Writing about someone with chronic fatigue syndrome (ME/CFS) who dies is always tragic – tragic because of what might have been; tragic to see a once productive, healthy human brought down so low; tragic because of awful circumstances that inevitably occur. In John Falk’s case the tragedy, to my mind, is amplified a bit because of the extraordinary person he was and the extraordinary future he seemed to have ahead of him.
I didn’t know John all that well – we talked a few times and/or communicated via email a couple times a year, but when we did there was something different about him. John seemed to me to be a New Yorker to a tee; he was funny, smart, profane and charismatic. I liked him immediately. Even in his illness he had a vitality I found totally engaging. He was someone I wanted to know better.
Before the age of 12 John Falk lived within the bosom of an extended, close Irish family. He was happy and popular – and totally unprepared for the depression – the “tornado” that carried him and deposited him in another world one night. John fought that depression – despite the fact that depression ran in his family, he fought the idea he even had depression – and made it through school and into college.
“It was as if some demon stole into my room that night and chained me to an iron ball of metaphysical doubt. Overnight a wall had sprung up between my world and the carefree one it seemed everyone else lived in.” From No Zoloft, No Peace in Esquire
“It’s hard to describe what complete hopelessness feels like because ultimately it’s a perfect void, a state of nothing…Reason doesn’t apply, logic is useless, and faith is something for fools…For whatever reason, I couldn’t lick a nanosecond of pleasure from living, and now even the pain was gone…” From Hello to All That: Zoloft, War and Peace
Despite his less than stellar high school grades, John talked his way into getting admitted into the University of Vermont. After a horrible start at college, he pulled himself together, made the Dean’s list three times, and scored internships with a couple of Senators. Even in the throes of depression, he was smart, popular and funny.
He was also stubborn and willful. It took him almost ten years to see a psychiatrist – who immediately diagnosed him with a classic case of unipolar depression. After Prozac didn’t work, the Landmark Forum (suggested by his psychiatrist) worked for about a year, but then John was back in a near suicidal depression.
John combatted that detachment associated with his depression in many different ways – by taking risks (stealing, breaking into buildings, stowing away on a cruise liner, getting into fights), exercise or plunging into his school work. He graduated from college a popular, well-liked mess searching for release, for the way out – for the miracle that would rouse him from the isolation, the “meat-locker-cold existence” he was encased in.
Plunging into a different country didn’t work. He knew from the moment he stepped off the plane that Germany was not the answer. He fought the depression during Oktoberfest by getting drunk and cruising the crowd looking for fights. The Turks were his favorite target:
“When I wanted that special rush, I would saunter over to the roasted chicken booth, openly start gnawing on a leg without paying, and wait while some pissed-off Bavarian summoned the Turkish security guards.”
The fight that usually ensued – 7 Turks to one John – was, as John put it, “not exactly a recognized form of therapy, but at least” it took his mind off his troubles.
Trying to find something that would snap him out of it, he enrolled in graduate school, where after a couple of miserable semesters, Zoloft appeared and his life changed. John was no longer on the outside looking in.
Eager to get on, he wasted no time at all. Three months later, without qualification, experience or contacts, he was a war correspondent in the middle of the hottest war on the planet – the genocidal conflict we now call the Bosnian war.
Getting to the war was a battle in itself which demonstrated the kind of commitment John could order up. After 25 local news outlets, all the big regional newspapers and all but one of the radio stations passed on sending a young kid with no experience into the kill-zone known as Kosovo, John improvised. Telling the last radio station on his list that he was already accredited, and simply needed a letter so that he could do radio work as well, John got the letter he needed.
When his school psychiatrist refused to give him a year’s supply of Zoloft, John improvised again, seeking out a friend married to a psychiatrist who, succumbing to John’s charms, gave him a year’s supply of samples. At the age of 24, John was a self-made war correspondent, tailing a notorious and feared anti-sniper (a sniper who hunts snipers) in the depths of the Bosnian war. He had no idea what he was doing but that was fine, in fact that was probably part of the game – John loved the improvisation. In Bosnia he finally met his own kind – fellow journalists – restless spirits who’d left a life of comfort to thrust themselves into an edgier lifestyle.
In the beginning, John was so inept that he was taken for a spy pretending to be a journalist. He was saved when he accidentally set the crotch of his pants on fire during what turned out to be his moment of truth: unbeknownst to him he was being interviewed to determine if he should be killed for spying. (They figured no spy would ever set his own pants on fire.)
The deeper story, though, was how John ended up becoming part of his prospective killer’s family; his “own son”, the patriarch said. He picked up one mentor, then another and then, in one of the scoops of the war – got invited to tag along with an anti-sniper so feared that he was called the “ghost” by the other side. Vlado or Utashe as he was known, had, without any special training, killed dozens of Serbian snipers over the years and managed to survive. Quiet and intense, Vlado the sniper ended up being one of John’s good friends.
