Eight years ago, collapsed on a neurologist’s examining table, I asked a naive question that turned out to be at the center of a controversy continuing to this day. I had just received a diagnosis for the illness that had been gradually overtaking me for the previous six years, and I asked, “So what is chronic fatigue syndrome?”
A week earlier, I’d woken up suddenly barely able to walk. “Fatigue” hardly described what I felt: “Paralysis” was more like it. My legs seemed to have been amputated and replaced with tubes of liquid concrete, and just shifting them on the table made me grunt like an Olympic weightlifter. Not only that, my very bones hurt. Most disturbingly, my brain felt like a swollen mass. Speaking required tracking down and spearing each word individually as it scampered away from me. I felt as capable of writing an article about science – my job – as of slaughtering a rhino with my teeth.
My neurologist’s face was blank as he pronounced, “We don’t understand it very well.” He could recommend no tests, no treatments, no other doctors. I came to understand that for him, “chronic fatigue syndrome” meant “I can’t help you.” 
My neurologist’s understanding of the illness closely reflected that of most doctors, who typically believe two things about CFS: that it’s probably psychosomatic, and that there’s nothing doctors can do for these patients. Experts have known otherwise for decades. The result is that while patients don’t get the help they need, they often do get a helping of scorn.
The Department of Health and Human Services (HHS) has launched an effort to change these misperceptions, it says, arguing that the problem goes back to that very first question I asked: What is chronic fatigue syndrome? There are currently many competing definitions, and none of them has trickled down to doctors. So HHS has hired the Institute of Medicine, an affiliate of the National Academies, to develop yet another definition of the illness. The stated hope is that doctors will embrace a definition developed by such a prestigious institution and then learn about treatments.
But the CFS community of experts, advocates and patients has responded to this plan with a revolt. Fifty specialists in the illness (nearly all of them) wrote to HHS requesting cancellation of the contract, and hundreds of patient advocates and thousands of patients wrote in support of the experts. And unfortunately, this is just the latest in a long string of disputes between the federal agencies and the CFS community, disputes that have nearly derailed the central work of understanding a disease acknowledged by all to sometimes be as disabling as late-stage AIDS or heart failure.
At the time of my diagnosis, though, I was far too consumed with learning to cope to worry about the politics of CFS. A couple of weeks after my trip to the neurologist, I woke up feeling better enough to venture to the grocery store. By the time I put the bags in the car, though, I was quivering with exhaustion. That night I was too weak to turn over in bed. Overexertion, I realized, was my enemy, so I began a program of aggressive rest. Gradually, I got stronger and the limits lifted.
But over the next five years, I got worse again, then better, then worse. I consulted doctors, but when they couldn’t help much, I stopped. Each time I was stuck in bed, I scoured my activities, my diet, my environment, seeking a reason. Ultimately I concluded my illness might have been controlled by the Greek gods, creatures more irrational and capricious than the human mind can comprehend.
Then in 2011, I disintegrated. Day after day, I couldn’t get out of bed, couldn’t work, couldn’t even focus my eyes to read a novel. I flew across the country and staggered into the office of Dr. Nancy Klimas, an immunologist and CFS expert at the University of Miami. She smiled and said wryly, “Your legs aren’t working too well for you there! We should be able to get you feeling better.” I nearly cried.
She told me that although CFS didn’t yet have a cure, she and other researchers had discovered a lot about it. At that moment, many thought the retrovirus XMRV might be the cause, though she was growing skeptical and soon thereafter the theory was disproven. Regardless, she told me, she and her fellow researchers were certain the illness wasn’t psychosomatic. The physiological abnormalities in CFS patients were too consistent for that.
She soon confirmed those patterns in me: Some parts of my immune system barely functioned, while others were in overdrive. Several viruses had become reactivated in my body, causing mischief long after the initial infection was past. My heart couldn’t manage to pump enough blood to my brain when I stood up: After six minutes of standing still, my blood pressure fell to 80/52, my heart raced, and I begged to lie down lest I vomit or pass out.
