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Reclaiming terminology for ME/CFS

Discussion in 'General ME/CFS news' started by Sly Saint, Nov 26, 2021.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    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
    https://www.medicinenet.com/fibro_fog/definition.htm

    https://www.webmd.com/fibromyalgia/guide/fibromyalgia-and-fatigue

    ME fog?

    MEM? ME malaise.
     
  2. mango

    mango Senior Member (Voting Rights)

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    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:
    (Their concept makes it clear that it's different than the psychological/emotional fatigue that is common in for example depression.)
     
    Hutan, hibiscuswahine, Sean and 5 others like this.
  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    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.
     
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  5. MeSci

    MeSci Senior Member (Voting Rights)

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    I'm not sure if this is it, as the BBC have annoyingly-few dates attached to articles, but I think this article appeared quite recently:

    How to banish brain fog and boost energy this winter - BBC Food

    I was rather worried when I saw it, as it seemed to be generalising on a specific problem that was a sign of illness, notably M.E.
     
  6. hibiscuswahine

    hibiscuswahine Senior Member (Voting Rights)

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    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
     
  7. Mithriel

    Mithriel Senior Member (Voting Rights)

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    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.
     
    EzzieD, MeSci, mango and 3 others like this.
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    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.
     
  9. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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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.
     
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  10. Mithriel

    Mithriel Senior Member (Voting Rights)

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    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.
     
  11. Mij

    Mij Senior Member (Voting Rights)

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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:
     
    Last edited: Nov 30, 2021
    shak8, EzzieD, Mithriel and 7 others like this.
  12. TiredSam

    TiredSam Committee Member

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    It happens. We have to put up with people hijacking terms all the time, as in "that's a bit OCD" or "that's a bit autistic". Annoys me every time I hear some ignoramus hijacking a word like that, but what can you do?
     
    hibiscuswahine, shak8, EzzieD and 3 others like this.
  13. Mithriel

    Mithriel Senior Member (Voting Rights)

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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.
     
    Mij, hibiscuswahine, Sean and 3 others like this.

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