“very lean and angular, weather-worn…he looked to me like an old gunfighter out of central casting, the kind of wiry bad-ass who would push through the swinging doors into a saloon and the whole place would go quiet…He was more distant seeming than anyone I had ever met before…He looked at me as if I was nothing.”
Living on the furthest edge of one of the scariest places in the world was exactly where John wanted to be:
“It was up with the snipers in their perches that I was certain I would find the greatest drama, the craziest shit, the razor’s edge of the war…Part of me, I suppose, was also attracted to the intensity of it…I had come all this way…I saw no reason I shouldn’t take that final step into the darkest part of the war…” From “Hello to All That”
But here’s the thing: by the time John was done with Vlado and vice versa, each had opened up to the other. Vlado wasn’t a cartoon character, he was a passionate man doing a dirty job trying to protect his loving family. At one point Vlado told John that after taking down the most dangerous sniper of all, he’d learned he had been Vlado’s former best friend.
In the most amazing story of the book, though, John improvised, pulled strings, enrolled helpers, and through his amazing mother’s assistance, somehow managed the impossible – getting his Bosnian “father’s” son, daughter and a friend out of the war zone and into the U.S. where they still live today.
John came back from Bosnia a new man. He enrolled and even dug law school, which he called, “a three-year sleepaway camp for twenty-somethings”, passed the bar exam, did law for a while and then got back into his true love – writing. Rather quickly, the accolades piled up. John won a Peabody award, two of his stories were made into films, and he sold the rights to a movie for his memoir.
I’ve read his 2005 memoir – “Hello to All That: A Memoir of Zoloft, War and Peace” twice, the second time last week in two days. It’s a powerful book.
At the end of that 2005 memoir, John surveys a party that’s been thrown for him. It’s a wonderful and terribly poignant setting given what was to follow. John ruminated over the fact that he’d escaped the demon of depression (by now it’s just a distant memory) and what a change that had made. The venue was packed, his friends had traveled from all over – some from outside of the country – to be there. He was successful and happy, and his future was bright.
Not long afterwards John met and married his soul-mate, a similarly adventurous Mara (he told her she “was like him in a hot-chick suit”). Both he and Mara knew immediately that this was it and in true John and Mara fashion they took their relationship on the road. They tested it with three adventures: John had to endure Mara’s Ashram in India, Mara somehow had to stomach John’s mixed martial arts match in Brazil, and then they went on a ski trip in a war zone. Their trials passed, they married.
Not long afterwards, John’s appendix burst on a 13-hour flight from India to New York. Dangerously septic by the time the plane landed, John underwent surgery and was put under massive amounts of antibiotics. Recovery was slow and then, while Mara was chasing tornados for a TV channel, John got the flu – the flu that so many people with chronic fatigue syndrome (ME/CFS) are familiar with – that he would never recover from. He saw ten specialists before he was diagnosed with ME/CFS.
Like many people in the early stages of ME/CFS, the adventure journalist spent most of his day sleeping. Disoriented, the former globe-trotter had trouble getting around New York. When he got where he was going he invariably forgot where he parked his car. Finally, he broke the news to his editor – he couldn’t write anymore; in fact, the Peabody award-winning journalist often couldn’t even read anymore.
John was back in the soup with another health problem, but this time it was different. Depression had a name, specialists, and gobs of federal research funding. ME/CFS hardly had a name to itself (it goes by different names in different countries), got almost no funding and the self-made experts were few and far between. Plus it was saddled with this crappy name. The writer in John must have appreciated the bitter irony of being laid flat by a disease that went by the namby-pamby name of chronic fatigue syndrome (ME/CFS).
ME/CFS turned out to be a different gig entirely. As bad as depression was, John managed to get good grades, pass for normal in college, go for ten-mile runs, stowaway on a cruise-liner, fly to Germany, muck it with the Turks, etc., while depressed. Yes, he was miserable, but he was mostly functional.
With ME/CFS, he was miserable and non-functional. Like just about everyone with this puzzling disease, ME/CFS knocked charismatic, fearless John Falk down in every way possible – physically, mentally and in the end probably emotionally.
He had one year of success on Dr. Teitelbaum’s SHINE protocol and then relapsed again, getting much sicker. He spent the last seven years of his life in his basement. With his nervous system in shambles, John had to be protected from stimuli, could read only intermittently, and could rarely play with his kids. It was an astonishing fall for the adventure seeker who’d dared to go where few others would, and who found sustenance by plunging himself into the dark and untrammeled spots of the world.
Neither John nor Mara gave up easily. They spent hundreds of thousands of dollars trying to get John better. Diets, dozens of supplements, many different drugs, ME/CFS specialists, infrared saunas, craniosacral therapy, massage, reflexology, acupuncture, meditation, etc. – John left no stone unturned in his effort to get well.
