Explaining to Those with “ME/CFS” That They Cannot Have Both

ME CFS SEID criteria-only

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):

  1. They’re just trying to cause a problem where there isn’t one.
  2. They’re “those advocacy-type people” who “make a big deal out of everything.”
  3. They just want it to sound more serious, when it’s actually the same illness.
  4. 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

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.”

8 thoughts on “Explaining to Those with “ME/CFS” That They Cannot Have Both

  1. I agree with a lot of it, and I do think there needs to be a better distinction between ME and CFS. I think both of them are labels for conditions that aren’t at all understood and the true causes haven’t been widely found or accepted. It’s probably because they’re both such difficult illnesses for doctors to understand and because they share a lot of the same features – being invisible and the crushing fatigue, that they get lumped together.

    Medically they shouldn’t be lumped together at all, as you said, they’re different things. But in the world of the media I think it’s helpful for people as separate groups to join together as one force for change. I think it also helps people describe their illness, to be able to use whatever labels they feel comfortable using.

    On my Twitter description I say I’m a ME / CFS / Lyme patient. This is because at first I had ME and then I found I had Lyme disease plus a whole bunch of other stuff, and now after extensive treatment I wouldn’t meet the ME criteria anymore, but I would probably meet the CFS one. I identify with all of those labels and all of those diseases. I tweet about all those three areas and I want people with each of those three labels to be able to find me with searches.

    I think we all need to stick together with these diseases, when we pick apart and separate different people with different presentations we’re allowing ourselves to be divided and conquered. Sure, divide for the purpose of medical research, but in everyday language and public perception, I think we’re stronger together.


    1. Hi Louise, I’m sorry it’s taken me so long to get back with you, I had to figure out how to convey my message properly. I’m glad we already agree on the need for distinction between ME and CFS. I, too, use all descriptions of the illness on social media to get as many people involved as possible, because we’re scattered everywhere within all three groups: There’s nothing wrong with that, and when people do get to my site they have access to information that they can use to further educate themselves and find doctors to facilitate or confirm their approach. The problem I saw in your message, was this:

      “I think it also helps people describe their illness, to be able to use whatever labels they feel comfortable using.”

      I can only interpret that to be harmful, and something that would not be acceptable in any other community. If I turn this around, it’d be like if I went up to you and said, “I met all the criteria for Lyme disease, but after treating a heart defect, I no longer satisfy a Lyme diagnosis anymore…but I’m still going to say I have Lyme disease because I identify with it after my misdiagnosis.”

      M.E. is not a set of criteria you meet until you explain your symptoms with something else: That’s CFS. It’s a disease you either have or do not have; any other illness you get will not affect your diagnosis of M.E., which is a viral-onset neurological disease with *extremely* characteristic muscular symptoms. As someone who got both at different times, I can affirmatively tell you: Post-viral myalgic encephalomyelitis is not the same as an infection with the bacteria borrelia burgdorferi. Treating Lyme will offer relief (even potentially a cure!) from Lyme-specific symptoms and halt additional neurological damage, but M.E. doesn’t go *anywhere.* (And I’m really, really glad you found out you had Lyme in a place where there’s so little information about it–that’s amazing!)

      I also disagree that by separating people with different diseases we’re doing anything wrong. People are *supposed* to be separated if they have different illnesses, or people will continue to suffer needlessly and even die from misdiagnosis, because until they know we’re not all dealing with the same illnesses, they’ll never demand proper treatment for themselves. I think it’s our job to educate people about facts many have never heard of, so that they can make informed decisions with their doctors about where to go with their care.

