Reclaiming terminology for ME/CFS

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Brain fog, and now post exertional malaise, terms that were until fairly recently only used to describe ME/CFS symptoms have been hijacked and become generic terms.

Maybe we should learn from the Fibromyalgia community?

They use fibro fog, there are many article on this (even the NHS recognise it)

eg
Fibro fog: A type of cognitive dysfunction reported by many people with fibromyalgia. Also sometimes referred to as brain fog, its symptoms include difficulty with concentration, memory deficits, and confusion. The reason for the changes in brain function with fibromyalgia is not clearly understood. People with fibromyalgia experience fatigue and are at risk for sleep deprivation and depression, but research has not supported the idea that these factors are the cause of the so-called fibro fog. Another possible theory is that the nervous system disturbances in fibromyalgia affect the blood vessels of the brain, causing certain areas of the brain to receive less oxygen at times. Also known as fibromyalgia fog.
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https://www.medicinenet.com/fibro_fog/definition.htm

While scientists are learning more about what's happening in your brain that causes the pain and some other symptoms, what's behind fibro fog remains unclear. That name says it all: a fuzzy-headed feeling that keeps you from thinking clearly. You may get distracted, forget or lose things, and struggle to keep up with conversations.

Over half of people with fibromyalgia say they have these kinds of problems, and many feel the fog impacts their lives more than the pain, tenderness, and fatigue.
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https://www.webmd.com/fibromyalgia/guide/fibromyalgia-and-fatigue

ME fog?

MEM? ME malaise.
 
I actually don't mind a generic term in this case. In Sweden there's a fairly well-known term for this set of symptoms: "hjärntrötthet" (literally "brain tiredness"). I believe it's usually called mental fatigue in English?

I like using it and have found it helpful on several occasions, because it's something that many healthcare professionals and people in general seem to be aware of, understand and respect, without me having to explain.

Brain fog often makes me feel as if I'm concussed, which is another term/set of symptoms that people in general often find relatively easy to relate to. So I've found brain fog to be one of the easier symptoms to describe to healthies.

Here's how the Institute of Neuroscience and Physiology at Gothenburg University describes it:
Mental fatigue can be a disabling consequence of traumatic brain injury, stroke, infection or inflammation in the Central Nervous System (CNS).

The condition is characterized by pronounced mental fatigue after moderate mental activity.

Pronounced fatigue can appear very rapidly and, when it does, it is not possible for the affected person to continue the activity. Typical for this kind of fatigue is a profound, long recovery time to get one’s mental energy back.
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Auto-translate said:
We use the term mental fatigue as an umbrella term for the mental fatiguability and long recovery that the person experiences. In addition, other symptoms often accompany the fatigue itself

In mental fatigue, energy and stamina levels drop much faster and more sharply than normal and fatigue occurs after mental activities. For some people, working is possible, but there can be problems with increased mental fatigue during the working day or week. Others cannot cope with work and everyday activities such as shopping, cooking, reading the newspaper, spending time with friends and family may become more than they can cope with. There is a lot for the brain to sort through and process that does not normally cause an increased mental strain.

https://www.gu.se/forskning/mental-trotthet-hjarntrotthet
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(Their concept makes it clear that it's different than the psychological/emotional fatigue that is common in for example depression.)
 
I actually think terms like fibrofog get things backwards.

How can I help, Mrs Norton?
I have terrible fibro fog today.
Ah, then you must have fibromyalgia Mrs Norton, try these exercises.

Or:
How can I help Mr Crumhorn?
I am getting these Crohn cramps in my stomach.
Ah, of course, Mr Crumhorn, you must have Crohn's disease. Pop a few steroids.

Brain fog is much more helpful.
 
Mental fatigue is a good term it suggests fatigue in mental processes but does not take away the ability to process. And mental processing has proven to be slower.

Never been a fan of fibro fog and now everyone seems to have brain fog (and a nice bit of mindfulness will help this :laugh:). I think these names trivialise the disability, as well as terms like chemo brain. But for the sake of fun and words often fall out of my mouth wrong - Mog
 
I think that the word brain fog has been reduced and trivialised until it is what most people get, like fatigue becoming tiredness.

The cognitive difficulties I have had since I was young are closer to dementia with things like wandering the town not able to work out how to get home. Very few people have said that is happening to them because of lockdown!

My working memory has always been bad on occasion but is almost non-existent nowadays. As I get worse, my sense of logic disappears too.

I have no doubt that this dysfunction exists in other illnesses but brain fog makes normal people think they know what we mean but they do not.
 
Post-Exertional Malaise: How to Cope with Crashing After Activity
You’d been looking forward to that special occasion for weeks. You managed your symptoms as best as you could and mustered all your energy to celebrate Thanksgiving with your family, attend your best friend’s wedding or make the annual Christmas party at work this year. And as a ‘reward’, your body crashes hard the day(s) afterwards.


