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?
President Hilary Clinton – that made me smile:) We need to make that happen!!!!
President Bernie Sanders-that would make me ELATED! Victories in the Democrat primaries COULD MAKE THIS VISION POSSIBLE!!!!!
2031 – I’ll be 82 – still in my prime! Good thought experiment Cort, but I’m hoping Ron Davis, Dr. Montoya, Dr. Klimas, Suzanne Vernon and all of the others brilliant professionals working so hard on this effort will be successful before then.
But hope alone is a poor currency for producing results. Please let us all know when the new consortium of ME/CFS organizations comes up with the 2016 action / awareness program that we can participate in… And thanks for your great work.
I stand in awe of your work Cort, thanks very much. Jack
Yes, Actually the end date is a little deceiving. I actually had them making progress rather quickly. In five years they would be able to help even the severely ill significantly. I then had them take ten more years – perhaps longer than necessary – to knock the disease(s) fully dead.
Excellent job, Cort! A great vision and also the way I see it playing out. Please check out the documentary the Battle of Amfar, which follows the story of Dr. Mathilde Krim and Elizabeth Taylor joining forces to fight against AIDS.
Brilliant, creative line of thinking – although I suspect you must think it’s bleeding obvious, smile, especially as someone who’s been an advocate for far too long a time.
I’m not sure about IBS and Fibromyalgia coming under the same umbrella but I seem to be behind the times in that regard. It’s just people with those diseases (if diagnosed correctly) don’t have the adverse affects that happen to people with ME/CFS – that muscle chemistry thing (I’m no good at describing things, but you know what I mean)… I’m not talking about increase pain etc as a result of doing too much (I have pain issues) but the muscle chemistry thing.
No need to reply. I commend you for what you do here.
I have CFS and IBS, there’s a definite link.
Thanks, I wasn’t meaning to imply one can’t have CFS and IBS. I’m just not happy about Fibromyalgia being brought under the same umbrella as CFS as people with Fibromyalgia don’t have the PEM that people with CFS do.
That was like reading a much awaited fairy tale except it might come true one day. For me personally, I would be old but you never know…I still wish for the best all the time as we all do. Sincerely, Javen
I did Not enjoy this article. It made some very interesting points, said some very hopeful things but the title was misleading in a way that I personally found very offensive…guilty of being gullible , I got sucked in with hope….”what if, could it really be? ….and then to pretend to visualize that Ron Davis son is better “looking back” and all that was for me ,at least, really too much. I do hope with all my heart that he does get better and we all owe so much gratitude to that family for sharing their story, especially Whitney, allowing his life to be seen for what it is ,for what severe m.e. really is capable of doing… and to Ron Davis, while you are one of the heroic fighters for us….but i found it offensive to pretend hes bgotten better when he hasn’t. How bout trying to spread his story further in the media instead of writing make believe stories. I usually enjoy your REAL articles Cort, but this one cuts too close to the bone. ouch.
Excellent again, Cort. What could be added is a quickening timeline alteration to the creative conceptualization of successful outcomes. Since so many of us are noticing a speed-warp-like effect in our lives, I will add this:
“It is interesting to note that in 2018 the fields of constructive political activism and recovery rates from ME merged at an unexpected, exponential tipping point. In June 2019, President Bernie Sanders’ citizen-empowered committees (independent of government-corporate collusion) located billions in missing and misallocated funds originally intended for ME/REDD/NEID. The new Localized Centers for Wellness Excellence mandated said funds for immediate disbursements for increased disability coverage, alternative treatment protocols free to all, emergency funding for ME experiencers, and other out-of-the-box yet pragmatic remedies. Refreshingly, funds reached the ME folks without administrative costs or delay: These maddening life-leaching boondoggles had been bypassed by late 2016’s newly successful efforts toward complete elimination of corporate/governmental theft nationwide. These breakthroughs allowed millions of citizens and their families great relief from their personal struggles, inspiring an even greater wave of activism that tumbled like dominoes across the planet. Environmental and GMO pollution that had been found to be strongly accelerating genetic damage related to ME causation was cut 90%; studies that year of chronic illness and quality of life demonstrated that people on the whole were beginning to recover their lives and expand the wellness steps of self- and other-empowerment. Millions became solvent and financially independent from government assistance. Followup studies concurred that science/citizen partnerships involving “new paradigm” multidisciplinary, patient-centered wellness initiatives evolving from mid-2016 on were largely responsible for kickstarting this renaissance in personal and planetary health.”
