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Occupy CFS is now Occupy M.E.

I thought long and hard about the change, and would like to share my reasoning.

First of all, CFS is a crappy name. We all hate it. CFS is not only a poor descriptor of our disease, but it has contributed to the pejorative view of our disease. How many times has someone said to you, “I get tired too.” Or had an encounter with a doctor who says, “You don’t look tired.” The name CFS and the psychogenic theory attached to it are major contributors in the poor state of clinical care and research.

Second, the National Academy of Medicine (formerly the Institute of Medicine) report concluded, “The committee agrees that the term ‘chronic fatigue syndrome’ can result in stigmatization and trivialization and should no longer be used as the name of this illness.” (p. 227) (emphasis added). I agree.

So why didn’t I go with Systemic Exertion Intolerance Disease (SEID)? Basically, because no one likes it. There’s no momentum behind the name. No one is using the name. And I am not aware of any effort to get recognition of the name as a valid replacement for “CFS”.

Why did I go with ME, when the National Academy’s report said, “the term ‘encephalomyelitis’ is not well supported by the evidence” and does not convey “the full complexity of this disorder.” (p. 227) I chose to stick with myalgic encephalomyelitis simply because it is the best option available at this time. There is a history of its use in the literature, both on its own and as ME/CFS, and has the beginning of acceptance by the organizations and individuals using ME/CFS.

Why not ME/CFS, since that seems to be the most common name in usage in the US? Because it perpetuates the name CFS, and there are huge political and scientific implications for that. I think it is time to make a clean break, and transition to a new name.

ME is not the perfect name. It has downsides. But I think it’s the best option on the table. For years, some advocates and organizations have argued that we should not use ME if the scientific and medical communities in the US won’t use it. The idea was to wait until science understood the pathogenesis of the disease, and that would give us the right name. I used to be one of the advocates who thought we should wait.

Not any more. I’ve waited twenty years, and others have waited longer. CFS has got to go. That’s all there is to it. Of the other options, ME is the best we’ve got. Occupy ME it is.

If you subscribe to the blog, you will continue to get each new post in your email inbox. If you don’t subscribe, you can do so at the top of the right side of the page. I do not use emails for any purpose besides the subscription to the posts.

The entire Occupy CFS site has been migrated to, and all the internal links have been updated. In addition, will automatically point to, so you should still be able to find old posts. I’ve tested the site and it all seems to be working smoothly, but please let me know if you find any hiccups.

Nothing else about the blog or my advocacy has changed, except the name. But this is a big change, and its time has come. I hope you approve.

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26 Responses to Naming

  1. Tillie CLAPP says:

    Good show! You be a leader and show the way.

  2. Don Gillard says:

    Perfectly posited, Jennie.

    I’ve been of the same mind for some time, and equally so on SEID.

  3. Robert Morley says:

    I used to use CFS for myself and when talking to friends, and ME/CFS within the community. As mentioned in the comments of your previous post, fatigue is an overwhelming symptom of the disease for me, and so CFS fit well enough, even if it didn’t cover all the rest of the symptoms.

    Like you, my usage of terms is changing. Now, I’m using ME/CFS more often, and sometimes just ME. I agree completely with the IOM/NAM’s reasoning that the “encephalomyelitis” wasn’t well-documented or proven to be present in all patients fitting any given symptom criteria, and so I hesitated.

    My reasoning is very similar to yours, but I think not quite identical. The way I see it, ME is the “least wrong” description we have. No, it doesn’t cover the fatigue, but apparently, that’s not as overwhelming of a symptom for some as it is for me. At least ME doesn’t put the focus on just one symptom, though. I’m pretty sure we all get myalgia, and the addition of “encephalomyelitis” indicates that that’s not all there is to it. You can’t say the same about CFS, and even SEID really only implies more to a medical professional, and only if they’re really parsing the entire name…even then, I think it has a lot of the same shortcomings as CFS.

    Anyway, TL/DR: I’m with you on the name change!

  4. Well, you do what you like – it’s your blog!

    I’m not in favor – ME has no history in the States. And it looks like ‘me’ to too many people: I have ‘me.’ And you have to both spell it and explain it every single time.

    I was willing to live with ME/CFS. And all the people in Europe who say we don’t have what they have make me want to throw up, so I’m not sure I want to be labeled like them. The E has also been used for myelopathy (or something like that – can’t remember) and the whole combination is too close to things like MS.

    That said, having had this crap for 27 years as CFS was something I’m used to. I STILL had to explain too much all the time.

    I don’t care any more. I can’t – takes too much time and energy for a fight over a name when I can barely get my brain in gear for an hour or two a day.

    I hope you’re right. I hope it helps. I know you didn’t make the decision lightly – and I trust you to make as good a decision as you can.

