“What terrifies me is that you can disappear because someone’s telling the wrong story about you.”
The quote above is taken from the closing lines of Jennifer Brea’s new documentary, “Unrest.” The film purports to be about the neurological disease Myalgic Encephalomyelitis and the experiences of those diagnosed with it. Unfortunately, far from helping those with M.E. overcome the invisibility forced upon us by this disease and its most common misconceptions, this film makes us more invisible than ever through reinforcing and teaching those same misconceptions as truth. What are these misconceptions? And why does it matter? Shouldn’t we just be glad the name of our disease is being heard? Read on to find answers to these and more questions. Read the postscript for a link to a post detailing my own personal experience as someone who was unfortunately recruited and filmed for this very documentary.
What misconceptions are furthered by Unrest?
To answer this, we must first define the disease Myalgic Encephalomyelitis – something Brea’s film fails to do. Let’s start with a quote from the current number one expert on this disease, Dr. Byron Hyde, who has dedicated his career to properly diagnosing and researching this disease. As part of the introduction to a paper released last May, Dr. Hyde has this to say about Myalgic Encephalomyelitis:
“Unfortunately, the majority of physicians in the UK, Europe and North America, not to mention the rest of the world, have a poor and sometimes distorted idea of what Myalgic Encephalomyelitis represents. One of the several fallacies is that M.E. is just another name for Chronic Fatigue Syndrome (CFS). It is not and never has been. M.E. is a biphasic epidemic and sporadic enteroviral infectious disease. Up to 1955 and the introduction of Jonas Salk’s polio immunization M.E. tended to occur in the same location and at the same time as polio epidemics…
CFS is a syndrome based upon a series of symptoms that are common to hundreds of different, often serious diseases and diagnostic of none. CFS can also represent multiple different pathologies or diseases in the same person.”
To clarify, Myalgic Encephalomyelitis is a sudden onset disease caused by an enterovirus and characterized by testable damage to the Central Nervous System. Common symptoms include heart problems, balance issues, seizures, severe digestive issues (sometimes leading to the inability to eat solid food), transient paralysis, cognitive issues, difficulty speaking or swallowing, severe pain, inability to adjust to different temperatures, inability to process or tolerate various stimuli including light, sound, and touch, and more. This is a testable disease. Myalgic Encephalomyelitis can be easily diagnosed using a specific series of tests. If the results of those tests come back normal, an individual does not have M.E.
On the flip side, Chronic Fatigue Syndrome, CFS for short, is not a specific disease. It is a diagnosis of exclusion made when an individual has persistent, severe fatigue that doctors have yet to explain. This can be fatigue of any type, with any number of underlying causes. While most CFS patients experience many symptoms in addition to their fatigue (symptoms vary depending on each person’s underlying condition), it is the fatigue alone which defines and qualifies someone for a CFS diagnosis.
Several doctors, including Dr. Hyde, routinely see CFS patients and, through persistent testing, correctly diagnose each one with their true underlying condition(s). Here is a quote from Dr. Hyde describing the current state of the CFS diagnosis:
“The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state. Where the one essential characteristic of M.E. is acquired Central Nervous System (CNS) dysfunction, that of CFS is primarily chronic fatigue. By assumption, this CFS fatigue can be acquired abruptly or gradually. Secondary symptoms and signs were then added to this primary fatigue anomaly. None of these secondary symptoms is individually essential for the definition and few are scientifically testable. Despite the list of signs and symptoms and test exclusions in these definitions, patients who conform to any of the CDC, Oxford, Australian and Canadian CFS definitions may still have an undiagnosed major illness, certain of which are potentially treatable. Although the authors of these definitions have repeatedly stated that they are defining a syndrome and not a specific disease, patient, physician, and insurer alike have tended to treat this syndrome as a specific disease or illness, with at times a potentially specific treatment and a specific outcome. This has resulted in much confusion, and many physicians are now diagnosing CFS as though it were a specific illness. They either refer the patient to pharmaceutical, psychiatric, psychological, or social treatment or simply say: ‘You have CFS and nothing can be done about it.’ The CFS definitions have another curiosity. If in any CFS patient, any major organ or system injury or disease is discovered, the patient is removed from the definition. The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears and the more problematic it becomes.” (emphasis mine)
Here’s another quote, taken from the Nightingale Definition of M.E.:
“In our experience the diagnosis of CFS only means the investigating physicians have not thoroughly investigated the patient. We routinely find in US, Canadian and European CFS patients diagnosed by physicians in their country, a variety of missed diseases. These include: toxic & chemical injuries, genetic injuries, cardio and cardio-vascular injuries, collagen diseases, adverse medication reaction, mitochondrial disease, adverse immunization caused illness, Ehlers-Danlos Syndrome, rarely MS, missed thyroid malignancy and thyroid diseases. CFS in general implies a serious missed disease. I have found up to 20 significant pathologies in a single CFS patient, none of them caught by any physician. Yet they are diagnosed as CFS.”
