By all accounts, Whitney Dafoe was leading a vibrant life before the mysterious illness overtook him.
He had a promising career as a photographer; he volunteered to build villages in Jamaica and a monastery in India; he lived with a shaman in the Ecuador rain forest; and he won a coveted Microsoft Pro Photo prize in 2005 for his sensitive photo of light streaming through a forest.
But in between and during his adventures — and while he interned in 2009 as a photojournalist at the Palo Alto Weekly — Dafoe was sick, and getting sicker. He experienced crushing fatigue, dizziness and gastrointestinal problems, and the weight peeled off of his 6-foot-3-inch frame. At one point, he only weighed 115 pounds, said his mother, Janet Dafoe.
It would take years to put a name to the devastating illness robbing him of all vitality. Even then, the name fails to adequately describe what he is experiencing. Dafoe, now 31, has chronic fatigue syndrome, also known as myalgic encephalomyelitis (ME/CFS), a debilitating and complex disorder with a main characteristic of overwhelming fatigue that does not improve with rest or sleep and worsens with physical or mental activity.
But researchers and patients said the name, chronic fatigue, connotes mere laziness to some people, and it doesn’t take into account ailments affecting organs and body systems, such as digestive upsets, joint pain, impaired memory or concentration and insomnia, according to the U.S. Centers for Disease Control (CDC). Exertion and, sometimes, outside stimulation can cause “crashes” that can take days or weeks from which to recover.
Although one of its early monikers, “yuppie flu,” seems to indicate chronic fatigue is a recent phenomenon, it has been described since at least the 1800s, with some scholars stating that a disease with its symptoms dates to 1750. Florence Nightingale, the founder of modern nursing, was known to suffer from a debilitating fatigue syndrome that often left her bedridden — possibly chronic fatigue syndrome or fibromyalgia, according to the CDC.
An estimated 836,000 to 2.5 million Americans have chronic fatigue syndrome, according to the CDC. But DePaul University researcher Leonard A. Jason and a group of researchers found that many people who have the disease’s defining symptoms have not been diagnosed as such. They estimated that upward of 91 percent of people with the illness have not yet been diagnosed.
Chronic fatigue occurs most often in people ages 40-59 and is more common in lower-income than affluent individuals, Jason found.
There is little research on mortality from chronic fatigue syndrome. A handful of studies have found possible correlations between the disease and deaths from heart failure, cancer and suicide.
The disease is sometimes dismissed by medical professionals as psychologically based. Its sufferers on average seek help from about 20 medical professionals before they are diagnosed, according to Dr. Andreas Kogelnik, founder and director of the Open Medicine Institute in Mountain View, who has treated chronic fatigue patients for more than 10 years, including Whitney Dafoe.
But the medical profession is slowly coming around to accepting chronic fatigue as a bona fide disease. It took a giant leap forward in February with the publication of a 304-page report by the Institute of Medicine. That report, based on a review of more than 9,000 scholarly articles, set up diagnostic protocols and recommended increased funding. It also proposed a name change to systemic exertion intolerance disease (SEID), which conveys the disease’s most defining characteristic of unrelenting fatigue and illness that affects multiple body systems and organs. The term “chronic fatigue syndrome” should no longer be used, the report’s authors noted.
Dafoe’s disease has progressed to the point that he cannot talk, read or use the Internet. His joint pain became so severe some time ago that he could no longer walk and needed to use a wheel chair. Now he rarely gets out of bed. On a good day, he’ll show his gratitude by pointing to his heart, his mother said.
His parents have stuck a few brief messages he’s scrawled on notes to the door frame outside his room. The yellow squares of paper are the only way he can communicate these days.
“I don’t know what to say. I just feel pretty hopeless about all this. I never get a break from bad things,” he wrote on one note.
“It’s so hard not being able to take care of my stuff. The feeling of helplessness it gives me is so stressful,” another states.
Janet Dafoe keeps a small collection of paper hearts her son made when he had the energy, carefully and accurately torn from pieces of paper towel. She has pretty much given up her child psychology practice to care for him full time, and her kitchen has been transformed into a pharmacy. A table overflows with an arsenal of medications, medical supplies, vitamins, minerals, amino acids and food supplements, which she daily injects into his intravenous medicine line to supply him with nutrients. Her son has stopped being able to eat solid food, she said. Recently the family has tried to get a particular type of feeding tube inserted into Dafoe so that he can take food into his small intestine, but the gastroenterologist who would perform the surgery refused. Instead, he told Janet Dafoe that her son needed acute psychiatric care. It was just the latest in years of misunderstandings and rejections the family has faced, she said.
“Most hospitals don’t accommodate CFS patients. They can’t tolerate noise or human contact or anyone in the room,” she said.
Janet Dafoe doesn’t sleep much through the night because her son’s sleep schedule is often upside down, and she’s all but abandoned a social life.
“I went to Sundance every summer,” she said, referring to an intense, nine-day Native American ceremony, “but now I can’t go away overnight. It’s so impactful and sad.”
Whitney Dafoe’s family turned to Kogelnik about five years ago. fHe had probably been sick for one and a half years before they met, Kogelnik said.
“He had in some ways a very typical story. He was a young guy, successful, in-the-prime-of-his-life kind of person, and very positive but had all of a sudden been hit after a brief acute illness, and he hadn’t really recovered from it. And he continued to kind of not recover from it for months and months; and months became years, and he had no reason functionally to not be healthy,” Kogelnik said.
People who have chronic fatigue can develop psychological issues such as depression or anxiety, but those are not causes of the symptoms, Kogelnik said. It’s the way chronic fatigue clobbers a life that can be depressing.
Whitney Dafoe had gotten a scholarship to travel around the world as a photographer when he became very ill, Kogelnik said.
“So imagine just from a psychological perspective already how devastating it would be. You know you have this wonderful life opportunity in front of you, and all of a sudden have it taken away from you. You can’t walk down the street without becoming completely exhausted and having this post-exertional feeling where you just are drained,” he said.
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While Dafoe’s case is among the most severe, others with chronic fatigue syndrome are debilitated such that their productivity is limited to just a few hours each day.
Sunnyvale resident Stephen Shimshock, 28, began to experience the same fatigue in 2011. It took three and a half years for him to find a structure he could live within so that he could have an active life, he said.
Shimshock was just out of college in 2008 and was testing life’s waters with a few different jobs when he became a substitute teacher at Fremont High School in Sunnyvale. He hiked, swam, rode a bike and, in general, liked the outdoors.
“Two and a half years into working in Fremont, around Halloween I had a cold with a fever. I missed a few days and then got back to work,” he said. But about three weeks later, he felt increasingly more tired.
“Around Thanksgiving, I got to the point that I’d get to work and I’d have trouble following students’ sentences. The doctors call it brain fog,” he said.
Standard tests didn’t show anything bad. It was also difficult for Shimshock to measure the progression.
“I don’t know what prompts the fatigue — emotions, physical or mental. At the beginning I felt a lot of guilt and shame. I always was the type of person who thought I was faking it if I was sick. I didn’t think I was sick enough to take time off from work or school,” he said.
When fully rested, Shimshock said he feels pretty much like his old self. But when he pushes himself beyond his limits, things start to happen. His dexterity goes down; he has difficulty speaking and structuring thoughts; and he has trouble chewing.
“As I get more fatigued, I become more sensitive to lights and sounds,” he said.
Two years ago, he stopped driving.
“I may start the day OK, but I’m never sure I’d have the energy when I got to the place I was going to, or if I’d have the energy to return,” he said.
When his doctors couldn’t heal him, Shimshock began to seek ways to cope . He discovered that he has two or three hours in a day for activity without going overboard. He can walk two blocks, but if he pushes to go three or four, he will experience a “crash,” which is much like pulling an all-nighter and feeling the effects for days or weeks afterward, he said.
Trying to push through exhaustion the way other people do only compounds the problem, he said. It’s like having an envelope with a particular quantity of energy credits that, when depleted, take a long time to refill.
“A safe day is scheduling one hour of activity outside of the house or interacting with people,” he said.
He tries to spend the rest of his time doing passive activities, such as watching movies or reading, and recently he started doing some crafts. He engages in these activities for no more than 30 minutes to an hour a day.
Shimshock cannot work, so his parents help him maintain an independent life. He lives with roommates with whom he has light social contact during the day. But he has learned not to go into hectic places such as the grocery store, where there is too much stimulation and sensory input.
“It feels like every day is a recovery. It’s tricky. I still go to that place where I still feel like ‘normal Stephen’ sometimes. I have to hold myself back, and that’s frustrating,” he said. “I’m aware my environment is not only smaller but also fills slower.”
Shimshock said he has been fortunate to have a loving family and supportive, understanding friends. They have come to know when he can’t engage anymore in a conversation or can’t eat at a restaurant. But the hardest thing at times has been feeling left behind.
“Being aware of all my friends having to go out of their way to put me in their lives; knowing that even if they knew my situation fully, I couldn’t ask them to be as big a part of my life as I’d want because it would hold them back from living how they want — I think that was what held me back from facing this. I didn’t see how I could fit into anyone’s life in a positive way, sustainably,” he said.
Staying relevant is important to the mental health of people with chronic fatigue. Writing to family and friends keeps Shimshock connected. He knows having chronic fatigue syndrome can be devastating emotionally.
