The Concept of ME/CFS

[Kitty]

There are days when Angus has to move and he may not look or feel his best but something kicks off inside him and he HAS to move, striding up and down the house mostly. Now why is that!

It seems to be similar to, but not necessarily the same as, restless legs syndrome. People with RLS seem to say it happens most often at night, in bed, and even small movements relieve it.

The ME/CFS itch doesn't quite have that pattern. It's not always at night or when lying down, and while the drive to move is equally hard to resist, it seems to demand strenuous effort.

I've only experienced it when quite unwell, or during transition periods when my capacity is getting better or worse. I haven't seen it described very often by other pwME/CFS.

 

[Haveyoutriedyoga]

It seems to be similar to, but not necessarily the same as, restless legs syndrome. People with RLS seem to say it happens most often at night, in bed, and even small movements relieve it.

The ME/CFS itch doesn't quite have that pattern. It's not always at night or when lying down, and while the drive to move is equally hard to resist, it seems to demand strenuous effort.

I've only experienced it when quite unwell, or during transition periods when my capacity is getting better or worse. I haven't seen it described very often by other pwME/CFS.

As someone with RLS and who has experienced the urge to move as described above, I can say that the two feel quite different. RLS causes an immediate demand in the form of pain or very unpleasant and very weird sensations, the demand is for immediate and usually brief movement, which usually makes the demand go away at least momentarily, but there are no good feelings to be had - just relief from the very bad sensations. It is all but impossible to ignore, when asked what they do in response to the unpleasant sensation people usually say “the only thing I can do is immediately move”. That feels different from the positive urge to move as described above.

 

[rvallee]

rvallee can i copy that & use it? its such a good explanation of what it's like when i'm at my absolute worst.

Of course!

 

[Louie41]

You know there is something very wrong.

I'm coming unfortunately late to this discussion, but I remember well the distinct feeling, after recovering from a flu, that there was something definitely wrong and that it was systemic. I kept telling my doctor that there was something systemically wrong with me. I felt as if the life force had left my body; I felt dead. I could barely lift an arm. I feel that still today. The major problem is that we do not have words adequate to capture the sense of whatever we feel when we are reduced to using "fatigue" as the descriptor. I think of the Inuit people, who have in excess of 25 words for snow. If only we had an adequate vocabulary to describe our condition!

I'm not sure that I have PEM. I'm not convinced that it's the cardinal sign of this illness. If this were true, I don't think its proponents would have so much difficulty or effort in explaining what it is. Is there perhaps a level of severity that means that all symptoms are always active? Do people that severe get PEM? How do they know? What is the difference between a symptom of ME/CFS and as a result of PEM? Is there any difference?

 

[Jonathan Edwards]

What is the difference between a symptom of ME/CFS and as a result of PEM? Is there any difference?

My understanding is that PEM is by definition a worsening of the same symptoms. So there would be no difference in the symptoms.

I have come to understand PEM as identifying a time course rather than anything else. It is supposed to cover worsening after exertion but what I hear is that worsening is not always predictable - indeed it may be quite unclear what it relates to. The significance of PEM for me is that it indicates that whatever is generating the symptoms is not a simple metabolic response to energy use, as it would be in severe heart failure, nor a direct stirring up of inflammation as it might be for a worn hip.

Do your symptoms vary over periods of days or weeks @Louie41 ? Does your illness play Snakes and Ladders? If not at all then maybe there is something different in your case?

 

[Haveyoutriedyoga]

What is predictable is that I cannot do more than the amount I have learned to do, or go through a form of stress, without getting PEM. I can (less often) get PEM without having knowingly done more or been through a form of stress.

 

[Nightsong]

My understanding is that PEM is by definition a worsening of the same symptoms. So there would be no difference in the symptoms.

This is the NICE & IOM definition but I have never liked it because while my usual symptoms worsen considerably, for me there are symptoms that emerge in PEM that are unique to the state.

I'd be interested to know if there are others for whom otherwise novel symptoms appear.

 

[Haveyoutriedyoga]

What is predictable is that I cannot do more than the amount I have learned to do, or go through a form of stress, without getting PEM. I can (less often) get PEM without having knowingly done more or been through a form of stress.

And the PEM is worse and lasts longer if preceded with more doing or stress. And the more often I get PEM, the more easily it seems to be triggered.

Devils advocate might say that my first statement could be explained by the fact that I push myself more often than not, if that is indeed the case, it is hard to measure.

