Poll: Do you have Myalgic Encephalomyelitis (ICC)

[Martin aka paused||M.E.]

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?

I think that's a problem with all criteria.

 

[dannybex]

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:

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:

I think you're splittin' hairs @Hip.

The fatigue (which I agree is a problematic word) that comes after a day or days of not doing as much, could be from some subtle use of energy, or from not eating as much (resulting in a lack of "fuel" for bodily functions), etc.. But that's okay. We can agree to disagree.

 

[Hip]

The fatigue (which I agree is a problematic word) that comes after a day or days of not doing as much, could be from some subtle use of energy, or from not eating as much

If you've ever had severe-level fatigue, as I had some years back when my ME/CFS was worse, there is nothing subtle about it.

I was to so tired that I slept 12 and sometimes 14 hours a night, and even when I got up, I'd only manage to put in an hour or so of being semi-awake, before the sheer fatigue would cause me to take another sleep. I would drift into multiple siestas each the day. During the day I would be lying down on the sofa most of the time, maybe catching a bit of TV, but constantly drifting in and out of sleep. I did not have enough energy to remain awake.

During the say I just could not keep awake and consciously aware because of the crushing fatigue and weakness I felt in the whole body and the mind. I would say that in each 24 period, I'd sleep in total for 18 to 20 hours, because of the extreme fatigue.

If you have ever experienced fatigue like that, it's orders of magnitude more intense that the fatigue you might get from ordinary hunger.

Now that I am moderate to mild, those years of crushing fatigue are behind me (I hope), but I certainly remember them. And I still have fatigue, but not to that extreme level.

That fatigue was nothing to do with PEM. That was just my regular level each day.



But I am quite happy to accept that there are ME/CFS patients who do not have this fatigue symptom.

 

[Irat]

If you've ever had severe-level fatigue, as I had some years back when my ME/CFS was worse, there is nothing subtle about it.

I was to so tired that I slept 12 and sometimes 14 hours a night, and even when I got up, I'd only manage to put in an hour or so of being semi-awake, before the sheer fatigue would cause me to take another sleep. I would drift into multiple siestas each the day. During the day I would be lying down on the sofa most of the time, maybe catching a bit of TV, but constantly drifting in and out of sleep. I did not have enough energy to remain awake.

During the say I just could not keep awake and consciously aware because of the crushing fatigue and weakness I felt in the whole body and the mind. I would say that in each 24 period, I'd sleep in total for 18 to 20 hours, because of the extreme fatigue.

If you have ever experienced fatigue like that, it's orders of magnitude more intense that the fatigue you might get from ordinary hunger.

Now that I am moderate to mild, those years of crushing fatigue are behind me (I hope), but I certainly remember them. And I still have fatigue, but not to that extreme level.

That fatigue was nothing to do with PEM. That was just my regular level each day.



But I am quite happy to accept that there are ME/CFS patients who do not have this fatigue symptom.

I have this extreme fatigue too,where I sleep all day,and just can t stay awake,it's different than PEM .in my case I feel I have severe brain injury and my symptoms can flucturate very quickly ,and often between extreme restlessness in the morning for example,and not beeing able to move rest of the day.the sleep days,days of PEM after I tried doing at least some cleaning in my flat,or suddenly not being able anymore going up my stairs without sitting down20 times due to weakness but possible again next day.,extreme sweating or freezing cold, and the list goes on and on so I'm not 24 /7 the same,But PEM is always there just fluctuates on how severe it is.

 

[Hip]

It only names fatiguability as a sign of PENE.

Fatiguability is part of the post-exertional symptoms, in both the ICC and the CCC. The feeling of weakness you get in your muscles or mind after exertion one of the post-exertional symptoms, along with other post-exertional symptoms like malaise, increased brain fog, and an increase in many ME/CFS symptoms.

If you look back to the earliest ME/CFS diagnostic criteria, the Ramsay 1986, you see that muscle fatiguability was already identified back then, as was the fact that it could take days for the muscles to recover after exertion. This is really is an early concept of PEM, except that it was not named as such back then.

 

[dannybex]

If you've ever had severe-level fatigue, as I had some years back when my ME/CFS was worse, there is nothing subtle about it.

I was to so tired that I slept 12 and sometimes 14 hours a night, and even when I got up, I'd only manage to put in an hour or so of being semi-awake, before the sheer fatigue would cause me to take another sleep. I would drift into multiple siestas each the day. During the day I would be lying down on the sofa most of the time, maybe catching a bit of TV, but constantly drifting in and out of sleep. I did not have enough energy to remain awake.

Thanks Hip. Sorry to hear you went through that.