“The only other person I knew who had it a few months ago killed himself,” he said, visibly upset. “It can be easy to get lost inside yourself, to feel isolated. I’ve had friends who would reach out and that is stressful in itself.”
Shimshock has an easy, relaxed way and he often smiles. As much as anyone can, he’s come to terms with his illness.
“I have lived long enough to know that whatever path my life is going to take I only have so much say in it. I’m trying to put more emphasis on little steps of personal growth. My goal has been to live life with or without the fatigue,” he said.
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Patients with chronic fatigue frequently try multiple treatments to control their disease. Whitney Dafoe has taken antibiotics, anti-fungal and anti-parasite medications, vitamins, supplements, Chinese and Tibetan herbs. Both he and Shimshock have tried acupuncture. Shimshock is currently on six supplements.
Susan Kreutzer, another of Kogelnik’s patients, who has had the disease since 1991, had thyroid surgery and then began taking high dosage of synthetic thyroid. She felt energetic, she said, but her new endocrinologist was not comfortable continuing with such a high dosage. Lesser amounts don’t ease her symptoms.
While doctors and researchers don’t know the exact cause of chronic fatigue, in many cases, symptoms have likely been triggered by an infection or other event, such as immunization, anesthetics, physical trauma, exposure to environmental pollutants, and blood transfusions, according to the Institute of Medicine report.
Viruses are one well-documented commonality for at least one group of patients. The presence of antibodies against Epstein-Barr virus — which is associated with mononucleosis, Q fever, enteroviruses and other viruses — are often found in the blood of chronic fatigue patients, according to researchers (Read Unraveling the mystery of chronic fatigue syndrome).
Dafoe had mononucleosis; Shimshock also had a virus before developing chronic fatigue. Kreutzer, 58, had flu-like symptoms from the Epstein-Barr virus.
But there is some hope in the form of anti-viral medications, which can sometimes help patients significantly.
For Kreutzer, the improvement has been profound. Ten weeks to the day after she started anti-viral treatment, she felt significantly better. One day she had no energy to stand up and get her hands above her head, and then the medicine kicked in.
“You’ve just given me oxygen. It’s like I rise from the dead. Overnight, I’m like, ‘OK, who wants to go jogging?'” she said.
Shimshock and Dafoe also received anti-viral medication. While viral indicators in Shimshock’s blood have improved, his energy level and other symptoms haven’t, he said.
It did not help Dafoe’s symptoms, his parents said.
Despite the setbacks, Dafoe has a powerful ally. His father, Ronald W. Davis, is a renowned geneticist who was instrumental in the Human Genome Project and is director of the Stanford Genome Center. He has a serious emotional investment in getting to the root cause of chronic fatigue, he said.
As his son continues to drift further away, Davis is trying to ramp up research into the origins of chronic fatigue. He has formed the Chronic Fatigue Syndrome Research Center at Stanford and is the director of the Open Medicine Foundation science advisory board. The latter has formed a research consortium, the End ME/CFS Project, to study the disease’s origins and the commonalities between severely ill patients.
Some prominent Palo Altans are stepping forward to try to help Davis further his research. Yoriko Kishimoto, former mayor and director at Midpeninsula Regional Open Space, current Mayor Karen Holman, and former City Councilwoman and retired Judge LaDoris Cordell wrote a letter to rally attendees of an upcoming, July 16 event to raise $1 million of the $25 million Davis and his team need for research.
“This is a serious request on a serious topic — a call for help from our Palo Alto community but also a chance to break through a major medical research frontier,” the trio wrote.
Davis noted the dearth of funding and the difficulty in receiving sizable federal grants. Chronic fatigue syndrome receives just $5 million to $6 million annually from National Institutes of Health (NIH). Additional funds come from private donors.
Chronic fatigue has more sufferers than similar diseases, such as multiple sclerosis and immune-disorder diseases such as AIDS, researchers said. Yet multiple sclerosis research receives 100 times the funding of chronic fatigue; AIDS research receives a thousand times the funding, according to a March 14, 2014, NIH report.
Davis said that increased, dedicated funding is key to solving the mystery of chronic fatigue. The NIH has 27 institutes and centers researching everything from eyes to hearts and aging. Without its own dedicated NIH institute, funding must be pulled out of other institutes’ research budgets, and those institutes are unlikely to want to give up their dollars, he and other researchers said.
Meanwhile the costs, financial and emotional, mount for Whitney Dafoe’s family. His parents spend $50,000 a year for his care.
“People go bankrupt,” Janet Dafoe said.
For Ashley Davis, Whitney Dafoe’s sister, the loss of her brother in her daily life is profound.
“We were best friends. We talked on the phone every day. Now we can’t talk,” she said. He was always more of a powerful figure — he was confident. I was quiet and shy. … He was the one who pushed me. He shaped what I am today.”
Her brother’s illness got her into public health. She studied medical anthropology and has worked in public health environments around the world: in a hospital in Kenya and researching in Guatemala. And she raises funds for CFS.
Now Davis is getting married, but Dafoe barely knows her fiance. When he needs to be moved from his bed, Davis’ fiance gently carries him in his arms while she cradles her brother’s head in her hands.
As a little girl, she would often role play as a bride. Whitney Dafoe would pretend-play with her, coming up with ideas for the wedding. But it’s pretty much a given that he won’t be able to attend her real ceremony, she said.
“Now that I’m planning my own wedding, I’m trying to incorporate some of those things,” she said of their childhood pretend weddings.
Davis had to announce their engagement on one of the little yellow cards the family now uses to communicate with Dafoe. Her grief, she said, is never-ending.
“It’s hard to explain. Most people have experienced loss in the sense of a death and grieving, and you are able to grieve and move on, even if you still feel loss. (But with chronic fatigue) it’s not a normal grief. It just continues, and it’s been going on for years,” she said.
As the clock keeps ticking away, Dafoe’s health recedes further and further away, Janet Dafoe said.
“I go in there day after day and watch my son waste away,” she said. “It’s the worst kind of suffering for a mother to watch her kid suffering and being so miserable. I sit outside his hall and wait until he’s ready for me to come in. I look through his door and wait. I’ve spent hours in that hall waiting for him to be ready. Sometimes I sit there crying. If there’s something he needs or he can’t reach and I can’t figure out what it is, he’ll put it on a card. Sometimes he’ll write, ‘Please don’t stop helping me.'”
AT A GLANCE
Chronic fatigue syndrome facts
Number of U.S. CFS patients: 836,000 to 2.5 million
Age group with highest incidence of CFS: 40-59 years
Housebound and bed-ridden patients: 25 percent
Countries with the highest prevalence of CFS (cases per 100,000 population): Italy (9,500); Hong Kong (3,000); Iceland (1,400)
All figures are estimates. Sources: U.S. Centers for Disease Control; Institute of Medicine, National Institutes of Health; Jason, L. et al, DePaul University, CFIDS Chronicle, 2005-2006, “The Face of CFS in the U.S.,” and citations therein: Lee et al, (2000); Conti et al (1994); Lindal, Stefansson & Bergmann, (2002)
Sources for more information about ME/CFS
• Chronic Fatigue Research Center at Stanford: Research into causes, treatment and cure of ME/CFS, med.stanford.edu/sgtc/donation.html
• Open Medicine Foundation The End ME/CFS Project: Research into causes, treatment and cure of ME/CFS, openmedicinefoundation.org/the-end-mecfs-project/
• Stanford Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Initiative: Research into causes, treatment and cure of ME/CFS, med.stanford.edu/chronicfatiguesyndrome.html
• Open Medicine Institute: Research, diagnosis and treatment for ME/CFS, openmedicineinstitute.org/
• Institute of Medicine of the National Academies: Research, recommendations report on ME/CFS, iom.nationalacademies.org/Reports/2015/ME-CFS.aspx
• Centers for Disease Control and Prevention ME/CFS: Government information site, www.cdc.gov/cfs/
• Phoenix Rising: Online ME/CFS support and information center, phoenixrising.me/
• Solve ME/CFS Initiative: Online ME/CFS information center, solvecfs.org
• National CFIDS Foundation: Online ME/CFS information, ncf-net.org
Related content:
• Criteria and symptoms of chronic fatigue syndrome
• VIDEO: Stories of chronic fatigue syndrome
• Unraveling the mystery of chronic fatigue syndrome
• Whitney Dafoe: ‘When I crash’
Correction: This article originally stated that Janet Dafoe used to attend Sundance, the film festival. She used to attend Sundance, an intense, nine-day Native American ceremony. The Weekly regrets the error.
Correction: This article originally stated that Janet Dafoe used to attend Sundance, the film festival. She used to attend Sundance, an intense, nine-day Native American ceremony. The Weekly regrets the error.
Correction: This article originally stated that Janet Dafoe used to attend Sundance, the film festival. She used to attend Sundance, an intense, nine-day Native American ceremony. The Weekly regrets the error.
First of all, my heart goes out to all the families mentioned in this article. I’m floored that the Dafoe family remains so giving in our community despite this hardship.
It’s impossible to really understand how hard it is unless you go through it, or unless you have suffered a similarly disabling illness. Now imagine having no support at all, but instead nothing but scorn, blame for your losses, and difficulty getting any problem solving or help for that cancer or autoimmune disease, and there’s an inkling of what these families are suffering.
