Tag Archive | systemic exertion intolerance disease

Unrest – A Devastating Documentary On Myalgic Encephalomyelitis

“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. 

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Unrest – A Personal Perspective

Some of my more devoted readers and friends may know that I was contacted quite awhile ago by Jennifer Brea, the woman behind the recently released documentary “Unrest,” about being in her film. If you haven’t read my more general review of this film and how it harms the very people it claims to represent, I highly suggest reading that post by clicking here before you go any further in this one. This is a personal recounting of my experiences with Jen and her film. I feel I have a bit of a unique perspective on this particular documentary, and that the community in general might benefit from knowing it. That said, here goes.

In July of 2014, I received a direct message on Twitter from Jennifer Brea. She’d heard some of my story, including the fact that I was receiving hospice care, and wondered if I might allow her to document that story in her film. Having noticed some of the early promotional materials she’d published using the terms ME and CFS interchangeably, I understandably had some concerns (if you don’t yet know how ME and CFS are two completely different diagnoses and why the terms should never be used together, please see this post on the subject). I expressed these concerns to Jen, who suggested a Skype conversation to go over them. She and I talked for quite awhile. 

Throughout our entire conversation, Jen assured me her views lined up with my own. She promised me that she understood ME and CFS as two entirely different entities that should not be combined or confused. She claimed to understand ME as a distinct, testable neurological disease, and CFS as representing a patient group with vastly varied fatigue-producing conditions. Jen explained that her views had been misrepresented in many of the early articles promoting the film, and that she had very little control over how the authors chose to write their articles. 

Jen promised me repeatedly in our initial Skype conversation, in followup emails, and later face to face, that her documentary would draw a clear line between ME and CFS. I explained repeatedly how important this was to me, and how I could not in good conscience support or be a part of any project confusing the two diagnoses. Jen told me she understood, and not to worry – my views were also her own, and her documentary would make them clear.

Having received these assurances, I agreed to participate in the film. At this time, I had received some concerning test results, and had been told the likelihood was high that I would die very soon – possibly within weeks. Understandably, Jen wanted this in her film. It would lend gravity to the topic at hand. She even asked, as politely as possible, if her team might be allowed to film at the funeral. This was understandably a difficult time for my family, but I wanted to do everything possible to help spread the facts about this disease. Jen had convinced me her film would be the first to truly do that, so I talked to my family and we agreed to give the film crew full access to whatever they wanted. 

In the documentary, Jen seems to imply that she did all of the interviews with other ME patients from her bed. She has given talks where a lot of emphasis was placed on the need to be creative due to Jen’s inability to interview people in person. Earlier today, Jen wrote a tweet that seems to indicate this is indeed the picture she’d like people to see. The tweet reads, “If I had not been bedridden when we were shooting the film, I may have been able to find more people through travel but I’m not sure that is the case.” In reality, while Jen was occasionally bedridden due to the exertion of making the film, she did travel for some of her interviews. 

In my case, Jen, Omar, and their film crew flew to my little Midwest town to interview me. They also interviewed my husband, my mom, my brother, an aunt and uncle who are often involved in my care, and even my doctor (whom Jen loved). During the interviews, my family and I shared our stories, bared our souls, and answered many questions. As part of those answers, all of us talked repeatedly about the differences between ME and CFS and how combining the two harms everyone. Jen never stopped us or implied in any way that she disagreed, much less that her film would reaffirm the very misconceptions we spoke out against. She simply kept filming, knowing how strongly each of us felt about this issue.

Skip forward several months. My health had stabilized a bit – I was, and am, still considered terminal, but the timeline was more up in the air again. I began to feel concerned about the various posts and interviews I’d seen Jen create. She routinely used the term “ME/CFS” and nearly always modified the term Myalgic Encephalomyelitis by adding something like, “better known as CFS” after it. In one post where someone questioned her on this issue, she actually said she felt people should be free to use whatever label they self-identify with most – a concept that would horrify anyone familiar with how medical conditions are diagnosed.

Eventually I contacted Jen to express my concerns, and to find out if she still planned on using my footage in her film. I had become extremely nervous that my story might be used to support a film that, far from helping people with this disease, would hurt us all. Jen wrote back to let me know she no longer planned to use my footage in the film, but might use it in later projects. She said she wanted to diversify the appearance of her film in terms of the people shown and their gender, location, and ethnicity in order to appeal to a broader audience. I replied to tell her I was not only okay with not being in the film, but relieved, as I did not feel okay supporting an “ME/CFS” film.

