“Chronic fatigue” vs chronic fatigue syndrome

May 12 is International ME/CFS and FM Awareness Day, and throughout the month I am sharing posts which shed a bit more light on these misunderstood illnesses. For more, check out #May12BlogBomb, #MEAwarenessDay and #MillionsMissing on Twitter and Instagram.

 

One of the most common misconceptions about ME/CFS is the difference between the specific illness, chronic fatigue syndrome (myalgic encephalomyelitis) and other types of fatigue. This simple misunderstanding snowballs into real challenges for ME/CFS sufferers, who have to contend with people’s assumptions that they are not seriously unwell, but just tired.

Obviously the common name of the disease (chronic fatigue syndrome) encourages these misconceptions. The conflation between different types of fatigue is just one of the many reasons why chronic fatigue syndrome should be completely replaced with the term “myalgic encephalomyelitis”.

An image of a young woman at a desk. The desk is piled with papers and mugs. The woman has brown hair and wears a brown jacket. She rests her head on the papers and her eyes are closed.
The fact that images like this inevitably accompany articles about ME/CFS doesn’t help.

In this post, I will compare different types of fatigue to make clear the difference between other types of tiredness and ME/CFS.

Fatigue

We all get tired. Even perfectly healthy individuals experience ordinary fatigue in the course of their day. Some examples of fatigue as an normal response to life circumstances include:

  • Not sleeping well due to the heat, and feeling drowsy the next day
  • Being tired after a long day of work
  • Feeling fatigued due to stressful life circumstances
  • Being worn out after a gym session
  • Having a newborn baby and being exhausted by their constant screaming which seems to come from the very bowels of hell itself
A screenshot from Spongebob Squarepants. Patrick Star, a starfish, wears business clothing and sits in lounge chair at front. He looks back with disinterest. To the left and behind is Spongebob Squarepants, an ocean sponge, with multiple arms each performing a cleaning task. He has a look of dismay.
Tired after a hard day of work

Being tired can be shitty. Before I fell ill, I had trouble sleeping, and used to complain of exhaustion after not catching a break for days at a time (god, I wish I could go back to those days!). Uni was taxing, and I would get a bit worn out after travelling hours in a day just to get close to civilisation (#countrylyfe). But that did not mean I had a chronic illness.

One of the quickest ways to get on the wrong side of someone with a chronic illness is to try to compare your healthy tiredness to their debilitating, medically-induced fatigue. Trust me when I say you don’t understand what someone with a chronic illness is going through, just because you are a bit worn out after achieving things they might not come close to in their wildest dreams.

Does your fatigue have a (reasonable) cause? Congratulations, you’re not sick, you’re just human.

Chronic fatigue

Chronic fatigue is a hallmark of a great number of chronic illnesses. I would even go so far as to say that nearly every chronic illness has the symptom of chronic fatigue – but that does not mean those who experience it have chronic fatigue syndrome.

Generally, if chronic fatigue has another medical explanation (such as another illness), you are precluded from being diagnosed with chronic fatigue syndrome. It’s not a tack-on at the end of a list of multiple illnesses, it is an illness in its own right with a very specific set of symptoms.

Here are some examples of how people with chronic illnesses can experience chronic fatigue:

  • A Crohn’s patient who is worn out by pain and inflammation
  • Someone with POTS who is so weak and dizzy, they are unable to shower themselves
  • Someone who suffers from depression, and finds their fatigue so overwhelming that they cannot leave their bed
An image of a Gumby-style red toy. It has a sad expression on its face, and holds its hands up to its head.
While we’re talking pictures inadequately representing illnesses, what’s worse: the ME/CFS tired lady, or this faux-Gumby picture I found under stock images of depression?

In fact, chronic fatigue is such a universal symptom, it makes me wonder why one specific disease with a myriad of symptoms was singled out to be named “chronic fatigue syndrome”, when you could name any disease the same.

Chronic fatigue syndrome aka myalgic encephalomyelitis

We’ve finally made it to chronic fatigue syndrome: the disease. As I’ve explained, “fatigue” does not quite cover the range of symptoms experienced during this disease. So what does ME/CFS really look like?

If you are correctly diagnosed under current guidelines (I am using the International Consensus Criteria and IOM report as an example here), as well as profound and prolonged fatigue which is unalleviated by rest and lasts more than 6 months, you will experience:

  • Post-exertional neuroimmune exhaustion (a disproportionate physiological response to exertion, which can be delayed and last for hours, days, weeks or months after the event)
  • Neurological abnormalities such as cognitive impairment, delayed reactions, short-term memory loss, abnormal sleep patterns, headaches
  • Neurosensory and perceptual disturbances such as a sensitivity to light/sound/touch, inability to focus vision
  • Motor impairments such as ataxia, pain, poor coordination
  • Immune symptoms (unrelenting flu-like symptoms)
  • Gastrointestinal complaints
  • Cardiovascular dysfunction such as POTS and OI (inability to maintain regular blood pressure and heart rate upon standing)
  • A 1 in 4 chance of being wheelchair-, house-, or bed-bound
  • worse quality of life than those with conditions such as kidney failure, heart disease, or MS, and more equivalent to terminal cancer or stroke

This is just a short summary – the complexities of ME/CFS are too much to describe in great detail in this forum. Suffice to say, the symptoms are a great deal more than just “fatigue”!

Two images: left is a young man smiling and waving at camera. Right is same man, emaciated, in bed, having his head shaved by his father.
Whitney Dafoe, one of the many faces of ME. From healthy travel photographer to bedridden and paralysed.