I have a close friend who died relatively young from complications of an MSA, misdiagnosed and mistreated most of that time as Parkinson’s. She intimated to me after the proper diagnosis that she felt she had to go along with the Parkinson’s diagnosis because being in a situation of having such disabling symptoms while being regarded as essentially making them up was so threatening, she couldn’t handle it. Being humored by those who are only willing to think it but not be honest is even worse.
However, having the correct diagnosis helped almost not at all, because the problem solving model being imposed on intractable diseases like these is so unhelpful.
The debate around CFS seems to have changed little in the last 30 years, including the way the problem is being approached. While I believe the idea that it’s a somatoform disorder is so wrong and pernicious it’s akin to an assault on people suffering so much, I doubt very much that one cause underlies this, and continuing to go about trying to solve the larger problem (and the individual ones) that way is likely only to result in more suffering and more articles like this one in another 30 years’ time.
CFS is more likely a description of how people manifest certain kinds of assaults on their health (for a range of underlying causes). Trying to find what they all have in common hasn’t worked in 30 years, and if the symptom picture is caused by a number of things, the approach isn’t likely to result in satisfactory treatments even if some common pathway or mechanism is elucidated.
I remember a really good research article from decades ago in which the researchers found that a certain percentage of CFS patients got better from antibiotic treatment. The researchers posited that some percentage of CFS was just undiagnosed Lyme disease. This was like a match to the fuel that remains the Lyme wars, because people with Lyme disease often have such complex things going on due to different infections (often there are co-infections with other diseases that need to be treated differently), time to diagnoses (late-stage disease can be as intractable as late-stage syphilis and is an art to treat, simple courses of antibiotics are not helpful), and other problems like viruses that emerge when people’s immune systems are depressed for so long. There can even be complications and side effects of treatments tried that go unrecognized because people are just so sick without knowing what’s wrong, anything else just gets piled onto the main disease picture.
I wish the Dafoe’s all the best in furthering research. I hope they will consider the effort to include an engineering approach to problem solving, which is a huge departure from the way disease problems are approached traditionally. It can only be done in a research setting and with informed consent when people are so ill.
Thank you for this article. My family has experienced the debilitating effects of CFS (or SEID), and if nothing else it is heartening to read of others suffering the same ‘mysterious’ symptoms. I also agree with the commenter above, that the disease may well be a complex of symptoms common to several underlying causes. I am super grateful to the folks raising money for long-overdue serious research into this debilitating disease. Thank you.
Depression is the most horrible feeling in the world. I still remember the desperate and frustrating feeling it brought me, the feeling that there’s no point to anything anymore. I’m glad that chapter of my life is now behind me. Remember hope is never lost it’s just up to you to get up and fight through it, if you need help then take a look at what I read over at http://aestheticreview.com/?p=305 there are some good pointers there that can really help. Don’t lose hope! Inch by inch it’s a cinch!
As someone who has suffered from this and related problems for over 53 years, I sympathize with those in the story. However, unlike the descriptions of the bed-bound, the worst part of my experience has been looking too normal – I wish I had the proverbial nickle for each time a doctor has walked in and said to me: “Well, you look good.”
Much of my life I had no choice. As a divorced mother of four,I couldn’t go to bed for days at a time. I pushed myself beyond my physical and mental limits with only small periods to achieve “down time.” My apparent ability to keep going, to keep doing, made it appear I was almost “normal.”
Now, nearing my 70’s, I am tired of the fight to “keep up,” but the grandchildren give me incentive. Some of my doctors have finally observed me long enough to believe that I am not how I look. I’m exhausted much of the time, I’m dizzy, living in a brain fog, spending four days at a time with migraines. I also have partial seizures, severe spinal arthritis, etc.
It is time for the researchers to get serious and find a cause/cure for this debilitating disease.
Thank you for posting this excellent article about ME/CFS. I was very moved by the personal stories about this devastating disease.
I hope that articles like this will help spur researchers to tackle one of the great scientific challenges of our time. Since research has historically been minuscule, it is time that the NIH increase the amount spent on ME/CFS from a measly 5 million dollars annually to an amount that could fund large studies seeking a cause and a cure. Funding for ME/CFS at this time is smaller than the amount spent on male pattern baldness or hay fever.
Sally Jones – Co-moderator SeattleME/CFS Support Group – Sick with ME/CFS for 24 years
@grandmakk,
Big hugs is all I can say –
But recognize that interpreting “you look too good” as a problem is because your time was wasted and you got no help that you needed. I’m here to tell you that when things get so bad that they can see it, the whole attitude turns to people ready to hammer the nails in your coffin, it doesn’t result in any impetus to help you solve the problem any better even then. This goes for family too who are afraid to even tell you how sick you look. With the doctor it’s so much worse because when they write you completely off as a goner they aren’t going to help then either, and the interaction gets so much more grim. What people want is problem solving. We all watch too many movies and TV. People think there will be some medical detective work if their lives are going down the toilet — or if at least, someone can see it. That’s not how problems are approached in medicine, at least not presently.
Hi, I have CFS and am being treated by Dr Kaufman at Open Medicine Clinic. I was first diagnosed long distance by Dr Jacob Teitelbaum who can be found online, and who had the disease himself and found a way out. He has had a great deal of success treating CFS, and he helped my PAMF doc to run more tests on me which showed very high viral loads. He told me I HAD to have anti-virals, and so I made my way to Dr. Montoya, who cannot take any more patients, but his office directed me to Open Medicine. The article and documentary were so moving, and I feel so badly for those who have not recovered. However, I think the article and documentary both did a disservice to how many people do either moderately recover or completely recover. I have gone in three months from being bed – bound 23 hours a day to 4-5 hours a day up, rest of the time puttering around house, able to tutor part time, to go to movies, and to beach to sit, if not to walk. After being told by three specialists at PAMF that I had post – viral disease and that there was NOTHING to be done but wait it out for one year, I went straight downhill. Luckily, I had read about CFS and I knew I had it. As it turns out, my collection of symptoms were caused by 1) Extreme adrenal fatigue and very low cortisol, 2) Hashimoto’s disease attacking my thyroid, 3) Very high levels of reactivated viruses, including Epstein Barr and HVV6, and 4) a very bad case of Small Intestinal Bowel Overgrowth, or SIBO. IN addition, I had very low B12 and Vitamin D, and my immune system was severely compromised with a natural killer cell amount so low that the lab came back saying this was unmeasurable. I have been on anti-virals, antibiotics, supplements, B12 injections, and stress reduction meditation, and a total diet change to no dairy and no gluten. I have a long way to go , but with this kind of diagnostic work and treatment, and with the degree of improvement I have already shown, I am hopeful. It is a very nasty disease, because if you overdo it feeling fine one day, you pay so heavily for the next few days. You also look okay, which means no one has any idea of what you are really going through .We need more research money, and PAMF needs to get with it. They will be getting some letters from me!! If anyone wants to email me for more information, I would be delighted to help. sukywyle1@gmail.com
PEM: Post-Exertional Malaise
ATP: Adenosine Triphosphate
MSIDS: Multi-Systemic Infectious Disease Syndrome
TBD: Tick-Borne Diseases
 (Lyme, Bartonella, Babesiosis, Erlichiosis, Rocky Mountain Spotted Fever, Q-Fever, Anaplasmosis, Colorado Fever, Heartland Virus, Tulerimia, Ricketttsia, Powassan Disease, Southern Tick-Associated Rash Illness, Tick-Borne Relapsing Fever, Borrelia Miyamotoi, and others (http://www.cdc.gov/ticks/diseases/)
These are acronyms and infections I’ve learned in my decades-long struggle with chronic fatigue symptoms. I believe I have MSIDS from multiple tick-borne diseases plus Epstein-Barr virus. It causes severe post-exertional malaise, and my recent understanding of the role of ATP in exertion and durability has helped me manage my life better.Â
Mr. Shimshock describes the impact of Post-Exertional Malaise very effectively. You discover you have a daily budget for activity and a certain amount of rest that you need before you have any energy again. My understanding of this dynamic is based on how our bodies use ATP.
ATP is the chemical that releases the energy stored in the mitochondria in our cells. Each of us has a finite amount of ATP that should be dynamically recycled through our cells all day long. In chronic fatigue, there seems to be interference with the ATP recycling process: when you use it, it takes a very long time to get it back into your cells and you’re just wiped out until the ATP returns. The more you exert yourself, the longer it takes to reset your ATP. Thus, the long recovery period mentioned by some of the patients in the article.Â
Well-meaning people often tell me that if I exercise I’ll feel more energetic. The opposite is true. If I exercise, I deplete my ATP and set myself up for a long recovery period. This is PEM. If I budget my energy, I can live a limited, more balanced, daily life. Overextending myself causes big setbacks. It’s very important to stay active within my limits every day, including slow walking. If I’m successful in maintaining the right balance, I can increase my energy budget very gradually over weeks and months.Â
Symptoms and causality are very difficult to pick apart in Chronic Fatigue. There is commonly inflammation, which might be caused by an immune system reaction to an infection that is either hard to diagnose, or as-yet unknown. Some people have thought that CFS is a problem of the immune system not knowing when to turn off; I think my immune system is actively trying to fight off infections that haven’t yet been identified or for which there aren’t effective tests. I have been diagnosed with 4 of the tick-borne diseases listed above, and 5 years of treatment with antibiotics, anti-virals, anti-fungals, anti-parasiticals, and nutritional supplements has allowed me to return a life that looks mostly lazy rather than incapacitated.Â
I hope Mr. Dafoe’s doctors and his father can avoid a common problem in addressing CFS, which is to develop and pursue a theory with a degree of focus that acts as blinders. Newer research and other possible causes may be ignored because of the investment put into pursuing one line of research and the need to filter out distractions. I think it will take intentional open-mindedness and humility to sort through all the subtle symptom variations to figure out the base cause(s) and the best treatment.Â
Thank you for this article Sue Dremann. It is one of the best I’ve read on the subject. I hope it gets picked up by the national and international media.
