Poll: Do you have Myalgic Encephalomyelitis (ICC)

I fit the International Consensus Criteria (ICC) for ME

  • Yes

    Votes: 80 82.5%
  • Atypical ME

    Votes: 13 13.4%
  • No

    Votes: 4 4.1%

  • Total voters
    97
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I definitely get brain fog. I think that's my most annoying ME symptom.
the brain uses a huge amount of calories from my observation. So back when I had insomnia sessions, I'd become simply ravenous. I'd be just starving ...(at that time, not sleeping was tied to work stuff).
So the midday siesta is part of my strategy to cope with the mental fatigue.
similar pattern for me...
 

wabi-sabi

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is this a semantic problem?
It's certainly possible. Really it's so hard to tell sometimes.

I just know my baseline is exhausted, as if I've been run over by a steamroller and it's parked on top of me. I experience sleep deprivation and it's joys on top of that, as well as PEM if I overdo. But even when I pace well enough to avoid PEM, I am still tired.
 
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run over by a steamroller and it's parked on top of me
I've said run over by the football team- for years now. Thats my term for flu- like, run down, and often the air hunger is tied into it. Anvil on chest, breath, air starved.

A strange part of this is the ALERT state one can find oneself in, in the dark of the wee hours...and the total ZOMBIE state that seems to arrive upon "waking up".
 

wabi-sabi

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Not more than a normal person. I have highly deprived sleep so that makes me tired. Muscle fatigue is what can I resonate with.
This is just so weird to me. I so wonder what's going on inside all of us. Is it the same thing that we experience differently? Or will it turn out to be different things?

I will get muscle fatigability if I do anything. But usually I'm too tired to do anything.
 

Art Vandelay

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I believe that was intentional.
The reason why the word "fatigue" is problematic and is to be avoided is that it has no clear definition.

I have satisfied the ICC criteria for decades, but I don't have any "fatigue".
Spot on.

I am not fatigued or tired. In fact, I have been saying for over 20 years that I feel sick, not tired.

The specialist who first diagnosed me asked me to list my ten worst symptoms. After I had finished, he said "I noticed that you didn't say 'fatigue'". I responded that I felt horrendously ill rather than tired. If I was fatigued, I would be able to push though it.

This specialist said most of his patients didn't use the f-word (ie, 'fatigue') to describe their symptoms and made it clear that he thought the renaming of the illness as "CFS" was a huge mistake.

PEM for me feels like I've been poisoned. I don't feel tired or fatigued at all. Symptoms include: pain, malaise, sore lymph nodes, headache, severe nausea, dizziness, tinnitus, sweating but feeling cold, insomnia, sensitivity to light and sound, frequent urination, unquenchable thirst, fast heart rate, severe cognitive issues but feeling 'wired' at the same time etc.

It's like a hangover from hell.

What is worse is that almost all of the research into ME/CFS is focussing on possible causes of 'fatigue'. It's little wonder researchers aren't finding anything when they're studying an illness that only exists in the minds of those who came up with the 'CFS' moniker.
 
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researchers aren't finding anything when they're studying an illness that only exists in the minds of those who came up with the 'CFS' moniker.
That's the main argument for differentiating CFS and ME for the proponents of the ICC. I'm not sure if that is accurate. I don't think most researchers look into fatigue as tiredness but exhaustion after physical or mental exertion.

An illness can present in many ways. Usually, cancer patients are fatigued. But some are not. Now: are they don't have cancer?

The problem with all these definitions is that it's all crap. It's like psychiatry. Define an illness only due to the symptoms presented. That's a very inappropriate diagnostic approach for complex diseases.

So, we need a biomarker for PEM/PENE whatever you wanna call it.
 

Hip

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The reason why the word "fatigue" is problematic and is to be avoided is that it has no clear definition.
....
But this colloquial use of the word "fatigue" is inappropriate when talking about pathological muscle weakness or pathological cognitive dysfunction.
That's true, the definition of fatigue is not always clearly spelled out. And the difference between physical fatigue and mental fatigue is not alway made clear in the ME/CFS definitions.

Muscle weakness or rapid muscle fatiguability on minimal exertion (low muscle stamina) we could call physical fatigue, because you feel that fatigue in your muscles. That fatigue might only be present when you start exerting your muscles. A lot of ME/CFS diagnostic criteria refer to this low muscle stamina.

There is also the physical feeling of the heavy molasses limbs in ME/CFS, which is a whole body-type fatigue that is present even if you do not use your muscles.

And sometimes I find the whole body just feels tired and low on energy, and then if I going for a walk for example, my walking pace will be a lot slower, due to the lack of bodily energy. That would come under physical fatigue also.

This low muscle stamina form of fatigue is not something that a healthy person would really know about. Nor would they know about the molasses limbs feeling.


Mental fatigue however is something that healthy people can relate to. They would just call it fatigue or tiredness.

This everyday fatigue is even researched scientifically, for example in the airline industry, where it is known that pilot cognitive performance and speed of reactions goes down if the pilot has had a long day, and has become tired mentally.

