So The Institute of Medicine has complicated and expanded the terminology wars with its recent report suggesting Systemic Exertion Intolerance Disease as a more accurate name. I don’t like it much more than I don’t like Chronic Fatigue Syndrome, but I recognize the value of the report’s major findings and dare to believe that the publicity will have positive effects. What really gets me, though, is the Institute’s acceptance of the phrase “Post Exertional Malaise” as the distinguishing symptom of whatever this disease will ultimately be called.
Google defines ‘malaise’ as “a general feeling of discomfort, illness, or uneasiness whose exact cause is difficult to identify,” and Wikipedia says it is “a feeling of general discomfort or uneasiness,” of being “out of sorts”. According to The Free Dictionary, pathology uses ‘malaise’ to indicate “a mild sickness, not symptomatic of any disease or ailment.”
That hardly describes my reality.
When I hear ‘malaise’, I can’t help picturing Greta Garbo in the 1936 melodrama/tearjerker Camille*: Margueritte, a beautiful tubercular (or, more glamorously, consumptive) 19th century Parisian courtesan, languishes gracefully in her elegant boudoir wearing a white gown and coughing delicately into her perfumed and embroidered handkerchief. Violins play mournfully. Here’s the end described by a review on Filmsite : “a final fade-out, close-up shot of Marguerite’s lovely, radiant face – imperishable in death.”
When I’m suffering a PEM crash, I am far from lovely and radiant. I’m usually wearing a sweaty and smelly T-shirt and jeans because I haven’t the strength to shower. When my husband sees me collapsed in bed with unrelievable head-to-toe pain, he scoffs at the word ‘malaise.’ It’s become a sardonic family joke. How did the medical establishment come up with and then keep such a stupid word?
“A feeling of general discomfort or uneasiness” Wikipedia
Even the sound indicates a Camille-like gesture: somehow the elongated vowels convey an image of someone named Margueritte (or Violetta – see note below*) lifting the back of her hand to rest against her pale but luminous forehead and sighing.
‘Malaise’ also makes me think of the kind of decadence, boredom and lassitude characterizing James Harthouse, the young man in Charles Dickens’ Hard Times, who finds no value in anything:
I have seen a little, here and there, up and down. I have found it all to be very worthless. . .I have no choice of opinions. . .I have not so much as the slightest predilection left. I assure you I attach not the least importance to any opinions. The result of the varieties of boredom I have undergone, is a conviction (unless conviction is too industrious a word for the lazy sentiment I entertain on the subject) that any set of ideas will do just as much good as any other set. . .
Some synonyms for ‘malaise’ include ‘melancholy,’ ‘depression,’, ‘angst’ and ‘ennui’, and the German ‘weltschmerz’, which means world-weariness, or lack of interest in the human condition, just what’s felt by the despicable James Harthouse, but containing exactly the psychological connotations that clearly do NOT apply to ME/CFS/SEIDS, except perhaps as the result of having such a debilitating illness for such a long time that you might descend into a pit of disabling emotional nihilism.
Ay yi yi…yet another poor term for ME/CFS
Why haven’t we seen more of an uproar in the ME/CFS community about the designation ‘malaise’? Criticism has focused on the belittling ‘Chronic Fatigue Syndrome’, and now on ‘Systemic Exertion Intolerance Disease.’ I surely understand all the reasons given, and wonder why we have so many problems with terminology. Indeed, when I told a friend about the new possibility of SEIDS, she explained her belief that ‘exertion’ required some extreme effort – not activities like washing your hair or talking on the phone.
Yet of all the ill-conceived terminology, the word ‘malaise’ remains, to me, the most misleading, derogatory and insufferable.
*The 1936 movie “Camille” is just one instance of the stereotype of the charming and beautiful romantic heroine trapped in the malaise of her illness. First, in 1848, Alexander Dumas’ wrote The Lady of the Camellias and in 1853 Giuseppe Verdi turned the story into an opera, La Traviata, with Marguerite renamed Violetta. Many versions of the original novel have been adapted for stage and film.
I call it PAM– post activity misery!
Good word for it- thanks for sharing- will use this one for sure …
That was really among the best description I have heard :-). I’m going to use PAM from now on.
What a powerful summation Carol! I hadn’t thought about it that much until you brought it up but I agree – a word with connotations like that has no place in ME/CFS – and it just got a pretty prominent one.
I did a search of the term in PubMed. So far as I could tell there was no use of the term PEM prior to ME/CFS. If that’s true then there’s little historical precedent for it which means it should and could be changed – and now is the time to do it.
Post-exertional relapse has been suggested – I think that’s a pretty accurate term. I’m sure others have ideas.
This is why Lenny Jason’s idea to from a group of stakeholders to go over these issues is a good one: no one group can cover all the possibilities.
This is something that should not take a lot to change. If it’s only used in ME/CFS consistently then we should be able to get it changed.
Thanks for the blog!
The International Consensus Criteria Primer for Medical professionals in ME, uses the term PENE Post Exertional Neuroimmune Exhaustion, which I think should be used as standard. It is better than PEM.
Agree.
Yes! Yes! Yes!
I have always felt the same way about the word malaise…and I believe it is a medical term for “general feeling of unwellness.” But PEM has always bugged me. I rejoiced when I first saw PENE but haven’t seen it used much since. Personally I use the terms CFIDS and PENE when talking to m doctors.
