, in another fibromyalgia, and in another IBS. In some immune contexts it produced all three. Multiple other sub themes were possible.
Jiang found that infections, some of them unnoticed, but many involving the Epstein-Barr virus were mostly responsible for launching each disease. They did so by permanently altering reconfiguring how the immune system talked with the nervous system.
With that it became clear that the key was to shift the immune system back to a context where that protein acted normally. Teams at several universities began using supercomputers to devise ways to do that. Remarkably, their analyses indicated that the drugs, supplements and food products to produce shifts in the patients immune systems were already available. Some, ironically, were rarely used for immune disorders. All they needed to do was to give them in the right dose, order and frequency to shift the ME/CFS patients immune systems back to normal. As the results from the different teams clicked, the clinical trials began.
Added by the immense patient registries that had been developed as well as the use of wearable devices that allowed researchers to gather biological data in real time, the trials were done surprisingly quickly and cheaply.
Significant improvement was found but the researchers felt they could do better. The data from the trials was fed back into their supercomputers and the results sent to Davis’s team. New studies uncovered new immune factors and the treatment formula’s were tweaked.
Just two years after the end of the first trial, the second trial set of trials began. This time the results were astounding. Even long-term patients with debilitating illnesses showed significant improvement.
Jiang’s discovery of an distinct immune signature which appeared early in the diseases allowed doctors to quickly intervene with patients having trouble recovering from an infection. Anyone complaining of severe fatigue and post-exertional malaise underwent similar checks. Treatment protocols then bounced them out of their incipient illness.
Ten years later as the team completed refining their models, ME/CFS, fibromyalgia, IBS and others were essentially no more.
The End ME/CFS effort would be hailed as a template for solving chronic disorders. Other disease groups followed its lead to successfully produce strategic, collaborative efforts to understanding and treating their disorders.
End of Thought Experiment: The End of ME/CFS (and Fibromyalgia).
Multiple ways to bring about the end of ME/CFS and fibromyalgia can be envisioned but an effort focusing on a broad-based effort to bring more and more people into the fold seemed to me to be the surest. (Any wealthy lobbyists out there?)
This mode of attack, however, is hardly utilized. Most efforts raising dollars for ME/CFS focus purely on research. Research, of course, is vitally needed but I would argue that an awareness campaign in conjunction with research could in the end provide many more dollars.
The goal would be to bring the awareness of ME/CFS as a serious disorder that needs more funding to as many people as possible.
How do you seen the end of ME/CFS and FM coming about? What could we do now to have that happen?
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