One test I declined, the two-day exercise test. When CFS patients exercise to exhaustion two days in a row, their output plummets the second day though they work just as hard. In addition, their bodies flag at using oxygen, inflammation goes wild, and their very cells change, reading their genes differently. That pattern, called exercise intolerance, seems unique to CFS. The test can help prove disability and provide objective guidelines patients can use to regulate their activities, but it can also leave them even sicker for months.
Though Klimas couldn’t cure me, she helped. She gave me immune modulators so my immune system wouldn’t overrev as though I were fighting an eternal flu. She worked to improve my sleep. She prescribed beta blockers to steady my heart rate when I stood. The most effective treatment was astonishingly simple: Gatorade. Electrolytes increased my blood volume – typically a liter low in CFS patients – thereby stopping my blood pressure from dropping so dramatically. She also monitored me for cancers common in CFS patients, since our natural killer cells, the immune system’s designated cancer assassins, barely function.
I improved enough to work a little bit, and it was a tremendous relief to have a knowledgeable and compassionate doctor behind me. Still, Klimas (who also treats HIV/AIDS) says if she had to choose between having HIV and CFS, she’d unquestionably choose HIV. Two decades of well-funded research have made HIV a manageable chronic illness, while her CFS patients often remain disabled.
I was extremely fortunate to get such competent care. There are a dozen or two US specialists to treat the one million Americans with CFS, and most non-specialists are as hamstrung by lack of knowledge about the illness as the neurologist who diagnosed me. Somehow, doctors haven’t gotten the word that CFS is a physiological illness with physiological treatments that help. Once I grew so sick that the illness dominated my life, I couldn’t get the question out of my mind: Why?
Go to Part 2.
______________
Julie Rehmeyer is a math and science writer in Santa Fe, NM. She is a contributing editor for Discover Magazine and has written for Science News, Wired, Slate, Science, and other publications. She is working on a book about her experience with ME/CFS and the science and politics of confusing illnesses. She recently wrote about her father for Aeon.
The photos are stills from a movie about ME/CFS, called Canary in a Coal Mine, by Jennifer Brea, Deborah Hoffmann, Blake Ashman, and Kiran Chitanvis. The stills are captioned, in order, Jen After a Full Day of Shooting, and Jen’s Wall of Mysteries.
Hi Julie, good article and looking forward to reading hte next part. I feel so very tired and ill but wanted to make the effort to say thanks.
I appreciate you are doing a second part to this article. One reason is the multi-system dysfunctions have caused ME/CFS to fall through the cracks of the segmented specialist system. There is no specialists for illnesses that affect multiple body systems. If there were, then those specialists would be taught ME/CFS.
Thank you for the article Julie. I just tried contacting Dr. Klimas. She has a waiting list of over a year :(. I guess there is that many of us!
You were much more kind than I would have been. My answer to the question of “Why Are Doctors Skeptical & Unhelpful about Chronic Fatigue Syndrome?” is this: Because they are ignorant, arrogant fools who refuse to look at the mitochondria (the energy centers of the cells – you’d think that they’d be a reasonable thing to look at) and the damage that their precious pharmaceuticals are doing to mitochondria. They are the problem. But it’s easier to blame the patient when a doctor’s ego is at stake.
Hi Julie, I am glad you have found some relief from the hellish symptoms of your illness. The Gatorade is most interesting! I was diagnosed with ME – as defined by Melvin Ramsay – by a consultant neurologist in UK in early 1984 after 18 months of severe and worsening illness (post-Coxsackie virus). There had been an outbreak of Coxsackie b4 virus in the west of Scotland, at this time. The reason, certainly in the UK, that ME (or CFS) is met with scepticism is because of the involvement of a powerful core of psychiatrists – supported by blinkered health editors- who have distorted the narrative of a neuroimmune illness to suit their own agenda. The truth is as banal as that. The consequences of this truth are, however, devastating. Thirty years on from my own diagnosis I remain ill, though I describe myself these days as moderate with severe dips. I am grateful not to be permanently bedbound/housebound as some people with ME become. I wish you continued better health.