If something is not conceptualized and intended, it cannot be created. Wildness counts: I’ll paraphrase here Goethe’s classic statement about boldness having magic (results) accompanying it. We have seen corruption and evil beyond our wildest dreams this century, and now it is time for the opposite.
Thanks Beca, I love that Goethe quote:
Whatever you do, or dream you can, begin it. Boldness has genius and power and magic in it.
Interesting article Cort…..except I would make two suggestions. Paradigm shifts often occur because of outsiders:
1) I usually avoid politics in polite circles but you would be more likely to get a response from a President Sanders than a President Clinton. I’ll vote for Clinton if it comes to it but I’m not sure she’s someone populist enough to consider issues that affect your average Joe, Jane, Jose, or Ming.
2) Instead of men, why not put in a female scientist instead in your story? I may be nitpicking here but the article reflects a bias of scientific breakthroughs as coming from a male when it’s just as likely from a female (i.e. 50% of the world’s population). Many of the top ME/CFS clinicians and researchers today are women. We want to encourage any budding/ promising scientists, whatever background, out there.
Warren Buffet has said the reason why he’s considered one of the US’s top investors was because he was only competing with 50% of the population most of the decades he’s been active.
Good point about the women. Why not a woman entertainment executive or researcher…I agree.
I assume you are following the work of Dr. William “Skip” Pridgen and virologist Carol Duffy, Ph.D. There is at least one model for a female researcher.
See examples of more famous people w ME/CFS and need to enlist them, such as Cher, who all have heard of, as advocates to get more publicity, funding, better treatments by 2020.
I’m not sure how we can avoid the subject of politics Anonymous when the GOP has not only been hammering away at trying to destroy the ACA but has never stopped their attempts to repeal the New Deal and put an end to Medicare…fortunately some of the guys running now aren’t the sharpest tools in the shed and they don’t realize they aren’t supposed to be talking about it out in the open so we do have a small window to open some more eyes on the subject. Yes, I also agree Senator Sanders seems much more concerned about healthcare but if we are forced to vote Hillary, it’s a vote we can make knowing she isn’t a part of the nuts who just wish we’d shut up and die if we can’t be productive units anymore. I applaud you for bringing the subject up and it’s a shame you feel the need to remain anonymous to do it, but I’ve been there and I understand. Now that I’ve been forced out of the closet by succumbing to the illness, I don’t really have a need to remain anonymous anymore. Not when it comes to M.E. anyway.
Your thought experiment sounds like the outline of a great film script itself.
It does! What a great story that would be – and we would be in it! You never know. Anything is possible. It really is..
I fully agree with the primary goal of raising awareness. This is the sine qua non condition. You have nothing without awareness. You don’t have research without a pre-existing form of awareness. And obviously you don’t have funding. To me, this is where we have to start (I mean, continue…)
Agreed. Building awareness that ME/CFS is a serious disease that have been neglected which can be turned around is essential.
Thinking about what ME/CFS must be thought of in order to be in the place it is in is very constructive. You have to devalue it as a disease in order to ignore it. (Or you just have to be a real SOB to understand that it is serious and still ignore it.) I suspect it is a) most devalued and b) not considered a real disease in which breakthroughs can happen.
Creating the awareness that ME/CFS is real and serious and can be fruitfully studied is EVERYTHING. Once that understanding is set then everything proceeds from it: the money is found, researchers flock to the disease and ultimately treatments are found.
First, though, we have to carve away the negative conversations that are holding it place. I think the IOM and P2P reports and all the news stories have made good progress in doing that this year.
Maybe good treatment doesn’t have to take billions of data and dollars as most seem to assume. What about an approach like that of Dr. Jay Goldstein, now retired, who had an extensive knowledge of brain and neural networks and chemistry, and would test patients in all those dimensions with small amounts of the fastest acting medications, to find out what helped. He did not bother with trying to know what the ultimate cause is of these illnesses but focussed on treatment, using all he understood and could learn about neurology and our neurological weaknesses or difficulties. Apparently he had a great deal of success in helping improve lives.
