How to Properly Name a Disease

A few weeks ago I was preparing for a conversation on the Armchair Expert podcast with Dax Shepard, and I found myself getting in a debate. Not with Dax, but with my friend who was helping me prepare talking points for the podcast.

While compiling the stats and other data we planned to mention on the podcast, we got in a debate about what to actually call our illness when talking to an audience who had probably never heard of it.

The Background

I often refer to the illness as ME/CFS, which is an acronym for both myalgic encephalomyelitis and chronic fatigue syndrome. The first term is a direct result of the second term being an inadequate and inaccurate name for the disease. I could literally write a book about the history behind this, but here’s the quick version: Some government assholes decided to name a complex illness chronic fatigue syndrome because the patients looked tired. And they were tired, but as many of you know, the illness is much more serious than just fatigue. Calling it chronic fatigue syndrome is like calling Parkinson’s disease chronic shaking disorder or lung cancer chronic coughing syndrome. It’s not a fair representation of the illness, especially when so many people judge the severity of an illness by its name.

Naming the disease after a scientist, or doctor, or even a damn town (as was done for Lyme disease) would be better than calling it chronic fatigue syndrome. And I’m not the only one who feels this way. I think it’s fair to say the vast majority of patients agree with me, and as I understand it, many of them prefer to use alternative names, like myalgic encephalomyelitis, which is more commonly used outside of the US for a similar, if not identical, disease.

But even myalgic encephalomyelitis has some controversy surrounding it because the name denotes inflammation of the brain and nervous system, and some people feel that ME/CFS patients don’t have inflammation in the brain and nervous system. In fact, this was one of the disagreements I had with the doctor who treated me on Afflicted. He thought myalgic encephalomyelitis wasn’t an accurate name for my illness, though recently it was proven that there is in fact inflammation in the brains of patients like me.

The Debate

So, back to me and my friend arguing. She thought we should use both chronic fatigue syndrome and myalgic encephalomyelitis when referring to the disease. I thought we should only use ME.

My reason for wanting to only use ME is this: The only way to change a shitty name is to stop using it. Right? So, by excluding the CFS in ME/CFS, we would be moving that process along.

This is basically why I rarely, if ever, use chronic fatigue syndrome in my writing. Although, I should admit that I do use the combined acronym ME/CFS a lot. But, for the most part, if you look at my previous blog posts and published articles, the closest I get to using CFS is explaining that it’s a shitty name and nobody should use it as a standalone term for the disease. This is essentially what my friend suggested we do. She wanted to be transparent and tell listeners that CFS is what some people call the illness, they’re assholes, don’t be like them (Okay, maybe she said it nicer than that, but you get the point).

The problem with being so forthcoming while trying to change society’s perception of a neglected illness is at some point you have to stop talking about what you’re trying to change, or at least stop bringing it up without being prompted. As long as you keep bringing up the name chronic fatigue syndrome, it’s going to continue to belittle people who are much sicker than someone who is just tired, perhaps from working too much or not sleeping enough.

This is all to say that if we want to change the name, eventually we’re going to have to remove the term chronic fatigue syndrome from the discussion all together, and if people care about the history of the disease, then they can figure it out on their own.

In other words, I don’t feel the need to point out an unfortunate part of the history of the disease. It’s like standing next to someone in an art gallery with a big pile of shit behind you. Do you really need to tap the person on the shoulder and say “Hey, there’s a big pile of shit over there!” No, you don’t, they know there’s a pile of shit behind you, so just keep looking at the damn art.

But my friend felt differently, and I respect that. She worried that there might be some undiagnosed people with ME/CFS listening to the podcast, who wouldn’t be able to recognize the illness if we called it myalgic encephalomyelitis, or even ME/CFS, without explaining the chronic fatigue syndrome part. I sort of understood this argument, but I also felt like the goal of going on the podcast was not to diagnose new patients, it was to get non-patients to donate to the cause. After all, it’s likely that most of the listeners would be people unfamiliar with the disease. And again, if they search for ME/CFS online, boom, the name chronic fatigue syndrome is right there. It’s not a hidden secret or anything — it’s still a pile of shit sitting in the room.

Another concern I had was that our spot on the podcast would be very short — five minutes, if we were lucky. Explaining the controversy of the name would eat up valuable time that could be spent telling listeners that some patients are on feeding tubes and can’t speak or walk; the time could have been used to tell people to donate to help find a cure, which seemed much more important than semantics.