Skip forward to the film’s release. As promised, I am nowhere to be seen in the documentary. My husband, however, does appear. It’s only for about half a second 23 minutes in, but for some reason Jen chose to show a close up of my husband’s face. My husband is Asian, which brought to mind Jen’s talk of “diversifying” the appearance of her film. Maybe Jen chose to show his face because he’s Asian, and maybe not. Either way, she knew long before she began piecing together the final film that my husband and I no longer supported this project. The fact that Jen would use my husband’s appearance but none of his words in a film purporting to be about the disease he has dedicated his life to dealing with in his wife, one she knew he was strongly against and felt did his wife and others like me a lot of harm, doesn’t sit quite right with me. But all of this is relatively minor in comparison to the overall picture.

People who know what happened have asked me if I think Jen genuinely changed her views on this disease since she began filming, or if I think she lied to get me to agree to participate in her documentary. I’ve given it a lot of thought, and while I can’t say for certain, I believe the evidence leans heavily towards Jen intentionally deceiving me. The reason I say this is that even before she’d heard my story, Jen had a habit of combining the terms ME and CFS in nearly everything she did. That’s the reason I had such strong concerns in the first place. But anyone who’s met Jen will tell you she’s extremely charismatic. She’s the type of person who’s easy to like. The type you just want to trust. And we really bonded – she even talked at one point about how we felt like sisters or twins rather than just friends. 

Maybe I was naive to believe Jen when she told me she agreed with everything I shared with her on ME and CFS and felt as strongly about the issue of separating the terms as I did. Jen knew I’d never agree to participate in a documentary that used these terms incorrectly. She also believed (as did my entire medical team) that I would die before filming was completed. I believe she lied to me to get me to agree to be in her film so she could use my death to give added power to her narrative. And after I was gone, well, I wouldn’t be around to complain, and she had my permission both in writing and verbally recorded on camera stating she could use the footage she shot in any of her projects. I’m pretty sure that kind of behavior is despicable in anyone’s book. But it happened.

Words can’t express how incredibly grateful I am to have remained alive long enough for Jen to decide against using my story in her film. I feel like just that one act of helping make this documentary more powerful would have undone every bit of hard work I’ve put into spreading the facts about this disease. The very thought of it gives me chills – this was far too close a call. Technically, Jen still owns the footage she took of me and my family. She could still use it in a future project, and may be tempted to try to do so once my journey comes to an end. I hope she doesn’t, but if she does, don’t be fooled – I do not, I repeat, do not support the film “Unrest,” nor would I ever support any project that erroneously combines the terms ME and CFS. I feel very strongly that doing so hurts not only ME patients, but also CFS patients, and I’m not okay with that.

I felt I should share my story here as relates to this film because I’ve had people ask me what happened to me being part of the film, and also because I have a bit of a unique perspective. I also feel that since I once posted here about my involvement with this film, lending my support to the project, it’s only right I post an update clarifying that this support no longer exists (the original supportive post has been deleted, for obvious reasons). 

That said, my personal story is not what matters. It has absolutely nothing to do with why I am against this and any other film which erroneously combines the terms ME and CFS. Anyone who reads my earlier, pre-documentary posts on this blog will see my passion for getting the facts straight on this issue and for working towards a day when every single person with any health condition gets properly diagnosed. And that’s the important thing. Every person deserves a proper diagnosis. Nobody should be dumped in a general “fatigue” category, left there, and told that category is the same thing as a different, distinct disease process. And nobody living with a distinct disease should see all of the desperately needed advocacy and research dollars for their condition spent on things entirely unrelated to that disease. What hope is there for anyone if both these things continue?

Please help us spread the word about what ME is, as well as what it isn’t. With a film like Unrest spreading harmful misinformation with astonishing efficiency and speed, every voice counts. Whether you shout the truth or write it or merely whisper it – every voice counts. Thank you.

ME vs CFS – What’s Up With The Name War?

(Note: The following is an excerpt from my longer post, “Pyrexic Disease (or, Why The Creation of SEID Should Concern Us All),” written soon after the release of the recent IOM report. That said, I felt the analogy/explanation below deserved to be in its own post, separate from the SEID/IOM debate, so that people interested in more general ME and CFS topics can easily access it. If you are interested in my interpretation of the IOM report and how it will affect us, feel free to click the article’s name at the start of this paragraph. Otherwise, enjoy the post, and please feel free to share with as many people as possible! Thank you!)