    If they can just figure it out and take it away, I don’t care what they call it. My greatest fear is that it is not a single disease, and that they won’t ever be able to fix me.

    I’m sure the day to day won’t change that much, here or in the real world. I’m willing to see how it goes – because I’ve never had a real choice.

    My only choice is to keep writing fiction about a character who has it – in 2005; so I don’t have to change much (I use ME/CFS and CFS interchangeably in Pride’s Children). It will have to do. Fiction is MY contribution to the fight.

    • Robert Morley says:

      “My greatest fear is that it is not a single disease, and that they won’t ever be able to fix me.”

      I think a lot of us have that fear. Looking at things like the Rituximab trials, one has to wonder why it has no effect on 1/3 of the participants. Would I be in that 1/3? What if I am? If 2/3 of people are treated or even cured by it, what happens to the remaining 1/3? We already have a hard time getting attention to our disease and belief in it. How much stronger would the psychiatric lobby hit us if medications that help all the other ME/CFS patients don’t help the remainder? It’s not a fun thought!

      • Waiting says:

        Agree that the uncertainty is frightening.

        However, lots of diseases have multiple medications because each works for some & not for others (cancer, IBS, heart, etc.). I can’t recall the specifics (of course!), but the success rates for most
        drugs are actually very often very low.

  5. Lynn says:

    I have been a lurker for quite a while. I definitely approve!


  6. Chris says:

    I think I approve, though suspect it may trigger difficulties here and there–but as you rightly point out, so do the other possible names in play. There have been several recent studies suggesting that there is a low-level inflammatory process going on within our immune systems, which of course includes the brain, so time may endorse the name, though I have a sneaking liking for the name Ramsay’s Disease, which both honours a good researcher whose early work was in effect pushed off the rails by the psych movement, and honours us by calling it a “disease,” however variable and insecure. And I rather welcome the closeness to MS, since that is a disease with which we share quite a lot, as several recent papers have pointed out. It is not unknown for a patient diagnosed as having ME to be rediagnosed as MS.

    So a brave decision, and we shall have to wait and see if it sticks and gathers weight.

  7. Gina B says:

    I am very happy to see this post and agree with your thought process. I am now dealing with cancer (pancreatic) and can’t advocate the way I would like to. I just wanted to take a brief moment to thank your for your amazing advocacy for so long. I have always enjoyed your posts as authentic and informative. Fellow ME patients and others that comment, make calls, blog or use any of our limited energy to help each other, thank you too.

  8. Katherine Reynolds says:

    I agree with you. Names matter. I hate CFS and am tired of saying ME aka CFS in some countries. I hate SEID as well. I use M.E. and I’m grateful that these past two years due to mold treatment which I consider a trigger for M.E., I’ve been able to be out in the real world enough to test it. I tell people I have Chronic Fatigue Syndrome; their eyes glaze over. I tell them I have Myalgic Encephalomyelitis, their eyes widen, they say: “That sounds bad, what is it? I explain. They listen, then I quickly throw in the story of how the CDC screwed us all in the 80’s by changing the name to CFS. They shake their heads and say “that sucks.” I say, “yes, it sucks a lot.” I educate, educate and educate some more. People like to talk to me. And it helps that before I got this crap, I talked for a living as a professor of English to hundreds of people a year. I’ve been amazed at how open people are when they see me asking for help and ask what’s wrong in airports. Bingo: awareness raised one person at a time. I think it’s the right move.

  9. Sally Burch says:

    I agree with your reasoning Jennie.
    CFS was never a good name.
    Good move. 🙂

  10. Magdalena says:

    I definitely approve! Big congrats on the new name 🙂

    As always: infinite thanks for everything <3

  11. Lee-Anne says:

    I most definitely approve – and want to thank you for recognizing the need for this. I am one of those guilty of contributing to people’s lack of understanding to the disease. Why? Because I didn’t understand it myself. Because I believed the lies and the stigma around CFS and always played it down.

    But due to my lack of knowledge I didn’t know how to take good care of myself and after 19 years of very mild CFS (because PEM or PE Relapse was the only major symptom) I got full blown, bedridden, I-think-I’m-dead-but-my-eyes-can-still-open M.E.

    And I always wonder, if I knew what I know now, could I have prevented this somehow? I know there are some science saying probably not – it’s still too hard for me to do all the research anyway.

    I agree with you about changing the name due to the stigma because, as a foreigner, I was horrified at the ignorance of the doctors I saw here in the US. Where I’m from it’s at least a recognized disease (maybe at least in the spheres I were). The doctors here wouldn’t see past the fatigue. Yes, had I gone to even more doctors maybe someone would’ve known more but hey, we all know that by the time you manage to get to the first doctor (which is like climbing Mt. Everest in my eyes) you think, I can’t do this again, I’m surely not going to survive. And the irony is, I’m stranded here. I might be much better but I don’t know when I will ever be able to make an international flight again.