If one doesn’t like the term, post-exertional malaise, it’d be good to suggest one or more improvements.
Printed pages 78-86 of the IoM report include a quite detailed description of what is in mind.
CDE. Constant debilitating exhaustion. That sums it up for me.
Carol, you have summed it up perfectly. I knew there was something bothering me about the term post exertional malaise and that’s it. Malaise is certainly not what I feel after exertion. More like nearly dead or post exertional total and complete body wipe-out. That’s it PMEW: post minimal exertional wipe-out. 🙂
These French words, fatigue and malaise, along with the associations you mention with Marguérite in Camille, all point to une condition féminine, don’t they? At least “exertion” is Latin in origin, a language considered more authoritative. I gradually have gotten autonomic dysfunction bad enough for it to be called Pure Autonomic Failure. How is that for a label?
I’d prefer Ramsay’s Disease until such a time when the pathophysiology is accurately known such that we could have a scientific identifier.
Lets think of a Severe Systemic Idiopathic Malaise and not Camille’s malaise. It is exactly what I feel when I am lying there immobilized in misery during a full blown attack. I call it Deaths Door Malaise. At those times I cant conceive of anyone feeling as terrible as I do and not being dead momentarily.
In fact, many years ago, 25 years to be specific, the attacks would end in Emergency Room visits where I was usually suspected of somatization at best . Years later, after many scares, I would just lie there and white knuckle it until it passed. However it is still so severe that each time it happens there is still a small part of me that remains a bit suspect at my making it through.
I’ve been calling it “DEATH WARMED OVER” for years because that’s how SEVERELY AWFUL it feels! It feels as though your DYING in the most HORRIBLE way!
DEATH WARMED OVER!!!
Dee, tou should have been on Dr. Oz instead of the whiny blah woman. How do we ever find thewords to express the complete devastation to our lives and our bodies. I too say i’m living dead.
I’m so glad to see that I’m not the only one that felt this lady on Dr. Oz was doing more harm for us than good!!! Dee you said it best — The whiny blah woman!
I agree with you too Dean! Thank you for this article and I agree with all you said about PEM is just another name that down plays how damn serious what we go threw is!!!!!
CEIL; I WAS SO TOTALLY DISGUSTED WITH DR, OZ–I HAVE TO BELIEVE HE IS NOT CONVINCED! HE COULD HAVE EASILY USED THE WHOLE SHOW FOR SUCH A COMLICATED, MISUNDERSTOOD & HORRIBLE ILLNESS!!
I agree that malaise is a poor choice of words, worse than fatigue since it conjures up a vague psychological state. I think that exhaustion is much more accurate. If CFS had been named Chronic Exhaustion Syndrome we might not even be having this discussion.
Two out of three Darden. I like chronic exertion but hate the word syndrome. I think it is even more vague than malaise. “I’ve got a syndrome”, “Oh lucky you!”.
I agree! “Malaise” sounds so 19th c. For my own enfeebled memory, I would prefer Chronic Fatigue Disease.
Fabulous piece Carole, I couldn’t agree more.
‘Malaise’ is a totally innappropriate word to use for the condition.I suspect that only the people suffering from ‘it’ can truly find the words to do it justice. (See I’ve started referring to it as ‘it’ because I’m no longer sure what to call it ! )
I just ignore the comments from friends and family who say things like ‘How are you, are you just tired ?’ or ‘I think I know how you feel when I get tired’……..Err no, you don’t.
SEID is not the solution to the problem, I voted for Ramsay’s Disease as I think it fits the condition and gets us away from the wishy-washy ‘fatigue’ and ‘malaise’ we’ve been lumbered with up till now. If not Ramsay’s Disease then how about ‘TKD ‘ Totally knackered disease ?
Thanks again Carole
I agree with you Carol. Ramsey disease gets us away from fatigue. It’s so much more than fatigue but that’s all the people think it is with any reference to fatigue or exhaustion in the name. Other illnesses cause fatigue but that’s not what the medical community has focused on. What about our headaches, fevers, painful episodes, brain disfunction (I hesitate to say brain fog because it’s further than that sometimes) and for most of us, IBS. This is a debilitating illness and is much more than just “I’m tired!”
Ramsay’s has been my preference also. It is quite popular, notwithstanding WHOs discouragement of using eponyms. Is it a discouragement or a mandate? There are good reasons for doing so, no more than for a disease in which there is no (yet) identifiable biological marker to hang an appropriate name upon.
Malaise? Hydrogen bomb sounds familiar to Chernobyl victims thier Malaise is severe…Internal Ionisation Radiation Injuries ‘broken cromosones/translocations’ 15 consecutive patients from Gail Kansky’s cohort are all Positives to Radionucleides not one of them turned up Negative &
this is a Government test…Russian Scientists call CFS Chronic Radiation Disease…Doctors are even threatened not to talk about radiation nijuries the cohort urine samples were worse more damage than the Heng study called ‘conspiracy blood test’ on the Discovery Channel parts
1 to 4 thanks to people like Gail Kansky including her Medical board funding is now underway in Hamilton Ontario with the leading radiation female Scientist on the globe she was the forst ont the Japanese Government called in for that Nuclear accident she is convinced this illness is
radiation injuries hopefully now we can stop the Clown Doctors who continue to talk about viruses even Lyme pure b.s. Wake up people they are lying to all of us now ‘daily’ file
damages lawsuits now sue from the Private sides of Laws…We need thr truth not Clown Doctors who know absolutely nothing…
TOTALLY AGREED, CAROL! Why the IOM did not see fit to accept the work of the International Consensus Document clinicians and researchers and call it what it is: post-exertional neuro-immune EXHAUSTION is beyond me.