I have both fibromayalgia and resultant depression. It’s very debilitating, and I work with it regardless. Some days, it’s almost impossible to get out of bed, but somehow I manage. I wish there was something to make it easier, but so far, not much helps. Just financial desperation keeps me moving forward.
First of all, I wish to posit that, from having two close friends and two acquaintances with this disease, I firmly believe this is a serious, even life threatening disease.
Everyone who develops it goes from being very vivacious to being totally debilitated and bedridden.
My own hunch has always been that there is a viral connection–two of my closest friends suffered viruses and complications from those viruses immediately before being stricken.
I do not doubt that this is not a new, modern disease, OR that Florence Nightingale may have had it: When I studied medical history two decades ago, I learned that Florence Nightingale, while attending the wounded soldiers during the Crimean War, contracted typhus, a louse-borne disease now easily cured with antibiotics.
However, before the advent of them, most people did not survive–though Nightingale did, though not without the loss of her hair from prolonged fever.
It was after her return to England that Nightingale had symptoms of SEID ( the name MUST be changed from
CFS, which implies psychosomatic origins). This may have been a result of an irregular immune response to typhus and any other bacteria and viruses she picked up in the Crimea ( typhus and the lice that carry it are endemic to Russia and the Ukraine). Nightingale had a vigorous life and a workload that often precluded adequate sleep, similar to today’s victims, so adrenal and immune system fatigue may play a role ( just a hypothesis), as may anemia–since such a lifestyle
often precludes adequate nutrition as well.
I truly hope that research and funding increase and
Improve to the point that a cure will be found before any more lives are destroyed or lost.
Thank you for spreading the word about this awful illness, one that I have been living with for 30 years and 5 days. There is an editorial mistake however in the article that I think is important. Chronic Fatigue and Chronic Fatigue Syndrome are two different things. Chronic Fatigue is ore of a symptom of many causes where as Chronic Fatigue Syndrome is a particular illness. This type of mistake also happens with medical providers that are well educated on the subject and leads to many misunderstandings. Again, thank you for the effort, and cheer your article.
Meanwhile back on the ranch, it’s the water, soil and air that put the chronic in chronic fatigue. Never met one yet without gut problems. The WATER!
http://www.atsdr.cdc.gov/toxprofiles/tp114-c2.pdf
I was diagnosed with MS in 1999. Symptoms for about 10 years before that. Then diagnosed with Lyme Disease and co-infections in 2011. I will probably never know if the Lyme caused the MS symptoms, or MS is Lyme. Chronic Fatigue is certainly a large part of how I feel. I’ve tested positive for EBV, but don’t remembering having it. I have MTHFR gene mutation. Also have CPN and CCSVI. Chronic low WBC counts. Low adrenals. All related?? I think it’s all from Lyme Disease. It’s a pandemic in CA that not many are talking about. It breaks my heart that the CDC and most MD’s and insurance companies don’t believe there is Chronic Lyme Disease. So many are suffering needlessly and ridiculed if they ask their doc about Lyme.
I agree with the comment by lolly.
Everyone needs to take care about the unfortunate name of Chronic Fatigue Syndrome which was a grossly misnamed disease. Chronic Fatigue is a symptom of many other illnesses, diseases, depression, medications, medical treatments. Chronic Fatigue can be overcome once the illnesses, disease, etc. is resolved. CFS is a lifelong disease.
I cannot find any information on the July 16th fundraiser mentioned in this article. Does anyone have more information on this event ?
I forgot to write that a good place to be tested for Lyme Disease is right in Palo Alto! IGeneX http://www.igenex.com/Website/
Janet and Ron,
I am really sorry about your son’s conditions. As soon you will contact local doctors (at the beginning by email) in the hospitals (it can be Jamaica, India, or Ecuador rain forest), where your son spent time, as quicker your son will be healthy. These doctors know very well local diseases, including diseases from bites of local insects, and the have good experience how to treat them. They will put quality diagnose. It is important Whitney will call to memory what area he stayed when the symptoms started and contact the doctors exactly in that place. Good luck!
Svetlana
I also encourage Dafoe’s family to have him tested for tick borne diseases at IGeneX. Tick borne diseases can be immunosuppressive, resulting in rampant viruses and a whole host of other systemic problems. But even IGeneX’s testing isn’t perfect. Babesia often comes up false negative, as does Bartonella. Bartonella is a surprisingly pernicious disease found worldwide. There are over a dozen species that infect humans, but “standard” lab tests only look for 2, and they even miss half of cases they should find. Given this young man’s worldwide travel, he could easily have a species from overseas. Galaxy Diagnostics does a culture test that is about 80% accurate when it’s positive. Costly, but likely worth it in this case. Dr. Ed Breitschwerdt at NC State has done some great work and written some papers trying to call attention to this hidden epidemic. Dr. Mozayeni in MD has also developed some pioneering treatments. He did a small CDC funded study showing how surprisingly common Bartonella was in chronic rheumatology patients who were otherwise undiagnosed, or who had been diagnosed with Lyme or CFS/ME.
It’a shame that doctors are so apprehensive that cfs patients must see 20 doctors on average before the diagnosis is given when CFS is fairly easy to tell for anyone with experience: it is the only disease that exhibits severely reduced exercise ability AND precisely triggered post-exertional sickness described here. I myself saw half a dozen before quitting 7 years ago. I stopped looking for the diagnosis since I don’t need it, but it must be a hell for the less fortunate who need it to qualify for the disability.
Dear PA-North and others who might be interested: Thank you all (and the Palo Alto Weekly) for your support! The direct website for much appreciated donations is:
http://www.openmedicinefoundation.org/donate-today-to-the-severely-ill-big-data-study/
Please email me at ykishimoto@earthlink.net for details on the event. It will be early evening of Thursday, July 16th.
Dr. Jose Montoya is the leading expert in CFS and has been doing clinical trials, research and treating patients at Stanford for the last 10 years. He is known worldwide, and his team has discovered much about this disease. He has treated people, many of which are much improved. I am surprised that this excellent article does not mention him.
Ten years ago, Dr. Montoya started his CFS research at Stanford when it was an extremely controversial topic – most doctors did not even believe their patients. Dr. Montoya did, and has defined the direction of this terrible disease.
Go to youtube and search Dr. Jose Montoya Chronic Fatique – you can see one of his lectures regarding CFS, his research and it’s treatment. For all the commenters above, this video will give hope, information and clear science.
All my best to everyone suffering form the awful disease. My niece had been debilitated for years, but with Dr. Montoya’s medical care, she is a functioning adult again. He is at the Stanford Clinic.
I appreciate that the reporter interviewed a variety of people with different severities of the illness. Too often the most severely ill are neglected but there are also those of us who struggle through life daily and appear ‘normal’ to those who don’t see that we spend hours or days at home to go out for a few hours once a week or less.
As a scientist, I would make one correction to the facts listed at the bottom. “Incidence” is at what age people come down with an illness; “prevalence” is the age at which the most number of people are noted to have the illness. The two are not the same. The research is still spotty but they indicate that the age people most commonly come down with the illness are teenagers and people between 30-40 years of age. For example:
http://www.biomedcentral.com/content/pdf/s12916-014-0167-5.pdf
It is true that people take a long time to get diagnosed (if they get diagnosed at all) and that there is no great treatment so people continue to be ill for years. That is probably why the greatest numbers – prevalence – are in the 40-50 years old range.
I don’t wish to sound arrogant, nor do I wish to sound like a tin foil hat wearer, but … There is a possible answer that I have not seen mentioned in these articles or the comments.
Fluorinated antibiotics and anesthetics are both known to cause the major symptoms of CDS: joint pain, thyroid dysfunction, brain fog, and fatigue.
May I ask the sufferers here (Polly, Another of Us, and any others) what is your history of taking antibiotics with the string ‘floxicin’ in their names? These include the most common, ciprofloxcin (sometimes called just ‘cipro’). Also levoquin is an antibiotic in this class. The fact that many sufferers’ stories start with an infection tells me that you may have been prescribed a drug for that infection. Were you? If so, what?
Additionally, for the sufferers here, what is your history with surgery? The most common inhalation anesthesia in use today, for both animals and people, is isoflurane. Isoflurane is proven to cause alzheimer symptoms in laboratory animals (where it literally causes amyloid tangles known to cause alzheimers), and is equally well known to cause post-operative cognitive deficity in both elderly people and elderly dogs.
Folks, these are established facts and I’m a little dismayed to read an entire article about CFS and not see one mention of these factors. It is tragic, so tragic.
Incredibly, I was once told by a doctor at the Palo Alto clinic that I could NOT have lyme disease because it does not exist in California. When I questioned her on that assertion she got defensive and told me she “majored in” vector-borne diseases at Johns Hopkins and that was the end of the discussion.