The last six months of John’s life were misery. Stuck in bed, he developed sores all over his body. Xyrem could help him sleep but at the cost of his heart racing (150 beats/minute) even when lying down. The only real relief he got – the only time his brain would temporarily function – was after dunking himself in ice-drenched bathwater. (His Omega-wave indicated his parasympathetic nervous system functioning would shoot up – for a short time.) Too sick to leave the house much, John’s ME/CFS doctor cut him off because of too many missed appointments.
Emotionally, John changed also; his resilience shot, John’s formerly cutting but funny remarks became more and more simply cutting, and he taxed those around him with angry outbursts at times. His refusal to see a therapist on the grounds that he had ME/CFS, not a mental illness, was understandable but probably short-sighted. The years living in the basement, the poor sleep, and his increasingly fragile physical condition would have taxed anyone beyond endurance.
At some point, apparently feeling he had nothing to lose or perhaps nowhere else to go, his situation increasingly fragile, John upped his Klonopin dosage dramatically. The results – hallucinations and suicidal thoughts and a complete collapse – were devastating. John was taken to a temporary mental ward where the doctors were astonished at the number of drugs he was taking (8 Klonopin a night, Xyrem, Famvir, antibiotics, anti-fungals, HCG injections, thyroid, anti-depressants, and many supplements.)
The doctors at the unit agreed he had ME/CFS but asserted it wasn’t causing his problems because they felt “ME/CFS patients can still get around and work”. One doctor even suggested that John’s ceaseless efforts at getting well indicated he had a psychiatric illness – something John, not surprisingly, fiercely rejected. John’s hallucinations stopped when he was off the Klonopin. Weak and disoriented, he was, unfortunately, transferred out of the hospital before a room could be found at a care center.
About three weeks later John Falk killed himself, leaving behind his wife, Mara, and two daughters and so many questions. Everyone John knew, myself included, has looked back with anguish at what happened, wondering what we could have done to prevent it. If we’d known what was to take place, we would have moved mountains to prevent it, but the bitter truth is that we simply didn’t know.
The real culprit in John’s death is a medical system that largely ignored his plight and the plight of 1-2 million other Americans with his illness. John was correct when he stated at the end of “Hello to All That” that his life was saved by the creation of Zoloft, but that statement misses an important point. John’s life was saved because our medical system took depression seriously enough to produce an effective treatment which restored a chemical imbalance in John’s brain. (John’s recovery was so startling that he became known as “patient X” as an example of how effective antidepressants can be without therapy).
That’s not true for chronic fatigue syndrome. There are no drugs in the pipeline; no drug trials underway in the U.S. ME/CFS funding – always at the bottom of the barrel at the National Institutes of Health – has improved recently, but is still nowhere sufficient to understand this disease. There are no validated doctor training courses, and the illness is rarely and then only briefly studied in medical school. In short, the infrastructure which resulted in Zoloft is simply missing.
Despite the disease’s huge costs to families and to our nation (estimated at $12-20 billion/year), our medical system mostly leaves people like John on their own struggling for answers, with a bewildering variety of untested and usually ineffective treatments, and ultimately little hope.
Stories like John’s of lives turned upside down and families shredded, are, unfortunately, all too familiar. (This is the third memorial I’ve written.) It seems all the more tragic in John’s case because of his huge passion for life, and the wife and two small children he leaves behind.
The world needs more healthy John Falks. His family and we should have had a healthy John Falk to know, to joke and spar with, and to love for decades. The fact that we won’t have that is tragic. The fact that this bright, passionate man had to endure so many trials and tribulations is simply too painful to contemplate. Hopefully John’s death will spur others to action.
- John Stories – Being the colorful guy John was, he left many stories behind. Friends of John are collecting some of those stories. If you’d like to contribute your John story, please e-mail me at firstname.lastname@example.org.
- Mara has requested that in lieu of flowers donations be sent to Health Rising (see donation button on the right.) A service to celebrate John’s life is being held on Saturday, September 9, 2017 from 2:30 PM to 5:30 PM at John’s uncle’s bar and restaurant, Leo’s Midway, in Garden City. NY. (leosmidwaygardencity.com (516) 742-0574).
- Unfortunately, much of John’s work is not available online anymore including his hilarious “Love Tests”. Read No Zoloft No Peace, Chronic Fatigue Syndrome and Psychotherapy, An Interview with John Falk.
- Find out more about chronic fatigue syndrome and how to support it on Health Rising.
Such a moving memorial, Cort. I didn’t know John, but I sure got a feel for him through your writing. I’m sorry he had to go; and there’s only so much pain any person can be expected to bear. Thank you for letting us know about his amazing life and incredible despair. This illness is truly dreadful. Your points about the difference between ME/CFS and depression are very well made. I hope lots of doctors read them.