Why aren’t any doctors or researchers utilsing and building on his discoveries? Maybe I am mistaken and some are. If I knew of any I would go there right away. I don’t care about the ultimate cause or what DNA differences I might have. What is tragic is that the focus on logic which seems to demand a first cause and then known sequence of effects may take forever to find out. I think that the problem is not that there isn’t enough wealth of money and data but that we aren’t looking in the right way. Find out what is going on neurologically and find the simplest, least expensive ways to treat it. I don’t accept the belief that it is so complicated and difficult. Maybe it is not. Maybe we are just looking the wrong way.
Loved it, Cort!
Multiple diagnoses – ME/CFS,systemic candidiasis, severe food & chemical sensitivity, encephalopathy, coeliac disease, gynodynia, IBS, peripheral neuropathy, ‘Allergic to the C20’,total exhaustion, immune dysfunction (not deficiency – hyper-activity), Selye’s adrenal exhaustion…..
Where do we stop the list of differential diagnoses which affect persons severely ill with ME? Maybe with the insulting Yuppie Flu?
Ill with ME since 1977 there has been some progress, no longer averall hostility there are tiny chinks of light. Yes now functioning tolerably well but mostly with my own efforts and research plus one tolerant Doctor. But even my doctor caught recriminations & warnings from the “Health” authorities for being out of step with ‘average’ prescriptions. Does anyone with ME look for an AVERAGE doctor?
I liked your trip into the future and sincerely hope medical consciousness takes a leap forward even sooner than you visualised.
Why don’t we include some functional drs who spend hours researching the root cause of these syndromes. I have been reading a lot about the role of healing the gut, and the effect on healing the immune system. Is anyone else being influenced with this thinking?
I think it’s really exciting – as the recent blog on did probiotics cure my ME/CFS indicates. If the gut flora really is so crucial then we’re much closer than we think.
Leaders in their respective fields who have focused on ME/NEID and the gut-brain connection for decades include Jeffrey Bland, Trudy Scott, Dr. Dietrich Klinghardt, Dr. Wally Taylor, Dr. Christiansen, Dr. Ben Lynch, Mike Muetzel, and many dozens more who frequently give free podcasts and downloads on the net and also hold frequent online free summits with dozens of broadly-informed functional medicine practitioners. Every single facet of ME is covered in these summits, especially the empowering of patients through breakthroughs in self-care for those who do not have the ability to travel to pricey and/or ineffective clinics. Depression/anxiety, gut health/digestion, immune balance, hormonal balance and the practice of environmental health self-care and non-GMO nutrition are all closely linked in the many reports of those who are recovering from long-term ME.
This is a great story, but many would love to make a shorter story with quicker outcome. Ian Lipkin thought this could be cured much quicker, with major funding, although this is a guess. Maybe story is being rewritten even now and could consider some subchapters:
2015 was the landmark year of the IoM and P2P reports recognizing this as a major disease, needing R&D, and was followed OCt 29, 2015 by NIH Director Francis Collins committing more resources to R&D, and private funding of biomarker studies for severe ME.
2016 started out with CDC offering first CME course on M.E/CFS on Feb 17 by four experts, to increase awareness to all physicians.
(All of above should be facts).
This was one of the most attended CME courses offered by CDC, showing the high interest in this topic, and leading to extensive news coverage including 60 minutes, TED talks then increasing funding.
New Chapter: The Rotaries worldwide finally finished eradicating polio, making it a past scourge like Smallpox, that no longer exists. They then turned their focus on curing M.E. educating all rotaries worldwide and their communities including schools, colleges, hospitals. Over 3 years, the diagnosis rate increased from 10% to 70% and gave visibility to “The Forgotten Plague”.
New diagnostic panels focused on ME/CFS vs other diseases differential diagnoses were developed, that dropped time for diagnosis from 2-5 years to 3-6 months, and number of doctors seen to get diagnosis, from 20-30, to an average of 3, greatly saving medical costs and helping the overburdened US healthcare system.
Would love to see others add their chapters, for a quicker finish, so we can all live happily ever after!
Your idea about the Rotary Clubs getting involved to help us sounds great as well as the diagnostic panels helping doctors learn to diagnose this accurately. Thank you! There are plenty of charitable organizations looking for a worthy cause and the ones with a wide network like the Rotaries or the others which have deep pockets could help us so much.