Just because a person is wearing a white lab coat and/or has the word ‘Doctor’ in front of their name, does not mean they know what they are talking about. Just like the posting above, I would encourage everyone — especially sufferers of poorly understood diseases — to “question authority”, do your own research, leave no stone unturned and do NOT be deterred by the so-called experts that are so plentiful in this community.
My prayers are with all of you.
Right you are: Here’s A link to Fluorinquinolone Antibiotic Toxicity on facebook…
https://www.facebook.com/FluoroquinoloneToxicity?
I have Chronic Fatigue as well…my heart is breaking with this story. I feel so deeply for him…I am so sorry 🙁
If you are looking for a way to make a difference in this world- this is it. With 17 million suffering from ME/CFS worldwide, up to 2.5 in the U.S. alone, and very little government funding your financial contribution can help rid the world of this devastating, ignored disease.
My child became ill in the 6th grade following an acute H1N1 infection. He has never been the same. His pediatrician’s response to his fatigue was to recommend psychotherapy. The course of his illness was relapsing and remitting for the first 1 1/2 years, then he had an injury and began a rapid decline. Eight months later he caught a flu and had a major allergic reaction. He spent 2 years so cognitively impaired that he couldn’t remember anything about his life, recognize his parents faces, read, do school work, have a social life, and was mostly bed bound.
We tried everything: anti inflammitories, steroids, physical therapy, antidepressants, cognitive behavioral therapy, biofeedback, graded exercise therapy, acupuncture, mindfulness meditation, gluten, dairy, and egg free diets, almost no carb diets, guaifenesin, T3, LDN, doxycycline, and rifampin.
All the while I kept researching his symptoms, disease theories, and treatment protocols. About a year and half ago I figured out that he might have ME/CFS- on my own, no doctor had a clue. And believe me, we have money, we took him EVERYWHERE! No doctor had a clue! We made an appointment for him with an ME/CFS specialist. It took 6 months to get in to see him. He did specialized testing which hadn’t been done before and found an active enterovirus infection and confirmed the diagnosis. He put my son on antiviral medications, immune system modulators, and medications for Postural Orthostatic Tachycardia Syndrome.
My son now remembers his whole life, recognizes his family, can be upright, and can read. He is much better and we are very, very grateful for that. He still cannot do school work, play video games, exercise, get out of the house more than once every few weeks, maintain a social life, or work toward fulfilling any of his aspirations. All of these things require too much exertion, post exertional worsening of symptoms is a hallmark of this disease. Making a sandwich, showering, studying, running for the phone, walking in the library, carrying on a conversation, and going to get himself a drink of water can all land him in bed for anywhere from a few days to a few months. This is no kind of life for a smart, hard working, fun loving, kind kid who wants to take the world by the horns. He should be entering his senior year of high school in a few months, instead he is hoping to be well enough to begin high school work. He lives in a state of suspended activity and aspirations.
There are millions of people living with this illness all over the world. Our best hope seems to be the Open Medicine Foundation’s End ME/CFS Project http://www.openmedicinefoundation.org/the-end-mecfs-project/ . They have a brilliant team of medical researchers ready to get to work on this disease, all they need is money. I am donating, I hope you will, too. You can make a difference. I hope you will.
Thank you for taking the time to tell this story. I am among the vast number of people who live w/ ME. I am grateful daily that, although housebound, I am not at the severe end of the spectrum. And I live my life carefully, that I might not step over an edge that pushes me into a severe state like Whitney. Like many, I look pretty normal. I don’t appear sick. They can’t understand, couldn’t comprehend, how limited my brain power is, how little I can exert myself without precipitating a crash.
I grew up in your part of the world, went to Woodside High, but have lived many years in Australia. There’s some hopeful work going on at Stanford, maybe articles like yours can heighten awareness, spur researchers on to get to the bottom of our illness. Best wishes to Whitney and family, and all other readers w/ ME.
The article description on Facebook that I saw said that the title of this article is “Chronic fatigue syndrome saps its victims, but new research may find the cause is Lyme.” And the article doesn’t even mention Lyme.
Maybe you were hacked?
I’ve suffered with CFS for 25 years. No recognition. Why?
Michelle Akers couldn’t work an 8 to 5 job suffering from her condition but she could play on the U.S. Women’s National Soccer team.
http://usatoday30.usatoday.com/life/health/doctor/lhdoc240.htm
@Tony,
Laura Hillenbrand, the author of Seabiscuit, was able to write her book from her bed, but participates almost not at all in interviews and publicity because of her health. She is said to have CFS.
I read the article you linked to, but don’t understand your comment. The article describes a person who struggled hard and had numerous setbacks and finally lost her battle and had to quit soccer altogether.
People who battle things like that are to be commended for not giving up, and for accomplishing whatever they can. You wouldn’t expect a healthy person who runs to be able to do a marathon every day just because they completed one once. I don’t understand your scorn for Akers when the article tells a different story.
There are no physical, chemical or neurological differences found in people with fibromyalgia or chronic fatigue. I am very sad for people who shut down like the people in this article did. Why does this NEVER happen to someone who does not have the option of their parents taking care of them? It’s clear that these people need psychiatric help.
http://iom.nationalacademies.org/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf?utm_source=getresponse&utm_medium=email&utm_campaign=research_1st&utm_content=IOM+Report+on+ME%2FCFS+-+About+Much+More+than+a+New+Name
Having suffered with ME for over 10 years, the first thing i noticed was brain fog & my ability to problem solve was impaired. Apart from the constant pain i was in, i was pushing harder each day to overcome my difficulties for the last two active years until i could no longer carry on with my business, of which i was paid extremely well…! To think i would rather sit on my back side & claim i needed support! which wasn’t on hand & to see my savings dwindling away whilst no medical professional could give me a definitive answer for the exhaustion & pain i was in, was devastating. I became bed bound for 8 months, i found i was unable to read or write through cognition short term memory failure. Over time i read single words, as a child would when learning to read, slowly things started to sink into my brain & i soon believed something had changed my bodies DNA within my brain, which i still believe. At times i liken it to altimeters or Dementia with flu & muscle with tendon ligament damage. Each year my abilities i feel are improving, but my ability to pace myself has not, so within 2 hours of activity i am fatigued. With the thought of being at risk of losing my sanity, my home & having lost my old full active life, i have had thoughts of suicide crossing my mind, but i am ever hopeful of society developing a better understanding of how debilitating this condition is, & possibly recovering when a cure is found.
I know people who did not have the option to go home and have parents take care of them, and suffer incredibly for lack of help. However, there probably are many being cared for by close relatives – people who are that sick often lose key relationships – if they need that kind of care, who else is going to take care of them? But the fact that you make such a claim says more about you than it does about anyone who is sick.
@Goswellen Jorae (sorry, got confused in making the last post, that was me to GJ):
Thank you for the February 2015 Institute of Medicine link, but did you read it? It basically says that people are seriously physically sick, a majority of doctors don’t know enough about the problem, and they inappropriately dismiss it (as you have just done).
It says, “Many heath care providers are skeptical about the seriousness of ME/CFS, mistake it for a mental health condition, or consider it a figment of the patient’s imagination. Misconceptions or dismissive attitudes on the part of health care providers make the path to diagnosis long and frustrating for many patients. The committee stresses that health care providers should acknowledge ME/CFS as a serious illness that requires timely diagnosis and appropriate care.”
In case you missed that (from your own link):
“…MISTAKE it for a mental health condition…”
What I find disturbing about the article is that it’s the same exact conversation that’s been going on for decades, but makes it sound like everything in it just occurred to people yesterday. We’ve had this debate, and much of what this article recommends has been done. More than once. It hasn’t borne fruit. At one time, the debate was whether to change the name to something like CFIDS instead of CFS. I seem to recall something like 20 or 25 years ago, someone at Harvard (?) did a large study in which they took a pool of people diagnosed as having CFS to study them, and before they could be sure they had just CFS patients, they had to make sure they didn’t have something else. I can’t remember what the other diseases were now, but it was an alarming array of other hard-to-diagnose, serious and often treatable conditions, including tick-borne infections, autoimmune diseases like lupus, cancers, etc. Someone may even have been HIV positive (can’t remember now).
Better “diagnosis” just means more people will be labeled and continue to not get better. The trash can will just get clearer. This approach has been tried. You know what they say about doing the same thing over and over again and expecting a different result? (It’s not the sick people here with a mental problem.)
(Weekly, please consider leaving the link GJ provided, it’s actually quite helpful.)
Goswellen Jorae,
What makes you think this never happens to people without parents to take care of them? Those are only the stories that make the news, because someone (the parents) is able to tell the story!
There are many people of all ages dealing with this disease – like me. My parents are not taking care of me, I can assure you. Rather, my children will probably have to start taking care of me soon, and I am only 53 years old.
For those without any family able to care for them? They die, Goswellen. They die alone and in agony. Because of ignorance like yours. Get educated, or keep your mouth shut. Comments like that are harmful to people who are already suffering.
I enjoyed living in Palo Alto for a few years before settling elsewhere on the peninsula. Thank you for this article on a misunderstood disease.
After a debilitating viral infection at age 14, I’ve suffered my entire adult life with undiagnosed ME/CFS. If it wasn’t for the Institute of Medicine report on ME/CFS a few months ago, I probably would have lived the rest of my life housebound and unable to work and never known why.
