When the National Academy of Medicine (NAM, formerly the Institute of Medicine/IOM) released its recommendations for Systemic Exertion Intolerance Disease (SEID) as a replacement for “ME/CFS,” I saw a lot of people spreading this myth: That “post exertional malaise” (PEM) is what differentiates myalgic encephalomyelitis (M.E.) from other illnesses. This is not true, nor is this what’s explained in the NAM’s report. At most, the report says that the presence of PEM helps distinguish it from other conditions, while it is what best distinguishes “ME/CFS” from idiopathic chronic fatigue. PEM alone is not specific to M.E., Chronic fatigue syndrome (CFS), or SEID, just like unrefreshing sleep is not specific to any one disease. Continue reading “The Parts of ME: Does “Post Exertional Malaise (PEM)” exist in other diseases?”
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Today is International Awareness Day for Chronic Immunological and Neurological Diseases. Feel free to share this page or download the graphic and share it on social media with friends, family, and your circles. Like most diseases, people never hear of this one until it happens to them or someone they love, but facts about classic M.E. have effectively been buried beneath 30 years of misinformation. Many have lived with these diagnoses for years and never heard any of this before! It doesn’t have to be like this.
I’m hoping people diagnosed with CFS (or diagnosed with “ME” but by using CFS criteria, which happens often in places like the UK) will read this, think twice about how exactly they got their diagnosis, and begin looking for the real cause of their symptoms with a doctor’s help. Or, if they do unfortunately meet the criteria for M.E., they will learn what they’re really up against, how to manage this disease appropriately, and might even be able to find specialists to help with specific symptoms. Learning that you have the real M.E. also gives you the opportunity to slow disease progression with things like mitochondrial support, immunoglobulin replacement therapy, treatment for secondary infections, and energy management such as pacing and switching, in contrast to forced exercise most recommend. Repeated episodes of paralysis can cause additional permanent damage to the muscles; those unaware they have M.E. wouldn’t know this.
Just remember: Whatever your symptoms, whatever your diagnosis, all of us in this community understand your suffering and want the best for each other. If you’ve had a long day of advocating, here’s some very good news, and your invitation to rest.
♥ a rainbow at night
- What is Myalgic Encephalomyelitis? (M.E.)
- Explaining to Those with “ME/CFS” That They Cannot Have Both
- Resources on M.E. and CFS
- (Ongoing series on a rainbow at night)
Throughout this series, but especially in this part, I only ask you to remain open. But what does that mean? To quote Thich Nhat Hanh: “Usually when we hear or read something new, we just compare it to our own ideas. If it is the same, we accept it and say it is correct; if it is not, we say it is incorrect. In either case, we learn nothing.” So by being open, we agree to allow the information in and integrate it with the use of our intelligence instead of thoughtless reaction.
So much of the M.E. vs CFS debate is clearly a matter of perspective.
If you’ve been offhandedly diagnosed with myalgic encephalomyelitis (M.E.) or diagnosed with chronic fatigue syndrome (CFS), there’s a good chance you tend to to speak with those in the community who also have your symptoms. It’s easy to reinforce your own version of things when there’s nothing to challenge it; if everyone around is just like you, who wouldn’t feel right? You generally support research efforts into “ME/CFS” because you feel confident this research will actually help you and others, so your main advocacy cry is “More funding!”
But hold on…
Would you still feel just as confident that research being done on your illness was ACTUALLY being done on YOUR illness if all the people you talked to didn’t have your symptoms? Or would that make you wonder which disease researchers were ACTUALLY studying/what group of people the studies were ACTUALLY helping?
To quote a friend: “Before you jump on the bandwagon and decide that this is just a silly name war, consider the implications.”
What if everyone you talked to with your illness said they actually weren’t very fatigued and could exercise five times a week? Your thoughts are probably the same as what an M.E. patient thinks when we hear of someone getting an M.E. diagnosis (1) without getting sick after a virus, (2) without having any neurological damage, and (3) without experiencing any exertion-induced muscular fatigue and/or pain (with subsequent exertion-induced paralysis): How can they have a disease without any of the core manifestations of that disease?
Or, what if your version of CFS were suddenly renamed to “idiopathic rash disease” just because a lot of people with CFS get rashes? Over time, your disabling fatigue, post-exertional malaise, pain–none of it is required anymore for this new diagnosis, BUT! It’s now called “CFS/Idiopathic Rash Disease.” You might ask, but Kit, if none of the symptoms for CFS are required for Idiopathic Rash Disease, why on earth was it ever combined? Well, because the Idiopathic Rash group advocated so strongly that the illnesses should be combined–after all, even though they have little in common now, it did originally start as a type of CFS, right?–that it ultimately becomes known internationally as “CFS/Idiopathic Rash Disease.” This looked like a good thing to the thousands of people who had no idea what “real CFS” was, so there wasn’t much protest from society at large…even though this combination further muddled everything (especially research!) by combining what used to be called CFS–your disabling fatigue, pain, sleep problems, etc.–with a new category that the government invented to study unexplained rashes.
Meanwhile, CFS advocates are feeling increasingly helpless that the majority of their patient group is being replaced with something that only barely describes their condition–your condition!–pleading, “This rash disease used to be called CFS, because we all had excruciating fatigue and post-exertional sickness! What is left to study our illness if all research is going towards unexplained rashes that could be caused by a million different things? Some of us are dying!” Incredulously, the people diagnosed with Idiopathic Rash Disease truly think they have the same illness as you, as classic CFS, even though they didn’t need nor have any of your symptoms for diagnosis.
How do you suppose research on “CFS/Idiopathic Rash Disease” will actually study people like you, now, when classic CFS is being buried year after year by more and more people who just want answers to their rashes…? And truly, they deserve those answers, don’t you think? You wouldn’t want to deny them their own research just because the government made a nonsensical decision to replace CFS with a focus on this new rash disease. But nonetheless, both groups are synonymous with each other, now, and across the globe people are starting to forget that CFS was once its own category, with its own symptoms that had nothing to do with idiopathic rash.
One day, you realize thirty years have passed, and all the new patients being diagnosed with “CFS/Idiopathic Rash Disease” don’t even remember when CFS was its own illness anymore. Funny thing is, everyone is quick to remember the part where Idiopathic Rash Disease started because of some CFS patients with rashes, but no one seems to remember that that’s where their similarities ended. You’re no closer to science figuring out what’s wrong with you, nor is anyone with Idiopathic Rash Disease any closer to finding out what’s really causing their symptoms. In fact, these new, uninformed patients are now yelling at you, an original CFS patient, claiming none of this even matters. Why are you so caught up on a name? Idiopathic Rash Disease is the same as CFS because it was created from CFS patients. And if no one likes the name of “idiopathic rash disease” maybe we’ll just petition the government to call this “CFS” again–that would help everyone, right, if we just took all these random rash patients and said they have CFS?
Hopefully that scenario upset you. Hopefully it made your head spin to think that anything so nonsensical and unscientific could ever happen. Maybe you’re even outraged and ready to end this hypothetical situation…
But this is exactly what happened to people with classic M.E. when CFS was invented. CFS was created to study “chronic fatigue of undetermined cause” and as the years have passed it’s morphed into a hybrid that still doesn’t describe any one condition. And it is not the fault of the CFS patient (or “ME/CFS” patient) that they’ve been so misinformed by the people they thought they could trust, or that those in power leave out major details when discussing ME and CFS history. But if it were you, if you REALLY WERE being replaced and forgotten in favor of a new illness that doesn’t describe your disease, wouldn’t you want someone to speak up for you?
So why do people look at us like we’re doing something wrong by reminding everyone that chronic fatigue syndrome is not M.E.? I quote again: “Before you jump on the bandwagon and decide that this is just a silly name war, consider the implications.”
Luckily, the illness defined by Ramsay et al. called myalgic encephalomyelitis is not that easy to get. But
- we all got sick after a virus;
- we all have measurable neurological damage; and
- we all have a very distinctive muscle pathology, a sign that was described by multiple doctors who all came to the same conclusion without having any communication with each other: “Muscle fatigability, whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis. Without it I would be unwilling to diagnose a patient as suffering from ME, but it is most important to stress the fact that cases of ME of mild or even moderate severity may have normal muscle power in a remission. In such cases, tests for muscle power should be repeated after exercise.” (Quote by Dr. Melvin Ramsay, although all M.E. experts explain this same phenomenon in their own way)
And finally, none of us are being studied at all unless we piggyback into research with other illnesses. People with classic M.E. have been forgotten, and this has been worsened irrevocably by (1) fighting to have ME and CFS combined into “ME/CFS” without fully understanding what this does to us or how much it further harms everyone, as well as (2) efforts to rename CFS to M.E., which is entirely illogical. Several recent polls have revealed that patients prefer the name M.E. because it sounds more legitimate, even though most people diagnosed with CFS–and even people diagnosed with ME without thorough inspection–do not actually have classic ME.