If you are wish to learn more about the true nature of ME/CFS, the International Consensus Primer is a good place to start. It was written by a team of specialists in the field specifically to address the confusion between patients with ME and those with other forms of fatigue, and narrow an overly-inclusive criteria which mixed the two.

 

 

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

10 thoughts on ““Chronic fatigue” vs chronic fatigue syndrome”

  1. Gosh, what excellent stock images D: It’s a hard call but I’d say gumpy-pretender is marginally better. The peaceful blank look on the lady’s face is wigging me out! 😛

    People are so thoughtless. (Including me, often, I’m sure, although I try not to be) I don’t know that a more specific name would help that much – I hear plenty of people saying ‘oh I’m a bit OCD, I like things neat’. I don’t think they are saying they have to repetatively perform tasks or they feel like their loved ones will die, for example. I suppose it’s natural to be clueless given the way society tries to squirrel away disability and never mention it, and we’re taught that neurotypical and abled bodies are neutral and normal. That doesn’t make it less hurtful or harmful, and it’s all of our responsibilities to think about this stuff before we open our stupid gobs. Thanks for posting about it!

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    1. Well, the difficult thing about the name is that it invites mockery. I’ve seriously had people tell me they went to the doctor, only to have him lean over the desk, quip “I’m chronically fatigued too!” and burst out laughing. People will be jerks but believe me, this name makes things 1 million x harder for sufferers. A change of name will also stop people trying to genuinely claim the illness (as in, not in jest) when they are perfectly able-bodied. You don’t have a long day at work and think, gee I’m tired, I must have MS – but people do think it of CFS.

      You’re certainly right about the danger of positioning NT/able-bodied people as the “norm”. Anything else becomes deviant and othered. Then people view inclusion of different bodies as a huge effort, or tokenism, when really it should just be a given.

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      1. My face right now. I look like I sucked a lemon. I suppose it’s like if depression was called ‘chronic sadness’. Like yes, there are already people who say ‘I get depressed too!’ but that’s not quite the level.

        Also I would like to apologise if it sounded or felt like I was explaining how your experience of your illness felt to you, or explaining away your experiences. That was not at all my intention but reading it back I am worried it reads like that – and whatever the heck my intention was is not really important if the actual effect was shitty. I apologise for not stopping to think that you are 100% more across that than me!

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        1. No worries. I knew your comment was good-intentioned, hence why I replied as I did. I didn’t take it as an “ablesplain” or what have you!

          The name definitely needs changing, but you are right about people being shitty no matter what illness. I was so, so shocked at the reaction my good friend received when she recently went through cancer. I really thought that was the bar for shittery, like no one would dare suggest it was all in her head or whatever. But she has literally been bombarded with terrible messages from complete strangers, telling her how she’s killing her body with chemo and just has to pay $999.99 to see Dr X and have him cure her, or she just needs to change her diet, or she’s being selfish with her treatment. It blew my mind.

          Liked by 1 person

  2. Illuminating post, Siobhan. I usually do not comment on your health posts because you are so right when you say that I don’t understand what you are going through, though I do quietly emphathise with your plight.
    Sharron

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    1. I don’t mean to put people off commenting! There is a world of difference between supportive comments such as yours and those who try to belittle my experience. I appreciate your input and kind thoughts, Sharron.

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  3. hello. I want you to know I read all your posts and appreciate the education. I rarely comment, even though some posts especially interest me and give me insight. I guess I just want you to know that I “hear” what you are saying and am here to listen, even though I am invisible to you. (well, I think other people can see me but that refers to people who are actually in my presence and not ones who only see what I am typing, at least I think I am visible. Now I have something to worry about)
    :o)

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  4. I have been so educated by your posts and links to other people’s posts that a lot of this is stuff that I’ve luckily heard by now, but I also wanted to say how much I appreciate the education you do with what you write. I never would have dismissed ME/CFS as “all in the head” or not a real disease, and I never would have claimed to also be chronically fatigued (though since being diagnosed with fibromyalgia, and I am often terrified that I’m developing a range of other co-morbid illnesses, one of which is ME – I try to recognize that this is mostly paranoia about ways that my quality of life could deteriorate even further, though). But I definitely never knew the extent of ME’s debilitation; I was shocked and upset to hear that we’re investing so little in researching a disease that’s just as debilitating at MS, and I feel certain that similarly to fibromyalgia, the fact that it affects women at greater rates than men plays a part in that lack of concern for finding cures. I know that it’s hard to continually educate people on the basics of something that affects your quality of life every day in such profound ways, whether it be an illness, sexism, racism, or anything else, so I just wanted to say how much I appreciate the effort you put into these posts.

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    1. Wow, thanks so much Gina. It is hard to write sometimes with all the trauma I’ve experienced as a result of my illness, but it’s nice to know it’s worthwhile. I absolutely agree that part of the problem with ME and other similar diseases it that it predominantly affects women. I just keep thinking back to that TED Talk on ME, how the presenter said that autoimmune diseases mostly affect women, and 45% of those diagnosed were initially dismissed as hysterical. I mean, that’s nearly half!

      It’s understandable that you’d be worried about developing other diseases, and one of the symptoms of fibro is fatigue. I like to see it on a spectrum, ME – fibro, as many ME sufferers have a fibromyalgic-type pain and there is a lot of crossover. I’d add EDS, POTS and MCAS to the list too.

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