ME/CFS absolutely and utterly destroys the lives of 1+ million in the US, yet is often callously dismissed by doctors, employers and educators. You look fine. You are imagining the symptoms. Everyone gets tired; just push through it. You need to eat right and exercise more. It’s your fault for not responding to these medications. You’re not working hard enough this month, so here’s a ton of extra work to do.
Government spends less on this astoundingly common life-crushing disease than they spend researching male pattern baldness. It’s hard to sustain hope when your disease scrapes the bottom of society’s priority list.
Llewellyn King wrote a very good summary of the current state of ME/CFS in the United States from a political standpoint. Some readers might be interested, so here is a link:
http://thehill.com/blogs/congress-blog/healthcare/243667-a-job-for-a-lone-congress-member-speak-up-for-a-forgotten
So proud of this family for their strength and dedication. Whitney is to be admired for his silent strength. CFS is brutal.Thank you Palo Alto Weekly for doing such a great job highlighting this severe illness.
That institutes of medicine report (misinterpreted by a poster above) can be found at
http://iom.nationalacademies.org/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf?utm_source=getresponse&utm_medium=email&utm_campaign=research_1st&utm_content=IOM+Report+on+ME%2FCFS+-+About+Much+More+than+a+New+Name
Having a name for it is meaningless if nothing changes.
Also interesting parallel circumstance relative to this conversation (Good Housekeeping article on Lyme disease):
<http://www.goodhousekeeping.com/health/a33353/chronic-lyme-nearly-ruined-my-life/?src=spr_FBPAGE&spr_id=1443_206683913>http://www.goodhousekeeping.com/health/a33353/chronic-lyme-nearly-ruined-my-life/?src=spr_FBPAGE&spr_id=1443_206683913
The same approach to solving problems has not worked there, either, and in Lyme, the cause is known. Doing nothing isn’t working, blaming people isn’t working. Just a suggestion for the new research group: apply other kinds of problem solving.
This was too touching. Glad the community is becoming better acquainted/knowledgeable with this disease.
Contrary to the anonymous poster above, the Institute of Medicine report is not meaningless and I have not misinterpreted it.
http://iom.nationalacademies.org/reports/2015/me-cfs.aspx
The IOM report has enabled me to get the correct diagnosis after 4 decades of misdiagnosis and incorrect treatments that often had horrendous side effects.
This is not meaningless. This is lifechanging.
@A friend in the community, You miss-understood. My scorn was/is not directed at Michelle Akers, but at the people who say there is nothing wrong with her, (people with CFS), because she runs around playing soccer looking healthy and more physically fit than the majority Americans. Just because a person musters up the strength for a few hours a day to push themselves does not mean they are capable of 14 hours of function-ability which is required for self-sufficiently.
Susan Kreutzer uses a very apt. analogy, “it’s like someone removed all of the blood from me and replaced it with cement.” I’ve used the analogy like someone had pumped me full of hot liquid lead. So imagine that you wake up after 10 hours of sleep feeling as if you hadn’t slept a wink, your body feels as if it weighs 200lbs more than it actually does, every joint and muscle in your body is in pain on top of a headache. So what do you do? You do everything you can to lessen the symptoms. Meds, vitamins and other supplements, whatever works to jack up your energy. You recover a few hours later to accomplish what you can for the day and then take a nap followed by evening vegetation. What’s worse is going through periods of significant yet temporary improvement only to be let down all over again further imbedding in people’s minds that nothing is wrong with you.
I was knocked down before I ever got established. For 15 years doctor after doctor blew me off so I gave up seeking help a decade ago when society’s social nets flushed me down the drain. As a result I’ve been falsely accused of a lot things based upon erroneous assumptions and therefore antagonized, harassed and berated repeatedly for being something I’m not. And I know a lot of CFS sufferers who have also been wrongfully stigmatized, falsely portrayed incurring the unjust scorn of those people, (pillars of society), who don’t know what they are talking about.
I want to thank the Weekly for this wonderful coverage, Yoriko Kishimoto, Karen Holman and LaDoris Cordell for helping fundraise and galvanize our community, and thank you for all your very supportive comments. It is a little daunting to be so exposed, but we want to do everything we possibly can to help get this disease understood, recognized, and get research funded. Our whole lives are now dedicated to that. It is immensely helpful to feel our community supporting us. It has been very lonely. I sometimes felt I was in two worlds, one in public, and then home to the horrible nightmare of our son’s suffering. It helps that people know and care. I have to say, one of the most devastating moments recently was when a doctor, who had known us for all of 5 minutes, and knows nothing about our family or Whitney except for a few pages of his medical records that he scanned in those minutes, said that medical interventions wouldn’t help, and then when I asked why, he said “Frankly, I think he needs intensive psychiatric intervention”. This was the most upsetting, invalidating comment I have ever experienced. It’s malpractice. Period. Anyway, I also wanted to say that Ron was on the IOM committee that reviewed all 9000 research articles and wrote that great report. However, NIH has still not responded, and even refused to even look at two grants that Ron sent them with multiple principal investigators on it in addition to himself, like Mark Davis, Chair of Immunology at Stanford, Mike Snyder, Chair of Genetics at Stanford, and Ron Tompkins, a famous doctor at Harvard. The NIH needs to fund research on this disease that affects so many US citizens, but their politics are making the whole thing stuck. Ron has talked with Francis Collins, Director of NIH about this, and will pursue that. I have also managed to get Anna Eshoo, bless her, to write a wonderful letter to Francis Collins, asking him what his plans are for addressing this disease, now that the National Academy of Sciences (IOM report) has made it clear what the problem is and called for more research. Anyone with questions is welcome to ask, contact me here, and I will try to answer when I can, or via email, janet.dafoe@gmail.com. From the bottom of my heart, I thank you, and I pray for research, biomarkers, treatments and a cure. I miss my son so much!
According to the NYT, it’s now possible to determine through a simple blood test every virus to which a person has been exposed:
http://www.nytimes.com/2015/06/05/health/single-blood-test-for-all-virus-exposures.html
It would be interesting to see whether those with CFS have been exposed to a common virus or viruses. Perhaps CFS is not caused by a previously undiscovered virus. It seems possible that those with a particular genetic or environmental background might respond in an especially adverse manner to to a viral infection which persists due to integration of viral DNA in the patient’s genome.
To elaborate: Epstein Barr virus (EBV) causes mono, but it is also associated with Burkitt’s Lymphoma (in Africa) and Nasopharyngeal Carcinoma (in China). Perhaps it is associated with CFS in genetically or environmentally susceptible individuals.
@Tony,
Thank you for the clarification, I’m glad you followed up. I read sarcasm into your post because of how people with CFS are often criticized. (And I literally sat there for several minutes trying to remember the word “sarcasm” – I know what you are talking about.)
@Jeff,
I was not the one who misinterpreted the IOM report, that person’s post was deleted. I also did not say the report was meaningless, I defended it. I said just having a NAME for the condition is meaningless unless how we approach the problem changes, because as well done as the report is, it’s absolutely tragic how little has changed in decades.
Suffers mistakenly think that having a name will mean they are taken seriously. They mistakenly think that if their problems were more visible, they would be taken seriously. Taken seriously to them means someone will try the solve the problem for them personally and for all suffers so they can get better. The trouble is that this is naive about how problems are currently solved in medicine, and I’m saying, that has to change or money will be spent and years will pass, and still people’s lives will go down the tubes with no help. Sufferers do deserve to have problem solving for themselves and for the problem as a whole. Going down the same road of the usual infectious disease problem solving model has not borne fruit in decades. It’s time to solve the problem differently.
With reference to the use of “chronic fatigue” and CFS in this story:
I stuck with chronic fatigue rather than using ME/CFS or myalgic encephalomyelitis throughout the story because the Institute of Medicine report found the two diseases, while sharing many characteristics, were not supported as the same disorders, and it did not recommend using that name.
The Internal Medicine report also noted:
“In considering what name would be most appropriate, the committee turned first to “myalgic encephalomyelitis” or “encephalopathy” (ME), which was the name most commonly supported in the public comments. The committee, however, was concerned that the term “encephalomyelitis” is not well supported by the evidence and that there is substantial controversy surrounding the two versions of this name. Neither version conveys the full complexity of this disorder. The committee notes that many of the other names that have been proposed focus on particular organ systems.
The report also acknowledges that CFS is a stigmatizing name and does not fully describe the disease, as does the story. Paragraph 4 notes the stigma attached to the CFS name.
In choosing how to approach the name for the story, I looked at several prominent research reports and websites, which interchangeably used ME/CFS or just CFS. I chose to stick with CFS throughout so that readers would not be confused, but referenced ME/CFS in the third paragraph. Subsequent use of “chronic fatigue” was meant as an abbreviated reference, a common device in journalism to keep the reader from tripping over acronyms.
I also note that Dr. Davis has named his institute the Chronic Fatigue Syndrome Research Center at Stanford, which was another factor in my decision.
In hindsight, I would have added a paragraph to distinguish ME/CFS from other sources of chronic fatigue.
But I can appreciate the concern sufferers feel over the name. SEID seems to be much more appropriate to describe the disease, but the name has not been adopted yet.
@Sue,
The article is better than perhaps any article I’ve seen in years. The trouble is that this debate over the name has gone one for decades. (Anyone remember “CFIDS”?) The name is not the problem. Making a more helpful name for it will not change the way medicine solves problems, either for individuals, or from a public health standpoint. That’s the problem here. Seeing all the same things repeated again and again over the years just makes me cry.