    Anyway, being able to read this blog (how ever few times), typing a reply (even though I’m weighing up whether to do this or something else that is important), having my mind working again (most of the time) is one of the greatest joys. And it’s one of the reasons why I’m adamant to my make my little voice known that M.E. DOES EXIST – whether people believe us or not! We have to make our voices heard, for those who can’t, and for those who are where I was one year ago – blissfully unaware of the invisible giant about to attack me.

    If the changes I’ve made in my life to improve my condition can make me one of the very few who get some quality of life back, then who knows what can be done to prevent these full blown outbreaks? It should be recorded! It should be researched! It shouldn’t be accepted that people just vanish like this.

    Every time I fight to just breathe, every time my mind disappears, every time I’m imprisoned in my body that can’t move – I know when I “come back” it’s an opportunity to educate those around me. Just a pity…not all people really want to know… (thanks Katherine Reynolds for your comment, this encourages me to not keep quiet, for each one that does listen it’s one more educated. It was a 95%-recovered severe M.E. sufferer [not sure if we can put a number on this] that educated me on what happened in my body and what I should try, that I believe helped me so quickly. That’s why I know would shouldn’t keep quiet!)

  12. billie moore says:

    Yes, Jennie, it is the right thing to do to jettison “CFS.” Applause, applause!!

    I never use “CFS” anymore at all when explaining the disease. It is “Myalgic Encephalomyelitis, or ME. It is a total-body disease that is extremely serious, but little is known of it because the National Institutes of Health will not fund any but the most token amount of research, and the medical schools do not teach anything about it.” I recommend not explaining ME by saying something like “or it’s sometimes called “chronic fatigue syndrome”; “it used to be called chronic fatigue syndrome”; etc. That will just kill the ME entirely, and people will just focus on CFS.

    Here is part of a four-page letter I sent to the IOM committee in January 2104 in response to requests for comments before the committee started on the IOM report. Some of it addresses Alicia’s point of her having been diagnosed with CFS; so were most people with ME years ago. (I have thought for years that patients could self-diagnose by running through the symtoms of the ICC.)
    What has emerged from these decades of misnaming and sloppy defining (prior to the CCC) is confusion and incorrect diagnoses which included those with psychiatric problems. Four possibilities exist regarding the two terms, ME and CFS:
    1. either these two terms define the same illness; or
    2. ME is a subset of CFS; or
    3. ME and CFS are two entirely different diseases, or
    4. the term “chronic fatigue syndrome” is a false construct and invalid.

    To address the possibilities listed above I start with #4 and state that “chronic fatigue syndrome” does not exist. It is too vague and imprecise a name for a disease with many discrete and measurable symptoms. (You should have in your packet of reading materials a table called, “Myalgic Encephalomyelitis (ME/CFS) Table of Biological Abnormalities, Clinical/Lab Tests and Drugs with Potential for Repurposing” which gives an outstanding overview of abnormalities of the disease we are trying to properly define.) However, because CFS has been in the literature for 25 or more years as a result of the naming in the 1980’s and 1990’s and definitions mentioned above, there is a logical hesitancy to chuck it into the medical wastebasket. But “CFS” must be chucked, and it is my hope that those on this panel will do away with “CFS” and its poor definitions and properly define the disease which is well defined in the CCC and ICC definitions.

    #1 and 3 follow from #4. CFS is a falsely created and defined set of imprecise symptoms; therefore, it is not the same as ME. It is also not a disease that is different from ME. It is not a disease at all.

    Number 2 will take some of your time in discussions, I am sure. However, if you can consider that #4 is true, it, too, becomes a non-possibility: ME cannot be a subset of a non-disease.

    Nevertheless, let me address this point. For 25 or so years this disease has been called chronic fatigue syndrome. Very likely the majority of patients who have been diagnosed with CFS as far back as the 1990’s meet the ICC definition of ME. (At least three studies have shown that this is the case.*) Why were those patients diagnosed with CFS and not ME? Simply because that while their symptoms met the criteria for ME, ME was not being used as a label in the U.S. until the mid-2000’s. Their symptoms had not yet been listed and explained properly until the CCC came along; everything was called CFS. The CCC definition refers to ME as “sometimes called” chronic fatigue syndrome and adopts the combination name, ME/CFS.