I am in the midst of a terrrible crash right now and can barely lift my head off the pillow let alone get up to use the bedside commode. ‘Malaise’ is an absolute insult. They have no idea.
Christine
Other thoughts on the meaning of “malaise” to a clinician.
The appearance of malaise to most clinicians is a red flag possibly signaling a presenting symptom of one the following in the differential diagnosis. A psychological cause should be usually the last thing a good clinicians thinks of and only after ruling these out the disease listed below for starters.
However, I do understand, that to many the word malaise might be more associated with somatizing and stigmatization especially when preceded byt he term post exertional, esp since thnis includes cognitive and mental exertion. . I would hope that whenever the word malaise is used in conjunction with our thing we should always modify it as being as a “Severe” “Systemic” malaise whose cause is Idiopathic. .
And after all, in spite of Verdi’s violins, beautiful final aria and romantization of death, Camille’s malaise was probably a manifestation of acute fulminate necrotizing pulmonary tuberculosis which is no picnic.
Differential Diagnosis of Malaise (incomplete)
Acute bronchitis or pneumonia
Acute viral syndrome
Infectious mononucleosis (EBV)
Influenza
Lyme disease
AIDS
Chronic active hepatitis
Disease caused by parasites
Tuberculosis
Congestive heart failure
COPD
Acute or chronic kidney disease
Acute or chronic liver disease
Rheumatoid arthritis
Sarcoidosis
Systemic lupus erythematosus
Adrenal gland dysfunction
Diabetes
Pituitary gland dysfunction (rare)
Thyroid disease
Leukemia
Lymphoma (cancer that starts in the lymph system)
Solid tumor cancers, such as colon cancer
Severe anemia
Depression
Dysthymia
Anticonvulsant (antiseizure) medications
Antihistamines
Beta blockers (medications used to treat heart disease or high blood pressure)
Psychiatric medications
Treatments involving several medications
Good to know, Dean.
Poor Camille – We are lucky that we live in the modern age…
It’s amazing how different the connotations a term can have in the medical profession and with laymen.
I totally associate it with a healthy person lying around the house in some sort of “malaise” but it seems to have a quite a history in medicine as well.
Looking at the definitions for malaise, it would seem perhaps more appropriate to quote them in full:
“…often the first indication of an infection or other disease.”
“Malaise is a non-specific symptom and can present in the slightest ailment, such as an emotion (causing fainting, a vasovagal response) or hunger (light hypoglycemia), to the most serious conditions (cancer, stroke, heart attack, internal bleeding, etc.).
Malaise expresses a patient’s uneasiness that “something is not right” that may need a medical examination to determine the significance.”
It’s a word. A medically recognised word. When I was diagnosed with ME 16 years ago and still today, I feel this malaise all the time and after overdoing it, it becomes overpowering.
It is how I would describe the feeling you get when something infectious like flu hits – “a condition of general bodily weakness or discomfort, often marking the onset of a disease”.
“Malaise is a symptom that can occur with almost any health condition. It may start slowly or quickly, depending on the type of disease.”
Check out the list of diseases listed here: http://www.nlm.nih.gov/medlineplus/ency/article/003089.htm
It may not ‘sound’ very serious, and in terms of a ‘crash’ it might seem most inappropriate to use: but because we don’t yet know why we feel like we do all the time, and even worse some of the time: malaise is one word that can describe this feeling.
I don’t think it denigrates how I feel. But I do look forward very much to being able to use a more definitive noun to describe why I am feeling like this.
Until then I am afraid we are stuck with ‘malaise’ and also with ‘fatigue’. Medical terminology.
It does kind of describe a non-crash state, it’s true……but it is connected with exertion as you note and that’s the problem.
It’s just not descriptive of the crash state that comes from overdoing it. For me that means lots of muscle pain, fatigue, difficulty thinking, dizziness – far more severe symptoms that one would associate with malaise.
I’m glad it has a place in medicine – and I hope they can move to “relapse” or something like that.
To advocate “malaise” and “fatigue” is a “lumper” perspective. This goes to the heart of the matter: does “fatigue” and “PEM” define a discrete population? I think to the “average” clinician, no.
The frustration for many is to hear these terms while they have clear dysfunction: dysautonomia, MRI abnormalities, proven sleep issues, etc yet have to hear they have “fatigue” and “malaise”. To the ICC’s credit at least an attempt was made to isolate people who share something other than being tired and a general feeling of something not being quite right.
ICC had it right.
Carol, even the authors of the ME International Consensus Criteria are with you on this! The section on post-exertional neuroimmune exhaustion begins with this sentence: “Malaise – a vague feeling of discomfort or fatigue – is an inaccurate and inadequate word for the pathological low-threshold fatigablity and postexertional flare”. That was meant to be an improvement over the CCC terminology (as well as doing away with the 6 months of fatigue criteria). Well, the IOM brought both back…
(By the way, MS sufferers can relate, I think: while we are stuck with a vague “malaise”, their lives is ruined by something commonly referred to as “lassitude”! Doesn’t that also sound incredibly debilitating…)
Lassitude! …..