      It’s also not mutually exclusive to know that these diseases are different and still be able to stick together, as even evidenced by the conversation above! Renee was diagnosed with CFS while Brooke and myself have M.E.–we all know the truth and we’re all friends who advocate the facts! It is perfectly acceptable to be educated, not spread misinformation, and advocate together…but when this turns into people with hundreds of misdiagnoses, telling people with an existing disease that we all just need to “get along,” merge together, and ignore everything else… That’s not acceptable. People with different types of cancer understand that there are different subsets with different outcomes, yet all are still able to support each other because all have serious illness. And yet, there’d be quite an uprising if people with treatable skin cancer suddenly started telling everyone they had pancreatic cancer. Or, we wouldn’t dare accept it if people with peripheral neuropathy started saying they had ALS. It doesn’t make sense to tell people to describe their illness in whatever way they “want.”

      I asked for input from others, and this is what they wanted to add:
      “You can’t just relate to a disease. You either have it or you don’t. You either meet the diagnostic criteria, or you don’t.”

      “It reminds me of how people with M.E. compare it to MS. We say M.E. is a close cousin to MS, and they’re very similar. But we *don’t* say we have MS, or use M.E./MS. That would not only be untrue, but if it became the accepted norm it could actually harm MS (and M.E.) research. Do I relate to a huge portion of an MS patient’s symptoms? Absolutely. A lot of our symptoms are even caused by the same physical damage (demyelination, lesions on the brain, etc). But I would never claim to have MS. I’m all for freedom of speech, tolerance/understanding of people’s decisions and feelings, etc, but sometimes people take it too far. You can’t change basic facts, and you can’t claim an illness just because you feel comfortable using the label.”

      If you do have confusion over the M.E. and CFS thing, there are lots of links above (below the post) to help explain their core differences–you may have been told different things about them, being in the UK. And I’m also doing a series, now, starting with their history–I just posted part one: The Parts of ME: Introduction & History: How did we get here?.

      After typing all of this, my muscles are burning, and if I continue to use them, they’ll become paralyzed. That is ME.


  2. Hi, I agree with your message that ME is a specific thing and that misdiagnoses are misdiagnoses. If it was a misdiagnosis and not a comorbid condition, it means you never had the first thing after all, it was the second thing instead. Good explanation; thanks. :)

    I think you might misunderstand how some people are using ME/CFS. I have ME. My doctor diagnosed me with CFS. Newspeople search for CFS, not typically ME. Doctors even that research this say CFS. To most doctors, ME implies a different type of inflammation than the type I currently have (that would be the type I probably had during onset). I don’t think the terms ME and CFS are the same, however, and I am not using them as equivalent with my slash. I am using them to say I have both labels (the one I gave myself, because I stubbornly think CFS is a confusing name and refuse to give it full credit, and the other the doctor gave me, because they have to use something the insurance company will bill and they don’t know how to find one that says ME or don’t think they should use it because, wrong inflammation type or whatever).

    I agree with you that “CFS” is not really a thing that should be diagnosed. I would say the “CFS” does not have any meaning independent of “ME”. We have some diagnostic codes for “random fatigue that might turn out to be thyroid or MS or whatever” and they are different codes than the code for CFS. As far as I can tell, CFS was invented because some people had ME, and the doctors didn’t know what they had and didn’t want to take advice to classify it like ME. So it exists only because of the mistreatment of ME patients, not because doctors need yet another code for fatigue or because it’s actually logical to think of fatigue patients collectively as a single “syndrome”. (We don’t do that for fever, or rashes, or usually pain, or even headache. We do have a code for “fever of unknown origin”, but it’s not treated like a syndrome: we know it’s potentially from many different things.)

    PS, the way I understand and use PEM, is muscle weakness, and flulike sick feelings, and other characteristic symptoms of my disease, delayed after activity, and I think this is a pretty typical usage for patients (though some I think use it also for the immediate effects they get)–but I don’t think NIH or certain other researchers understand this.

    PPS, SEID has orthostatic intolerance as the other semi-optional sign with cognitive dysfunction (one is required but it’s not required to be both). This is a circulatory impairment, although it is a limited one (there are others). However, shouldn’t there be a optional icon thing in the circulatory impairment box in your chart? Or a modified optional icon?


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