CDC needs to track this disease and see high interest, then the numbers will be apparent, but we must all show interest. Be sure you and every person you know affected, sign up now and watch CME course on ME/CFS offered by CDC 1pm EST at no charge, 1 hour, by 4 top experts, Feb 16,2016. Ask every doctor, nurse, psych etc to watch this since will not likely be another CDC Ground Rounds for quite awhile. Encourage all to take for CME credit so that this would show high interest to CDC, NIH etc, leading to higher funding. See: http://www.cdc.gov/cdcgrandrounds/archives/2016/february2016.htm
Cort thanks v much for this interesting vision – one small yet important request a could you clarify the meaning of this critical sentence?
“Remarkably, their analyses indicated that the drugs, supplements and food products to produce shifts in the patients immune systems were already.”
Did you mean ‘already in existence.’?
Yes. I got that from Broderick’s work at NSU which suggests that repurposed drugs or supplements may if taken at the right amount, time and order may be able to reset the immune system.
Hello Cort! Is there an email for you and a website to contact ?
SOMEONE WORKING ON FIBRO
Could we start a world wide petition?
It’s easy. Just go to Change inc. online and start one — or a hundred others on other petition sites. I note that most of the ones I have signed have been successfully resolved.
Just one word from me…”Help”
‘Encephalitis Variosa’ is perfect.
15 years is a very long time to wait. We already have the answer and the potential to treat effectively right now.
Thanks for this. I only have an ipad and I can’t read the comments ever as big boxes cover half of the text. Has anyone any ideas how to rectify this? Thank you
Can you try to refresh your browser and see if it’s still there?
Given my age and the fact I’ve had ME for 29 years, I’ll probably bevdead in 2031! Doesn’t it just figure.
Thank you, Cort. Great writing. One big question in all of this : Why do women compose at least 70 to 80 percent of the cases of CFS/ME/FMS???
When we know the cause we will know that answer to that. They also dominate in autoimmune and pain conditions.
I want it fixed in 2016. They’ve had enough time.
I’ve been in too much pain, been treated as if I were crazy and lazy, and told it’s all in my head.
I haven’t been able to do so many things – the list would take all my energy for three days.
2031 is TOO FAR AWAY. I may not even be alive.
Please watch, and ask every doctor you know to watch, CDC CME course on MECFS coming no charge, one hour on Feb 16th, 2016, at 1pm EST at http://www.cdc.gov/cdcgrandrounds/archives/2016/february2016.htm
The more people who watch and learn, and show CDC that there is high interest, the higher the chance of increased funding, research, effective treatments.
Frankly, I don’t know which is more depressing – getting this completely solved in 2031 (a long ways out) or Hillary Clinton as President.
:)….In this timeline it’s mostly fixed in 5 years.
What a lovely fantasy ? I hope like heck that at least some of it comes true – though I also hope you’ll allow for the possibility that some of the research breakthroughs may happen outside the US.
Thanks for that, Cort. It made me shed a tear.
I would like to add one thing to your vision.
“In 2016, Dr. Ian Lipkin discovers proof that ME/CFS and Autism are the same illness. The massive energy and resources of Autism parents are combined with the ME/CFS advocates and things really start to happen quickly.
At first, the name of ME/CFS is changed to Adult Onset Autism. Then eventually both illnesses are called Encephalitis variosa.
In the end, not only do a million (or more) people with ME/CFS become freed from a devastating illness, but thousands of families who have children with severe Autism get to have conversations with their children and get to know them for the first time without impaired brains.”
There is a type of prayer where you envision the thing you want happening. I guess your vision is like one of those prayers. I especilly would like to see Whitney Dafoe healed in the future, too.
Agreed; great point. Was it Dietrich Klinghardt who had first mentioned CFS as “Adult Onset Autism”? Lyme is inextricably interconnected too. Lyme parents often have children with Autism or spectrum-related diseases. It is said by those who have done “forbidden research” outside the bounds of what is allowed to be spoken by the PC-policed, not-so-free-speech TED Talks that biowarfare experiments have occasionally slipped into the public domain and added complicated elements (Morgellons, etc.) to this already complex, multi-factor Encephalitis Variosa.