I like this:
“pathological low-threshold fatigablity and postexertional flare”
I have fibro, not CFS, but I have found “pacing” incredibly efficacious for avoiding the post-exertional flare. Massive thanks for Cort for being the means of my learning about this.
And with me it is not a collapse of energy, it is a flare-up of debilitating pain that comes on me gradually over 24 hours or more after the major exertion. I would prefer to call it “post-threshold-exceeding exertional flare”.
I hypothesize that people with fibro and perhaps CFS, have a threshold for exertion that can be moved up. Mine is certainly moving up now that I have been pacing carefully for months. In fact as long as I don’t do any digging deep for bursts of effort at all, I can do fairly impressive sustained exercise.
I have been getting back into cycling with groups that include some pretty fit competitive riders, and don’t let myself get tempted into unofficial racing. The ones who can’t resist it blast off up the road into the distance, but they are quite impressed by how few minutes I arrive behind them at the final destination 30 miles later – especially for a guy who has turned 50, had given up riding for the last decade, has only been doing it again for a couple of months now, and still weighs around 50 lbs heavier than when I was really fit and competitive 25 years ago pre fibro. My bike is also very out of date and unfashionable!
What I would love to get medically established is, can people whose threshold is so low they can’t take a shower standing up, somehow do “workouts” of SOME kind at an intensity so low that they don’t provoke a flare-up or collapse? And slowly move their threshold up? All the decades I have had fibro, I can see all my fighting to not let the pain render me sedentary, at least stopped me spiralling down into a lower and lower threshold, and more and more easily provoked flare-ups.
I also hypothesize that the different limbs and muscles and parts of the body, have their own thresholds, and some that get less working out, remain more prone to flare-ups of pain under conditions of provocation. I have been doing a lot of cross-training to try and build up my threshold in all muscles. Prior to knowing about pacing, I was giving myself agonising flare-ups of pain in most of my most-used muscles. I still have residual spots of that pain in my upper arms and my arms are still a weak point with me. But my pacing in the swimming pool and gym is slowly paying off.
I still cannot run at any level of intensity, not even slow-mo, without provoking a flare-up. It is interesting that I can perform so well comparatively on the bicycle yet I cannot run. I suppose it is all about the body weight being supported on the bicycle, and it is an efficient machine using leverage and rotation and wheels, to overcome the disadvantage of weight. I am definitely limited, though, in how steep a hill I can ride up without self-harming; I definitely have to keep it low speed in low gears.
Lassitude describes it well – as posted by Phil in his reply about it:
“pathological low-threshold fatigablity and postexertional flare”
It seems to describe a mitochondrial problem. Maybe someday when research dollars are less focused on primary genetic disorders they will develop a better understanding of the later-onset kind. When the energy source flounders, all systems suffer.
Yes, I totally agree. I have hated the term “malaise” as much as Chronic Fatigue Syndrome. It is such a “blah” word and does not indicate at all the depth of the results we suffer after almost any type of exertion. We really need to get rid if this word in connection with our illness. I think most peolple’s conception of the word, is feeling “a little out of sorts. PLEASE get rid of this ridiculous description of what we feel like.
Actually I don’t have a problem with post-exertional malaise. To me, it captures perfectly that absolutely horrible feeling I get the day after I do too much. I actually was pleased that the IOM moved away from fatigue and onto malaise. I wouldn’t get my knickers in a twist about malaise not being a powerful enough term. Both ME and CFS are so misguided, that I think SEID is a huge improvement and focuses the mind on how limited we patients are in what we can do in a day. When I talk to my non-ME/CFS doctors and describe how I feel, all of them “get it” when they hear the description of what PEM feels like. And few to none of them used to “get” CFS, so I must have heard 100 times “I feel tired too.” PEM is the hallmark of our disease and the IOM has finally put it in the forefront. I was afraid they would belittle the disease. I was pleased that their reaction was just the opposite and Ellen Clayton was so completely won over–she is now an advocate for us to “act up”.
Malaise describes what I feel when I am very ill or crashing – a general feeling of unwellness that incorporates sometimes profound levels of mitochondrial type fatigue, in addition to more specific symptoms. As a pragmatic medical term it is used, to my knowledge, to describe a complex sickness feeling that is difficult to describe and not disease-specific, therefore not diagnostic by itself, but another indicator.
Hypersensitivity to common nomenclature sounds like a personal issue to me. Here is my personal issue: I would far rather say I was feeling malaise than systemic exertional intolerance, ie, systemic laziness.
“Post-exertional relapse” is a term I could live with however, and might even be preferable. It is less specific than malaise and keeps the focus where it is most needed – on a mechanism rather than a symptom.
I do not quite know why ‘malaise’ speaks to me. I have called what I am feeling – that overall discomfort, muscle pain, and so forth – similar to the start of the flu – malaise. I have called it that for the past 20 + years. It is generalized, non-specific, and I am rendered incapable of functioning. It is what I feel when I am in a relapse. The word relapse says nothing about the feeling I am experiencing. I like the word malaise as a much, much more accurate word than fatigue. Perhaps I like it because I am trained in medicine. Perhaps it sounds more medical to me – but I am not convinced that is why. Perhaps the problem people with CFS have with the word is more related to our experience of not being fully recognized.
I said a lot more a bit above this – I don’t associate “malaise” so much with pain, but if the medical people mean it to include that, then I like the term. With me – I have fibro, not CFS – it is all about the pain.