Unfortunately, the current trend for many doctors when a patient complains of fatigue is to run basic blood work, and if it comes back normal, tell the patient they have CFS and nothing can be done. This happens despite the fact that there are many, many conditions – some of which quite serious – which return normal blood work, especially at the basic levels many doctors test. As a result, the CFS community is comprised of individuals with every fatiguing condition under the sun. The truly sad part is that the majority of conditions frequently misdiagnosed as CFS actually do have some form of treatment available. Unless patients push past the CFS label to find their true diagnosis, they cannot benefit from the research and treatments already available for their conditions. Meanwhile, research dollars that should be spent on helping M.E. patients are instead spent running in circles researching everyone with any form of fatigue, all thrown together as though they had the same condition. Here is one final quote from the Nightingale Definition summary on the differences between ME and CFS:
“M.E. is not CFS: Fatigue was never a major diagnostic criterion of M.E. Fatigue, loss of stamina, failure to recover rapidly following exposure to normal physical or intellectual stressors occur in most if not all progressive terminal diseases and in a very large number of chronic non-progressive or slowly progressive diseases. Fatigue and loss of stamina are simply indications that there is something wrong. They cannot be seriously measured, are generally subjective and do not assist us with the diagnosis of M.E. or CFS or for that matter any disease process.”
What does this have to do with Jennifer Brea’s film?
“Unrest” fails to draw any distinction whatsoever between the distinct, testable neurological disease Myalgic Encephalomyelitis and the combination of misdiagnosed, fatigue producing conditions that is CFS. Consider the very first time the name of the disease this film claims to represent is mentioned in the film itself: a young woman is heard saying, “I have MECFS. That’s Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis is the term that I think you’re supposed to use now.” This statement is wrong in two primary ways: first, as mentioned, a diagnosis of M.E. is not and has never been the same as a diagnosis of CFS, and second, the diagnosis of M.E. actually existed long before the creation of the fatigue category CFS – M.E. is not some sort of new, more politically correct term for CFS, but a specific, testable disease whose name and classification were recognized and approved by the World Health Organization decades before the creation of Chronic Fatigue Syndrome.
Okay, but maybe that’s just one mistake. Maybe Brea clarifies the difference later. Right? Wrong. Consider that the second and third references to the condition the film represents are simply called “Chronic Fatigue Syndrome,” and the fourth is a doctor who refers to it as “Chronic Fatigue ME.” This total blurring of the lines continues as Brea covers some of the early history of M.E. outbreaks, only to attribute them to CFS, and as Dr. Nancy Klimas infers that her discovery of natural killer cell dysfunction in the CFS patients she treated is a defining feature of “ME/CFS,” despite the fact that CFS patients have a huge variety of true underlying conditions and therefore many do not have that particular issue. The very description of the film itself on websites where it is available to buy or stream often refers only to Chronic Fatigue Syndrome, with no mention of M.E. whatsoever.
Okay, so what’s the harm? Why is this a big deal?
To answer this, let me start with yet another quote from the film. This comes from a section in which a young woman is relating what her doctor told her when she sought answers after becoming ill. He said, “I have good news and bad news. The good news is I’ve figured out what you have and it’s Chronic Fatigue Syndrome. The bad news is there’s nothing we can do, and you’re gonna have to go home and wait it out. Wait for a cure.”
Ignoring the fact that, as already explained, CFS is not one distinct condition (so you cannot “have” CFS the way you might “have” cancer or Lyme Disease), this advice is dangerous, and certainly not in a patient’s best interests. I personally know one person who received a diagnosis of CFS and would have died had she settled for the advice her doctor gave her – advice identical to what the girl above received. Instead, my friend saw more doctors. She pushed for further testing and received a diagnosis just in time. She ended up needing a lifesaving operation, without which her doctors said she would have died. This is just one of many stories I’ve heard of patients who would have died had they simply accepted the non-answer of CFS as the end of the diagnostic line, but this one hit close to home because, as I said, it happened to a friend.
A diagnosis of CFS is the same thing as a doctor telling his or her patient, “I don’t know what’s causing your symptoms, and rather than keep looking I’m going to give you a label that says I don’t know what’s wrong and imply it’s a definitive diagnosis that can someday be cured.” Because the CFS community is comprised of patients with every illness under the sun, newly diagnosed individuals generally have no trouble finding others who relate to at least some of their symptoms. Many CFS patients band together and talk about raising funding and awareness for CFS research. But while many individuals find much needed support and understanding among fellow CFS patients, none of these individuals are benefitting from the research and treatments that in most cases already exist for their true underlying condition(s). They have been left by the medical world to suffer and many times worsen – sometimes even die – simply because doctors are under tremendous pressure to order as few tests as possible.
