What is an engaging, informative, short, accurate description for ME/CFS?

R

RoseE

Senior Member (Voting Rights)
I am searching for a couple of sentences that describe what ME/CFS is, while giving some insight into how it affects the body and daily life.

A couple of reasons for this search
  1. A powerful sentence (or two?) could be used by pwME and their supporters to more successfully educate those around them. With the result of getting understanding and support more quickly.
  2. We need simple messages for advocacy and awareness raising. People can so easily turn off if they are presented with paragraphs of information.
Perhaps this is too hard an ask?

I don't find statements like "ME/CFS is a serious long-term illness." to be enlightening. The reader has no idea of the impacts, or what /if there are any impacts on daily life.

Statements like
  • "Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, chronic, debilitating disease with systemic effects."
or
  • "Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities."
from the CDC perhaps paint the picture a bit more clearly. But raise the question what systemic effects?

What do you say when you want to describe ME/CFS succinctly?
 
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A search across likely websites:

CDC:
https://www.cdc.gov/me-cfs/index.html

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have severe fatigue and sleep problems. ME/CFS may get worse after people with the illness try to do as much as they want or need to do. This symptom is known as post-exertional malaise (PEM). Other symptoms can include problems with thinking and concentrating, pain, and dizziness.

https://www.cdc.gov/me-cfs/healthcare-providers/index.html

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, chronic, debilitating disease with systemic effects. ME/CFS is characterized by reduced ability to perform pre-illness activities that lasts for more than 6 months and is accompanied by profound fatigue, which is not improved by rest. A hallmark of ME/CFS is that symptoms can worsen after physical, mental, or emotional effort, a manifestation known as post-exertional malaise (PEM). Patients with ME/CFS also have unrefreshing sleep. Other common manifestations are orthostatic intolerance, cognitive impairment, and pain. As can be observed in people with other long-term chronic illnesses, secondary psychological symptoms such as depression and anxiety may also be present in some patients with ME/CFS.

https://www.cdc.gov/me-cfs/healthca...clinical-course/etiology-pathophysiology.html

ME/CFS is a biological illness, not a psychologic disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain. These patients have multiple pathophysiological changes that affect multiple systems. It is not known whether these changes occur prior to the onset of the illness or as its consequence. These changes include:

  • Immune system abnormalities – some people with ME/CFS have impaired natural killer cell function and/or T cell function, chronic higher production of inflammatory cytokines, and in some cases slight increase in some autoantibodies (rheumatic factor, anti-thyroid antibodies, anti-gliadin, anti-smooth muscle antibodies, and cold agglutinins).

  • Cellular metabolism abnormalities – some people with ME/CFS also appear to have impaired ability to produce energy from the usual “fuel” that cells use to produce energy: oxygen, glucose, fatty acids, and amino acids. Exercise studies in adults have revealed impaired oxygen consumption and activation of anaerobic metabolic pathways in the early stages of exercise.

  • Neuroendocrine disturbances – some people with ME/CFS report physical or emotional stress before they become ill, which can lead to dysregulation of the hypothalamic-pituitary-adrenal axis (HPA axis). Some patients with ME/CFS have flattened diurnal cortisol profiles compared to healthy people, but their cortisol levels are still within the normal range.

  • Blood pressure or heart rate regulation abnormalities – some people with ME/CFS, particularly adolescents, experience symptoms of orthostatic intolerance. Patients with orthostatic intolerance develop a worsening of symptoms with quiet upright posture and improvement (though not necessarily full resolution) of symptoms with recumbency. Two common forms of orthostatic intolerance experienced by patients with ME/CFS are:
  • Neurally-mediated hypotension (NMH): an abnormality in the regulation of blood pressure during upright posture. NMH is sometimes also referred to as neurocardiogenic syncope, vasodepressor syncope, vaso-vagal syncope, “the fainting reflex”, and delayed orthostatic hypotension.

    Postural orthostatic tachycardia syndrome (POTS): an abnormality in the regulation of heart rate in which a change from lying to standing causes an abnormal increase in heart rate; the heart is usually structurally normal.​

Emerge Australia:
https://www.emerge.org.au/what-is-mecfs

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and disabling disease that affects many parts of the body, including the brain and muscles, as well as the digestive, immune and cardiac systems, among others. ME is classified as a neurological disorder by the World Health Organization.
…
While there are currently no diagnostic biomarkers or tests for ME/CFS, there are many biological abnormalities that researchers have found in people living with the condition. These include an abnormal physiological response to exercise, altered immune function, changes in the bacteria in the gut, and impaired energy production.

Open Medicine Foundatin:
https://www.omf.ngo/what-is-mecfs/

Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME / CFS) is a life-altering and complex multi-system disease that can present as an array of different symptoms that may change over time and differ from patient to patient. The most common symptoms of ME/CFS are post-exertional malaise, unrefreshing sleep, profound fatigue, cognitive impairment, orthostatic intolerance, and pain.