It would be very interesting to do a poll just on sleep and ME/CFS. As I'm sure you know, there's a substantial number of patients who have the exact opposite problem -- we need to sleep, but just cannot. The constant 'fight or flight'/sympathetic group. We're so wiped out/tired/beyond fatigued/etc that we don't have enough 'energy' to be able to sleep. (And yes, it does require energy to sleep.) I don't think I've slept more than 7 hours straight in at least 10 years. Now I'm lucky if I get 5 hours straight. And of course when we wake up, we still feel like we haven't slept in years...

This link from the ME Association says "ME/CFS patients tend to have reduced parasympathetic activity, and increased sympathetic activity, known as “sympathetic nervous system predominance” (Martinez et al. 2014)." Not sure if that means a majority of patients or not.

Anyway, it would be interesting to see a poll on this topic.

 

[ljimbo423]

But I am quite happy to accept that there are ME/CFS patients who do not have this fatigue symptom.

I agree. Although I thought for years fatigue had to be a part of ME/CFS. I have a lot of muscle pain, especially in my upper back and neck when I'm washing dishes. It's intense enough to make me take breaks after 10-20 minutes or so.

I also have flu-like symptoms and brain fog that flare-up from time to time, which also can be very debilitating. So I can see how someone can have ME/CFS, be severely disabled but not have much or any "fatigue".

Although my pain does cause fatigue to some degree, I think. My flu-like symptoms, also seem to me, to cause some level of fatigue too. The meaning of fatigue seems to be so vague, I'm not really sure I understand what it truly means.

I clearly have fatigue, often and sometimes fall asleep listening to a meditation recording. Where I loose this clarity is with brain fog, and flu-like symptoms etc. It seems like my brain fog and flu-like symptoms come with fatigue too. But this might not be true for everyone.

 

[Hip]

As I'm sure you know, there's a substantial number of patients who have the exact opposite problem -- we need to sleep, but just cannot.

Oddly, when I had severe fatigue, insomnia would sometimes also be a problem. I would go to sleep at night, and then wake up 3 or 4 hours later, and have "wired" insomnia for a couple of hours or so, and it would take I while to get back to sleep again. And sometimes is was not "wired", but just a feeling that you don't have enough sleep juice in your brain to get to sleep. The brain does not generate that nice sleepy feeling.

I put that insomnia possibly down to sleeping so much during the day. If you are sleeping that much during the day, you may not be tired enough to sleep at night.


Nowadays I get the "wired but tired" issue you mention when going to bed, where I am tired, but it takes me hours to get to sleep due to the wired state. I find taking 5 mg of melatonin about two hours before my intended bedtime really helps a lot. I find with this, I can be asleep in 15 minutes, rather than taking hours to get to sleep. Melatonin does not work for everyone though, and each person seems need their own optimal dose.

Thankfully I am now usually sleeping through the night, rather than getting these insomnia patches in the middle of the night, which are quite horrible. I really have sympathies for ME/CFS patients who cannot sleep well, as insomnia is one of many unpleasant symptoms of ME/CFS.

One thing that's still screwed up with my sleep though is the circadian rhythm de-sync. I invariably go to bed at around 5 or 6 am these days, and sleep until around 2 pm. I find it hard not to slip into this de-synchronized circadian rhythm.

 

[Irat]

Oddly, when I had severe fatigue, insomnia would sometimes also be a problem. I would go to sleep at night, and then wake up 3 or 4 hours later, and have "wired" insomnia for a couple of hours or so, and it would take I while to get back to sleep again. And sometimes is was not "wired", but just a feeling that you don't have enough sleep juice in your brain to get to sleep. The brain does not generate that nice sleepy feeling.

I put that insomnia possibly down to sleeping so much during the day. If you are sleeping that much during the day, you may not be tired enough to sleep at night.


Nowadays I get the "wired but tired" issue you mention when going to bed, where I am tired, but it takes me hours to get to sleep due to the wired state. I find taking 5 mg of melatonin about two hours before my intended bedtime really helps a lot. I find with this, I can be asleep in 15 minutes, rather than taking hours to get to sleep. Melatonin does not work for everyone though, and each person seems need their own optimal dose.

Thankfully I am now usually sleeping through the night, rather than getting these insomnia patches in the middle of the night, which are quite horrible. I really have sympathies for ME/CFS patients who cannot sleep well, as insomnia is one of many unpleasant symptoms of ME/CFS.

One thing that's still screwed up with my sleep though is the circadian rhythm de-sync. I invariably go to bed at around 5 or 6 am these days, and sleep until around 2 pm. I find it hard not to slip into this de-synchronized circadian rhythm.

Do you get enough morning sunshine in your eyes ?And blocking blue light in the evening with glasses ?I also use blinds on my window that it's completely dark.

That helped me immensely with sleep

 

[Hip]

Do you get enough morning sunshine in your eyes ?And blocking blue light in the evening with glasses ?I also use blinds on my window that it's completely dark.