For a documentary to reinforce myths that result in putting people’s lives at risk is not okay. Ever. Far better to expose the rampant misuse of what was intended to be a temporary category for researching unexplained fatigue – that is, CFS – and encourage patients not to give up until they have a real answer to the question of what’s causing their symptoms.
Side note: I’ve often heard the argument that doctors in various countries aren’t allowed to diagnose M.E., only CFS. This is absolutely not true. The World Health Organization-approved ICD code for Myalgic Encephalomyelitis is G93.3, and it exists everywhere in the world, even in the US, which uses a different version of the ICD than most other countries. This code is in a completely different section than the one for CFS. Incidentally, the listings for both diagnoses include a type one exclusion for the other. A type one exclusion means “you can’t have this diagnosis if you have this other one instead.” This means doctors aren’t allowed to diagnose M.E. and CFS in the same person. It makes no sense to routinely combine and teach as being the same two diagnoses that aren’t even allowed to be diagnosed in the same person at the same time. That said, you *can* be properly diagnosed with Myalgic Encephalomyelitis anywhere in the world. The hardest part is finding a doctor willing to research and learn about this disease and then order the tests necessary to determine if a patient has it, but those doctors do exist, so if you think you might have M.E., keep looking! Moving on…
Shouldn’t we just be grateful? At least this film is getting the name Myalgic Encephalomyelitis out there.
I’ve heard this argument a lot. Since we know that Myalgic Encephalomyelitis is a distinct, testable condition – every bit as distinct as something like Lyme Disease and even more definitively diagnosable than Multiple Sclerosis – I tend to answer this question with one of my own.
Imagine someone claimed to have made a documentary about some other unique condition. Lyme Disease, Multiple Sclerosis, and Depression are all represented by significant portions of the CFS patient population, so let’s use one of those – M.S. So a woman advertises a new Multiple Sclerosis documentary. She has a large following and a lot of charisma, and a lot of people are anxiously awaiting the release of the film. However, when it comes out, the entire film refers to MS and CFS interchangeably. It refers to them as being the exact same diagnosis. The film even goes so far as to cover some of the history of MS and then attribute that history to CFS instead. This documentary showcases the lives of several people who seem like they might have MS, but it refers to them as having CFS instead and uses them as an example of the experience of CFS patients. The name Multiple Sclerosis is mentioned several times, but never as anything other than an alternative name for CFS.
Would this be okay? Would you support the film as just described? What would be your response to people who supported the film with the argument that “at least the name Multiple Sclerosis is mentioned,” or “at least it shows people suffering?” How about if the film claimed to be a documentary on cancer (and yes, cancer is among the list of conditions sometimes misdiagnosed as CFS)? Would you eagerly support the film, give it five star reviews, and share it with all of your friends? Or would you rise up with indignation on behalf of the cancer patient community for being so blatantly misrepresented?
If it’s not okay to do something like that to any other distinct medical condition, why is it okay to do it to M.E.? How does it help M.E. patients to be misrepresented in such a way? And how does it help CFS patients to be told their current diagnosis, literally defined as having “unexplained fatigue,” is somehow a distinct condition of its own and that it happens to be the same exact thing as a separate, testable neurological disease whose closest cousin is polio? Answer: it doesn’t.
This film helps no one. It harms everyone. And, worst of all, it makes the disease it claims to represent more invisible than ever. And that’s not okay.
Postscript: This has gotten rather long, so I’m going to publish my own experience of being recruited and filmed for this documentary in a separate post. If you’d like to read how Jen deceived me into agreeing to be in her film, why I’m not in it (but my husband is – briefly), and more, click here to read that account.
Also, I realize it has been a long time since I updated this site. The reason for that is that my health has been a bit wonky and I needed to save my energy for other things in life. I felt I had already published the most important facts about M.E. and linked to the best resources, and I didn’t want to waste energy creating a site that goes in circles. However, this film is a big enough event that I felt I should post again, especially since I also have some personal insights, shared at the link above. That said, I have been working on a more personal update post, which should be out in a week or so. Each new post takes me quite awhile to write and organize, so if this one has been published, the other should be almost ready to go, since I didn’t want to post anything new until a more general update was sure to happen soon after. All that to say, stay tuned for an update if you’re interested in what’s been happening since earlier posts.
Finally, I’ve put together a list of some of the best resources for information about Myalgic Encephalomyelitis. Check it out by clicking the link “More Info on M.E” near the top of the page, or click here for quick access.
Thank you for taking the time to read through this post. I deeply appreciate the time and energy it takes to do so. Please spread the word about Myalgic Encephalomyelitis, and please help counter some of the damage Unrest has done by educating others on the fact that M.E. is not, and never has been, the same thing as CFS.