It makes no sense to rename CFS (and SEID) to “M.E.” without also changing the diagnostic criteria to actually reflect M.E.: This is not 1988, the CFS bucket no longer contains just people with my illness, or just people with your illness, but dozens of misdiagnoses combined under one label. So why on earth would we rename one condition to another condition that it isn’t? I think the only thing these poll results prove is just how misinformed our community really is about our history, which is a major reason I’m writing this series. (I also left a comment to that post.)
So what’s my point in all this?
People who do get this infectious neurological disease–classic M.E. as it was defined before being unduly influenced by CFS and psychiatry–deserve to be and should be studied on their own, NOT forced to share the diagnosis and subsequently the research opportunities with other illnesses, all because a mistake was made thirty years ago. It’s not about the name itself as much as what the name used to stand for: I don’t care if we start calling it Egg Disease, as long as it actually describes and studies us, and only us! Until we consistently group people like us together and study them, we will never know what is causing this illness or how to relieve the suffering of people who move into the chronic, incurable, relapse-remitting or progressive forms.
All of these outbreaks didn’t just just magically stop occurring when CFS was invented. M.E. outbreaks are still happening even though the epidemics are no longer being recorded or studied. Cort Johnson wrote that Dr. Byron Hyde mentioned having “reports of over sixty” M.E. outbreaks from just 1988 to 2003, which were “no longer figured in the literature” and “were not given any mention in the ICC” (International Consensus Criteria). This should horrify people, and yet…
So please tell me how people with classic M.E. are supposed to be okay with what’s happened. Please tell me how research on people who became gradually fatigued is supposed to help people who all got sick after a virus. Please tell me how research on people who are chronically fatigued is supposed to help people whose breathing muscles are so weak many must sleep propped up or suffer from hypoxia; who exhibit clinical heart failure after exertion; who can’t write without risking arm paralysis; who can’t get up from the lying position using their back and abdominal muscles (which used to be such a prominent feature at the onset it was almost a diagnostic sign). And please tell me how giving people a diagnosis of M.E. without requiring the core manifestations, without checking for bacterial infections like Lyme disease, or even without giving them an MRI, is supposed to result in anything other than continued disaster (for us and the integrity of research).
If you want to pretend none of this is true–that you didn’t read any of this, that infectious M.E. doesn’t still exist–you won’t run into any shortages of other places to go. There are countless patient groups for you to join that will say none of this matters because it’s not THEIR symptoms that are being ignored. You’ll still have those options… But I ask you to contemplate having your disabling condition replaced by idiopathic rashes, like we’ve had our disabling condition replaced by idiopathic fatigue. After reading this, you are aware that we still exist and that M.E. epidemics are still quietly occurring. Don’t forget us.
All of that said, I do think we’re too far gone to erase CFS or SEID, despite some claiming it is the only way forward. I do not think it is the only way, nor do I think it’s even plausible. In reality, while we’re fighting for change, people are going to be misdiagnosed with CFS (and SEID, if it’s implemented)…including thousands of people with M.E. This is terrible because it diagnoses us too late for intervention, doesn’t give us the treatment advice we need in time, and doesn’t allow us to partake in research that applies specifically to us. But not all “ME/CFS” research has been fruitless. Some researchers select specific subsets–such as focusing on post-viral acute-onset cases while at the same time selecting patients who meet the Canadian Consensus Criteria, the only criteria that specifically require muscle fatigue–and we do get somewhere. That is exactly how the recent “robust evidence” paper selected their patient group, and it most likely included many patients with actual M.E. because of it; to that effect, the results actually match historical knowledge about ME in several ways. I also personally hypothesize that if SEID inadvertently catches a greater number of people with M.E., coupled with increased funding, this may one day force science to separate us into our own group yet again, if we repeatedly show abnormalities that others CFS subsets cannot reproduce… But I’ll have to explain all that in a later post, as this one is getting uncomfortably long.
Lastly, consider this:
There are thousands of rare diseases that will never be studied or researched. I think sometimes we get lost in the idea that it’s others’ jobs to fix us instead of our job to continue living our lives as best as possible. It’s wonderful that we’ve created a system to study diseases and relieve suffering, even if those systems get it very, very wrong sometimes. But M.E. has existed for centuries and will continue to do so, no matter what people call it, no matter how many people try to say we don’t exist. So listen to me:
I believe you. I’m sorry we’re on this particular journey together. And it is my most sincere wish that you not only discover the truth about this disease to the extent that it will help you (the books by our experts are some of the most validating things you’ll ever read) but that you’ll also do everything you can to increase your quality of life while you’re here, because you do matter. Dare to find enjoyment in your life, even if it’s difficult, because your life isn’t over just because you or a loved one got sick. In the mean time, we have to help each other, and I hope to do my part by not letting the truth die out. If you are also a person with classic M.E. or their carer, I invite you to share your story with the world, as well.
“If you destroy the record, you destroy the truth.
I’ve learned in my adult life that the will to silence the truth is always and everywhere as strong as the truth itself. So it is a necessary fight we will always be in: those of us who struggle to understand our common truths, and those who try to erase them. …
All so precious and fragile. Don’t let anyone tell you that the truth can’t disappear. If I believe in anything, rather than God, it’s that I am part of something that goes all the way back to Antigone, and that whatever speaks the truth of our hearts can only make us stronger. Can only give us the power to counter the hate and bigotry and heal this addled world.
Just remember: You are not alone.”
(Paul Monette, “Last Watch of the Night: Essays Too Personal and Otherwise.”)
Until next time…
♥ a rainbow at night
- The Parts of ME: 00. Introduction & History: How did we get here?
- The Parts of ME: 02. Does “Post Exertional Malaise (PEM)” exist in other diseases?
Missed diagnoses: Myalgic Encephalomyelitis & chronic fatigue syndrome (2nd ed.), by: Byron M. Hyde, M.D. with a foreword by Professor Malcolm Hooper. (2011)
The Clinical and scientific basis of myalgic encephalomyelitis/chronic fatigue syndrome, by: Jay A. Goldstein, M.D. and Byron M. Hyde, M.D. (1992)
Myalgic encephalomyelitis and postviral fatigue states: The saga of Royal Free disease (2nd ed.), by: Melvin A. Ramsay, M.D. (1988)
It takes a long time for me to integrate new information.
And as anyone in the ME community knows, we’ve had a ton of that since February. Instead of blindly powering through, waiting has given me a month to gather facts, opinions, and input from our advocacy leaders, my trusted friends, and even the IOM committee members. The best way for me to write and for you to read (that is, if you want) is to break it into parts.
Please note that each post will be able to stand on its own: Don’t fret about having to remember plot-lines from week to week; this is not a story. This is definitely. not. a story.
All right. Fasten your seat-belts, gather your friends, because here we go. It’s time to make some sense out of all this.
The Parts of M.E. (Upcoming posts)
Introduction & History: How did we get here?
The IOM Committee Speaks Out
The Problem with M.E.-only Advocacy, and How SEID May Help
Does encephalomyelitis really exist in Myalgic Encephalomyelitis (ME)?
The ICC or CCC as an M.E. definition: Are we promoting bad science?
Why do we advocate?
Note: Some of these might be combined or further segregated as I go along.
Let’s begin by clearing something up: How did we get here? The confusion between M.E. and similar states has always been a point of controversy. Today’s over-inclusion involves M.E. vs Any other disease with chronic fatigue; before CFS, the over-inclusion was of M.E. vs. Any other disease with chronic post-viral fatigue. These illnesses have also always been thought by many to be purely psychological in origin…along with 95% of all other ailments, because that’s just what people did back then. (Hysterical wandering uterus, anyone?)
But why hasn’t M.E. moved forward with all the others, especially after decades of documented outbreaks and with so much research proving it’s an acquired disease of non-mental origin?
The major denial of M.E. in both the US and UK has stemmed from people with too much power failing to examine a single patient.