I tried a blue light blocker on my computer (I tend to be working on my computer all day long), but I found no benefit. I also tried bright lights (SAD lamp) first thing in the morning, but it did not help.

 

[Irat]

I tried a blue light blocker on my computer (I tend to be working on my computer all day long), but I found no benefit. I also tried bright lights (SAD lamp) first thing in the morning, but it did not help.

hmm not sure if a lamp is the same as sun ? Not the same spectrum,but well if you can sleep with melatonin,better than not sleeping

 

[Hip]

hmm not sure if a lamp is the same as sun ? Is it ?

Seasonal affective disorder (SAD) lamps are effective for treating SAD, if you get a lamp which provides sufficient lux. I have a lux meter, and the light level from my SAD lamp is higher than you would get from natural daylight in the cold dark British winter.

Circadian rhythm disruptions are a well-known symptom of ME/CFS, and there is no easy solution, unfortunately. It is a subject that has been talked about on these forums quite a bit.

But we are talking this thread off topic.

 

[Inara]

Every healthy person is familiar with the mental fatigue that builds up towards the end of the day.

That kind of fatigue you describe is nothing compared to the exhaustion I feel today. Not near to it. I could be active like crazy but never felt that exhausted. After a working day I could do my training (2h), and afterwards I could go partying if I wanted. I could go on 7h hikes, feel fatigued afterwards, and go on another 7h hike the next day, and the next day...
Therefore, I do not agree that the fatigue/exhaustion I feel today is sth. healthy people can relate to, because I don't think a "healthy" fatigue is or feels the same like a "fatigue in disease".

 

[Inara]

Fatiguability is part of the post-exertional symptoms, in both the ICC and the CCC.

Do I understand correctly that this means that fatiguability is only present during PEM? And if it is present outside of PEM...? I.e. always?

 

[wabi-sabi]

It's so interesting to hear these different takes on our symptoms. While I struggle to understand ME/CFS without fatigue, since my fatigue is so crushing, I wonder if it depends on whether we are more on the neuro end or the immune end of neuroimmune exhaustion.

On some scary crashes I have been so fatigued I couldn't eat an entire pot of yogurt without stopping to rest partway through. It's entirely different from the fatigue I got as a healthy person.

 

[wabi-sabi]

Do I understand correctly that this means that fatiguability is only present during PEM? And if it is present outside of PEM...? I.e. always?

I understand fatigue as I am wiped out as a baseline state.

But fatiguability means that if I bend down to take too many pots out of the cupbord at once-cooking something complicated when I am having a good day- my muscles will start to shake and get weak as though i have spent hours at the gym when i have bent over three times. And we all know, that's not due to deconditioning.

They are quite distinct symptoms.

 

[wabi-sabi]

And if it is present outside of PEM...? I.e. always?

When I have PEM I am too ill to experience muscle fatigability- my baseline fatigue is too severe to alow me to trigger muscle problems.

I mainly experience fatigability when I am having a good day (less baseline fatigue) and do some small activity. Then my muscles get abnormally tired with trivial activity.

 

[ljimbo423]

On some scary crashes I have been so fatigued I couldn't eat an entire pot of yogurt without stopping to rest partway through. It's entirely different from the fatigue I got as a healthy person.

I agree that the fatigue I get is completely different from the fatigue I had when I was healthy. Unless I compare it to the fatigue I had when I had a severe flu, when I was healthy. Then it makes more sense.

This is a big part of why I think ME/CFS researcher Jarred Youngers' hypothesis about the sickness response being activated in the brain, and causing symptoms in ME/CFS is true.

It's the sickness response that makes someone unable to get out of bed, eat or even walk, when they have a severe flu. The fatigue I have is very much or exactly like what I got when I was healthy, with a severe flu.

I was severe for several years and could barely get out of bed often. I almost always felt like I had a bad flu.

 

[wabi-sabi]

This is a big part of why I think ME/CFS researcher Jarred Youngers' hypothesis about the sickness response being activated in the brain, and causing symptoms in ME/CFS.

This is such an interesting idea, and why I think it is good to describe symptoms precisely and to match them with the underlying pathophysiology in the body.

To my mind, muscle fatigability on top of the baseline sickness fatigue speaks of mitochondrial and skeletal muscle dysfunction on top of brain dysfunction.

Multisystem disease, right?

 

[ljimbo423]

To my mind, muscle fatigability on top of the baseline sickness fatigue speaks of mitochondrial and skeletal muscle dysfunction on top of brain dysfunction.

It's possible that it's both.

However, muscles becoming easily fatigued and baseline sickness fatigue, happen with the flu also. The sickness response don't explain the immune activation in the body though. Which I think causes the mito.issues and triggers the sickness response.