Well said, Sarah, and I ,too, feel such a sadness that CFS is still creating havoc and so much pain in every way for so many people.
Thank you ,Cort, for giving us a glimpse into the life of this amazing man.
Having John die was truly stunning to me. Even though we never talked that much it really hurt.
I think the long illness and then that mixed bag of drugs – particularly the klonopin – just took its toll. He was such a vital individual; the big lesson for me is that this disease can take down ANYBODY.
It’s a crying shame that someone like John couldn’t get the basic help he needed – not to necessarily to be well – but just so he wouldn’t have to live in such miserable circumstances! He tried so damn hard to get better.
Cort, I am sorry for your loss and send my heartfelt condolences to you, John’s family and friends. This disease can bring down ANYBODY.
A couple of years ago my husband and I watched an award-winning documentary about a Suicide Hotline for Veterans. At the end of the documentary they shared a suicide hotline number for anyone to call. I called and asked if they would know what someone was talking about if he/she called and said they had ME or ME/CFS. The person who answered said no.
This area is sensitive within our ME/CFS community, but I hope that one day we can talk openly about it. It was good news to hear the August 12th Symposium presenter share the results of a study where ME/CFS patients weren’t any more depressed than healthy controls. If others haven’t seen it, they won’t know what I’m referring to, but I imagine you will.
May John’s memory be for a blessing. RIP John Falk
Absolutely heartbreaking to read, tears are running down my face.
Thank you Cort for helping me to feel like I knew this amazing man, I feel privileged to have read every wor. I felt your frustration,your hurt,your loss and your pain, straight from your heart.
My heartfelt condolences go to you and his family.
I have CFS for the past 22 year’s and STILL, to this day, people tell me “it’s all in your head” and that I’m “making it up for attention”!!! ?????
From my heart to your’s ……. THANK YOU.
Just a tragic end to his life. So sorry for his family and friends. Reading the list of drugs he was on at the end, I am not surprised that he spiraled out of control ultimately. Long term, the goal must be to get off or reduce the list of medications, not add more. They are toxic.
I feel such sadness…for his despair, his seeking answers for which there are none …as I have had myalgic encephalomyelitis for probably 35 years…
Klonopin does make life bearable but a fine line for those that take it due to dependence and side effects on it or tapering off it..with side effects.
Pain meds the same ..for me they worked at first just taking 3 a week…as my neuro and internist warned me that later that dose would not give the same relief
and I noticed my pain was worse even taking the pills after taking 3 per week for years.
So I knew for me I was not going to take them daily and more and more and then have increased pain over time..
I read recently that some develop a increased pain sensitivity from the way the pain med works on the brain and they actually have more pain
and have to increase the dose of the pain med to get the same effect.
I do not take them anymore..from my own experience.
I know how this gentleman felt with that cocktail of meds he was prescribed…and how they can affect the brain and body..adversely…after a period of time.
That goes for any med that they prescribe in the anti deppresant group or did for me too..I had adverse reactions to those medications..
I am so sorry for his wife and children and what they have been through and grieving now.
This myalgic encephalomyelitis /cfs is day to day survival…
It gets lonely …as no one wants to understand …or listen or learn about it..
even an internist that you might send 2 pages to read once a year ..will not respond…
My faith in Jesus Christ as my savior sustains me.
I didn’t see anything showing that he had ME/CFS. Its tragic that he had such unrelenting depression, for seemingly most of his life — but where does ME/CFS come into the picture?
Johns depression basically ended with Zoloft. His ME/CFS began when after his appendix burst on the flight to New York and then with the flu he caught not longer after that. He had ME/CFS for ten years.
Beautifully written memorial for your amazing friend.:(
Oh God. Seven years in a basement!
I feel terrible for his family and for him.
Cort………….thank you for sharing some of John’s story. I can’t even………..
Thank you for sharing this Cort. We can easily forget how much strength it takes to keep keepin on with this disease. I know I share the same stubbornness in that I choose to handle the emotional effects of the daily struggle on my own, without professional help. Or maybe it’s actually fear, fear that someone will tell ME that my weakness and pain is all in my head.
I think you’ve hit something on the head: it’s the possibility of encountering someone saying that it’s all in our head that keeps many of us from getting help at times. That’s sooo stressful….
SS for the loss of your friend.
My nightmare started May 24, 2000 and probably 10 years before that, before I was totally disabled after working two jobs for decades
Still very frustrated
May someone, somewhere, find something
My doctor said one of the most ignorant things I ever heard from a doc. “No one ever died from pain.”
Sounds like someone not very acquainted with pain….
I’m afraid that a lot of us with ME or FM teeter on that edge after decades of pain. RIP, John.