McEvedy and Beard–both psychiatrists*–wrote their deplorable 1970 re-analysis of the 1955 Royal Free epidemic without doing a physical examination on a single patient, basing their feedback on data which they decided could just as easily have been hysteria…not out of some moral obligation to scrutinize data, but because McEvedy was a psychiatry student who needed an easy paper to write for his PhD. Professor Hooper writes of this:
“McEvedy stated that he did not examine any patients and undertook only the most cursory examination of medical records. This was a source of great distress to Melvin Ramsay who carried out the first meticulous study of the Royal Free outbreak. The outcome of McEvedy’s work has been described by one of the ME/CFS charities as “the psychiatric fallacy”.” (1)
Dr. Hyde writes of his personal visit with McEvedy in 1988:
“Why had he written up the Free Hospital epidemics as hysteria without any careful exploration of the basis of his thesis? I asked.
His reply was devastating.
He said, ‘It was an easy PhD, why not’.” (2)
While over in the US, it is well-known that the CDC did the exact same thing:
In response to several 1980s M.E. outbreaks, CDC investigators looked only at patient charts–NOT actual patients–and returned to their offices to make jokes about our presumed “hysteria.” It wasn’t until the doctors attempting to manage these outbreaks took over $200,000 of their own money to pay for MRIs, that they found their patients had brain lesions indistinguishable from those found in people with AIDS; because these findings were not seen in ALL patients, they were not taken seriously, despite being consistent with myalgic encephalomyelitis. In 1988, the CDC christened the continuing outbreaks as a new illness–chronic fatigue syndrome (CFS)–effectively because three M.E. experts left the committee early due to a lack of patient information and the remaining committee’s preoccupation with Epstein-Barr Syndrome. (2)
From the criteria that developed to study CFS (which was only intended “to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause“), we have helped cultivate an old mess that still exists today: Thousands of people diagnosed with everything under the sun, whose illness is being called myalgic encephalomyelitis. This includes thousands who don’t meet even a single criterion for what was actually M.E. before the invention of CFS or the watered down post-CFS model of ME that exists in many countries today.
As you can see, this is the reason some diagnosed with CFS do have M.E., and the reason much research does still apply to M.E. even if the titles “CFS” or “ME/CFS” are used. The trick lies in checking the methodology: If patients were selected using the ICC or CCC (especially in addition to another criteria), there’s an excellent chance the results could apply to classic ME. If they were selected to meet certain additional M.E.-like criteria, such as a post-viral onset, even better. But if patients only had to meet one CFS criteria (or something equally nonsensical, such as the UK’s “NICE guidelines for CFS/ME”), proceed with caution, because this may mean the only thing the participants had in common was “a fatiguing illness.”
“Even if the truth is buried for centuries, it will eventually come out and thrive.” (Burmese Proverb)
♥ a rainbow at night
(P.S. – I thought I should finally publish a Facebook page so I can be engaged with the wonderful groups and people there, and also share things that are both too long for my twitter and too short for blog posts. Watch it for updates of new posts, things relevant to Myalgic Encephalomyelitis and related diseases, Lyme Disease and related content, Buddhism and spirituality (theists and non-theists welcome), Mindfulness and other meditations, coping, advocacy, and more. You CAN post to the page, but things will be moderated–checked by me for inappropriate content before they go public–to keep it a safe place: Differing opinions are NOT seen as confrontational, just don’t talk down to others. :) Thank you for your “Like”!)
Here are some things I used to think about people who tried to tell me chronic fatigue syndrome (CFS) was different from myalgic encephalomyelitis (ME):
- They’re just trying to cause a problem where there isn’t one.
- They’re “those advocacy-type people” who “make a big deal out of everything.”
- They just want it to sound more serious, when it’s actually the same illness.
- It really doesn’t matter what people call it; they just want their disease to be “special.”
Yes, I *legitimately used to think these things.*
Have you ever wondered why people continue using terms like “ME/CFS” “CFIDS/ME” (and now “ME/SEID”), despite being confronted with information that clearly details their differences? Ever wanted to inform someone you care about, but aren’t sure how?
I recently witnessed this exchange that took place across several days, about what all too often happens when people try to educate others on this matter. Brooke and her friends have graciously allowed me to post their conversation on why people resist this truth so fervently, as a guide for all of our understanding.
(She would post it on her own blog, but now lacks the cognitive flexibility to organize and edit as I’ve been blessed to accomplish here over the past week. I’ve edited the quotations only to clarify the intended meaning and combat the effects of cognitive disability.)
“All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.” Arthur Schopenhauer, German philosopher
Renee Roszkowski: “Just got called ‘disrespectful’ for trying to educate on the fact that M.E. and CFS are not the same thing and the term ME/CFS is not really a good term.”
Brooke: “I’m sorry to hear that. Unfortunately, it’s not too uncommon for (some) people diagnosed with CFS to get upset when people try to explain the difference. I can understand: They go so long not knowing what’s wrong with them, being judged, told it’s all in their heads, etc, and then a doctor finally gives them a diagnosis frequently linked together with a very real, fairly well-understood, officially recognized neurological disorder, so they want to cling to that. Being told they may not have M.E. (and most likely don’t), puts them back in the position of, “Well, then what’s wrong with me?” And that’s difficult to accept.
It’s hard for those diagnosed with CFS to accept that they *don’t* actually have a diagnosed illness, yet; that all they have is a diagnosis that says doctors don’t know what their diagnosis is; that it’s not a single, treatable illness able to be researched like so many have been led to believe. (It was never intended for CFS to be its own disease; it was intended to “to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause.” ¹). Finding out that they need to go back to pushing doctors to do whatever tests are necessary to find their *true* diagnosis can be extremely disheartening. …
It’s just difficult to help people get past the initial frustration or fear-induced reaction of disbelief, and help them move on to the idea of, “Hey, if I don’t actually have M.E., there’s a decent chance whatever I *do* have has at least some level of treatment available–maybe even a cure.” It’s difficult to go back to pushing for answers, but it is oh-so-worth-it for those who finally find them, and find some level of relief from their symptoms!“
Renee: “I can totally understand, having been diagnosed with CFS, but actually having Chronic Epstein-Barr Virus, endometriosis, probable POTS (not yet diagnosed but I meet the diagnostic criteria), and potentially having a thyroid disorder, ALL of which have fatigue as a major symptom. I totally understand.”
Brooke: “Yeah, a lot of people diagnosed with CFS also have other diagnoses, which is kind of crazy if those other diagnoses can explain their fatigue, because a requirement for a CFS diagnosis is that your fatigue is not explained by any other illness ² (again differing from M.E., which, like any other neurological illness, you can have even if you also have other conditions causing similar symptoms). Why do doctors diagnose people with CFS if their symptoms are explained by other (testable) conditions? Not only is that medically incorrect/[completely against the criteria for diagnosis], it just doesn’t make sense to me. Diagnosing these individuals with CFS [when other conditions explain their symptoms] then saying it’s the same as M.E., is like doctors issuing a statement that everybody with a condition that causes any form of fatigue will now also be diagnosed with cancer.“
Jennifer Phillips: “What people mean is too often not what actually gets heard. ‘CFS is not a real diagnosis’ can all too easily get heard as ‘CFS is not a real disease and you’re making up how sick you are.’
You need to approach it like this:
“You probably know that CFS captures a lot of different diseases that doctors just don’t know how to diagnose, right? People with CFS are sick, but not all in the same way. But M.E. has a distinct diagnosis and known cause. So if you’ve been diagnosed with CFS, you may or may not have M.E., depending on if the doctors have done these diagnostic tests or not. If you don’t have neurological problems, you probably do not have ME. This does not mean you are not sick, but that the knowledge about M.E. likely can’t help you and chances are your doctors need to keep figuring out what your CFS really is from.“
Brooke: “That’s generally how I approach it when explaining to people who don’t already know all this stuff. I’m a bit more blunt (or rather, I just don’t take the time/energy to be extra careful in wording) with people who I know already get it and have the same views, but I agree, when educating you do have to be careful not to come across as saying the person is not sick. Most people diagnosed with CFS have heard that too much in their lives, and will be quick to get defensive–I know, because at one point I, too, was (mis)diagnosed with CFS. The vast majority of people with CFS don’t have M.E., so in a way I ‘lucked out’ once I had the CFS diagnosis, in that it wasn’t too hard to find the accurate diagnosis from there (with the proper tests to correctly diagnose it). But I do think most people with CFS have at least one physical illness of some kind. Even for those whose illness is psychiatric, that’s nothing to look down on. (For example, one study found over 30% of individuals with Major Depression were misdiagnosed with CFS: “Findings indicated that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the new CDC definition.” ³) There are often very real chemical/physical causes behind mental illness, too. They simply need to find the truth, whatever their true diagnosis is, so they can look for appropriate treatments.”