In the end, our solution to the disagreement was to just do our own talking, which felt sort of unfair because, well, I can’t talk much. Nevertheless my friend was going to do most of the talking, and I didn’t want to censor her or tell her what she could and couldn’t say. So I just told her to do her thing and I’d do mine.

On The Podcast

If you read my last blog post then you may have already guessed how this story ends — we had technical difficulties and I wasn’t able to connect my friend to the conference call with Dax. So she wasn’t on the podcast, which I felt horrible about. She put in a lot of time to prepare for the podcast, including sitting around on the phone for two hours while we waited for the call. But ultimately I had to do all the talking on my own. The upside, for me anyway, was that the words chronic fatigue syndrome were never heard on the podcast. I did, however, call it ME/CFS, both because I think it’s a fair compromise and because I’m vocally challenged. I can only speak so many syllables before my voice gives out and I didn’t want to use them all trying to annunciate myalgic encephalomyelitis, especially on a podcast that is likely listened to by millions of people. That would have only added embarrassment to injury.

Overall I’m very happy with how the podcast experience turned out — it was really difficult, but worth the struggle. And while it certainly wasn’t the first time the issue with the illness’s name came up, it did make me think about it in a new way. It made me think about how people interact with the name and how many of us feel differently about it. Until recently I just assumed, however naively, that most, if not all, people with ME/CFS feel the same as me — the name chronic fatigue syndrome should be avoided whenever possible.

BEFORE YOU GO…

1. Thank you for reading!

2. As you may have noticed, I have turned the comments back on now that the Afflicted trolls have gone back into hiding. So please use the section below to let me know how you feel about the name chronic fatigue syndrome and the alternatives.

3. My good friend Erica Verrillo is raising funds for ME/CFS patients in need. In the several years that I’ve known her she has proven to be one of the most generous people I know. She’s generous with her time, energy, and money. She’ll never admit it, but I suspect a lot of the money she has given out through the AMMES organization has come from her own pocket, which is all the more reason to donate to the cause. Here’s more info. on her charity:

Last May, after the completion of our first Crowdrise fundraiser, the American ME and CFS Society (AMMES) set up a fund for severely ill patients who are in financial crisis. By financial crisis, we mean people with ME who cannot pay their rent and are in danger of eviction, or who cannot pay their medical and utility bills, or buy food and clothing, and who lack other basic necessities. Since May we have given away over $25,000. We have paid for: a wheelchair, a bed for a patient who was sleeping on a couch, shoes for a patient who only had flip-flops, medications, doctor’s bills, food, security deposits, transportation, and housing.

All of the people who have asked for help live alone. None have support from family and friends, and most have been ill for decades. When I asked one of the applicants if she had previously had difficulty getting help, she said “You are the FIRST group to actually recognize my illness and believe me based on what I told you.” Another applicant said that having his bills paid allowed him to get his first night of good sleep in months.

Having ME is bad enough, but the additional strain of not having any financial security, of not knowing if you will end up having to live in a car, or skimp on heat or food, makes it impossible to focus on recovery. As one patient put it: “All of this lifts a burden so that I feel like I can focus on regaining some health.”

Right now, our funds are low. We’ve initiated another Crowdrise campaign in the hopes of raising enough money to keep the fund going for another six months. The goal is to raise $25,000. This will allow us to double the number of people we can help. Every patient who comes to us is in a desperate situation. We want to be able to help them all.

Please donate any amount here.

16 comments

  • Pingback: What It’s Like to Work Full-Time and Have a Chronic Illness – Jamison Writes

  • Have you tried the medical medium protocols? You would heal from this! Anthony William has the cure for all your symptoms!

    Like

  • I prefer ME, but if people don’t get it, I clarify – ME Chronic Fatigue Syndrome. And that usually works.

    Like

  • Your blog is absolutely amazing

    Liked by 1 person

  • While I have to have the CFS diagnosis for disability and insurance purposes since I’m stuck in the US, I’ve also been harrassed to the point of blocking some folk in the “ME” only camp. So I would love to rename it altogether. I’d like to call it Dauer Disease after Naveaux’s idea of metabolic dormancy. This would get us away from the contentious CFS vs ME debates and allow the symptoms/diagnosis/cause to evolve as research advances without having to come up with a new name every few years.