This is so sad, made sadder by the distinct possibility that intolerances to the drugs he was taking may very well of made him sicker than he would have been without them. Xyrem raising his HR to 150 bpm would have been counter productive when Pro. Van Ness et al have found it imperative to keep your HR under 100-110 bpm. Why aren’t we demanding attention being focused on the abnormal physiological responses to drugs/exertion/food/chemicals/exercise….all of which are easy to measure?? Instead we get study after study using subjective surveys designed for different diseases – typically making conclusions that are at odds with our lived experience such as activity doesn’t cause pain and pacing doesn’t reduce pain…..I wonder if all the endless conversations for and against GET/CBT and the name of the disease will ever be directed at heart rate pacing, physiological signs of disability, self management and the need for REST!!!!
The great and stunning question is what role those drug combinations played in John’s death. I imagine they played a huge role.
A stunning loss. A far too common theme. Sending everyone who knew him love…
Thank you for this write up Cort. So very sad. I knew someone in their 20’s who after a couple years of severe ME/CFS chose suicide over being sent to the hospital. He had tried many of the recommended treatments and saw some of the top ME/CFS doctors with little improvement.
While I understand the sensory overload I cannot help but wonder if living in the basement contributed to John’s illness over time. Mold problems are very common in basements and are sometimes a significant factor in some patient’s illnesses.
Cort, while I appreciate the desire for a drug treatment I wish the government would also research non-drug treatments. While they may not provide a cure (any more than a drug does), the relief many patients get from changes in diet (gluten) or environment (avoidance of mold or environmental chemicals and toxins) is not insignificant and I would guess is as good as many drugs without the risk of side effects.
I agree that mold was probably a major issue. The onset after a burst appendix suggests he had a problem with biotoxins and mold, and this is not uncommon.
James’ points re: mold/mycotoxin and general environmental poisoning cannot be overemphasized. Read Jane Lim’s book “The Most Deadly” or Dr. Mary Ackerly’s article “Brain on Fire.” From my long experience NEID/CFS, environmental toxins are essential to the etiology of this multifaceted condition. Besides having too many vaccines near birth time, I have discovered where the town on Long Island, Glen Cove, NY, where I grew up, was a hidden hotbed of Wah Chang/Li Family corporation radioactive and heavy metal and petroleum-based poison and pesticide dumping from WWII-1980s. This is an EPA Superfund site that is still poisoned and unmediated after more than thirty years! Northern LI is known for its cancer clusters. The once-beautiful town is now sick with worry about the longterm effects of what they have been drinking in their well and city water all these years. Always follow the money/power elite trail to witness how the injustices and lies drag on for decades without resolution. And about over a hundred holistic doctors have been suicided over the last two years for exposing the Pharma and Military Industrial rackets.
All blessings and comfort for John’s family, friends and animal companions. John lived a very rich life although he may not have been able to perceive or feel it enough to comfort himself. It was not his fault; he embraced, and imo probably still embraces, life.
Thank you for writing and sharing this poignant memorial. I can only imagine his torment through those last years. So sad to know that he suffered so intolerably. RIP John, and Peace to his family.
So many have died and it is only through these stories that we can document their struggles and torment. Thank you Cora. After 30 years of this, I have run out of tears for the dead. I have not run out of anger at the planned ignorance, but anger takes energy and I do not have much left these days. The living do not rest in peace with thousands of voices ringing for help.
Cort, thank you for sharing the story of John, his life and those left behind. Thoughts and prayers are with his family/friends. NO ONE who has not had or witnessed the devastation of ME/CFIDS/FIBRO and so many of the other “invisible” illnesses knows the toll it can take on the body/mind/spirit of the individual, person/s involved, family and/or friends.The taking of ones’ own life can indeed seem like an option, when all else fails. I understand.
Yes, indeed, unfortunately during those times it can seem like the only way to relieve one’s suffering.
So sad to hear of John’s suffering. It seems likely that brain sensitivity to mold and enteroviruses may have played a part in his earlier depression as well in his developing ME/CFS many years later after a viral infection. Especially since Zoloft was so effective for him. Note the following study: http://www.scienceagogo.com/news/20120628185057data_trunc_sys_old.shtml
I remember reading a few years ago that when researchers went through approved drugs looking for effectiveness against enterovirus, that Prozac was the most effective, and I wondered how much depression was caused by sensitivity to persistent enterovirus in the brain. John may have had difficulty clearing enterovirus from his body and especially brain. I believe such a difficulty is inherited in my family.
Thank you for this beautiful writing about your friend and fellow sufferer. I didn’t know John, but I feel you did him justice with your heartfelt words. I hope you will send it to the New York times and anywhere else John worked in the past, perhaps one of them will be moved to run it. Thank you for all of your work on ‘our’ behalf every day. Condolences to all who personally grieve this man.