Renee: “I told them that I have CFS and a friend with ME, so I don’t think I sounded dismissive.”
Brooke: “One of the issues I see all too often is that many CFS patients actually *don’t know* that CFS includes people with lots of different illnesses. They’ve actually been told by their doctors and others that CFS is one single illness (“otherwise, why/how would anyone research it?”) and that “it” is synonymous with ME. They think that as long as you have unexplained fatigue lasting six months or longer, you have ME. Getting people to understand that (1) there is no single “it” when it comes to CFS, (2) that ME is something *entirely* different (most M.E. patients don’t even list “feeling fatigued” as a major symptom; our fatigue is at a cellular level and can contribute to the transient paralysis many of us experience), and (3) that *every* diagnosis of CFS is a misdiagnosis [because CFS is not a single disease but a diagnosis given when you have unexplained fatigue, nowadays particularly when you have unexplained fatigue with a post-exertional crash] – that can be a real challenge.”
Jennifer: “Which is why I phrase that point up front, as something they either know or don’t know, *not* something open to debate or telling them what to believe. Like you said, that confusion is why you want to educate people.”
Richard Heckart: “A closed mind is worse than an empty one. That’s my new saying from now on. Pass it on.”
To additionally put this in perspective for you:
It’d be like if the government suddenly stopped diagnosing Multiple Sclerosis and started calling all new cases “Weak Leg Syndrome,” deciding that the primary symptom of this new syndrome is weak legs. Eventually it gets dubbed “MS/Weak Leg Syndrome.” And now they’re saying that all you have to do to help weak leg syndrome is exercise because some people got better that way; they think other people simply have weak legs because they’re too depressed to move. Oh, and because MS = Weak Leg Syndrome now, no one ever gets diagnosed with actual MS anymore, so people with actual MS never get the correct life-saving treatment, therefore everyone who actually has Multiple Sclerosis, dies. Sounds crazy, right? Can you see this actually happening with any other well-known disease like this? Not at all. But that’s what happened to people with classic ME.
I hope people understand we are not just trying to nag you, or get validation for “our special disease” while leaving out everyone else. This isn’t a club anyone wants to be in. Everyone is suffering because of this international confusion. And because you can’t reliably study anything that isn’t clearly defined, no matter how many times they rename it or move around the same criteria, CFS still won’t be its own disease. There was no need to ever create CFIDS/CFS/SEID when the illness occurring in the 1980s epidemics already had diagnostic criteria, it already had a known cause, and it already had a name: Myalgic Encephalomyelitis. But instead of continuing to use it, the government created something entirely different, and all government-funded research on people with classic M.E. abruptly stopped.
If you get diagnosed with CFS but don’t meet the diagnosis for the original illness (M.E.), it means you have something else that your doctors haven’t yet identified, ranging from the potentially treatable to the potentially fatal. So please continue to educate yourselves, *and* your doctors, because they are not omnipotent gods incapable of mistakes. There are also things you can do to slow down the progression of M.E., if you do indeed have it. And last but not least, don’t think that just because you have Post-Exertional Malaise (PEM), that you automatically have ME, because post-exertional malaise does exist in other diseases.
I have a friend in the UK who’s been diagnosed with “ME/CFS” for several years without having ever been given an MRI. But yet she’s in a wheelchair, getting worse, and shows several defining symptoms of MS.
Maybe she just has Weak Leg Syndrome and needs to walk it off…
♥ a rainbow at night
Resources for M.E. and CFS
- Ongoing Series: The Parts of M.E. on a rainbow at night:
- CFS and M.E. comparison chart
- M.E. vs CFS vs SEID Information & Advocacy Chart
- M.E. vs MS: Similarities and differences
- The misdiagnosis of CFS “None of the definitions of CFS defines M.E., so what do they define? What does a diagnosis of CFS actually mean? Why is every diagnosis of CFS merely a MISdiagnosis?”
If You Mean M.E., Just Say M.E.!“ME G93.3 is listed under neurological diseases. CFS R53.82 is listed under Symptoms, Signs and abnormal clinical and laboratory findings, not elsewhere classified. So the ICD-10-CM officially states that ME and CFS are two separate diseases, classified in two different categories, each mutually exclusive of each other.”
- Myalgic Encephalomyelitis on NORD (National Organization for Rare Disorders) “NORD is very grateful to Leonard Jason, PhD, and his DePaul research team, for assistance in the preparation of this report.”
- Understanding M.E. and CFS, from the Nightingale Research Foundation by Dr. Byron Hyde, M.D.
- CDC Toolkit: Diagnosis and Management of CFS “The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.”
- What is ME? What is CFS? Information for Clinicians and Lawyers by Professor Malcolm Hooper
- M.E. tests “M.E. is a distinct, recognizable disease entity with several unique features that is not difficult to diagnose within just a few weeks of onset.”
- ME vs. CFS – They’re Not The Same!
- Articles by Dr. Melvin Ramsay who created The Ramsay Definition for Myalgic Encephalomyelitis
- Articles by Dr. Elizabeth Dowsett
- A Brief History of M.E. and an Irreverent History of CFS/A new and simple definition of M.E. and a new simple definition of CFS by Dr. Byron Hyde, M.D.
- Articles by Professor Malcolm Hooper “The term BENIGN MYALGIC ENCEPHALOMYELITIS was first introduced in the UK in 1956… The word ‘benign’ was used because it was thought at the time that the disorder was not fatal (as poliomyelitis could be, with which it had some similarity), but it was quickly realised by clinicians that ME was not a benign condition, as it has such high morbidity… By 1988 clinicians had stopped using the word ‘benign’ and referred to it as ME, the first to do so being Dr Ramsay. However, the ICD still uses the term ‘benign’ in its classification.”
Note: Because of thirty years of confusion, some information labeled under CFS may be relevant to M.E., since some researchers use additional characteristics and biomarkers to select for different subsets of patients; for example, selecting the most severely affected (which through no coincidence tend to be those with M.E., often due to years of being told to exercise when this leads to disease progression and premature death), those with an acute viral onset, and those who met diagnostic criteria which required muscle fatigue on exertion. Likewise, not all information labelled “M.E.” is actually referring to the specific disease of myalgic encephalomyelitis, and may only be borrowing the name while in fact the data therein describe general CFS or “ME/CFS.”
(1) Holmes, G. (1988). Chronic Fatigue Syndrome: A Working Case Definition. Annals of Internal Medicine, 387-387. “We also present a working definition for the chronic fatigue syndrome designed to improve the comparability and reproducibility of clinical research and epidemiologic studies, and to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause.”
(2) The IOM recommended on Tuesday, February 10, 2015, that this requirement be lifted, but please bear in mind this has not yet been implemented by the CDC or become customary for doctors; diagnoses of CFS are still and have always been made on the basis of unexplained fatigue, whereby any other diagnosis is supposed to disqualify you from having CFS, because CFS is a diagnosis of exclusion, i.e., not a specific illness but a category people are put in when doctors cannot explain your fatigue and other symptoms, even if your symptom of fatigue is post-exertional fatigue.
(3) Jason et al. Evaluating the Centers for Disease Control’s Empirical Chronic Fatigue Syndrome Case Definition. (2008). Journal of Disability Policy Studies, 20(2), 93-100. Almost 2 of every 5 people diagnosed with Major Depression meet all the criteria for CFS, too. “Findings indicated that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the new CDC definition.”
Today’s post comes to you with a mix of emotions. Hope. Grief. Joy. Bittersweet, if there were ever a scenario in which to feel it.