When CFS was initially created in 1988, it was done “to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause.” This is a direct quote from the release paper as archived on Pubmed. The fact that CFS was never intended to be viewed as a distinct disease of its own has been lost on most of the individuals diagnosed with it today. Patients (and many doctors) have taken a definition designed to create a category for researching unexplained fatigue and turned it into its own disease, demanding funds to research a cure and completely ignoring the fact that the group of patients diagnosed with CFS do not have a single disease entity, but a mashup of every fatigue producing illness under the sun. The following is an analogy that I hope will clarify the situation we are in and inspire both those diagnosed with ME and those living with a diagnosis of CFS to fight together for appropriate change.

When I first became ill, one of my symptoms was a constant, low grade fever. Because my doctors weren’t sure what was causing it, they wrote in my file that I had a “fever of unknown origin.” This wording is very similar to that found in the official description of CFS where it says it is for people with “chronic fatigue of undetermined cause.” Imagine if, instead of continuing to seek the true cause of my fever, my doctors and I had settled for the label of “fever of unknown origin.” Imagine that this became the norm any time anybody visited their doctor with a fever. Soon, insurance companies begin to realize the money they can save on expensive tests by convincing doctors and patients to not bother searching for the cause of each person’s fever. At the same time, doctors realize they can save valuable time and thus see more patients if they simply label everybody with an abnormally high temperature as having “fever of unknown origin.” Pretty soon, people with this diagnosis begin talking to each other. They’re ill, and because they all have a fever, some of their symptoms (such as chills and muscle aching) are almost universal among this patient group. They begin talking as though they all have the same condition. Several decades go by, and now nearly everybody – some doctors included – are treating “fever of unknown origin” as its own distinct disease.

But there’s a problem. Just before it became commonplace to immediately diagnose anyone with a fever as having “fever of unknown origin,” an outbreak of Polio hit the US. Initially, some of the doctors and researchers who knew better insisted that what a portion of these people had was Polio, but over time more and more Polio patients were simply labeled with “fever of unknown origin” and sent on their way. Because of the (correct) protestations and education attempts of Polio experts, many people began to associate the term “fever of unknown origin” with Polio. Now, decades later, the two are nearly always thrown together, and Polio as a distinct disease has been all but forgotten. Patients who come down with Polio are almost never diagnosed with it. Instead, they’re thrown together with everybody else who has a fever of any type, both in research and in day to day conversations and media articles. Because the two terms are frequently heard together, many people insist they are the same thing. Patients diagnosed with “fever of unknown origin” often prefer to say they have Polio, simply because the name sounds better and they believe them to be the same condition. Some people get very ill and die for lack of treatment, but because the majority of people diagnosed with “fever of unknown origin” don’t die of their condition, the ones that do tend to be seen as unfortunate, infrequent cases (though their stories are often used to raise funds to research “fever of unknown origin” patients – despite the fact that results are highly inconsistent due to having too many patient groups thrown together).

One day, the government decides to spend a million dollars to convene a panel to reassess “fever of unknown origin / Polio” and decide if a new name and criteria are needed. This panel considers using the name Polio, but because there is no evidence of classic, old fashioned Polio in the vast majority of “fever of unknown origin” patients, they reject the name as being unscientific. Instead, they decide to rename this diagnosis to “Pyrexic Disease.” Patients are thrilled. They feel the new name lends a sense of legitimacy to their (very real) suffering. Also, the continued lumping together of everybody with a fever saves insurance companies money. It also saves time in busy doctors’ schedules, while simplifying their jobs overall and keeping patients happier. Nobody gets accurately diagnosed with any of the true causes of fever anymore, but nobody seems to care. And Polio has all but disappeared as a distinct diagnosis.

It’s hard to imagine this happening, isn’t it? But this is exactly what has happened and is happening with Myalgic Encephalomyelitis (represented by Polio in this story) and Chronic Fatige Syndrome (represented by “fever of unknown origin”). The government is now attempting to rename so-called ME/CFS as Systemic Exertion Intolerance Disease (“Pyrexic Disease” above). And many people are happy with this. But ME isn’t CFS any more than Polio is equivalent to a fever of unknown origin. ME is a distinct neurological disease, with fairly well understood underlying pathology. It can be diagnosed with a high degree of accuracy using a specific series of medical tests. And it has a long standing history of its own, starting long before the fatigue category CFS was created. CFS, by definition, has always been a diagnosis of exclusion, a placeholder category for patients with “chronic fatige of undetermined cause.”