    “The cell danger response (CDR) is the evolutionarily conserved metabolic response that protects cells and hosts from harm. It is triggered by encounters with chemical, physical, or biological threats that exceed the cellular capacity for homeostasis” (Naviaux, 2014).

    Liked by 1 person

  • Jamison–it’s just me, Lizbeth. This is my fav article you have written so far. Cannot get into my own voyage thru insanity with this but hope to do so soon as am long past the point of skimping on meds, food, heat in the highly over-rated Northeast.

    Vravo, my buddy.

    Like

  • I’ve been sick 29 years and originally was originally diagnosed with CFIDS. This lack of proper label and understanding of ME has been an ongoing frustration.

    I now use ME when talking about those who fit the ICC and ME/CFS when referring to the diagnosis that is SEID and CFS when talking about those who fit the Fukuda definition.

    I clarify with saying that some doctors misdiagnose people as having CFS or ME/CFS when they really have ME. Then I share the International Consensus Criteria questionnaire on http://www.MEadvocacy.org so people can see for themselves how ME ICC is diagnosed.

    I think the misunderstanding that ME was renamed CFS is part of the problem with all of these conversations around the label. ME as per Ramsay (original description) and CFS as per the Fukuda (CDC 1994) really are not talking about the same patient population. It angers me that people were misled into thinking that CFS was ME renamed.

    In essence the creation of CFS (Fukuda) left ME as described by Ramsay and later by the ICC without any proper recognition.

    I would love for us to get past the ineffective argument that the names all apply to the same patient population. Using the labels that apply to the patient population we are talking about will go a long way to helping society understand the harsh reality that ME is a debilitating, devastating disease and not just a “fatigue condition”.

    I don’t think we can move forward as long as we continue to mix ME and CFS together. Even the IOM stated that ME and CFS are two different conditions.

    The following is from an explanation chart from my support group.

    MYALGIC ENCEPHALOMYELITIS
    ME – expert criteria (most recent): International Consensus Criteria (ICC)
    Link: https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2796.2011.02428.x
    ME Medical Education Materials: International Consensus Primer
    Link: http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf

    SYSTEMIC EXERTION INTOLERANCE DISEASE
    SEID (ME/CFS) – CDC official criteria: NAM (aka IOM) report
    Link: https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf
    SEID Medical Education Materials:
    CDC Materials: https://www.cdc.gov/me-cfs/treatment/index.html
    MEAction/Unrest Continuing Education Materials: https://www.meaction.net/unrest-ce/

    COMPARISON BETWEEN ICC & IOM
    https://d3n8a8pro7vhmx.cloudfront.net/meadvocacy/pages/22/attachments/original/1531592663/ICC_compared_to_IOM.pdf?1531592663

    CHRONIC FATIGUE SYNDROME
    CFS – CDC official criteria: Fukuda
    Link to description: https://www.meadvocacy.org/analysis_of_cfsac_august_2015_recommendations_for_the_iom_criteria
    US Proposed ICD Code for CFS – G93.33

    Thank you for writing these blogs. Engaging in dialogue that raises awareness is good for everyone in the community and for wider awareness.

    Liked by 1 person

  • I use the compromise ME/CFS in my modern day writing; it’s a horrible compromise, barely better than SEID or Yuppie flu or chronic mono.

    Here’s my (future) solution: name it after the researcher who delivers an incontrovertible diagnostic test based on the actual cause. Or the nasty little beastie that causes it – when they find one, if it’s just the one. Like HIV and AIDS.

    Liked by 2 people

  • Well I’m with you Jamison, ME all the way!

    However, I did used to state I had CFS or even just chronic fatigue until I learnt more about my own illness. I have also said ME/CFS and explained the tale, but no longer! I look at the ICC criteria and I can tick almost every box. My GP is happy to go by the name ME and I think as that name has been around longer, more have actually heard of it than CFS.

    It’s interesting to see that here in the UK a few well known charities have gone from CFS/ME to ME/CFS. So, I do think we are getting there by word of mouth. Unfortunately, both NIH (is it?) and NICE are possibly categorising ME in a less prominent position than the WHO via ICD have at the moment.

    So, now I just say I have ME and as I’ve just been diagnosed as severe, I’m sticking that tag in it too!

    And, so proud of you and Erica for the work you are doing for those less fortunate financially. I wish you lots of success with your fund raising. I’m grabbing my card now!

    Much love,
    Fiona. x

    Like

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