Hey, Just to add, I see you are working on a book about your experience of ME/CFS, you may be interested to know about my autobiographical novel which came out with HarperCollins/The Friday Project in UK in 2008, ‘The State of Me’. It is a fictionalisation of my own ME, spanning 1983 to 1998. Of course, some of the research/science has moved on since then, but the politics around the illness remain the same. I am off now to look at your Aeon article!
If Julie has piqued your interest in the science of ME(CFS), recognized as a neurological disease by WHO since 1969, the following summarize most of the science in the field.
1. The diagnostic and treatment guidelines known as the Canadian Consensus Criteria (CCC) (2003) is the guideline for Canada, Australia, and I believe New Zealand. It is used by most expert clinicians and many researchers. It includes the definition of ME(CFS) [pg 2,3] that Julie refers to the over 50 experts writing a letter to HHS to say use the CCC now; do not contract out to the non-expert IOM to attempt to do what the experts in the field have already done. And it summarizes and references all the key research to that date.
http://www.phac-aspc.gc.ca/dpg-eng.php#cfs.
2. The ME ICC (2011), the international update of the CCC that recommends using only the name ME, is already being used by some researchers and clinicians. It is not yet adopted by any countries that I know of.
http://www.investinme.org/InfoCentre%20Guidelines.htm#ICC
3. The updated IACFSME Primer (2014), which states that they use the CCC and starts to address severity and the use of exercise a bit better than the 2012 version, is on the US National Guidelines link and on the Canadian guidelines as well. The updated primer link is http://www.iacfsme.org/LinkClick.aspx?fileticket=zYEzLn11Ej0%3d&tabid=509
I don’t believe the guidlines.gov or Canadian links are updated yet.
http://www.guideline.gov/content.aspx?id=38316
4. Looking at the agendas of the 3 conferences this spring will give you an indication of the developments in research since then. There are numerous summaries of the first 2 already held conferences on the web.
a) 2014 Stanford ME/CFS Symposium, March 19
Advances in Clinical Care and Translational Research
http://chronicfatigue.stanford.edu/documents/ChronicFatigueSyndromeCME2014-FORMS-r3a.pdf
b) IACFSME Conference, March 20 -23
Translating Science into Clinical Care
http://www.iacfsme.org/Conferences/2014Conference/2014ProfessionalAgenda/tabid/535/Default.aspx
c) Invest in ME, May 30 (this group is also funding a Rituximab trial)
Synergising Research into ME
http://www.investinme.eu/agenda.html
5. And finally, if you are interested in how such a major disease severely affecting so many could still have so little research funding or accurate info disseminated by the CDC, Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Hillary Johnson is an excellent piece of journalism.
http://www.goodreads.com/book/show/2456255.Osler_s_Web
My CFS is “only” moderate – I’ve only had a handful of severe days like some of those you described above – but I, too, am very frustrated by the lack of help from the medical field. My concerns and questions were dismissed out of hand a few years back, and it took me until last year to get up the courage to try again. I believe the next specialist coming up to bat is a hematologist. My bloodwork is baffling to the rest of them.
I forgot to mention that the CCC clearly states that CBT (pg 10,11) and GET (pg 12) are inappropriate to harmful for ME(CFS) patients and should not be used.
you need to control stress and anxiety to recover. why with me/cfs do you get over run with adrenaline when you rest (or sleep). there is some sort of blockage to the neural pathways. and when you get tired some sort of neural flow is blocked and it feels like your head will expload. If you can remove stressors and relax. you should improve with time.
Just a quick note to other commenters: Please remember to be civil, even if you strongly disagree. Comments here are moderated, and I’m happy to have a variety of opinions, including ones I think are critically wrong, but I won’t let contemptuous posts (even if there’s good reason for the contempt) go up. I just don’t think it helps.