If everyone would print out the IOM report called “Beyond Myalgic Encephalomyelitis / Chronic Fatigue Syndrome; Redefining an Illness; Report Guide for Cinicians” and give it to one general doctor (or any doctor who should be diagnosing people with ME/CFS) that would sure help in raising awareness.
I’ve already given it to two general doctors.
Link to this report?
IoM short report summary that is 4 pages and easily digested is at: https://iom.nationalacademies.org/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf
Full report is much longer if you have a lot of time and brainspace.
For most current information, be sure to sign up for free 1hr CDC Webinar 1pm EST by 4 top experts at:
Chronic Fatigue Syndrome: Advancing Research and Clinical Education
OpenMedicineFoundation.org is now starting there study of severe M.E. patients, also, so 2016 is indeed a key year, as Cort mentioned. See End-MECFS.org for OMF study.
I’m sorry I can’t cut and paste on my current computer, Lettie. You can find it by googling “IOM Report CFS”.
MarkC, I was talking about the Guide For Clinicians. We don’t have to read it, just give it to a doctor. Although it is not a difficult read.
Reading this brought tears to my eyes! I don’t think about being well a lot because it seems so far away. Thinking that it’s possible in my lifetime as a 69 year old patient is very emotional.
Thanks for imagining, Cort! We will keep on advocating, spreading the word to get more people involved to reach that critical mass, and supporting research.
haven’t been officially diagnosed with chronic fatigue but I am always fatigued, some days more than other, the worse when my body goes into a what i call a ‘zombie’ state…my legs feel very heavy, can’t think well, have to lay down; no energy and then will have to sleep for 2 days for it to lift; it happens all the time; i have no control over it
Just a thought – although I’m sure you’ve been there – still, you never know. I have fibromyalgia also, and it’s not only the sometimes unbearable pain that touches almost every part of my body (especially in the mornings) but as you say, this ‘heavy legs’ feeling, where I would just lie in bed unable to move.
However recently my rheumy put me in contact with a cardiologist who has treated people for chronic fatigue. He put me on a medication called midodrine. The bad news is that it hasn’t touched the pain at all – but a far as the fatigue goes – I’ve been out of bed every single day since I started the drug four months ago! And not a single nap! I’m still not an energizer bunny by any standards – although being in your mid-forties and having two very young children probably doesn’t help with that even in ‘normal’ people. But the difference to the ‘heavy leg’ thing I was feeling has been nothing short of miraculous.
I always thought the pain and the exhaustion side of the disease were connected- and maybe they are, but so far (fingers crossed) I seem to have vastly improved my fatigue side of the problem with this medication. Yet I don’t often hear it talked about – I wonder why?
I do have fibromyalgia, osteoarthitis, depression, sleep disorders, and the strong everyday flu like pain (fibro) is a challenge but when the super strong pain flares come (fibro) it is unbearable; thinking about they so many women; is there some kind of dysfunction going on with our hormones; it feels like it is a virus or infection that can hide itself very well from tests; or is it a central nervous system all gone haywire; or all of the above? i rarely get colds or the flu; i suppose because my immune system is on overdrive- i take cymbalta ambien baclofen and when the super bad pain comes in for weeks then i have to resort to oxycodon…it is good to know that there is an active interest in the medical research arena for these disorders
I usually find your articles interesting or informative.
However, I was misled by this Title. I didn’t like the article.
I didn’t think about people not getting the blog via the subscription which made it clear that it was a thought experiment. I’m altering the title.
Extremely misleading title, 20+ years of suffering, you would think I would know better. So gutted right now!
Sorry about that. The email blast made it clear what the blog was about; I didn’t think about those who didn’t get it. I will amend the title.
Great work. Imaginative and hopeful. Politics aside, it is the politicians sons and daughters, the celebrities, cultural icons, the professional sports figures, the famous and the wealthy that need to experience CFS firsthand or through a loved one, and then speak up about it. We need more activists! The collaboration, a new trend in research, sparked by Ron Davis’ beliefs about sharing information and resources with everyone surely will be key. I like the new name, no committees to screw it up!