By treating CFS as its own distinct illness, the powers that be keep people from getting an accurate picture of what’s happening in their bodies through correct diagnosis. By settling for CFS as a final answer, patients are unable to benefit from the research and treatments available for their own, specific condition (conditions frequently misdiagnosed as CFS include Multiple Sclerosis, Lyme Disease, certain types of cancer, Major Depression, and more – most of which are clearly diagnosable with appropriate tests and have their own specific research and treatments available). By combining the category of CFS with the neurological disease ME, we risk burying a very serious disease underneath a larger majority of patients who do not have the condition. Not only does this cause unnecessary, severe suffering, it also kills. People on both sides of this issue are dying – those with ME who fail to get the early diagnosis and treatment so essential to give them their best chance at a decent life, and also those MISdiagnosed with CFS, some of whom have potentially deadly conditions of their own.

So before you jump on the bandwagon and decide that this is just a silly name war, consider the implications. Consider the fact that it is in everyone’s best interests for each person to get properly diagnosed. And consider the fact that the only way this can happen is to get rid of the falsely used category diagnosis of Chronic Fatigue Syndrome / SEID, consistently recognize and correctly diagnose Myalgic Encephalomyelitis as the distinct neurological illness it is (characterized by Central Nervous System dysfunction and a unique, testable type of muscle response to exertion), and ensure that those who don’t have the disease ME get properly diagnosed with whatever is going on in their bodies.

One last note: You may think this has nothing to do with you. You may be living a fairly healthy life. But consider the last time you felt fatigued in any way (whether it was generalized physical, cellular, mental, emotional, or some other form of fatigue). Consider the chances that at some point you will feel that way again. There’s a good chance if things continue down the path they are now your illness, whatever it may be, will not be properly diagnosed. Instead, you will be given a diagnosis of CFS/SEID and thrown in together with millions of people who don’t even have the same condition. This does apply to you. It applies to us all. Please help us spread the truth. Thank you.

Pyrexic Disease (or, Why The Creation of SEID Should Concern Us All)

Since the recent release of the Institue of Medicine’s report recommending the creation of a disease called Systemic Exertion Intolerance Disease, there has been a lot of confusion over what exactly the report says, and whether it is a good thing for patients. Some are claiming the report itself is about something called “ME/CFS” and not ME, and therefore doesn’t apply to ME at all (if you’re confused about the distinct differences between ME and CFS, please read this post). These people tend to see the report as a good thing. Others see the report as further muddying the waters and creating yet another diagnosis where people with varying diagnoses will be thrown together inappropriately. Even the committee members themselves, who claim to have unanimously approved the report’s contents, give varying answers on whether the report concerns ME patients or not. And while some (not all) of these committee members have said they aren’t aware of anything in the report which would keep ME patients from being diagnosed with ME, I believe it is what the report itself says that matters, not what uncertain and horribly inconsistent committee members say after the fact. The report is what the HHS and others will base their decisions on, and the report is what we need to understand if we are to fight for what we believe is right.

After reading the report myself, it is my unwavering opinion that the report does, in fact, intend to replace *both* ME and CFS with the new diagnosis of SEID. There is a lot that goes into my seeing it this way, but here are a few key quotes from the report that back this up:

“Over a period of decades, clinicians and researchers developed separate case definitions and diagnostic criteria for ME and CFS, although the terms denote conditions with similar symptoms. The literature analysis conducted in support of this study took into consideration the variability in the definitions used in the studies reviewed. For the purposes of this report, the umbrella term “ME/CFS” is used to refer to both conditions.” – IOM report, page 1 (emphasis mine)

This quote, taken from the very beginning of the report, clearly recognizes that ME and CFS are distinct diagnostic entities. It also clearly explains what the term “ME/CFS” as used in the rest of the report refers to – that is, both ME and CFS. Not CFS alone, not some new disease creation called “ME/CFS,” but ME *and* CFS, with their recognized differences. On to quote number two:

“Historically, however, the diagnostic criteria for ME have required the presence of specific or different symptoms from those required by the diagnostic criteria for CFS; thus, a diagnosis of CFS is not equivalent to a diagnosis of ME.” – IOM report, page 60

Again, the committee is showing that they do understand and believe that ME and CFS are different, distinct entities. Some people are taking this quote to mean that the committee and this report were not referring to ME as distinct from CFS. That is not what it says, and that interpretation is directly counter to the first quote I shared, which again, was on page one of the report and sets the stage for everything that follows. From these two quotes, it is clear that 1) The committee recognizes that ME and CFS are two distinct entities, and that a diagnosis of CFS is not the same as a diagnosis of ME, and 2) Whenever the term “ME/CFS” is used in the report, it refers to *both* distinct conditions.