Julie, I am terribly afraid that your paragraphs above discussing the IOM will leave the science journalists thinking HHS is doing its best but the nasty old docs and patients are wreaking havoc and preventing the work getting done. Your shy “it says” doesn’t ameliorate enough. The fact is HHS is doing this and P2P to satisfy Anthony Fauci’s long-standing directive to get rid of M.E. .These sudden moves were provoked by researchers’ continuing successes that are coming ever so close to succeeding in making this look like a real disease. In other words, the baby is starting to show and IOM and P@P comprise a hasty sixth month abortion, before it’s too late.
Thank you, Julie. What an excellent article!
Thank you for this article. I have suffered from FM for over 10 years. Officially diagnosed 8 years ago. After suffering from 3 different viruses in a row recently, on exactly March 18th I thought that I had been hit by a train. On March 21st, I passed out while driving,lucky to have been on an isolated back road. I am feeling everything you have described….. I am almost paralyzed. I dropped 14 pounds in 2 weeks, and I am a small woman to begin with. Since my primary care has known me, I was diagnosed fairly quickly with CFS/ post viral syndrome. Last week I went to the ER at U PENN, one of the leading teaching hospitals because I fainted after standing a few times. They did nothing. I was put on a Gerny for 11 hours and given 1 bag of fluids. My doctor send me there because he was sure, that in my state I would be admitted. I was told ” off the record” by a junior resident that she had seen a few cases of “ME”…….. And there is nothing they can do. They sent me home in worse condition that I went in! Although I’m not new to FM, I’m new to ME and I feel totally hopeless and helpless. I have a son with so many questions that I don’t know how to answer. FM is dabitating, adding ME is like being trapped in a broken body waiting for your mind to go in a coma. As I am slowly being educated by wonderful people like you…… May be there is a glimmer of hope!
Hi, Julie. I am so sorry for your suffering. Your case seems quite severe, and I feel happy for you that you put yourself into the hands of Dr. Klimas. My daughter also, has the debilitating illness; however, she is still able to go to work at a very busy, responsible and stressful position. At the end of the day, she can do nothing else. She is drained. She finally was able to get an appointment at Dr. Klimas’ clinic. We don’t know if she will be seen by this doctor, or one of her assistants. The appointment is for next month (May) a couple of hours’ drive from the city in which we live.
I feel the need to ask you: Why do you refer to your illness as “CFS”? CFS isn’t really a disease; it is a combination of symptoms that cause the great abnormal exhaustion. We believe, as do most patients about which I’ve done extensive reading, that it is actually “M.E.” “Myalgic encephalomyelitis.”
Another thing I want to mention is that the IOM (Institute of Medicine) was given the charge to come up with a diagnosis criteria, not, as I and the experts believe, to come up with a definition, as you mention in your 5th paragraph. For some reason, unknown, the HHS doesn’t want to accept the CCC (Canadian Consensus Criteria). Was this just a mistake in your blog?
Thank you for coming forward with your illness in this very clear description of what a typical patient experiences who has the severe illness that I prefer to call “M.E.”
I’m so sorry to hear about your daughter. I’d call my case moderately severe — unfortunately, there are quite a few people a whole lot sicker than I was. I spent many years where your daughter is, able to function externally but totally tapped by it. I would encourage you to consider the possibility that mold is contributing to her issues. The location you live in is also important — some areas seem to have some kind of widespread contaminant that is very bad for people who are susceptible to mold. I got much sicker, for example, after I moved to Berkeley, which has a terrible reputation among moldies, and even now, I can’t spend any significant time there. The best information about mold online at this point is at paradigm change.me. Don’t rely on doctors to know about this, because very few do. It is well outside Dr. Klimas’s expertise, for example, though she has come to recognize that it’s sometimes important for ME patients.
I sometimes call the illness ME and sometimes call it CFS. If I had my druthers, I’d call it ME all the time, but people know the term CFS and they usually don’t know the term ME. I was very careful in the use of the terms in this piece, and once I had introduced the term ME, I used it when appropriate.