NZ sites:
https://www.healthinfo.org.nz/index.htm?Chronic-fatigue-syndrome-CFS.htm

ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a debilitating, long-term illness that affects multiple systems of the body.


https://anzmes.org.nz/what-is-me/

ME/CFS is characterised by incapacitating fatigue, (experienced as profound exhaustion), problems with concentration and short-term memory, non-refreshing sleep and inability to exercise.



https://m.e.awareness.nz/what-is-me

ME is a debilitating, chronic, multi-system disease that affects the neurological, immune, endocrine, and energy metabolism systems.


https://mecfscanterbury.nz/#/mecfs

ME/CFS is a serious long-term illness. It affects people of all ages, ethnicities and both male and female. Overseas studies suggest the prevalence of ME/CFS is 4 in 1000 people, implying that there are 20,000 people affected in NZ.

…

Researchers are finding issues with energy production, blood circulation and oxygen use.


US MECFS Clinician Coalition
https://mecfscliniciancoalition.org/about-mecfs/

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, complex, debilitating, multi-system illness...


ME-Pedia
https://me-pedia.org/wiki/Portal:Myalgic_Encephalomyelitis

Myalgic encephalomyelitis (ME) is a chronic, inflammatory, physically and neurologically disabling immune mediated disease that presents with symptoms involving multiple bodily systems. It is frequently triggered by a viral infection or a flu-like illness.[1] ME presents with symptoms in the central nervous system (CNS), autonomic nervous system (ANS), immune system, cardiovascular system, endocrine system, digestive system, and musculoskeletal system.[2][3] It is classified by the World Health Organization (WHO) as a neurological disease in 1969.[4]

https://me-pedia.org/wiki/Immune_system

Myalgic encephalomyelitis (ME) is a complex multi-systemic disorder which causes neurological impairments, energy metabolism/ion transport dysfunction, and immune, gastrointestinal and/or genitourinary symptoms.[6] The Centers for Disease Control and Prevention (CDC) notes that ME/CFS impacts multiple body systems. These include the immune system, cellular metabolism abnormalities, neuroendocrine disturbances, and b
 
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RoseE said:
Emerge Australia:
https://www.emerge.org.au/what-is-mecfs

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and disabling disease that affects many parts of the body, including the brain and muscles, as well as the digestive, immune and cardiac systems, among others. ME is classified as a neurological disorder by the World Health Organization.
…
While there are currently no diagnostic biomarkers or tests for ME/CFS, there are many biological abnormalities that researchers have found in people living with the condition. These include an abnormal physiological response to exercise, altered immune function, changes in the bacteria in the gut, and impaired energy production.
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I quite like some of the phrasing here.

What about "ME/CFS is a debilitating, long-term illness that effects many parts of the body. It involves an abnormal physiological response to exercise, altered immune function, and impaired energy production."
 
Audience is important to consider. I am wanting a phrase for members of the public, rather than health professionals.
But maybe the same sentence/s could be used as an ice-breaker for health professionals too?

What do you say when you want to describe ME/CFS?
 
Here's what I was saying to my carers who were coming to help me shower and wash my hair (currently cancelled because of Covid):

ME is a weird illness where the more you do, the sicker you get.

That made sense to them. I think a lot of the people they looked after were more obviously physically disabled or frail, so getting the idea into their heads that, although I could take my jumper off myself, etc, having them help me with that and other things, meant the cumulative effect of all the activities of showering wasn't going to set me back so much.
 
I would imagine telling my next door neighbour who has no medical knowledge and isn't particularly quick off the mark. So off the top of my head...

The defining feature of ME/CFS is known as post-exertional malaise where doing anything too much physically or mentally makes the symptoms worse. Some of these symptoms are: constantly feeling completely drained of energy; problems thinking clearly; inability to stand for long without getting dizzy or feeling ill; never waking up feeling refreshed; and general pain.
 
The reason why we went for
RoseE said:
Researchers are finding issues with energy production, blood circulation and oxygen use.
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in the ME/CFS Canterbury material and why I think the Emerge information is good:
RoseE said:
While there are currently no diagnostic biomarkers or tests for ME/CFS, there are many biological abnormalities that researchers have found in people living with the condition. These include an abnormal physiological response to exercise, altered immune function, changes in the bacteria in the gut, and impaired energy production.
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is that these talk about 'what researchers are finding'. We are still some way off really nailing down what is going on. Until then, we should avoid being definitive about things like natural killer cell function and energy production. It's too easy for people to point to the holes in the evidence.

I think @Trish and @oldtimer are onto it, for now we are on safest ground focusing on PEM i.e. what people with ME/CFS experience. This is too long for what you want @RoseE, but this is what I would like people to know:

'ME/CFS is a long term illness where the amount of activity that can be done is just a fraction of the amount of activity that a healthy person can do. If a person with ME/CFS does too much, they feel sick, as though they have the flu, and have to rest to recover. For some people, 'too much' can be walking from their bed to their bathroom. And the resting time needed to not feel very ill can be days or even much longer.'
 