Erica Verrillo e-mailed me last week to share some important news. For this year’s awareness day on May 12th, there will be a demonstration at HHS headquarters in San Francisco to raise awareness of myalgic encephalomyelitis. The information reads as follows:
JOIN US IN SAN FRANCISCO ON MAY 12!!On Monday, May 12th from noon-1PM there will be a gathering at HHS headquarters at the Federal Building (90 Seventh Street)“30 Years of Neglect”30 years ago the town of Incline Village, Nevada was struck with myalgic encephalomyeltitis (ME), a neurological disease that HHS derisively named “chronic fatigue syndrome.” Since then, over a million people have been struck – worldwide, between 17- 20 million. In one quarter of the cases – 250,000 people in the US – ME leaves its victims bedbound. And, it kills.HOW MANY MORE MUST DIE?What has HHS done in the past 30 years to prevent the spread of this disease?Absolutely nothing. HHS has stood by while over a million people have fallen.· HHS has failed to fund research· HHS has failed to provide accurate information to physicians· HHS has actively lobbied against patient interestsPlease join us at the Federal Building on 90 7th Street on May 12th noon – 1PM!To draw attention to the fact that ME not only disables but can kill its victims, we will be displaying a line of empty wheelchairs with pictures of people who have died of ME, and we will read their obituaries.Afterwards, we will go to McKesson Plaza to take our message to Dianne Feinstein. (5 blocks from Federal Building – there is a bus stop close by.)
This will be a peaceful demonstration. (We have a permit.) For your convenience, there is a bathroom in the café next to the Federal Building.
For more information please contact Erica at email@example.com
If people were diagnosed from the onset and their doctors knew that enforced rest could mean the difference between a possible remission or mild form of the disease, or permanent damage and eventual death, how many lives could be saved from this disease that still has no cure or treatment?
People with M.E. are at a great disadvantage when it comes to rallying–we’re usually too sick to do it. Rarely is there a grace period between falling ill and disease progression–every stage of M.E. is a disabling level of illness, or else we’d have raised a much larger fuss by now. But if we have weeks of planning in advance, some might be able to make it.
I never participate in “International ME/CFS/FM Awareness Day,” as I feel the loud cries of “combination advocacy” hurt us all. We just want the truth out there, but those of us with M.E. get forgotten under accusations of trying to stop progress. But we’re not. It is fact that “chronic fatigue syndrome” was an invented term for what was actually an M.E. outbreak. The CDC ignored M.E., created new criteria for diagnosis that was purposefully written to focus on chronic fatigue, and called this “new” illness “CFS.”
“The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.” (Centers for Disease Control and Prevention, USA, 2011)
Ever since then, government funded research into M.E. completely stopped, and everything is now poured into the world’s new definition of CFS, or some perceived mixture of both under “ME/CFS.” Because of this, research gets no where, no cause or cure can be found (how could it?), leaving scientists to think it’s all in our heads; sick children are taken from their families and into mental asylum because doctors think this “new version of M.E.” is purely psychological. And fibromyalgia may accompany M.E. just like it may accompany any other illness that damages the nervous system, but it is not ME. Worst of all, the exercise recommended for patients of “Chronic Fatigue Syndrome” and Fibromyalgia can kill or cause permanent damage to those with ME.
We need to get this information out there, but how can we if we’re too sick to be noticed? So please, share this information so more people can have a chance to show up, and let’s try to make a statement. Maybe we’ll make the news.
♥ a rainbow at night
(Post Script: If it’s easier to share an image, download this.)
Brooke hosts this very new blog, intimately sharing her experience as a person with myalgic encephalomyelitis (M.E.) who is currently in hospice care, or, more bluntly put, expected to die from the disease within six months.* That is her current situation, but she is also a person who loves dogs, languages, poetry, nature, and music. Regarding those interests, I feel like I just wrote an explanation about myself! I’ve enjoyed her few new posts ranging from recaps of who she is and has been, facts about the disease, and how hospice care can be of real benefit. I feel she has a valuable perspective and I expect however many entries to follow will continue to be enlightening and authentic. I also admire her idea to start something new when some might raise the idea of it being “too late”–her choice to express herself is testament that we are always, always evolving. In the entry I’ve chosen to reblog here, she explains the huge detriment of calling Myalgic Encephalomyelitis “Chronic Fatigue Syndrome,” the harm it has caused patients, and how that ever came to happen.
♥ a rainbow at night
“ME is not CFS. By CFS, I am of course referring to the diagnosis Chronic Fatigue Syndrome. Everywhere you go, you see the two names combined. Many patients themselves abbreviate their illness as ‘MECFS,’ ‘CFS/ME,’ etc. This is incorrect. Doing so hurts literally hundreds of thousands of people around the world. Let me explain.
“Myalgic Encephalomyelitis got its name long ago based on what experts saw in patients with the disorder, as well as the autopsy results of many of these patients. What the autopsies showed was inflammation of the brain and spinal cord, deterioration of the dorsal root ganglia, and more. The name Myalgic Encephalomyelitis means ‘muscle pain and inflammation of the brain and spinal cord.’ It’s a perfect fit. In 1969, the World Health Organization (WHO) recognized this fact and officially classified Myalgic Encephalomyelitis as a neurological disease.
Then the US got involved. In the 1980s, there was a breakout of ME in the Lake Tahoe area. The US sent a couple people to investigate. These individuals refused to meet with any patients, look at blood samples, or do anything productive. … There was not one single experienced ME expert on this panel. Rather than call the illness by the name already recognized by the WHO, the US came up with the name Chronic Fatigue Syndrome. This is where the two names became linked. “Read more
via Documenting M.E.
* ETA, Feb 2016: This didn’t happen and Brooke is still with us–not necessarily “fortunately,” if you know what an excruciating disease this is–because the final stages of M.E. do take years, which both her and her doctor were aware of at the time. However, she at least was able to enjoy six months of supremely attentive hospice care, which is more than 99% of people with M.E. ever receive, even though countless need it. Her doctor remains an integral part of her care to this day, including home visits, as she obviously cannot as much as leave her bed, much less her house, to go see one.
This is a survey of sorts that went around several years back, obviously before I ever made this site. It’s still going around, so I’ve updated some of my old answers in response to more recent developments, and decided to put it here. :) Feel free to fill out this survey for your own blog! (The blank form is at the link.)
The illness I live with is: primarily Myalgic encephalomyelitis (M.E.) and Borrelia burgdorferi (Lyme disease), complicated by additional infections for which I have tested positive: Bartonella quintana, Bartonella henselae, andMycoplasma pneumoniae. There is no cure for M.E., and because of immunodeficiencies and extremely delayed diagnosis, I have late stage neuroborreliosis. I finished treatment for bartonellosis, but the disease is prone to relapse, and by mid-2013, it did.
I was diagnosed with it in the year: 2002 for M.E.; 2009 for the rest.
But I had symptoms since: 2000-2002 for M.E.; 2006 for Lyme disease; and 2008 for the rest.
The biggest adjustment I’ve had to make is: putting forth a conscious effort to consider how every little thing I do (or don’t do) will affect me longterm. This is the crux of being a spoonie.
Most people assume: that either none of these illnesses exist at all, or that they have no potential to go chronic or cause the level of disability I experience. Oh, don’t mind me, I’m just dying from something you don’t even believe in, that makes perfect sense…!?
The hardest part about mornings are: dealing with the surge of pain I feel from lack of medication overnight; making sure I don’t pass out; stabilizing my autonomic nervous system.
My favorite medical TV show is: Monsters Inside Me.
A gadget I couldn’t live without is: my smartphone!
The hardest part about nights are: sometimes my headaches are worse by then.
Each day I take ___24___ pills & vitamins.
Regarding alternative treatments I: have been helped more by herbs and specific supplements than any pharmaceutical drug, as far as the M.E. is concerned; but without the drugs for Lyme disease and the infections I picked up, I doubt I’d be typing this right now.
If I had to choose between an invisible illness or visible I would choose: invisible, because I’m not a fan of attention and I like the option of blending in. Using mobility aids like canes, wheelchairs, and mobility scooters has brought me to the visible spectrum, and I still prefer invisible, with that in mind. But I really don’t have to choose, I guess–I’ve been both!
Regarding working and career: I think this blog is the closest I get to working. We’re all here on earth to grow our souls, and it just so happens my soul decided I could best learn through the experience of sickness. As a wise woman once said, there was never a version of this life for me where I wouldn’t have been sick. I.e., this is what I have to work with! Every day I do the best I can for my body so that my soul can continue its journey here.
People would be surprised to know: just how sick I get AFTER they see/visit with me, because my worsening can be delayed by 24 hours or more; that phone conversations give me a fever; that continuous typing or texting can lead me to muscle paralysis.
The hardest thing to accept about my new reality has been: that the odds are, statistically, against me.
Something I never thought I could do with my illness that I did was: travel across the country during nine days of feeling miraculously better (though it still ended with me in the ER) to accomplish my bucket list dream of visiting San Francisco, watching the sun set into the Pacific ocean, and seeing the majestic Redwoods in the Avenue of the Giants. Also, helping so many people with the words I share. At the time of my first editing this post, my site had exactly 26,000 page views. Now on my third edit (2014), it has had over 72,000… How is that even possible? I’m in awe. Thank you for letting me into your life.