I do suffer fatigue and lassitude as well, but the pain is my reason to give up. I never have, and I think I can thank my continual fighting through the pain, for my having maintained a certain threshhold of capability. The pain was ALWAYS associated with exertion above my threshold for too long. But because the pain is so slow building up to its peak, I never associated it with a particular burst of exertion. It is only reading about it and trying pacing (avoiding the bursts of exertion and stress positions that quickly made me breathless and with heart thumping), that has me saying WOW, this works!
Some people have been discussing the retirement of malaise and if it becomes a consensus, maybe folks can get together and work on it. One suggestion I liked was Post -exertional -relapse. I’m sure that there could be many others. Certainly symptoms increase significantly
after going outside our ‘energy envelope’ what ever it is that day. The reason that people haven’t really paid that much attention to it is that there is so much else. But it could be something that would be a quick fix/CDCtime; and it could be very helpful.
“Post-exertional relapse” might indeed be a quick fix for identifying a cardinal feature of the disease. It has the additional advantage of suggesting something is wrong to begin with, without naming what it is and limiting it to a single symptom.
“Malaise” used in relation to CFS doesn’t bother me as much as “fatigue”, because it’s not part of the current name, and therefore not well known amongst the general public. That said, it’s not a great term for the medical community to be using, because it conjures up images of someone (probably a woman) draped languidly across a couch, palely loitering and sniffing smelling salts. This is not my experience of exertion-related fallout. Instead, I feel like my body is in some kind of post-war apocalypse … a war, that is, with itself. Yes! That’s what we should call it: Post-Exertional Apocalypse Syndrome – PEAS!
“Malaise” used in relation to CFS doesn’t bother me as much as “fatigue”, because it’s not part of the current name, and therefore not well known amongst the general public. That said, it’s not a great term for the medical community to be using, because it conjures up images of someone (probably a woman) draped languidly across a couch, palely loitering and sniffing smelling salts. This is NOT my experience of exertional fallout. Instead, I feel like my body is in some kind of post-war apocalypse … a war, that is, with itself. Yes! That’s what we should call it: Post-Exertional Apocalypse Syndrome – PEAS!
Personally I find just saying systemic exertion intolerance disease to be very confusing. While I am aware of the reason behind the new name, I’m not sure that I will be stating this at a new Dr.’s appointment. Just by itself, (I feel) is going to put us in a position to explain what it is and now defend the reason for the new name. In reading literature I found that only 1/3 of Medical schools lecture on the topic of CFS and that only 40% of Med books even mention it. If we are still battling and or trying to convince uniformed Dr.s about an illness that started gaining recognition in the 80’s then officially recognized by the CDC in 1994, how is it that 25 years later this new name is going to change their minds? In reference the the term “exertion” I also feel this is an injustice, as one can do absolutely nothing for days, but lay around, and still be in crash mode.
“Malaise” (like “fatigue” and “exertion”) doesn’t cut it. They all connote mild or commonly experienced forms that don’t come close to our experience. A couple of nights ago I said to my wife “I sure hope dying doesn’t feel any worse than this.”
Somewhere, (maybe in the Canadian Consensus Document* – I’m too tired to look now) I saw the term Post Exertional Neurologic Exhaustion. That’s not too bad. Post-Exertional Exhaustion could work too, except for the acronym.
I sure wish we could get past all this name stuff. Not that it’s unimportant, but it’s less important and a relative waste of time, energy and resources that could be spent on research and treatment.
Hang in there everybody.
*The CCD, a superb description of what we go through. Despite all the time-wasting, under-funding, messing around with a “name” and generally ignoring this disease by the NIH, CDC and IoH here in the States, the Canadians nailed it way back in 2003. If you haven’t seen it, see it here. http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf
I can’t think of a better word than malaise. Malaise is what you feel when you are ill, when something is wrong inside. ME/CFS is not just being tired, or not being able to exercise. We are ILL. I tell people it feels like having a bad flu on top of being run over by a bus.
The fact that sometimes the malaise is so severe that I think I am dying does not mean it is not malaise, any more than the exertion of walking to the bathroom is not exertion.
We don’t need a new word, we just need to rehabilitate the reputation of the perfectly good one we’ve got.
I have used the term malaise and feel it accurately describes my day to day feeling of being chronically ill. I think it captures nicely in one word the complex stew of symptoms that could take paragraphs to explain otherwise. However it seems to be a word that means very different things to different people, for better or worse, so I can understand people wanting to find a better word or words. Growing up and having a scientific background I never learned to associate the word malaise with the artsy connotations of illness Carol and others have mentioned, and I have not had an experience where using it caused a negative view of my illness that I am aware of (as opposed to CFS which has caused problems with some medical professionals).
Also I would agree that it is important to get the right words but I’m not sure fighting it out is the best use of our energy. I think educating people about the seriousness of the illness, and having our family and friends do so as well, whatever the illness is called is the best way to move things forward. Our biggest problem is not the name and the words used but the fact that we are largely invisible in the media (recent news coverage aside).
I think unfortunately nomenclature is the least of our problems until we get a simple test, and some reliable treatments for our disease. Every time a mention of the IOM Report, or the Lipkin Study, shows up on MedScape it’s amazing how many hundreds of derogatory comments show up written by MD’s. To them the world is still flat unless you can take an X-Ray to diagnosis it, or give a medicine to treat it! It’s truly a sad state of affairs.The concept of the caring doctor is history.