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RoseE said:
What do you say when you want to describe ME/CFS?
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Come to think of it, I rarely even try these days because it is so difficult to do it succinctly. What I do say when I try is, let's say, highly colloquial.
RoseE said:
I don't find statements like "ME/CFS is a serious long-term illness." to be enlightening. The reader has no idea of the impacts, or what /if there are any impacts on daily life.
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I agree, especially for a general audience. Plus, all the other, longer descriptions are packed with abstract words. Most people, the more abstract words you throw at them the less they take in. I mean, what do you see and sense in your inner mind when you read stuff like "complex multi-systemic disorder"? Do you actually process it properly or does it go in one ear and out the other? Exactly.
Trish said:
ME is a weird illness where the more you do, the sicker you get.
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That's much more likely to get through. I rather like it. But maybe a little tooooo short in some contexts.
Hutan said:
this is what I would like people to know:

'ME/CFS is a long term illness where the amount of activity that can be done is just a fraction of the amount of activity that a healthy person can do. If a person with ME/CFS does too much, they feel sick, as though they have the flu, and have to rest to recover. For some people, 'too much' can be walking from their bed to their bathroom. And the resting time needed to not feel very ill can be days or even much longer.'
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Now, if we can just reformulate @Hutan's content in @Trish's style...
 
Haven't found a general-purpose, pithy way to describe it and I don't have much opportunity to try, anyway. But some audience-specific metaphors can work (even if one defines success as the inquirer just dropping it, which is pretty much the best I've ever acheived).

For instance to a drinker one might say to imagine waking with a moderately-bad (or mild or extremely-bad) hangover so that you struggle to get out of bed before noon (or 10am or ever). And now imagine that happening every day of your life from now on.

Or to a driving enthusiast: Imagine driving down a country road on a sunny day in a Maserati convertible with the wind in your hair and then running out of fuel... Imagine having to get out and push the vehicle down the road and then up an increasingly-steep slope while yahoos in Ford Escorts and yokels on tractors drive by giving you rasberries. The more you push, the worse you feel so you stop by the road and collapse in the dirt looking up at the shiny sports car that should be whisking one away to faraway fields, which is now only a heavy burden. Is there even a gararge up the road where there is fuel? You don't even know.

Or to the mobile-phone addict: Imagine your nice, new phone going on the blink but you can still ring up the service number and you get put on hold. The muzak is terrible, and a recording promises, every five minutes, that your call is not in the least bit important to them and they are never going to get back to you. You then discover that your phone is stuck on that line, permanently. (Ah, well, it would eventually run out of charge! No! It's a magic battery!)

Tailor as appropriate to the listener.
 
The phrase "Life changing illness" can be useful. (It, or similar, such as life-altering injuries is used in the news.)
Maybe alongside X can only do 30% of what she used to.

I explained to a friend, that if my daughter wrote notes on some A-level Geography one day, the next day she could not even remember which area of the syllabus she had been reading about, let alone any of what she had written.
Friend said this had helped her understand the cognitive processing impairment.
 
Someone shared with me that they talk about their energy production being faulty.
"My energy factory is staffed by one dude, who hasn't been trained to run the facility properly. He does his best, but he messes up the energy orders. He doesn't send enough energy to places, nor to the right places."

A statement used in the MECFS Canterbury May 12th video...
"ME/CFS is a debilitating illness that affects many parts of the body.
When you live with ME/CFS, the amount of activity that you can safely do each day is severely limited.
25% of us are bed bound and many more are house bound."
 
MEMarge said:
The phrase "Life changing illness" can be useful.
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Actually, this may not have the expected effect. I tried that phrase out on some friends and a few of them interpreted it as positive. As in "I was living this horribly rushed and stressed life and then the illness gave me a chance to turn my life around and now I'm so much happier". Aargh!
 
Ravn said:
Actually, this [phrase "Life changing illness"] may not have the expected effect.
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This is the trap isn't it. Everyone brings their own perception of phrases and words. Some words can feel just right from one point of view, and then be completely wrong from someone elses.
 
Just trying this out...
"Living with ME/CFS is hard. The body's systems no longer function as they should. There is very little energy for daily activities, and the more you do, the sicker you get."??
 
RoseE said:
Living with ME/CFS is hard.
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I think that's too vague. A lot of people might react with 'life is hard, what makes you so special' even if they don't say it.

I think if we are saying so little, every sentence needs to convey something specific about ME that helps people understand why it's hard.

ME/CFS makes you feel like you've got the flu all the time. There is very little energy for daily activities, and energy runs out really fast, so you have to keep stopping and resting. You can't exercise yourself better, the more you do, the sicker you get.
 
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