Weekly,
your system is hiccupping. pls delete the first two posts (I made minor revisions betwee). thx
Hi Sue- The article was fantastic; thanks so much for writing such an empathetic, insightful piece. I think people’s issue was not you using CFS, but shortening it to “chronic fatigue.” Even though it’s a horrible name, the full illness name is chronic fatigue syndrome. “Chronic fatigue” on its own is a symptom of many illnesses (and sometimes bad lifestyle choices), including most auto-immune illnesses and cancer. One of the many reasons that CFS is a bad name for the illness is because it is instinctual to shorten the full illness name to chronic fatigue.
As a veteran journalist myself I would like to congratulate Ms. Dremann on wrapping up this subject matter in concise form but with great understanding. Were all journalists equally conscientious we might well be closer to a cure.
I do, however, echo Justin Reilly’s objection to calling the disease “chronic fatigue.” As he notes, this compound noun is a symptom of many, many chronic illnesses — cancer, multiple sclerosis, Sjögren’s syndrome, lupus, rheumatoid arthritis and more, and therefore not suitable as a name for any one.
A bit of history may be helpful here. Going back into the past century, this disease had been known as everything from “Iceland Disease” — after an outbreak there — to “Benign Poliomyelitis” (for its lack of immediate fatalities.)
A descriptive official name, “Myalgic Encephalomyelitis,” (M.E.) originated in a 1955 editorial in the prestigious British Medical Journal. This appeared following the infamous outbreak of M.E. at London’s Royal Free Hospital, which had struck down staff en masse.
The World Health Organization (WHO) made the name official internationally in 1968, and WHO staff assigned it the code 93.3. This put it within the category of neurological diseases, as it then was already known to affect spinal cord and brain tissues.
Yet Americans – including, alas, the majority of their doctors — know the disease only by the misleading and dismissive moniker “Chronic Fatigue Syndrome.” This is so because the Centers for Disease Control and Prevention (CDC) had re-christened it so in 1988, and put the full force of its many publications, studies and releases behind embedding it in the national mind.
Why? Surely someone must have noticed that this would appear a crass gesture of “Ugly American” intellectual imperialism, apart from other improprieties.
Propaganda is the answer. Beginning in the winter of 1984-85, when a large outbreak of the disease mysteriously struck Incline Village, Nevada, on the northern shore of Lake Tahoe, scary rumors had flown. Would the new Tahoe disease turn out to be a super-flu, or perhaps mononucleosis on steroids?
This was not good for the economy. The Tahoe area economy, to be specific. Tahoe attracts three million visitors annually, fueling a multi-billion dollar economy based on real estate and tourism. Rumors scare away tourists, second home folk and dollars.
Agencies of the Federal government, namely CDC and National Institutes of Health (NIH), were enlisted to subdue the growing panic. They plunged in. An NIH viral expert, for example, encouraged edits to CDC reporting that would delete mention of seizures among the stricken.
Finally, in 1988, a committee meeting was set to consider the disease and its name. It would include international experts familiar with Myalgic Encephalomyelitis who clearly identified the Tahoe ailment as such. The name “Chronic Fatigue Syndrome” (CFS), employed in some US material since 1986, would be under discussion as a happily anodyne alternative to the grim-sounding Myalgic Encephalomyelitis.
Speaking generally, of course, no corporate chief or government administrator in her or his right mind will leave the outcome of an important meeting to spur-of-the-moment interactions among participants. Nor did this meeting seem to have been left to chance. The name “Chronic Fatigue Syndrome,” suggesting only mild discomfort on the part of its victims — as opposed to the cancers, heart failure and overwhelming disability that constitute the reality — was duly voted in. Three committee members, all with wide experience of ME, felt so strongly their dissent that they resigned on the spot and walked out of the meeting in apparent fury.
Tahoe recovered rapidly. The patients have not.
At present the NIH and CDC often combine names, referring to “ME/CFS” and following pressures and initiatives from outside.
Yet despite apparent peace the NIH most peculiarly has initiated a purge of the name Myalgic Encephalomyelitis. Observer minds boggled when the Institute of Medicine (IOM) committee hired in 2013 by NIH to assess “ME/CFS” announced its conclusions ahead of time in early 2015; they include the proposed new name “Systemic Exertion Intolerance Disorder” (SEID.) There wasn’t really much encephalomyelitis to be found in patients, IOM reasoned, after having excluded Stanford research to make the point stick.
It is beginning to emerge, however, that engineering the new name may have been still another degree less kosher. At the May 29, 2015 London conference of British M.E. charity Invest in M.E., one speaker announced truly gobsmacking news: an IOM insider had informed him that, contrary to Institute procedure, the committee had been ordered to get rid of the name Myalgic Encephalomyelitis. And so the prestigious IOM committee papered over the name studies have shown to make medical professionals and public alike most inclined to take the disease seriously – thereby maximizing help for patients. By logic one must reason that the purpose of SEID was premeditated to discourage help and care for patients.
I was house bound with CFS for about five years, and I have been well for about five years. I hesitate to comment here because the tendency of people who are dealing with this illness is to throw rocks at people like me. First, when you have the illness, people who are well can’t believe it. Then, when you recover, people who are ill can’t believe it. But I really did spend years unable to walk more than about ten yards or to drive a car. Mostly, I was entirely bed ridden. I had, according to Dr. Kent Holtorf — google him if you don’t already know — a classic case. I had all the classic signs and viral markers. Blah, blah, blah. Sorry to say blah, blah, blah, but five years describing my symptoms was more than enough. I tried every treatment under the sun since I had a lot of financial resources at my disposal. And as I always said back in the day, I would gladly have handed over my entire net worth to defeat this thing.
I don’t really like to think about CFS, but I feel a moral responsibility to put out there to the community of sufferers what I know. And what I know is that the mind/body therapies such as the Lightning Process and Mickel Therapy will work for an awful lot of sufferers, but they won’t be open minded enough to try. The people who have invented these therapies will tell you that there is a medical explanation, although the details are vague: CFS is, roughly, a brain disorder or a central nervous system disorder. If there is a virus or other infection, it’s a symptom, not a cause, although the disease may be triggered by an infection of some sort. I notice that researchers at Stanford have now identified some possible brain abnormalities in people with CFS, and this doesn’t surprise me at all.
I have learned a set of draconian mental disciplines, known as the mind/body therapies, that can put CFS into remission. I still get an occasional symptom, but I can quickly arrest it by taking certain steps. So, I am able to live pretty much as I always did before the illness, and in some respects, better. I consider myself well. I am a world traveler again. I am an architect again.
To all of you who suffer: Keep an open mind. Not all knowledge resides in big universities or the CDC.
I feel it must be pointed out that ME has varying degrees of severity. This is known as “clusters”, and those with the severe form are the people from whom we are now hearing. If you are in this severe cluster, then indeed your life has been ruined by it. That is largely due to Ignoring this disease by the US Govt Agencies that are charged with keeping our nation safe from such events, i.e.The NIH,which controls the money, and the CDC which controls the research. Both are miserable failures to this point.
Lyme disease
After the documentary on ME/CFS shown in downtown PA last night, Ron Davis mentioned that he thought that ME/CFS, Lyme Disease, and PANS could be the same disease with different causal agents. He also said that his research lab is in the process of carefully analyzing the DNA, RNA, metabolites, and viruses in the blood of 20 patients with severe ME/CFS. Perhaps this approach would provide more insight into the disease if used instead on the blood of children with PANS. Due to the rapid onset of PANS (as opposed to ME/CFS) one might better see changes that are causing the disease rather than secondary or tertiary changes resulting from the prolonged disease process. The cause may also be combinatorial (i.e. one or more environmental factors combined with one or more infectious agents perhaps combined with genetic susceptibility). A child’s immune system is likely to have experienced far fewer infections than that of an adult, so there will be less background of irrelevant infectious agents. And it would be easier to detect environmental factors (i.e. low levels of toxins like arsenic) that could precipitate the illness if tested earlier. Another practical matter: it may be far easier to obtain NIH funding for research into PANS than ME/CFS.
Ron is working with wonderful PANS doctor, Jennifer Frankovich, at Stanford, and with funding, he is planning on working with her on that population as well.
I believe that Mr.Mark Zuckerberg & his spouse must be informed of this lack of Research Funds; also Mr.& Mrs.Gates. There should not be a higher priority for them than to give back to the area which spawned their wealth,i.e. Palo Alto and neighboring towns. I can say that Mr. Jobs was contacted many times and never responded, years ago. Who knows, things might be different now if he had helped when given the opportunities? If anyone can get this topic into their realms, Please, do so.
After read the full story of Whitney Dafoe, I feel deeply sympathy.
Actually I have the similar days starting from 1998 low back injury + 2004 and 2006 car accident.
The myoclonus (twitching, spasming), and myalgia (muscle pain) spread my low back and both side shoulders all day and night never ends. It is worse after midnight. It is impossible for me to have sleep besides pain killer. Even pain killer is only keep few hours relief. Later on I realize the side effect of painkiller causing me dizzy, weak all day and stomach pain.
Gradually I reduce using painkiller. Accompany with emergency treatment in ER by injection, routine trigger point injections, and Intradiscal Electrothermal Annuloplasty (IDET). Replace the pain killer with physical therapy and acupuncture treatment for more than 10 years. Afterwards I take garden therapy.