Fully agree with this post.
Dr’s comments should be in someway linked to a them professional so once we do have conclusive proof and a test they are duty bound to undertake further training and proof/a test to show that they are fit to continue as a dr or lose their license. Their future is of no more importance than our own and the sooner their they are either brought up to speed or removed from the system the better to reduce any further damage. First do no harm.
Sadly I agree with you. I do feel that medscape comments made by Drs should be linked to them professionally. Once proof and a test is found Drs who have left such comments should be required to then have to undergo further training to bring then up to speed(and maybe meet some of us who are very bad) and have to pass further tests to make sure they are up to continuing as Drs. Their futures are of no more importance than ours and if they are unwilling to do this then they should have their licences forfeited. First do no harm and harm they are doing by these comments. More caring and understanding attitudes to medicinal care should be promoted rather than what we seem up against at the moment by the flat earth society.
Well, I have never had too great a problem with PEM, as malaise is a medical term. It is difficult to pick the best name to call this, because it is such a devastating feeling; the feeling that you are totally collapsed. I think I would call it Total Body Collapse [TBC], except that probably isn’t medical enough!!
I have never had a great problem with PEM, probably because it is a medical term. The symtoms are devastating and if I could chose a name, I would call it Total Body Collapse [TBC], because that is what I feel. Not very medical sounding though!!
According to Medline: “Malaise is a generalized feeling of discomfort, illness, or lack of well-being.
Considerations
Malaise is a symptom that can occur with almost any health condition. It may start slowly or quickly, depending on the type of disease.
Fatigue (feeling tired) occurs with malaise in many diseases. Along with malaise, you can have a feeling of not having enough energy to do usual activities.”
http://www.nlm.nih.gov/medlineplus/ency/article/003089.htm
I prefer the term, “post exertional neuroimmune exhaustion” as used in the International consensus primer for Medical Practitioners (Carruthers et al) or the simpler “post exertional exhaustion” which I think is used in the International consenus criteria.
The Canadian Consensus Criteria calls it PENE – post exertional neuroimmune exhaustion. that’s a mouthful, but more accurate.
Why are we denied the term ‘disease’ ? No one knows why some present with Parkinson’s Disease. That does not stop the dx or deny the patient entitlement to the word ‘disease’. I am collapsed, have felt near death for 22 years, struggle to bathe, eat, perform the most basic tasks. I am typing with one hand right now and using two fingers. My arm burns like I am doing a hundred reps of weight training. I am out of breath from typing! lolol BUT…. the entire medical community sees me as an inconvenience. I get referred away endlessly. I experience this as a crime against my humanity.
I agree with you Nina that it’s like a crime against humanity. Although you have a sweet spirited giggle of saying you are out of breath from typing–I just wanted to say I understand how you feel and how hard it is–yet we all have no choice but to keep pushing our selves forward–even though we do feel like we are dying a slow awful death at times. Thank you for taking the time to type that 😉
Well said Nina and Jlyn, I agree with both of your comments.
Why do we have to have the phrase ‘post exertional’ in the description ? And why do we need to describe it ? Get rid of the initials and give it a proper name. ‘Syndrome’ indicates that something’s going on in the body but the medical profession don’t know what it is.
Everyone has heard of ‘Lupus’ or ‘Cancer’ even though they might not understand the mechanics of those diseases, so why complicate it ?
We need something simple and ME,CFS and SEID do not cut it.
For me – PEM – post exertional malaise describes a day when I need to rest up to avoid a crash … Post extertional (Neuroimmune ) exhaustion PENE – describes a bad day or a crash day…PENE or maybe just PEN – post exertional exhaustion is what I feel.
Should be physical exhaustion
Its not much better than fatigue for its ability to accurately describe a body system failure….I like death warmed over or zombiefied?
I have concerns over the words post exertional. I am exhausted without trying to exert myself so there isn’t any post about it. And what about the non-physical exhaustion? The brain fog? The sleep problems? There’s nothing post about them.
I quite like ME, at least until someone can sort a decent disease name. I hate fatigue and syndrome, and malaise doesn’t fit the bill either. For my own situation, OGD – old git’s disease. 🙂
Post exertional malaise? I don’t need to exert myself to feel malaise! I wake up exhausted! We need a name that describes the devastation that comes with this disease!
It has always been the same with me. Nothing is needed to set off our thing in me. Always unexpected. My symptoms have waxed and waned for years. In fact sometime they have lifted for months, days and even years. When they return, usually very suddenly, there is no relationship to any exertion. If fact there were even times when they were gone for so long that I thought I was cured, forgotten about it and feeling great….then BAM out of nowhere, no warning and no explanation. I am suddenly once again knocked, the whole catastrophe….This is the norm. No cause. Idiopathic.
1) The CCC uses PEM and the term has been used in studies of 2 day CPET. The IOM was tasked with looking at terminology for the overall disease, not individual symptoms. I can also imagine how much more uproar there would be had there been two name changes — not just for the overall disease but also a symptom.
2) “PENE” means “penis” in Spanish.
3) There isn’t good scientific evidence yet that the immune system or neurologic system is “exhausted” post-exertion. What is meant by “exhaustion” and I mean beyond just symptoms, which can vary a lot among patients after exertion? It’s not like there are any studies showing that the immune system becomes deficient after exertion. In fact, some cytokines are elevated after exertion:
http://www.ncbi.nlm.nih.gov/pubmed/20230500
4) “Relapse” has a specific meaning in medicine. Usually it’s used after someone has recovered from an illness or has no symptoms at all but then has a recurrence of symptoms/ disease. It’s not used merely to describe fluctuations in symptoms (symptoms always present but better/ worse at different times) while someone is chronically ill.