A ‘crash’ is not the normal kind of tiredness you feel after a fun night out, but a flu-like exhaustion that can even make it hard to move your body or string words into coherent sentences. Some people describe a body crash as walking through quicksand, sinking deeper with every step you take. Others experience disorienting brain fog, intense muscle soreness or whole-body pain.

Unfortunately, this worsening of symptoms following (mild) exertion is a common aspect of living with chronic illnesses like MS, chronic Lyme and rheumatism. The most severe form of ‘crashing’, post-exertional malaise, is even a key symptom in myalgic encephalomyelitis, better known as ME/CFS or chronic fatigue syndrome. Even small physical or mental efforts, like going for a longer walk than usual or trying to make conversation in a crowded place, can trigger the onset of post-exertional malaise (PEM) in ME/CFS patients. This can cause a health setback that lasts for days or sometimes even weeks. PEM is one of the main reasons why it’s such a challenge to pace your energy and work on recovery from ME/CFS.

Of course it’s best to avoid push-and-crash cycles and overexerting yourself, but life isn’t always predictable and manipulable. Sometimes the simplest activity can set off symptoms. Even changes in your routines, like staying up late and sleeping in, eating festive foods and drinking alcohol may send you on a downward spiral. Not to mention that some things in life are worth pushing your limits for, even if it means crashing hard afterwards.

Whenever possible, I strongly advise you to become an expert at pacing, take pre-emptive rest before events, plan recovery time afterwards and stop activity as soon as you notice the warning signs of a crash. But for the inevitable moments when you can’t prevent a collapse, what can you do to best cope with crashing caused by overexertion?

What works well for your specific situation, depends a lot on your illness and the symptoms you experience, but here are some general coping tips.
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https://thehealthsessions.com/post-exertional-malaise-how-to-cope-with-crashing-after-activity/

pretty soon everyone will be saying they have PEM.
 
Sly Saint said:
Post-Exertional Malaise: How to Cope with Crashing After Activity

https://thehealthsessions.com/post-exertional-malaise-how-to-cope-with-crashing-after-activity/

pretty soon everyone will be saying they have PEM.
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Though I am not a fan of the word ‘fatiguability’, it or an alternative should be used in conjunction with PEM. Only if it is made very clear that PEM is different to just tiring, even tiring quicker than an well person, will people understand what is meant by PEM. Also hopefully this will prevent the inappropriate overgeneralisation of PEM to any activity induced fatigue.

In many medical conditions, people display increased or more rapid fatiguability, that is they feel tired or even exhausted much sooner than they would have pre-morbidly. This may also be true for people with ME too. Such premature or excessive fatigue will beging during or immediately following any triggering exertion.

However this is distinct from PEM which is like a change in state following exertion: it involves symptoms not necessarily connected to the activities involved in the exertion, its onset may be delayed hours or even days after the end of the trigger activity and paradoxically may continue worsen over days or even longer after starting rest.
 
The difficulties involved in living with chronic illness makes people seem to get tired more easily because of the extra effort needed to do anything. Healthy people think of going on a night out as more difficult than usual because it is for them too. What they do not appreciate is that every single step in the process takes more energy, nothing is free. Washing your hair when you have MS or Parkinson's or RA is very difficult for instance.

People with ME have the added burden that they have immune system flare ups if they use too much energy so they have the same problems with washing hair and so on but the next day they have to cope with swollen lymph glands, sore throats and suchlike. Then they have a prolonged recovery as shown by the CPET testing where people with other diseases such as MS were recovered within 24 hours while people with ME had a much lower level of energy available to them.

It means that a single night out can make our bodies feel as if we had the night out the next day as well or even more.

The two types of fatigue are not distinguished becasue of the poor understanding of ME so researchers are forever saying that this and that also gives PEM so they have CFS as part of their illness.
 
Peter Trewhitt said:
However this is distinct from PEM which is like a change in state following exertion: it involves symptoms not necessarily connected to the activities involved
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It's abnormal to have arm weakness/exhaustion after only using your legs and vice versa, or weak sore calf muscles that feel like you've climbed a mountain after concentrating for too long.

Who sways like a drunk after talking too much?:emoji_hand_splayed:
 
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The more I read the more I believe this is a big issue for us.

I recently saw a picture of a leaflet with guidance from the CDC which said PEM is when you get an increase in symptoms from exertion that previously did not cause a problem. Since the CDC invented the term that may be what they meant all along and the frustrating thing is that it is a perfectly valid symptom that should be treated in any illness where it is a problem but it is NOT a full description of what goes wrong in ME.

The thing that is unique to ME and which is the defining symptom is that the consequences of exertion can be delayed, often not there at all for a few days, involves immune consequences not seen in most illnesses, and then recovery is unduly prolonged.

The answer may be to give up PEM as a description of these abnormalities and find a new way of describing them while keeping PEM as simply one of our constellation of symptoms.
 
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