Yes, good idea. If any websites want to publish this piece they have permission to do that in two days.
My deepest commitment and feelings for his family and four you cort. (sorry for my bad english-hope I do not write something false). How many of us have allready taken their lives because of this horrible desease. It is all so said. Although not very depressed I also ask myself, why do I live anymore because off the severity in my case and the long duration and total isolation. And what are my chanches to get a little bit better when they wil find something. But that is by the way. My depest thoughts to his family and you cort and may he rest in piece, far away from ME/CFS
There but for the “Grace of God”, comes to mind! I am sure any one who has this condition and it’s accompanying chronic problems, will relate to his struggles in some way. RIP to another warrior:(
After reading of all the drugs he was given I am wondering if living in Australia I have been lucky never having seen a specialist who ordered so many exotic treatments for ME. Treatment for Candida, the result of immune system dysfunction, yes, for 7 years, but told ‘it is not fatal so don’t worry about it’. Multiple disabling symptoms caused by chemicals which became normal when chemicals were strictly avoided. Advice given, ‘you need to see a psychiatrist’. The stories continue for many of us. The point being what made us ill? Why extreme sensitivity & system dysfunction? How many drugs perform by BLOCKING some needed pathway in our body. If pesticides and fungicides etc kill living bodies however small, then why would it not affect similar pathways in us too? I react badly to most of the drugs doctors have offered. I have improved to maybe 80% by avoiding chemicals at home, some foods and all prescribed drugs. Environmental pollution? Avoidence is difficult, but may be a significant answer for others too.
Cort, this was an especially moving piece. I am sorry that John suffered so much. Sorry for the loss his family feels and sorry for his friends, such as yourself, for having to see what sounds like a very interesting and talented friend give way to hopelessness due to ME/CFS.
John’s death really brought to the surface for me the huge loss this disease causes – both for the people who have it and their families. When I think what I would be doing right now or would have done….
The question is are things going to get better in the next few years before more lives are lost. I can totally understand the desire to sleep and not wake up. What have we to do to be heard? Cort, can you let Francis Collins know about this, it is such an injustice
I will try…I think we really have to support groups like The Solve ME/CFS Initiative and The MEAction Network and OMF – groups that doing lobbying. Getting this story out helps too. You never know what’s going to make a difference. Part of advocacy is just getting the word out, making connections, bringing people in – and ultimately finding the people who will make the difference. The Open Medicine Foundation is now graced by the work of an researcher simply because he read a piece in Stanford’s newspaper.
Thanks Cort for your caring and moving memorial to John. I was not familiar with his story but your insightful writing gave us a real feel for the man. The image of John disorientated unable to read & write & at the mercy of an overstimulated nervous system is a experience we can all relate to. The lack of empathy & understanding from the medical profession etc that patients experience is beyond belief & is one of the major factors leading to their despair. As to the assertion that Anti depressants cure a chemical imbalance this has been disputed and there is no proof of a chemical imbalance in Depression rather psychiatric drugs are psychoactive agents in the same way as alcohol, this is how they exert their influence on anyone who takes them irrespective of the presence of a psychiatric disorder.
Cort, great job on the writing!
I too was a jornalism when I got sick. I think it could be we have proportionally more of us in this disease. I wonder if the high -stress, adrenaline-filoed life makes us more vulnerable or if the thing that makes us like that lifestyle, what we would call a type-A, is actually a slight dysfunction in the sympathetic/parasympathetic balance and it is that dysfunction that leads to the disease, given certain other circumstances present.
When will ME/CFS be a REAL disease in the eyes of the modern medical community? And who is tracking the numbers of suicides attributed to ME/CFS? Cort, you said this is your 3rd memorial and I know of 2 CFS patients who died by suicide. We are losing too many people.
The doctors at the unit agreed he had ME/CFS but asserted it wasn’t causing his problems because they felt “ME/CFS patients can still get around and work”.
Shame on those doctors! You have to wonder if these comments and dismissive attitudes are exactly what drove John to the edge. ME/CFS patients are put in the position of not only enduring a devastating disease, but simultaneously having to prove their condition to disbelieving doctors. As patients, we know that consulting a doctor is not necessarily the smart thing to do; but what are the alternatives? What other disease is met with such contempt?
Rest in Peace, John. We miss you already.
What an awful position to be in – having to prove our condition to the doctors who are supposed to help us while terribly sick. I don’t know if people with any other disease are placed in such a position. It’s terribly stressful – and its no wonder that many people end up concluding that its not worth it…..
It is not just the medical profession! I recently moved into a new area…everybody was friendly whilst finding out why i had moved there (it is less busy and more rural)…then they all decided i looked far too well for the mobility badge i have and started to spread rumours that i was some sort of benefit cheat etc etc…i have been ostrasised and left feeling suicidal by these people. I want to go out and shout “swap your life for mine”!