In Mark VanNess’ presentations of Workwell Foundation’s repeat exercise testing, he said they prefer “post-exertional exacerbation of symptoms” to PEM.
I think PEM is misleading in that it suggests malaise only occurs after exertion. Malaise, as broadly defined in medicine, can be pretty constant for many SEID folks, and gets worse after exertion.
CDC’s brochure, “Recognition and Management of Chronic Fatigue Syndrome: A Resource Guide for Health Care Professionals” gives a specific definition, “postexertional malaise, which is defined as exacerbation of symptoms following physical or mental exertion, with symptoms typically worsening 12-48 hours after activity and lasting for days or even weeks.”
At first that definition looked fine to me, but the more I look at it, the more it looks like someone was just trying to fit a square peg (post-exertional exacerbation of symptoms) into a round hole (medically defined malaise). It doesn’t seem to fit! What are those symptoms before exacerbation, if not malaise?
There seem to be 3 definitions of malaise:
1. Layperson’s definition
2. Medical definition
3. ME/CFS SEID definition, an attempt to redefine malaise as an increase in severity of symptoms. If this definition sticks, it will need to be clearly differentiated from the medical definition in order to avoid ambiguity and sloppyness in future research studies and effectively educate clinicians.
I like “post-exertional exacerbation of symptoms.” It doesn’t have a neat acronym, but at least it’s an accurate description of what they say PEM means.
Nice and clear, Carol – thanks…I think you summed that up very well 🙂
Malaise seems to be a word that doctors understand to some degree. But I took from the name proposed by the IOM group that the word was Intolerance. Systemeic Exertional Intolerance Disease.
The IOM group stuck me as energetically pushing doctors to make the diagnosis, and treat the person, not let it go, making no diagnosis for fear their doctor-peers will scorn them at the golf course. I am not a doctor, but that is what hit me first from the writings and the speeches from that committee. It is important to make the diagnosis, get involved with treating the symtpoms that can be treated. Guide a patient in cutting back right away as the best chance for improvement later. To increase the likelihood of doctors making such a HUGE change, the IOM group simplified the steps for making a diagnosis. That pair of steps seems really logical to me.
In their scouring away of the medical literature on M.E. or SEID or CFS, it seems they kept the Jason study from 1996 or so (is that the right year?) when he estimated both the likely number of adults with CFS in the US (800,000 to 1,000,000) and that only 10% of that number held the diagnosis of their health problem.
Getting all, or nearly all the people with this disease in doctor offices would change a lot, especially as doctors begin to see what first steps do help a patient, and which steps truly harm a patient. And then there are so many more people to provide physical samples as their disease progresses.
Malaise, though he never said it in a speech, earned Jimmy Carter bad political reviews, and as a medical term, it sounds rather vague. I do not think it will last, once the number of patients get their diagnosis soon, not 10 years after onset or never, as is too often the case now. With a lot of patients getting diagnosed in the first 6 months, I think new information would come pouring in, and I so hope, limiting the number who are disabled forever.
All too late for me, unless I can master the yoga on the floor program and regain some physical function.
Can I just say “I love all you guys?” Thank you for a great discussion and great information. Hang in there everyone with whatever it is we have.
Thank you, Carole and Cort, for shining a bright light on post-exertional malaise/impairment.
For a month in 1999, I felt like I had a difficult case of the ‘flu’ and was eventually got a diagnosis of Lymn’s Disease. Since then I have had many recurrences of these symptoms, even one associated with a red circle on the outside of my elbow. What you all describe is very familiar to me.
Yet, in the 1970’s I edited a book, with Dr. Ernst Simonson, on the “Psychological Aspects and Physiological Correlates of Work and Fatigue.” Bob Kinsman and I even wrote a chapter on “Subjective Symptomatology during Work and Fatigue.”
Now I experience something like chronic fatigue. I have run a mile in a little more than four minutes and marathons in less than two hours and thirty minutes. Now I am my own experimental subject!
Phil Hayward: your comments on pacing are ‘right on.’ Pacing, frequent rest/naps, ibuprofen, and chocolate have been very helpful for me. As far as the term ‘malaise,’ or lassitude, they make sense to me.
Again, many thanks for all of you alls’ comments and blogs. I will soon copy/link this post to my web site, that tends to be very scientific: http://www.endurance-education.com; okay Cort?
Thanks for chiming in Phil. An ex marathoner – that’s quite a fall….:). Thanks for the link.
Phil Weiser; I think that I succumbed to fibro in spite of being very fit at the time a quarter century ago, due to very distressing chronic stress in my work and life. I did think my fitness made me proof against damage from this (exercise was like my daily outlet), but I was very wrong. would be interested what you think caused your succumbing.
Once again, a cardinal symptom of cranial pressure and pain is excluded. “Encephalitis” is a key descriptor and should be used. Malaise is just one part of the picture. Leave out these specifics and we’re left with labels for lazy layabouts and underfunded research.
Malaise happens when I think of what I pay for health care insurance versus what I get, and thinking about the FDA runaround on Ampligen triggers a migraine.