The commercials about my illness: are non-existent, which is almost good, because most common information about them is completely false and I’d rather people have no knowledge and come to me with questions, than to have a falsely constructed preconceived idea and think they already know everything because “the television said so.”
Some things I really miss doing since I was diagnosed are: driving; getting lost in a drawing; walking normally/significant distances; laughing without consequences; visiting loved ones without having to plan for it a week or more in advance; being spontaneous…
It was really hard to have to give up: my independence.
A new hobby I have taken up since my diagnosis is: watching concerts on DVD; reading shorter things like articles and magazines; audiobooks; public blogging; painting; zentangles.
If I could have one day of feeling normal again I would: RUN. FREAKING. EVERYWHERE.
My illness has taught me: patience; acceptance; mindfulness; the importance of perspective; compassion; that I am more than what I can do for others; that I am more than what I “do,” period.
Want to know a secret? One thing people say that gets under my skin is: when people attempt to relate by comparing situations that in absolutely no way are similar to living with severe illness. You don’t see me claiming to know “just what it’s like” to lose a child, do you?
But I love it when people: know how to fight for what they want; I respect that.
My favorite motto, scripture, quote that gets me through tough times is:
“It is the greatest mistake of all to do nothing because you can do only little; do what you can.” (Sydney Smith)
“When nature moves swiftly, it destroys.” (David Bate)
“Smile, breathe, and go slowly.” (Thich Nhat Hanh)
“But He said to me, ‘My grace is sufficient for you, for My power is made perfect in weakness.” (2 Cor 12:9)
I can deal with anything as long as I remember that whatever I need on any given day, it will be available to me. I believe the Universe looks out for us, and that there will always be enough, until there isn’t. Like Thich Nhat Hanh says, when conditions are sufficient, things manifest; when conditions are not sufficient, these manifestations withdraw.
When someone is diagnosed I’d like to tell them: that their life isn’t over. And to properly educate themselves about the illness. As far as M.E.: Do not listen to anyone that says you “just need more exercise” because that one mistake can change the course of the entire disease. As for Lyme: If someone even mentions the phrase “post lyme syndrome,” claims you can’t have it because the test was negative/you didn’t have the rash, or claims that your symptoms must be something else just because you’ve already had the standard one month of antibiotics, get as far away from them as possible, order an IGeneX kit, and find an educated Lyme-literate physician.
Something that has surprised me about living with an illness is: (1) how many people there are who want to blame YOU for being sick, because the thought of anything happening outside of their control terrifies them; (2) how many people abandon you when you get worse, for much the same reason; but also (3) how much some people are truly willing to help, and (4) how your closest friends will find a way to keep in touch with you.
The nicest thing someone did for me when I wasn’t feeling well was: not blame me for the disease worsening; cook dinner for me; bring me back food from a restaurant: clean my house; spend hours drawing things for me; mail me CDs and letters and tea without any expectations that I’d reply (because often I can’t); insert many more things here, because I’ve been truly, truly blessed with support.
I’m involved with Invisible Illness Week because: I think filling out this survey will help others feel less alone.
The fact that you read this list makes me feel: like someone cares.
Find out more about Invisible Illness Awareness Week at their website. In particular, you can sign up for their updates to receive a free chronic illness e-book on “263 ways to do more than ‘just get by'”! I’ve browsed through it and it has a little bit of something for everyone.
♥ a rainbow at night
last updated 2014, December 19th
I was going to concoct a more drawn-out post explaining why I’m not participating in any of the awareness campaigns of May concerning my illnesses…but then I came upon the realization that I don’t owe anyone justification for my actions–or “wise inaction,” as it were–and I am comforted by the knowledge that many other people are feeling the same way.
For those who can advocate–and I do it at random, it definitely has its purpose, particularly in our government to let them know we’re still here–that is more than fine. If it gives you purpose, and belonging, and you feel pulled toward it, then do so.
For others like myself, I feel my entire life is an advocacy campaign. I don’t need a month, or a day: I get 365 days, 7 days a week, 24 hours a day, of this is what this disease does.
Pay attention to how I got this, and how hard it is for me to get my health back, so you can avoid it. Know that I was just like you, once. Know that I didn’t think it could’ve happened to me, either. That’s the biggest advocacy I can do.
Talking about Lyme disease or myalgic encephalomyelitis every second of every day for a month and nothing coming of it–because people who have their minds made up are NOT willing to hear anything else–is not going to help me OR anyone else, at all. I am not my disease. I am not Lyme disease, or mycoplasma, or myalgic encephalomyelitis, or autonomic neuropathy, or dystonia. They’re just things that have passed into my life to help shape and change it into something else. That’s all.
I’ve spent the past decade as an advocate, and I think I’ve done my part. In my absence there will be others. I personally think people learn more if you’re not yelling at them in desperation, but that might just be my personal experience. I’ve been blessed to help several people find out they had Lyme disease, for example, and it had nothing to do with advocacy. You can’t force the information on anyone: If they want to know, they will seek. And if they’re interested, I am here.
So instead of advocacy, myself and several, several others are focusing instead on what makes us feel normal.
Sure, our every waking moment may be imposed upon by symptoms and dysfunction, but that is not all we are. No matter how sick I’ve ever gotten, nor how sick I will ever be, there’s always more to me than an illness. This blog has been my health diary, yes, but I don’t want anyone to get the idea that this is all I am or all I do. I have friends and family and pets and hobbies and interests just like anyone else. And I am an artist. Not because the title makes me feel important, but because at my core, that’s how I express myself, it’s who I become when my physical limitations allow.
“Every job is a self-portrait of the person who did it. Autograph your work with excellence.”
So, there will be no post specifically about my conditions (although I did finish the “What is M.E.?” section a while back). It’s time to cultivate the parts of my life that inspire and enhance, that make me feel human and normal, not advertise what makes my life a living hell for the other 90% of the day, mostly to people who already know what I go through, anyway. And I’m so glad to know I’m not alone in this.
I’ll leave you with this link: 60 Ways To Make Life Simple Again
♥ a rainbow at night
These two topics complement each other in an unexpected way.
First, the recent death of fellow myalgic encephalomyelitis sufferer (or person with M.E., if you prefer) Emily Collingridge has shaken me, and I’m ready to be honest about why. Usually I would skip this part and post the conclusion of my thoughts, but it’d probably be therapeutic for myself and for those reading (whoever you are) to read a different part of the process.
I have many friends with either M.E. or what is supposedly M.E., that have never known the level of sick that even I have, much less something like what Emily endured in her final years. And that’s good, really! But it’s scary to think that this could be me, because of my susceptibility to this level of sickness. (And goodness knows not anytime soon, because she had the illness twenty-four years and I’m just at ten, but…) It’s not even the death itself, but the way it happens.
Most illnesses so severe will take you out quicker than this. There aren’t many that drag on and on in such a way… Professor Mark Loveless served as Medical Director of HIV/AIDS Programs at Oregon Health Sciences University, and in 1995 he said in his Congressional Briefing that someone with M.E. “feels effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” It broke my heart to hear of her suffering so much, for so long, and, just like Sophia, with her knowing that if she got hospitalized it’d be the worst possible thing to happen… Then sure enough…
I wonder if they’ll have hospice options for people like us in the future.
My “Lymie” friends say that even when they were at their absolute sickest with Lyme disease, they could still listen to music softly or watch television with sunglasses on, and they can’t imagine being that ill and suffering that much, not being able to do anything whatsoever. I can’t imagine it, either. I was only like that for a short amount of time, my symptoms being exacerbated by the trauma of those additional infections, and it just sucks all the happiness out of you; being unable to listen to music, in my case, was particularly difficult. How do you cope with the pain of hearing someone with the same disease as you–your sister or brother in this struggle–enduring that for so long, to be on morphine from so much pain, only to not make it through?
Had she not had the illness for twenty-four years, she likely would have been able to bounce back to a less-afflicted state of sickness as she previously had; as many do, going in and out of the severity levels. When you get it young, like Emily did, like I did (though certainly not as young as six years old), you usually do experience a remission; most, at around four years after the onset. A lot of people stabilize after that. Most stabilize after that, actually, into a moderate or mild affliction. It’s just this 25-30% that get it really, really bad, and it continues to progress over time; almost all the deaths occur from this group.