Side note: Some people believe that the inclusion of “Post Exertional Malaise” in the SEID criteria will ensure only people with true, classic ME (or at least people suffering from just one condition) will get diagnosed with this. This is based on a partial understanding of what ME is, along with partial ignorance of what PEM actually means. Does post exertional malaise exist in ME? Yes. Is it unique to ME? By no means! PEM simply refers to a general feeling of malaise or worsening of symptoms after exertion. *Many* conditions include this in their list of symptoms. Even the IOM recognizes this in its report (pages 80-81) when it mentions that studies that compared “ME/CFS” with other diseases found PEM was experienced by 19-20% of subjects with major depressive disorder and 52% of patients with multiple sclerosis. I would add that PEM is also found in other diseases, from Parkinson’s to Lyme to AIDS and more. So PEM in and of itself is nowhere near unique to ME. What *is* unique is a specific, testable type of muscle response to exertion. In practice this type of muscle response plays out as burning muscles that can quickly become paralyzed with continued use, often in response to what should be trivial exertion (such as typing on a keyboard or brushing one’s teeth). The inclusion of the broader term PEM will not diagnose any distinct illness group, but will continue allowing the inclusion of a long list of illnesses being misdiagnosed as SEID.

Moving on, here’s quote number three:

“The committee recommends that this disorder be renamed ‘systemic exertion intolerance disease’ (SEID). SEID should replace myalgic encephalomyelitis/chronic fatigue syndrome for patients who meet the criteria set forth in this report.” -IOM report, Page 11 (again, emphasis mine)

This is the clincher, in my opinion. This is not only a quote from the report, it is the IOM’s official recommendation number four, set forth in its own little box and bolded in the report itself. Combine this with the evidence above, and I can’t see any interpretation other than that the official recommendation of the IOM committee is for SEID to “replace” both ME and CFS diagnoses in patients who meet SEID criteria. This is a horrible, catastrophic recommendation that will ultimately harm hundreds of thousands of people, but just because it’s horrible and shows a lack of understanding of the ramifications doesn’t make it untrue as far as being the correct interpretation of the report. Just because we don’t want it to be true doesn’t mean it isn’t.

I thought about making the next part of this post into a separate blog entry, but it is so important that people who read the above also read what is below that I decided to put them together as one post. If you need to take a break, now is a good time to do so, but *please* come back and read what I’ve written below, because the facts need to get out there. Now, more than ever, we must make sure everyone understands the truth so that we can fight for it, and for what each of us deserve.

When CFS was initially created in 1988, it was done “to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause.” This is a direct quote from the release paper as archived on Pubmed. The fact that CFS was never intended to be viewed as a distinct disease of its own has been lost on most of the individuals diagnosed with it today. Patients (and many doctors) have taken a definition designed to create a category for researching unexplained fatigue and turned it into its own disease, demanding funds to research a cure and completely ignoring the fact that the group of patients diagnosed with CFS do not have a single disease entity, but a mashup of every fatigue producing illness under the sun. The following is an analogy that I hope will clarify the situation we are in and inspire both those diagnosed with ME and those living with a diagnosis of CFS to fight together for appropriate change.

When I first became ill, one of my symptoms was a constant, low grade fever. Because my doctors weren’t sure what was causing it, they wrote in my file that I had a “fever of unknown origin.” This wording is very similar to that found in the official description of CFS where it says it is for people with “chronic fatigue of undetermined cause.” Imagine if, instead of continuing to seek the true cause of my fever, my doctors and I had settled for the label of “fever of unknown origin.” Imagine that this became the norm any time anybody visited their doctor with a fever. Soon, insurance companies begin to realize the money they can save on expensive tests by convincing doctors and patients to not bother searching for the cause of each person’s fever. At the same time, doctors realize they can save valuable time and thus see more patients if they simply label everybody with an abnormally high temperature as having “fever of unknown origin.” Pretty soon, people with this diagnosis begin talking to each other. They’re ill, and because they all have a fever, some of their symptoms (such as chills and muscle aching) are almost universal among this patient group. They begin talking as though they all have the same condition. Several decades go by, and now nearly everybody – some doctors included – are treating “fever of unknown origin” as its own distinct disease.