The public perceptions and the medical stigma are causing more stress, more distress and a constant fight for us all.
Fab new doctor,but the locals are undoing his work daily!As posted previously, we are losing warriors every week:(((( x
Women with Endometriosis experience similar difficulties in obtaining diagnosis, accessing treatment & sickness benefits. Many women with Endo also suffer from ME/CFS/FMS symptoms so it can be doubly difficult for those affected.
Thank you, Cort. I think this is one of the most moving articles I have ever read. So many times I have seen this theme repeat in the lives of people affected with this strange illness. Many have wonderful gifts and have made important contributions to our Human family. Then, there is the “illness” from which we never recover – certainly a “curse,” by all Ancient and modern standards.
And perhaps this is why Western medicine is so ill- equipped to help us. The roots are ancient and unfamiliar to a modern world bound by the “scientific method,” and Big Pharma?
May the Spirit of this great man guide us to a better understanding of this great enigma.
Yes, indeed. John had a great spirit, a restless, exciting spirit…I wish I had known him better! I wish I could have helped out in the end!
Thank you for sharing this incredible story.
I am very sorry for your loss Cort of a good friend.
It’s a shame what Me/CFS has done to so many people; ruined lives, families, careers but especially our health. I was diagnosed in 1995 by Anthony Komaroff MD, but actually became very ill with me/CFS around 1974 after a bad bout of the flu. Lost my promising teaching career and barely able to cope for years. Saw many, many doctors, none of whom believed in me/CFS and recommended psychologists for help. I am now almost 72 and not home bound, but don’t get out much due to this nasty disease. If I do go out, even if for a few hours, the next several days I am so sick with aching, swollen glands, dizziness, muscle aches and so much more, very neurological for me, and pretty much bedbound. A huge concern of mine is that…shh, we’re not allowed to talk about me/CFS bc it’s not a real disease! That is a huge obstacle that needs to change! Another thing is aging with me/cfs; where is the research on that? I know this nasty disease will greatly shorten my life, and no treatment for me, but I hope and pray that there will be treatments for it at some point and, most of all people will be able to say “I have me/cfs” and be able to talk about it, w/o people looking on in disbelief! Thanks for listening and all you have done Cort for the me/cvs community while struggling with the disease yourself.
Tragic end to a man’s life. Condolences to his wife & children.
What strikes me is that he did get treatment & in fact was using many of the remedies/drugs that have helped others in this community, but clearly no one could tailor it to his needs.
Also he was ethnically Irish, & it seems to me the Irish are way way way over represented in the CFS & Autism patient groups. Depression too.
May he Rest In Peace
My heart goes out to John Falk’s loved ones. CFS/ME will take down the (formerly) healthiest person in the worst way. My heart goes out to his family and friends. One of my brothers has been sick with this awful virus that just will not give up on infecting & sickening formerly healthy, vital persons. Someday there will be a cure for CFS/ME. I wish John’s family peace, knowing that, in spirit, he is now vital and alive in an invisible, loving form.
Thanks Cort. This hits close to home in so many ways. Thanks for always trying to help us make the connections between the science, our symptoms and the reality of our lives.
Thank you Cort for this poignant, moving, and hopefully educational, tribute to John Falk. The beats of John’s story sum up the horror and frustration of living with ME/CFS. I recognize many of them in my own life. In particular, the dramatic and glamorous professional work around the globe… until that fateful day I woke up and was no longer the same person. 15 years later, I’m still working to improve my health. And to finding a fulfilling way back to a life that matters.
A beautifully written tribute to a man I would have liked to meet. What a loss!
It will be 28 years for me November 8 of this year. From research physicist at Princeton to nothing to, eventually (and very slowly) novelist. I guess I’ve been lucky to NOT run into ‘specialists’ and quietly cope with not leaving the house much, and to have a pain specialist who finally discovered something that would work. When I read of people who are so much worse off, it sends chills, because that could come on at any time.
I, too, wanted to slap doctors who told John that he should be able to work. I would have given almost anything to work. I still dream about it. My ability to write is in tiny daily doses – it took fifteen years to finish the first novel.
I didn’t spend ‘thousands of dollars’ on treatments, and when I read how they didn’t help John, I am glad I didn’t put myself and my family through that agony and cost – while not knowing anything about how similar our cases might have been. I’ve often wondered if it would have helped ME.
We shouldn’t have to be the ones trying to find answers to that question.
Thank you for your writing.
Thanks…That’s a big question for me. If I had the money would it have helped or might it have possibly even hurt? I assume that for most people it probably helps but then there’s John – trying to get better and taking all these drugs. Who knows what they combined to create?