    However, what has evolved somehow is the thinking in some quarters that ME is a subset of CFS. No. Some patients have been diagnosed with CFS who do not have ME because of the overly broad CFS definitions still in use (Fukuda, Reeves). But what they really have is unknown because they do not meet the criteria for ME, and “CFS” doesn’t define anything accurately.

    “Chronic fatigue syndrome” is not real. It is a false construct. It is a name that prevents a proper diagnosis of the real disease. ME is a neurologic and immune disease with distinct and measurable abnormalities. ME is not a subset of this oddity “chronic fatigue syndrome.” Please dispense with it and adopt the CCC or ICC definitions, the latter being the more up-to-date and comprehensive of the two. At long last, give this devastating, life-robbing disease a proper name and definition that can be used with confidence by experts and non-experts alike to diagnose and treat it.
    Well, the IOM committee tried to rename it but missed the brass ring for selecting SEID. Anyway, for the foreseeable future, for all the reasons we are aware of, ME will be the best we have. At least it is a serious name.

  13. judith says:

    I have only used ME now for over a year. My analogy is this “look at those electrical wires overhead. when there are breaks in the insulation the electrical current can’t get through and there are outages. some are worse than others so they have three categories. it is called MS . Now look at the Powerhouse and transformers that bring electrical current to the lines. When that is damaged and malfunctioning, you are going to have many of the same symptoms as MS, but there can be more types, like mild, moderate, severe, etc., depending on the damage that resulted from trauma, inflammation or infection, I call that ME. If people do not understand after this explanation, I tried and I will keep trying to spread the word..

  14. Page Tolbert says:

    Bravo. You’re right — there’s no perfect name out there right now. But at least ME has its roots in the UK, where, overall, the disease is taken more seriously.

  15. Karin says:

    Hi Jennie, I’m a lurker from Switzerland 🙂
    … where M.E. is not known, and CFS is seen as a psychosomatic disorder, if someone knows about the disease at all. I admit, I tell people who are asking me what’s wrong with my health, that I have problems with my muscles and my immune system. And then I hope, they won’t ask any further questions…
    Having been sick for almost 20 years now, I’m fed up with explaining it and getting all the silly looks. To mention the “magical three letters” leads in my experience in the majority of the cases to discussions with average people and – even more sadly – to mistreatment by doctors.
    So let’s get rid of those silly three letters!
    All the best wishes and a big thank you for your work!
    Karin xx

  16. Steve Hawkins says:

    Medical objections to the name M.E are rather contrived, as the name has been recognised as relating to a particular symptomology for more than half a century, and the fact that it may not prove to precisely identify the underlying cause is not relevant. Malaria is still so called, even though we know it has nothing to do with ‘bad air’. Sometimes names change as more is learned: sometimes it’s less confusing to stick with tradition. No problem.

  17. Another little bit for the pot: On The Mighty, which has contributions from ill people which are available for quoting, ME and CFS have completely separate sections and lists of posts!

    If there was ever a disease in need of clarification, we’ve got it.

  18. Sharon Kramer says:

    This is a tongue in cheek comment. I wish it was “Occupy CME”. It’s a double-entendre of “Chronic Myalgic Encephalomyelitis” and “Continuing Medical Education”.

    All kidding aside, I think you should call your blog and use/promote whatever name for your illness that you feel does the most good to advance help for sufferers.

  19. kathy d. says:

    Fine with the name change. It’s more scientific than CFS. I hope people can find your blog though when they are searching for “chronic fatigue syndrome” or “cfs.”

    The word “encephalomyelitis” means inflammation of the brain. According to the study at Stanford and elsewhere, there are definite changes in the brain in people with this disease as opposed to healthy people.

    When I told my doctor last week about the Stanford study, he said “this is a disease of the brain.” But when I asked him if researchers are close to finding the cause, he said, “no.” Two years ago he told me that researchers were close to finding the cause, and when I reminded him of that, he said that he was wrong. I was dismayed.

    But if the darned funds were allotted by the NIH that are necessary to fully research this disease, we’d be lot closer to knowing cause, biomarkers, and finding treatments.

    This situation with the lack of funding is absurd. This is obviously obstructionism at top levels of the NIH and elsewhere.

    I don’t know what else to do except put one food in front of the other and keep going, despite the symptoms, including ridiculous sleeping problems (which no one understands), muscle pain, brain fog, etc. And horrific allergies, too.

    Thanks to Jennie for your hard work. Without it, I wouldn’t know what was going on at the federal level (or not going on).

    By the way, two studies just came out, one from Johns Hopkins School of Medicine and the other from University of Alabama. Both said that exertions of muscles or nerves can lead to flare-ups of ME/CFS. They did tests where people’s legs were raised by researchers, not even by the individuals themselves, and this affected them.

    All these studies going on and still NIH isn’t budging. It’s still astounding.

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