Thank you Cort! Vision and intention are so important; love that the article is a blend of what is and what could be!
much better title
Great Article, it supports the theory I had about the reason for the renaming or rather new disease they had planned to call SEID which just seemed a way to accomplish a few things but mostly to obtain some kind of diagnosis for patients who where getting no results under the diagnosis of ME, CFS, CFIDS, FMS, GWI, etc…but just get them diagnosed so that SOMETHING could start in the way of treatment for them as well as getting enough people under the umbrella of SEID to make it impossible for the medical and medical research community to ignore us. It never seemed a cover up to me as it does with some, but then I say that here in the US where I did just recently find out that as bad as things are here for us, that we actually have it better than PWMEs in the UK. Wow, when has the US ever been able to make such a claim? Of course there was a lot of pushback with the SEID diagnosis so it will be interesting to see how we move forward.
Very discouraged that this “cure” isn’t real. I’m 67, and getting worse.I can barely walk to my fridge and bathroom. Very sick for 28 yrs. Sometimes I faint and am too weak to call 911.The noise in the hospital would wreck my brain. I don’t have much life left in me. Please find a cure soon enough for me. I still love life. Please, I’m still bright, motivated and loving. What is wrong with my body??? Please work for me and all my cfs friends. I’ve watched too many people I love die. Sooo sad! I have a wonderful husband and two Grandkids, the light of my life. Please figure it out, as rocket scientists do. There is so much suffering. I’m not ready to die, I want to alleviate suffering in the world. That’s my purpose! Not lying down!
Love to all,
I don’t personally see Bernie Sanders or a $100/$200 M endowment as the necessary solution. Although that much money would likely result in a lot of progress. Nowadays we’ve become enamored with the brute force, Big Effort approach – and it can work, as with HIV. But it was the Wright brothers who flew, rather than a better endowed, government-funded effort, which flopped (both, literally). Not that research funding isn’t important – but from my personal experience I think there is also still a need clinicians and others who take time to sit back, to observe and listen to their patients, to search and to put things together. I’ve noticed that there is so much that can be gained from simply taking time to use the information we get from our patients. I do like the part about collaboration. And yes, money is needed. But don’t forget that a lot of clues are already out there – and what may largely be needed is to slow down, put things together and fill in the gaps.
People don’t fear getting CFS. Until they do, nothing will happen. L
One theory is that they are all auto-immune disorders, and the common link is gut bacteria issues and “leaky gut” syndrome. An “auto-immune” disorder is one in which the immune system attacks healthy tissues and hormones in the body. Also, unhealthy gut bacteria can cause leaky gut syndrome.
Leaky gut allows undigested proteins into the blood stream, and the immune system attacks them because they are foreign. Sometimes this also causes the immune system to start attacking beneficial proteins in the body that have similar structures to the undigested food proteins, and that is an auto-immune reaction.
For example, gluten proteins have similar structure to the proteins that comprise the thyroid. (Your body’s cells and hormones are largely made of specific proteins). This is why some doctors recommend that people with auto-immune disorders (eg. Hashimoto’s hypothyroid) go gluten free.
Cherie I couldn’t agree more. We are not born with leaky gut syndrome,it largely comes about after having antibiotics that destroy the ‘good’ bacteria in the gut which encourages over colonisation by Candida. Candida not only grows on the gut surface but the cells elongate and penetrate the gut wall which is the cause of undigested food particles getting into the bloodstream. Over prescribing of anti-biotics has caused many problems, but would anyone want to admit that unless it becomes economically challenging? Antibiotics are indeed a magic bullet in extreme illness, but used indiscriminately when one’s body would heal itself in a few more days time, is, to say the least, deeply questionable.
One problem is, patients do like to walk out of the surgery with a prescription in their hand.
Audrey, I agree completely! I have Hashimoto’s hypothyroid, and there’s a good chance my yearly antibiotics starting from when I was a toddler had something to do with it. I first had ear infections regularly, then yearly sinus and/or respiratory infections. About 10 yrs ago, I started refusing antibiotics. Now I recover by catching it early, taking a day or two off, and sleeping as much as possible.
I had my gut bacteria tested about 13 years ago, and my gut yeast was 10,000 times higher than the healthy amount. I’ve been taking strong probiotics (60 *billion* organisms per capsule) and it definitely helps, in addition to refusing more antibiotics.
It would be amazing to hVe a cure for cfs/me and fibromyalgia it’s such a horrible illness doctors don’t no enough about the illness