But there’s a problem. Just before it became commonplace to immediately diagnose anyone with a fever as having “fever of unknown origin,” an outbreak of Polio hit the US. Initially, some of the doctors and researchers who knew better insisted that what a portion of these people had was Polio, but over time more and more Polio patients were simply labeled with “fever of unknown origin” and sent on their way. Because of the (correct) protestations and education attempts of Polio experts, many people began to associate the term “fever of unknown origin” with Polio. Now, decades later, the two are nearly always thrown together, and Polio as a distinct disease has been all but forgotten. Patients who come down with Polio are almost never diagnosed with it. Instead, they’re thrown together with everybody else who has a fever of any type, both in research and in day to day conversations and media articles. Because the two terms are frequently heard together, many people insist they are the same thing. Patients diagnosed with “fever of unknown origin” often prefer to say they have Polio, simply because the name sounds better and they believe them to be the same condition. Some people get very ill and die for lack of treatment, but because the majority of people diagnosed with “fever of unknown origin” don’t die of their condition, the ones that do tend to be seen as unfortunate, infrequent cases (though their stories are often used to raise funds to research “fever of unknown origin” patients – despite the fact that results are highly inconsistent due to having too many patient groups thrown together).

One day, the government decides to spend a million dollars to convene a panel to reassess “fever of unknown origin / Polio” and decide if a new name and criteria are needed. This panel considers using the name Polio, but because there is no evidence of classic, old fashioned Polio in the vast majority of “fever of unknown origin” patients, they reject the name as being unscientific. Instead, they decide to rename this diagnosis to “Pyrexic Disease.” Patients are thrilled. They feel the new name lends a sense of legitimacy to their (very real) suffering. Also, the continued lumping together of everybody with a fever saves insurance companies money. It also saves time in busy doctors’ schedules, while simplifying their jobs overall and keeping patients happier. Nobody gets accurately diagnosed with any of the true causes of fever anymore, but nobody seems to care. And Polio has all but disappeared as a distinct diagnosis.

It’s hard to imagine this happening, isn’t it? But this is exactly what has happened and is happening with Myalgic Encephalomyelitis (represented by Polio in this story) and Chronic Fatige Syndrome (represented by “fever of unknown origin”). The government is now attempting to rename so-called ME/CFS as Systemic Exertion Intolerance Disease (“Pyrexic Disease” above). And many people are happy with this. But ME isn’t CFS any more than Polio is equivalent to a fever of unknown origin. ME is a distinct neurological disease, with fairly well understood underlying pathology. It can be diagnosed with a high degree of accuracy using a specific series of medical tests. And it has a long standing history of its own, starting long before the fatigue category CFS was created. CFS, by definition, has always been a diagnosis of exclusion, a placeholder category for patients with “chronic fatige of undetermined cause.”

By treating CFS as its own distinct illness, the powers that be keep people from getting an accurate picture of what’s happening in their bodies through correct diagnosis. By settling for CFS as a final answer, patients are unable to benefit from the research and treatments available for their own, specific condition (conditions frequently misdiagnosed as CFS include Multiple Sclerosis, Lyme Disease, certain types of cancer, Major Depression, and more – most of which are clearly diagnosable with appropriate tests and have their own specific research and treatments available). By combining the category of CFS with the neurological disease ME, we risk burying a very serious disease underneath a larger majority of patients who do not have the condition. Not only does this cause unnecessary, severe suffering, it also kills. People on both sides of this issue are dying – those with ME who fail to get the early diagnosis and treatment so essential to give them their best chance at a decent life, and also those MISdiagnosed with CFS, some of whom have potentially deadly conditions of their own.

So before you jump on the bandwagon and decide that this is just a silly name war, consider the implications. Consider the fact that it is in everyone’s best interests for each person to get properly diagnosed. And consider the fact that the only way this can happen is to get rid of the falsely used category diagnosis of Chronic Fatigue Syndrome / SEID, consistently recognize and correctly diagnose Myalgic Encephalomyelitis as the distinct neurological illness it is (characterized by Central Nervous System dysfunction and a unique, testable type of muscle response to exertion), and ensure that those who don’t have the disease ME get properly diagnosed with whatever is going on in their bodies.

One last note: You may think this has nothing to do with you. You may be living a fairly healthy life. But consider the last time you felt fatigued in any way (whether it was generalized physical, cellular, mental, emotional, or some other form of fatigue). Consider the chances that at some point you will feel that way again. There’s a good chance if things continue down the path they are now your illness, whatever it may be, will not be properly diagnosed. Instead, you will be given a diagnosis of CFS/SEID and thrown in together with millions of people who don’t even have the same condition. This does apply to you. It applies to us all. Please help us spread the truth. Thank you.