The criteria for diagnosis is what is meant by a clinical definition. There is a distinction between a research definition and a clinical definition, and the IOM is focusing on the clinical definition only. In some ways it’s not as harmful to have a broad clinical definition as to have a broad research definition, since for doctors, what’s critical is that they are able to diagnose everyone with the disease (even if they inadvertently throw in a few extra), whereas for researchers, what’s critical is that every single patient they study really has the disease (even if they inadvertently leave some out). But a VERY broad clinical definition is still extremely harmful, because it adds to the notion that the disease doesn’t really mean anything, that it’s a grab-bag of unrelated patients — as “CFS” pretty much is.
My best wishes to your daughter. I hope Dr. Klimas is able to help.
Thank you for taking the time to write this informative article. I wish I could see Dr. Klimas, but like many other CFS patients, I’m unable to travel. I do write about CFS for Psychology Today (among other subjects — many on chronic illness in general). My most popular piece is called “The Stigma of Chronic Fatigue Syndrome.” If anyone thinks it might be helpful, here is the link. At the bottom, you’ll see links to my other articles on CFS: http://www.psychologytoday.com/blog/turning-straw-gold/201104/the-stigma-chronic-fatigue-syndrome
Thanks for commenting, Toni. I highly recommend Toni’s books and articles to folks with ME/CFS and without. They are wise and realistic and down-to-earth and enjoyable.
Over a century after the neurologist Freud first resorted to the Talking Cure to treat impressive neurologic diseases with no clear aetiology beyond the mind-body interface, and was villified, we are still in denial about the power of psychogenic illness. Chronic Regional Pain Syndrome, Conversion Syndromes, Catatonia, and Melancholic Depression. CFS is like an old friend who never goes away but nobody wants to call by their proper name.
I am a survivor of the 1985 Lake Tahoe “Raggedy Ann Disease” who was the first speaker in the documentary trailer for the upcoming “What About ME” feature movie.
“It started as a rumor out of Truckee. A flu like illness… where people weren’t getting better. In fact, some were getting WORSE”
The What About ME film makers placed me before Dr Peterson because I am one of the earliest observers, who became aware of the outbreak before he and Dr Cheney were. As a survivor of this incident, I know exactly how and why the new syndrome of “CFS” was created, and explained the peculiar circumstances to them.
I am informed that the film is now in final edit.
When the “What About ME” documentary is released, confusion about CFS will be removed.
look up endocannabinoids
Dear Julie,
Thank you for your article and for describing accurately what CFS feels like from the patient’s point of view. I’ve forwarded your article to several people. A quick question, what are the cancers associated with CFS? Although I’ve had this for 18 years, my specialist has never mentioned this. Thanks for your help.
My understanding is that one’s risk of pretty much all cancers is raised, because natural killer cell function is typically so low. But lymphomas are especially common in ME/CFS patients. Klimas recommended to me to be generally more vigilant about checking for cancer than the typical person. So, for example, I had a colonoscopy at a younger age than usual, especially because there’s a history of it in my family.
An interview with Julie about how she became “nearly recovered” from ME/CFS via mold avoidance and detoxification.
http://www.cortjohnson.org/blog/2014/05/02/constant-vigilance-julie-rehmeyers-mecfs-recovery-story/
Neurologist Houston – DR Randolph W. Evans, M.D.
ROLE OF NEUROLOGISTS
Neurologist are principal care providers or consultants to other physicians. When a patient has a neurological disorder that requires frequent care, a neurologist is often the principal care provider. Patients with disorders such as Parkinson’s disease, Alzheimer’s disease or multiple sclerosis may use a neurologist as their principal care physician.
Neurologists can recommend surgical treatment, but do not perform surgery. When treatment includes surgery, neurologists will monitor surgically treated patients and supervise their continuing treatment. Neurosurgeons are medical doctors who specialize in performing surgical treatments of the brain or nervous system.