The thing is, I started this blog with severe M.E.–my condition having been worsened by secondary infections–and I was very privileged a couple of months ago to remove the “severe” classification from my blog description: from“Chronicling a very special way of life, that of someone living with severe M.E.,” to “living with M.E.” I remember a year ago, just wanting to be able to brush my teeth whilst standing up. Now I have a chance to get better still than I already have, but if I even so much as look outside, I can’t help but be reminded of all the people who can’t even do that, due to this disease. There’s certainly some degree of survivor’s guilt, here.
In my day to day life, it’s not often I have to really think of the M.E. anymore, because the things I do to keep it in check are just routine, after all this time. Really, fighting the Lyme disease is my focus and takes up most of my energy, but after hearing of this, it brought me back to the reality that even once I get the Lyme subdued, I’ll still have this terrible, terrible, disease.
My niece, who I live with, has been sick with a viral-induced cough, and I’ve been thinking, at least it’s not the flu (which would hospitalize me) so it wouldn’t be that serious if I did accidentally catch it… But then I remembered that it was a viral ear infection that ultimately made my M.E. relapse five years ago. And it was a viral ear infection that also sent Sophia Mirza into irreversible relapse, all the way to her death. So there really is no such thing as a “better” virus when you have ME. On top of it all, there’s now the paranoia of living with an immunodeficiency disease, and the anxiety of knowing the consequences if I were to catch something so minuscule…
It was a lot of triggers at once.
And it came at a particularly awkward time, after reading an article about a woman with muscular dystrophy who has found a way to enjoy painting, despite the muscle weakness:
“With her condition, most people would just be vegetating, watching TV, enjoying checks from the state. But she does a lot of work. She stays strong.”
I was exasperated with anger.
It’s just another example of how you’re only allowed to be a “worthy” disabled person if you still do things. If you can’t, if you’re really, really sick, then you’re just “vegetating and watching tv and enjoy checks from the state.” Nevermind that we need those “checks from the state” to survive, or that watching television might be the only relief we have from the every day, nonstop suffering…
People don’t want to hear of the severely disabled. They only want to hear of people who are disabled “and yet still.” They don’t want to hear of people who are bedbound to the point of being unable to do anything at all but exist, like so many people I know; like the person I have been and will be again one day; like Emily, when she became too ill to even eat on her own.
I found that article because I was wondering if there were any tricks to navigating muscle weakness that might allow me to still do artwork, besides just taking an excruciating amount of time to complete things. With its similar progressive muscle weakness, muscular dystrophy was the closest thing to myalgic encephalomyelitis I could think of that might have information out there about how to manage it while being an artist.
Then I find an article whose interviewer says that if I can’t do it, if I can’t “and yet still,” I’m just lazy and not strong enough in character!?
It was infuriating, and the reason I wrote about “Media Portrayals of Resilience in Disability and Illness” two years ago. I really don’t take it as a compliment anymore when people say I’m “so strong” because I’m still doing something…
Because what, when my M.E. gets to the point that I can only lie there and breathe, then I don’t matter anymore? Am I still strong if I cannot do? Are we not still worthy? It’s awful being reminded–and now, of all times–that there are people out there who think you, as a human being living with a disability, are inferior, weak, and lazy, for the sole reason that you dare to exist without also inspiring them.
As fellow blogger and severe M.E. sufferer Laurel stated in her post, “In Memory of Emily,” she embodied “strength, spirit and determination–all of which she continued to demonstrate to the very end,” and which was not determined by how much she did.
She did do a lot when she was physically able, even though it took so much out of her. There were causes she thought important enough to spend her very valuable resources on, but when she became unable to continuing doing in her last years, that did not make her any less strong or determined.
I never knew Emily personally, though I was a big fan of her her book for sufferers of severe myalgic encephalomyelitis, and linked to it here several times. It is an indispensable aid to those forced to navigate these unstable waters, one that could have only come from someone who knew its unpredictability and devastation first hand.
In closing, I would ask you to take the time to read Emily’s Appeal, which she wrote over the course of several weeks while she was still able. Additionally, Emily’s story, from her own words, can be found here.
♥ a rainbow at night
M.E. is Real: The True Facts Doctors and Journalists Need to Know
Told by a person with M.E., it’s very to-the-point and highly, highly worth sharing with all your friends and family, particularly those who might not understand the gravity of what you’re going through. You can watch it above, or (and preferably), click here to watch it at Get Well From ME and/or read a transcript of the video.
“People with M.E. are more likely to die younger, including from heart, kidney, and neurodegenerative diseases, and cancer. More people with M.E. commit suicide, often because they are not offered the hope and support they desperately need, but are instead often maligned by medics, the media, and society, as malingerers or “not really ill,” when they are desperately ill and may often be literally bedbound for many years. Lynn Gilderdale was severely ill with M.E. since she was fourteen, and in her thirties she took her own life. Before she died, Daily Mail journalist Gill Swain saw her, and said afterwards:
‘I had seen African children suffering from starvation;
met people dying of AIDS;
patients paralyzed from the neck down;
others in the last stages of terminal cancer.
But I had never seen a living person as desperately ill as Lynn.’ ”
I’m not one of those people who tries to find something wrong with everything. I just wanted one thing, and I didn’t find it.
First, none of this will make sense if you don’t understand this fact: Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (M.E.) are two distinct entities. If you look on my site’s sidebar, you’ll find this, which I’ll repost:
“Various terms are often used interchangeably with CFS. CFS is the preferred term because it has an internationally accepted case definition that is used in research and clinical settings.
The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that does not currently exist.
Chronic active Epstein-Barr virus (EBV) infection (chronic mononucleosis) was thought to be the cause of CFS during the 1980s, and this association is now known to be rare.
However, post-infection fatigue syndromes have been associated with EBV and other infectious agents. The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.” (United States Centers for Disease Control and Prevention, 2010)
This brings us two points:
- CFS has an internationally accepted case definition. This definition is based upon the symptom of fatigue without a known cause. All other neuroimmune symptoms are secondary and non-essential for diagnosis. So, if you have unexplained fatigue with sore throat and lymph nodes, headache, and post-exertional exhaustion, while another person has unexplained fatigue with poor sleep and memory, with muscle and joint pain, you both have the same illness as far as “CFS” is concerned, despite fatigue being the only thing you have in common.
- Myalgic encephalomyelitis also has a distinct case definition, accompanied by neurologic and muscular signs, and distinct from that of CFS. The best definition for M.E. is Ramsay’s definition, which describes the key feature being “muscle fatigability, whereby, even after a minor degree of physical effort, three, four or five days, or longer elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis.” He goes on to write, “Without it, I would be unwilling to diagnose a patient as suffering from ME, but it is most important to stress the fact that cases of ME of mild or even moderate severity may have normal muscle power in a remission. In such cases, tests for muscle power should be repeated after exercise” (Ramsay, A. . Myalgic encephalomyelitis and postviral fatigue states: The saga of Royal Free Disease. [2nd ed.]. London).
After several outbreaks of what was undoubtedly M.E., the CDC did a mediocre investigation (if you can call sending one person to collect a few blood samples then announcing “mass hysteria” an investigation) and invented this “new” syndrome of chronic fatigue. Over the past 30 years, it’s become a catch-all group for anyone suffering from fatigue for which no cause can be found, which includes anyone with undiagnosed cancer, hypothyroidism, depression, Lyme disease, myalgic encephalomyelitis, and various other physical and psychiatric disorders that have chronic fatigue as a symptom. The only thing any of these people have in common, is that they are very tired, and are very sick; some of them are dying due to misdiagnosis.
“In a study of the Reeves empirical criteria [for CFS], Jason et al. reported that 38% of patients diagnosed with Major Depressive Disorder were misclassified as having CFS and only 10% of patients identified as having CFS actually had ME” (Jason, L., Najar, N., Porter, N., & Reh, C. . Evaluating the Centers for Disease Control’s Empirical Chronic Fatigue Syndrome Case Definition. Journal of Disability Policy Studies, 20, 93-100. doi:10.1177/1044207308325995).