My path: deal with chronic fatigue syndrome, CFS:
Using local Injection treatment instead of oral drugs affecting whole body.
Using massage, physical treapy , acupuncture treatment instead of injection.
Try to maintain daily schedule as usual. If I miss the part then skip to next, always keeping in regular period.
Gardening can often feel like a good workout.
Organic food and clean water (arrowhead bottled water)
Note:
http://www.health.harvard.edu/staying-healthy/foods-that-fight-inflammation
Foods that fight inflammation
http://www.drmyhill.co.uk/wiki/Summary_of_my_approach_for_CFS_/_ME_sufferers.
Summary of my approach for CFS / ME sufferers.
http://www.cdc.gov/cfs/causes/
Causes
Infection
Immune System and Allergies
Hypothalamic-Pituitary Adrenal (HPA) Axis
Abnormally Low Blood Pressure and Lightheadedness (Neurally Mediated Hypotension)
Nutritional Deficiency
http://www.webmd.com/chronic-fatigue-syndrome/news/20150227/immune-system-changes-tied-to-chronic-fatigue-syndrome
Immune System Changes and Chronic Fatigue Syndrome
phoenixrising.me/archives/26509
New era for ME/CFS research as top cytokine study attracts media headlines
ucanr.edu/sites/mgslo/newsletters/Gardening_Is_Good_Exercise27992.htm
Gardening Is Good Exercise!
http://www.mmh.org.tw/taitam/famme/famme050802.asp
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1. 感染(Infectious)
2. å…ç–«å•é¡Œ(Immunologic)
3. 神經系統å•é¡Œ(Nervous system)
4. 精神疾病(Psychiatric)
5. 肌肉系統å•é¡Œ(Muscular)
6. éŽæ•(Allergic)
Wow very interesting comments (the articles were great as well). I too grew up in the area and went to Woodside High School but moved away when I was 15. For the last several years, but particularly the last two years, I have been very ill with CFS, and there is no one in the PNW that I can find who is treating this – my PCP says he knows almost nothing about it and at least has given me stimulant medication so I can keep my job. Prayers to everyone with this stupid disease and bless you who are able to DO something about the funding and research.
Perhaps some basic process, such as protein translation, is perturbed in patients with ME/CFS. This would be consistent with elevated expression of EIF2B4, EIF4G1 in blood cells of patients with ME/CFS (http://jcp.bmj.com/content/58/8/826.short). If so, perhaps treatment with ISRIB (http://lens.elifesciences.org/05033/index.html) would be helpful.
Hi, I just stumbled across this insightful article on CFS. I was diagnosed with CFS about 20 years ago, and it always felt like an awful label, which may have well have been ‘the too hard basket’! I was lucky I found an Environmental Medicine Practitioner and responded well to treatment with intravenous Vit C, minerals and following a strict diet to rebuild the gut wall for ‘leaky gut’. My CFS also started after EBV and stress. It tool a long time to get better and it was a gradual and difficult process, of one step forward two steps back, and a relapse or two along the way. Later, I ended up with Anxiety and Depression following stressful life events, and although I was exhausted it was different to the heavy muscle aching and brain fog of CFS. I also ended up with a Thyroid nodule and am now on Thyroxine. I try to pace myself and enjoy walking but never got back into Cardio exercise. It scares me. Anyway, I didn’t plan on writing about me. I enjoyed reading the article and about the wonderful research and efforts of the Defoe family. My daughter has a rare blood cancer, Essential Thrombocythaemia, and I have been doing a lot of research online lately, and I haven’t actually read anything about CFS in a long time. I just wondered if Defoe’s family and doctors had looked at the chemicals and heavy metals in the photography processing, that he could have been exposed to, and may still be in his system. Perhaps it might help to investigate this. I hope he gets some quality of life back. It is awful and so sad for the family. I am so glad to read that there are people seriously researching CFS and I hope Whitney recovers.
Reading this month’s “Technology Review” got me thinking that perhaps microglia in the CNS are overproducing C1q, leading to synapse elimination in susceptible individuals exposed to a variety of immune triggers. If so, could this be assayed by spinal tap? Bill Barnes’ company (Annexon) apparently has a C1q inhibitor that might be helpful.
I am a Journalist of over 4 years that Infected was by HIV disease,this disease has over come my body system. My brain fog and memory loss and physical issues made me a vegetable for 4 years.
Few months ago i came across some testimonies on how Dr Molemen has been using his Herbal Medicine to treat and cure HIV, Some even testified of been cured from Lyme Disease and others infections, I have never heard of such before, due to the fact that i always had the believe that one day there is going to be a cure for this disease, i horridly copied the email address of Dr Molemen and i told him about my condition he told me not to worry that he was going to prepare some herbal medicine for me which he was going to send to me right here in my country, eventually after 5 days of communicating with Dr Molemen he sent me a package which i received and he gave me prescription on how i am to use them, after 2 weeks of taking Dr Molemen Medication i became to feel relief in my body and i told him about it, he said to me that i should go for check up in the hospital to know if actually his medicine has worked, i doubted it but i later went to the hospital to get tested and to my greatest surprise I am a MIRACLE and have recovered from the horror of human immunodeficiency virus,and am practicing Jounalism again. I applaud you and your efforts and stand ready to give others information about you and i hope they believe and work with you.
You can contact Dr Molemen on ( drmolemenspiritualtemple@gmail.com or ( dr.molemenspiritualtemple@yahoo.com).
“While doctors and researchers don’t know the exact cause of chronic fatigue …”
Here is the problem with the old name. This sentence should read “While doctors and researchers don’t know the exact cause of Chronic Fatigue Syndrome ….”
By shortening the name and placing it in lower case letters, you have helped muddle the picture of this disease and given people the impression that it is just tiredness.
“Chronic Fatigue Syndrome” is a diagnosis, like Rheumatoid Arthritis; “chronic fatigue” is a symptom, like “my joints hurt.”
Please edit the article and remove this careless and destructive mistake.
I’ve been reading headlines like this for the 20 years that I have been sick with CFS. I am resigned to dying with this illness, which has robbed me of my life anyway. I wish I had died 20 years ago instead of what I have experienced as a CFS victim. At least then I could have regretted leaving life. Now, I am looking foward to it. And PLEASE, don’t go emo and start looking for the suicide prevention folks, I am NOT suicidal, just being honest about the quality of my life.
P.S. These articles never mention that when you do feel well enough to do something, you may be doing it, but you still feel as if you have the flu. Takes the joy right out of it.
God bless Dr. Ogidi for his marvelous work in my life, I was diagnosed of LYME DISEASES since 2014 and I was taking my medications,i wasn’t satisfied and needed to get it out of my system, I searched about some possible cure for LYME and i saw a comment about a man call Dr.OGIDI of how he sent a cure medicine to a herpes patient through UPS and she was cured of LYMES with his herbal medicine. I contacted him and he told me that it will cost me $280 to prepare my medication, he started the remedy for me and sent me the Herbal medication through UPS speed post. I took the medicine as prescribed by him and Truelly i was totally cured within less than a Month, Dr. OGIDI truly you are great, do you need his help also? Why don’t you contact him through ogidiganherbalhome@gmail.com
I have suffered from ME/CFS for several years now. For the past four years I have been either bedridden or housebound. Sleep is the answer for me. The longer I sleep the better I feel the next day. Same thing with my dad, who had ME/CFS in his fifties, he slept almost non-stop for a year. He didn’t wake up except to eat a little and go to the bathroom. He is now 82 years old and says he feels great. It took him about 10 years to recover but he did and even went back know to work. He attributes his recovery to being able to sleep all that time. Having said that, I have been wondering if severely ill ME/CFS patients could be put in medically induced comas for a length of time to see if it would help them to recover. Our bodies heal naturally during sleep, so maybe being able to sleep a month or two, or even longer might help drastically. I pray someone finds an answer and soon. This is a horribly devastating disease that has ruined so many lives.
I would just like to point out that this article has had over 43,000 viewers, which is a lot for a Weekly story. People continue to find it and comment. That speaks to the depth of the problem. Unfortunately, I hear a lot of the same things being said that were said 20, 30 years ago. Things haven’t really changed. People are still arguing about names. People suffering still think anyone would do anything differently if they could only “see” they are sick (which is not true, unfortunately). People are still trying to treat CFS like it’s just one single problem that just needs some kind of new science. I think it’s time we all faced the fact that the existing medical paradigm does not do a good job with diseases that feature “chronic” anything, much less “fatigue”. Medical researchers know this in their hearts, too, if they’re being honest. Plus, there’s just plenty of research discussing the way chronic illness gets shorted in favor of crisis and acute medicine.
I think CFS should probably be called “Complex Fatigue Syndrome” – meaning, if each patient had the help to tease apart the complexity and address their individual circumstances, they could get better as many above posters describe. Whether it’s the segment of CFS sufferers (and it’s a signiicant portion) who have misdiagnosed Lyme disease or any of the many tick-borne variants that cause the same symptoms but will never test positive, or who have viruses and are otherwise rundown, or who have neurotoxins or other environmental exposures causing their symptoms — what helps one patient is almost certain not to be the answer for everyone.
It’s time medicine developed strategies rather than diagnoses for problems like these. People don’t want labels, they want to be taken seriously and regain their health.