Every healthy person is familiar with the mental fatigue that builds up towards the end of the day. When you are working on a complicated task all day long, at the end of the day you can feel your mind becomes tired and your performance drops. So that's when you call it a day, and hit the sack. When they wake up the next day, a healthy person is refreshed mentally, and all the tiredness from the night before it gone. So they take up the task again with renewed mental clarity and vigor.

The mental fatigue I experience in my ME/CFS is like this end of the day fatigue that healthy people get, only I tend to get it throughout the day, and it definitely becomes worse during PEM.

When I my ME/CFS was entering into severe territory many years back, my mental and physical fatigue were so severe that I could not even keep awake, and I would be sleeping 12 or more hours at night, and then sleeping on and off throughout the whole day, on the sofa. I'd spend the whole day just drifting in and out of sleep, like you might do if you have the flu.
 
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dannybex

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The ICC are a further evolution of the CCC, and in general do not differ much from the CCC.

But the weird thing about the ICC is that you can be diagnosed with ME/CFS even without having any fatigue. Fatigue is not an obligatory symptom in the ICC. I wonder if that is a flaw in these criteria.
Not sure where you're getting that @Hip.

The very first criteria (under PENE) is:

1. Marked, rapid physical and/or cognitive fatigability...

Webster's Dictionary defines Fatigability as: "Susceptibility to fatigue."
 

Hip

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The very first criteria (under PENE) is:

1. Marked, rapid physical and/or cognitive fatigability...
I would differentiate susceptibility to fatigue, and actual fatigue (the later being present even without exertion).

Susceptibility to fatigue means my muscles feel fine, but when I start to use my muscles by engaging in a physical task, then I notice I rapidly lose muscle strength, and so my muscles start to feel physically tired.

As opposed to feeling tired in the body and muscles even without doing any exertion. Some days I can wake up and my whole body feels weak and tired, even without doing anything, and without doing anything on the previous days (not PEM in other words).


You could make the same distinction for mental fatigue, I guess. You can just be tired mentally from the moment you get up, even without engaging in any mentally exerting tasks. So that's a mental fatigue present without exertion.

But it is also common in ME/CFS for people to experience rapid mental fatiguability, where they engage in a mental task, and find that task much more mentally exhausting than a healthy person would.


But anyway, the ICC talks about muscular and mental fatiguability (under the PENE section), but it does not mention fatigue.

Whereas the CCC mentions muscular and mental fatiguability (under the PEM section), but also refers to fatigue as well, in its own section:
The patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.
 

SWAlexander

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The ICC is the most narrow diagnostic criteria to differentiate ME from other fatiguing illnesses. I would like to get an overview how many here have ME in accordance to the ICC. You can find the criteria in the file attached.
Don't cheat :)

More information here:

https://me-pedia.org/wiki/International_Consensus_Criteria#References
Very good, thanks. Have most of them. One however sticks out:
"Loss of thermostatic stability - subnormal body temperature, marked diurnal fluctuations;"
Since childhood low temp (35.5 and seldom fever), but there is a genetic reason - "Tetrahydrobiopterin affects tyrosine" Gene: GCH-1.
 

Inara

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I went through the questionnaire, and I seem to fulfill the ICC (as I did in the past) - due to how the question is worded, I would have to choose "Yes" in the poll, but I remember there was an extra "exclusionary" remark in the complete ICC booklet that if symptoms can be explained by known diagnoses, ME cannot be diagnosed.

So I chose "No" in the poll, because I have other diagnoses that explain my symptoms, like MCAS (which explains GI symptoms, e.g.), POTS (which explains headache, fatigue and fatiguability, and PEM/PESE/PENE/whatever you prefer to a certain extent), Small Fiber Neuropathy and hypokalemic periodic paralysis (muscle weakness, PEM, fatigue and fatiguability); I also have CBG deficiency which might contribute to fatigue, fatiguability, "flu-like feeling" and muscle weakness, amongst others.

I barely have immune abnormalities today (practically went away with IGG), and although I didn't check any related points, the result was "ICC fulfilled". Also, I am very unsure re. PEM - there seem to be different qualities, and I am not certain the PEM I experience is the PEM pwME experience. Also, a 2-day-CPET was negative in my case, although Workwell explained that the calibration of the institute most probably was false. My PEM problems get better with avoiding attacks, with a PP med and keeping potassium in my optimal level.
However, I could check the PENE box.

All in all, I am a bit skeptical today that these criteria are suited to find ME patients correctly. But I couldn't possibly suggest better criteria.
 
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Inara

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And I met a lot of pwME online who also are not fatigued.
Really?! You guys don't feel either physically or mentally tired at all? Neither?
Maybe it's a bit like with MS where some patients have "fatigue" and others don't? If so, indeed, fatigue shouldn't be a defining symptom. (That makes sense from another perspective, too: There are many, many diseases where "fatigue" occurs. It seems to be a sign of disease, not of a specific disease. It seems the belief that ME is "fatigue" has led to it being a "wastebasket" where you put all those fatigue patients in for which you can't find a "better" diagnosis. Although...in Germany that's depression and psychosomatic diagnosis...)
 

SWAlexander

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I wonder how these questions were established and by whom.
Was it a gathering of clinical observation with blood test results as a foundation? and who objectively and what medical branches contribute?
Are were there any epigenetic markers considered?