I am so sorry this awful disease took down your friend. Your story about him — his victories and his struggles — touched me deeply. Beautifully written, Cort, and yet a heartbreaking end to such a dynamic man, your friend, John. As I struggle, I will remember this story, and fight the good fight. It is so easy to say, “never give up,” until you know what CFS/ME and FM AND depression can do to a sensitive soul. May God bless his and keep him. My deepest sympathy, my enduring support…
Great piece Cort.
Such a sad unnecessary loss. Had tears in my eyes reading it and can relate to the hell John went through as I’m sure most sufferers can.
Please excuse my ignorance in what I’m about to ask, and it may be that I missed the explanation through my difficulty in processing information I’ve read. I’ve had ME for over 11 years now and totally understand where it can take you. I posted something on this on my Facebook page explaining that this was such a sad loss due to ME. The response I got was that it was most likely due to the depression rather than the ME. Cort, can you explain to me as to whether the situation was that it was his depressive state that led to his sad death, or the ME or discovery that he had ME ? I just want to be able to explain to people how devastating this illness can be. Thanks.
I’m a bit turned off by this passing of John Falks being portrayed as more tragic than most ME sufferers. Anyone could reach out to the millions of ME patients, and very easily find that we are some extraordinary ppl. Before ME, we had amazing lives, we have brilliant minds & talents, we are adventurous, athletes, doctors, nurses, lawyers, professors, parents, or even children, etc. But you don’t see us! We’re in our beds, in our basements, we’re home bound. If we’re lucky, someone takes care of us. Many are needy or neglected.
I guess, to someone who is just learning that ME patients exist, Falker may seem like he’s different or special, but he’s not. He’s a statistic. He represents the fact that ME steals our lives. We’re often fighting depression, as well. We know that suicide happens. It’s one of the many known facts your Dr leaves out when you get your diagnosis.
When you’re too close you may not see it. If you get some perspective perhaps you can see it: ME doesn’t discriminate.
Thank you for honoring John. He was such a funny heartfelt compassionate person and the thought of him suffering with minimal care from the medical community is heartbreaking. His wife and daughters are in my thoughts and prayers constantly. I got to know John well when he managed to beat 10+ years of really terrible depression. Then he battled ME for 10 years. So much of his life was spent experiencing crippling debilitating illness, yet during Windows of health he really did accomplish so much — masters in intl affairs from uva, war corro, saving people from war torn ctry, writing book about depression, making movie about the sniper, law degree from uva, marrying soul mate, etc… RB, that is not meant to minimize anyone else suffering with ME or any other illness for that matter. It’s just that ME took him to the end of his rope and people that knew him, even a little, wish to honor him and wish that there was more they could have done to give him hope to hold on for the cure he so desperately wanted to find. Telling johns story is one way of raising awareness. Thx!
Thanks Meg for putting that so well.
I was looking for information on the movie and I saw this article. I am very sorry for the pain and death of John Falk. Rest in Peace.
I’m sad to learn of John Falk’s passing. I referenced “Hello to All That” to someone only a couple of weeks ago, just noticed it on my bookshelf and decided to quickly do a search to find out what he’s written lately. That’s what brought me to your post. That book was so well-written.
Yes, indeed it was. Such a shame John couldn’t find help.
I’m so sorry to learn of John’s passing and all of the struggles and pain that he endured. We worked together approximately 25 years ago during his brief stint as a lawyer. He was great — everyone loved working with him! One of the highlights I always remember was attending the premiere (and after party!) for his movie “Shot Through the Heart” about the snipers in Sarajevo. Unfortunately, we lost touch after he left the firm. So, after way too many years, I finally decided (today) to see what he’s up to in the hope that we could make plans to meet one day for a long overdue drink. Rest in Peace, my friend.
Hearing this is such a heart wrenching loss and just as a person who discovered his book at the right time. I hope he knew how many lives he changed with his life and his writing.
Thank you for writing this tribute, though the news of John’s passing is sad to learn. I am writing this more than 4 years later, and I only stumbled across this because I once read “Hello to All That” and liked it very much. Randomly I thought about the book today and thought to look up what the author might be doing now. I am sorry to learn of John’s health problems in his later life. Very sad. But he sounds like an amazing person, and I can attest to his book being a great chronicle from inside depression & anti-depressant use. May he rest in peace.
I’m glad I was able to learn more about my high school classmate that I never knew very well. So many parallels in our lives. I also suffered from soul crushing depression and sought dopamine hits through dangerous thrill seeking behavior. I was lucky to be prescribed an anti depressant in my 30’s which helped enormously. I also had a perforated intestine which left me septic and almost killed me a few years ago. I worry about CFS because I have an autoimmune disease and I think CFS can be triggered in the same way. I just ordered his book “Hello to All That.”
Amazing! Good luck with everything, Mary 🙂