Encephalitis is a cardinal feature of ME, but ME seems to have been minimized in the new criteria for the re-designated CFS. I am still trying to figure out where everything fits in relation to ICC and CCC definitions. ME continues to have it’s own ICD code(s) such as G93.3 (the mischaracterized “benign” ___), so there is always that option.
As one who fits the criteria for ME and has experienced chronic head pain at times (but not always), I would not call head pain a cardinal feature, rather, the cognitive impairment, which symptom IS included in criteria for the so-called SEI Disease.
It’s amazing how one word can be experienced so differently from one person to the next.
For me, ‘malaise’ has meant lazy, yet the French word ‘mal’ means ill. It was the word banded around about the old spinster aunt who did nothing but stay in bed, complaining about her hurts with medicine bottles everywhere….
Yet, now I know about FM and CFS… Obviously my understanding of someone being like that has completely changed… But the word itself, still doesn’t quite cut it!
I appreciate the thoughtful perspectives and alternative possible terms offered by all the posts. My inner English teacher especially enjoys Cecelia’s observation about the French origin of the word ‘malaise’ and its suggestion of “une condition feminine”.
Yes, Camille was acutely ill with tuberculosis and ‘malaise’ has a specific medical use and history associated with many serious diseases. In my mind, however, the word’s popular connotations are also flavored by President Carter’s 1979 comments on an American “crisis of confidence” which came to be known as his “malaise speech.” Here Carter described what he considered an invisible threat to the nation:
It is a crisis of confidence. It is a crisis that strikes at the very heart and soul and spirit of our national will. We can see this crisis in the growing doubt about the meaning of our own lives and in the loss of a unity of purpose for our nation.
Words like ‘heart and soul and spirit,’ ‘meaning’ and ‘unity of purpose’ all point to a psychological context for an American lack of will to take steps, including personal sacrifice, to remedy what Carter presciently warned was a serious energy crisis.
Connotations or overtones of meaning we have unconsciously internalized may smother us with misrepresentations.
I’d like to stress also that PEM as the defining symptom is still just one symptom. I don’t think the phrase is meant to describe the whole disease, which certainly includes so many other awful symptoms.
So I’m not criticizing it as too limiting. Instead, even though it might be acceptable medical jargon, it conjures a misleading picture of someone who refuses to think positively and take strong action to conquer something. Someone who just languishes and complains. Someone suffering from a spiritual or mental weakness of will.
Also, though my general condition may be characterized by the medical definition of ‘malaise’, the state I find myself in after overexertion is so much more debilitating and painful. Thank you, Carol H, for clarifying the issue by explaining the 3 definitions of ‘malaise’ (I’ve been focusing mainly on the layperson’s response), and reminding us of the Workwell preference for “post-exertional exacerbation of symptoms.” That makes sense to me.
In the end, in spite of my cringing at ‘malaise,’ I agree that the IOM has provided a strong report and hope that we move quickly toward funding research and treatment. Sorry if I’m perpetuating the focus on (in Jody’s words) “all this name stuff”.
Well said, Carol! Excellent article and excellent comments!
Bravo, Carol!!! You expressed exactly what I’ve been thinking but didn’t have the strength and energy to write my own article these days. While I’m usually one to think positively about any validation from the medical community and, like you, I cautiously hope that the recent publicity will have some kind of positive effect…I have to admit I’ve been a bit baffled by much of the ME/CFS’s community’s positive (or even neutral) response to the new name. When I first heard it, I thought it sounded like a bad SNL skit! I think “malaise” is even worse than “fatigue,” at least to the average person who doesn’t know the medical definition of PEM. I can only imagine the resulting debate about what “exertion” is, and the fodder for late-night comedians that it presents. Imagine: “Oh, not tonight, honey, I have exertion intolerance.” The new diagnostic criteria are at least as ill-defined and subjective as they ever were. What’s more, while many people have applauded the adoption of the term “disease” instead of “syndrome,” I’ve since heard people mis-quote the name as “systematic exertion intolerance disorder” on major media appearances (such as the ever-maddening Dr. Oz). While CFS is admittedly a terrible name, now we have a new terrible name that no one recognizes and is even harder to remember or explain. And it’s still just as easy for people to trivialize a horrifically debilitating disease by saying “oh, I must have that too.”
GLAD TO HEAR I’M NOT THE ONLY ONE UPSET WITH DR. OZ! THE ALL KNOWING EXPERT ON ALL THINGS. I SO WISH I WAS WELL ENOUGH TO CRUSADE ON THIS PROBLEM–GET THE WORD OUT IN CANADA, AT LEAST MY OWN LITTLE CORNER.
Names are important no doubt about that. We have learned that the hard way. There are two names that are not quite accurate here. One is post-“exertion”, because that implies you did something to cause the relapse which isn’t always the case.
The other word, “malaise”, is not strong enough for what we experience. I refer to it as “hit by a truck” because that is how it feels to me. Not sure how to put that into one word.
The symptoms of CFS/PEM is so similar to overtraining syndrome, it amazes me that more people are not looking into the connection. I happened to believe that PEM is basically OTS triggered even by a slightest exertion. And if you ask the overtraining syndrome specialists, they will say that Post-exertional Neuroimmune Exhaustion describes the overtraining syndrome much better than PEM. So my vote goes to PENE.
I love this. There is literally no way to describe this sort of fatigue to someone who has never experienced. I tend to call it “flat pancaked”. Thank heavens I have a very supportive husband!