Needless to say, it’s a very, very poor category to fall into when you’re sick and trying to cling to life. I’ll leave the conspiracy theories out of this, though nearly everyone has an opinion about how it came to happen that a deadly neuroimmune disease got classified as the same thing as a syndrome with “general unwellness and fatigue” as the main symptom. There’s much debate over if other pathogens can trigger M.E., but it’s usually described as having a viral onset and is classified as such by the World Health Organization under “post-viral fatigue syndrome”; it is known to be contagious in the beginning stages. Cort Johnson wrote that Dr. Byron Hyde, a world authority on M.E. and contributor to the ICC, mentioned having “reports of over sixty” M.E. outbreaks from just 1988 to 2003, which were “no longer figured in the literature” and “were not given any mention in the ICC”. Additionally, these criteria have completely left out the main symptom, which is an abnormally delayed muscle recovery after doing trivial things.
The core symptom of M.E. is in the muscles. How is this new international definition any better, if this main symptom is not the focus?
I strongly believe people with chronic Lyme disease are still going to be misdiagnosed with this new definition, which still focuses on “physical and/or cognitive fatiguability in response to exertion.” It includes “neuroimmune exhaustion,” now, but did you know that Lyme disease also causes an immune system dysfunction 24-48 hours after activity? “…[T-cell function] will depress for 12 to 24+ hours after exercise, but then rebound” (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses, Joseph J. Burrascano Jr, MD. September 2008). I’d imagine other chronic infections can do this, too.
In this new paper, they source the recent CFS study about spinal proteins which claims to distinguish CFS patients from “Post-treatment Lyme disease,” but the fact that they are even mentioning the phrase “Post-treatment Lyme disease” is horrifying, as such a category doesn’t exist: Ongoing infection–which has been proven--is the cause of so-called “post treatment” Lyme symptoms, and to not acknowledge this represents a greatly detrimental misunderstanding on their part, and to their efforts. You cannot afford to not understand something that shares so many symptoms with the disease you are studying. Also:
How can you possibly quote a study that uses the same flawed definition of CFS you’re trying to protest, as a support for your paper?? That is a circular argument, and completely unsound.
Thanks to a link at THE NICEGUIDELINES BLOG, I’ve been able to view the full paper that was ultimately published in the Journal of Internal Medicine. I recommend you visit there and read the paper for yourself, but here is the proposed new definition, via photo:
All of that said, I really do think this new definition is a huge step in the right direction. We’ve all been begging for a new definition for years. I’m a big fan of the Nightingale definition, but it’s not commonly used. I believe the Canadian Consensus Criteria were developed in 2002? It’s been almost a decade since we’ve seen any new definition, and if it had to be anything, I’d surely choose this one over the mockery of “CFS/ME” definitions that exist in other countries, and “CFS” definition we have here in the United States. It will help eliminate some of the other misdiagnoses, especially of psychiatric origin. If this becomes the new “CFS,” it will make sense to use terms like “CFS/ME” and “ME/CFS”; while, as of right now, that makes as much sense as saying “lung cancer/chronic cough sydnrome” or “HIV/chronic sinus infections.” In other words, none at all, and it’s extremely offensive to those who have it.
At least the definition does focus more on the rapid loss of energy that occurs, physically, which does include the muscles… I just highly, highly dislike the “and/or cognitive fatiguability” part, which means you can still be included even if you don’t experience rapid muscle fatigue. Your brain experiencing cognitive dysfunction in response to continued use isn’t the same as your muscles becoming weakened and eventually paralyzed with continued use.
I don’t know of many chronic illnesses in which you wouldn’t become more exhausted and ill after strenuous mental activity. But there isn’t a single other disease entity with the specific pattern of muscle fatigue exhibited by people with myalgic encephalomyelitis.
In addition to the obvious overlap with Lyme disease: In my own family I have people with ill-defined chronic disease who become extremely mentally fatigued as the evening wears on, and if someone used these new international criteria, they would qualify as having M.E. (or this new term of “atypical M.E”) despite absolutely not actually having it. I see first-hand where these criteria will be a problem in the future. But it’s at least a step, right? Comments are welcome.
♥ a rainbow at night
I always said I’d do this one day. Post a picture of all the medicine I have, about a third of which I must take every day; a third of which are as-needed/to save me from worse things; and a third of which I take several times per week depending on symptoms. But I never did, and getting to the bottom of why is almost more of a journey than I’m prepared to write about. I still feel ashamed.
I feel ashamed that I need so many medications while the majority of people in my age bracket might take one or two, or maybe none at all.
I feel scared at the reality that if you were to take them all away from me, I would crumble, my body becoming a non-functioning mess, encompassed by disease before it slowly withered away; it’s painful to be reminded of how much I need them.
I feel resentment at myself, because a little part of me thinks that posting this only sends the message, Hey, look at all this medicine I take, I must be really bad off if I need all this medicine, doesn’t this make me seem attention-seeking, and that it will attract a more vicious crowd. Because that’s not what this is about and “sick” is not all that I am by a long-shot…
But it’s impossible to separate yourself from what is–a human being living with chronic disease–when every three hours you have to remember to pop one of these pills, “or else.”
I feel anger, and guilt, and any other number of emotions, after constantly being told, “You can’t possibly need that many pills. I don’t like taking pills because they have side effects and they might cause something else to happen; I just don’t know how you take all of that!”
Well, it must be nice to have that choice of whether or not you get to take something, because not everyone has that. I certainly don’t. Not if I want to function or be able to do anything at all, like breathe or eat or walk, on a good day; not if I want to give myself the best chance at having a “normal” life, one that will never, ever be normal anyway.
These are all of my current prescriptions. There are twenty-five of them here, that are still useful and/or necessary. These are excluding the ones I’ve taken in the past but no longer need, such as Nasonex, Ambien, Doxycycline, Sporanox, Nizoral, et cetera…
This, after years of dwindling them down to the ones that genuinely do something.
The main reason I remember wanting to do this, was specifically because I had a problem with it, and I don’t like anything holding power over me. I didn’t want to show anyone this post. Sure, when my family and friends visit, they see the eight or so bottles I have stacked on top of my bedside table. And they see me grab a bottle or two in the middle of our conversations, either because it’s time for another dose of something, or symptoms have arisen. But it’s easy to allow those very close to you to see what you go through. It’s something else entirely to disclose it to the world and expose yourself to scrutiny. But…
This is the pharmaceutical side of having myalgic encephalomyelitis, a disabling neuroimmune disease that has no cure, only symptom-based management.
This is what it’s really like having chronic, late stage Lyme disease, and bartonellosis, two potentially-fatal bacterial infections of the nervous system that may persist after months, or, in many cases, years of attempted treatment.
And this is the shame resulting from years of subtle and not-so-subtle messages from society, friends, even family members, that say, “Be quiet about your disease, lest you make the rest of us uncomfortable.”
People need to know all that these diseases can do, not just the side that makes the newspapers because someone “miraculously recovered.” Pardon me if I don’t want to be quiet about it anymore.
♥ a rainbow at night
By: Dr John H Greensmith,
ME Free For All.org
“The reason I am absolutely certain that Yvette Cooper’s Consultant cannot reliably say that 90% of people with Myalgic Encephalomyelitis make a full recovery is that no one in the world knows how many people have M.E. The shocking reality is that there has never been an agreed figure for M.E. sufferers. It follows, therefore, that no one could say how any percentage fares at all. This doesn’t seem to stop people from doing so.”
Well I wouldn’t agree completely with that. It’s a general consensus in the M.E. world that about 25% are severely affected, while the category referred to as “most” actually teeter in and out of various categories.
“Any estimates of the hybrid ‘Chronic Fatigue Syndrome/Myalgic Encephalomyelitis’ (CFS/ME), which is a fudged collective diagnostic term for several conditions with chronic fatigue (which M.E. sufferers do not routinely have), [and excludes] cardinal symptoms which M.E sufferers do have, makes matters worse… Experimental research samples, from which conclusions are [extended] to M.E. sufferers, may not have contained [even] a single person with this dreadfully debilitating neurological condition, which is being denied its own identity. Yet this is how too many doctors and researchers, who ought to know better from school level statistics, persist in proceeding.”
“It is not always certain that people said to have had M.E. did actually have it but, for example, may have had a particularly severe infection of Epstein-Barr Virus (Glandular Fever), which can take 2-3 years to get over. Yvette Cooper may have been among these.”
It’s nice finding doctors that still fight for this distinction, thus understand why today’s research is so construed. By the way, this was in response to Yvette Cooper’s statement in this article.
“It wasn’t a consideration. I was off work for a year with it, then worked part-time for another two years so it did take a long time to recover. But my consultant did say that over 90% [of ME patients] made a full recovery, and it never came back. It’s one of those things you hope people suffering from it now will realise.“
. . .
a rainbow at night