 

[Andy]

This is the NICE & IOM definition but I have never liked it because while my usual symptoms worsen considerably, for me there are symptoms that emerge in PEM that are unique to the state.

I'd be interested to know if there are others for whom otherwise novel symptoms appear.

Yes, same happens for me that while in PEM both my normal symptoms increase in intensity and I develop new ones.

 

[hotblack]

Yes, same happens for me that while in PEM both my normal symptoms increase in intensity and I develop new ones.

Me too. More things just start to go wrong misfire.

 

[Jonathan Edwards]

This is the NICE & IOM definition but I have never liked it because while my usual symptoms worsen considerably, for me there are symptoms that emerge in PEM that are unique to the state.

I can well imagine that new symptoms occur with PEM on the basis that when we are ill there tend to be thresholds at which new phenomena occur. If I am feverish I nearly always get shivers at times but only if the fever is severe do I get delirium at night. If I have my unexplained conjunctivitis I get irritation and discharge but only when it is severe do I get corneal oedema and haloes.

I have not yet heard of anyone suggest that there are symptoms that are unique to PEM across the board, which seems to be Louie41's concern.

 

[Kitty]

My understanding is that PEM is by definition a worsening of the same symptoms. So there would be no difference in the symptoms.

I wouldn't describe it that way, as there are additional symptoms.

They're still on the list of symptoms commonly associated with ME/CFS, of course, but some of them are only present in PEM.

In my case it's things like sore throat, swollen glands and runny nose, insomnia and sleep pattern reversal, and some types of dyspraxia and cognitive deficits.

Severely affected people might have such a low PEM threshold that they see less of a difference, of course, but some of those with mild and moderate ME/CFS seem to have two sets of symptoms.

 

[Mij]

I can't say that I experience different symptoms during delayed PEM overall. My symptoms become more amplified so I notice them more. I feel dehydrated so that would be a different symptom if you can call that a symptom.

Shakiness/trembling is one I guess.

 

[NelliePledge]

Yes, same happens for me that while in PEM both my normal symptoms increase in intensity and I develop new ones.

Yes.

 

[Louie41]

I have not yet heard of anyone suggest that there are symptoms that are unique to PEM across the board, which seems to be Louie41's concern.

That's not quite what I'm driving at. My own situation is that, when I have reviewed the various efforts to characterize severity that have appeared on the forum, I usually rank as severe or very severe, though not bedridden. I have had no relief of the feeling of "lack of life force" for 35 years. I'm lucky if I'm able to walk across the room. I'm raising the possibility that I (and others?) may be constantly in PEM, though I'm not advocating that point. But if that were true, how do we know what is PEM on the one hand and on the other what is "exhaustion" or "fatigue" or what I first felt as "lack of life force?"

 

[Ash]

Yes.

Yes

 

[AliceLily]

I'm not sure that I have PEM. I'm not convinced that it's the cardinal sign of this illness. If this were true, I don't think its proponents would have so much difficulty or effort in explaining what it is. Is there perhaps a level of severity that means that all symptoms are always active? Do people that severe get PEM? How do they know? What is the difference between a symptom of ME/CFS and as a result of PEM? Is there any difference?

@Louie41 For me ME is PEM. It is what keeps us locked in to this illness. A repetitive cycle. The differences are in ME levels and type of PEM experienced.

The severer the ME level the worse the PEM will be.

Then there are the PEM types:
1. Rolling PEM, experienced to the degree of the ME level. Note, there must always be PEM present in the background for ME to continue even at milder levels which can be very subtle.

2. Delayed PEM, felt greatly in the severer levels and there are new symptoms added which can be even more scary, even more acute secondary problems like in my case possible sepsis like exposure.

3. Accumulation PEM, where you have overdone for too long over a period of time and this PEM will speed you toward a severer ME level.

I could be wrong about all this but it is how I have experienced the ME.

 

[AliceLily]

That's not quite what I'm driving at. My own situation is that, when I have reviewed the various efforts to characterize severity that have appeared on the forum, I usually rank as severe or very severe, though not bedridden. I have had no relief of the feeling of "lack of life force" for 35 years. I'm lucky if I'm able to walk across the room. I'm raising the possibility that I (and others?) may be constantly in PEM, though I'm not advocating that point. But if that were true, how do we know what is PEM on the one hand and on the other what is "exhaustion" or "fatigue" or what I first felt as "lack of life force?"

@Louie41 This reminds me of my early years of ME when I didn't know I had ME. When I knew something was very wrong.

It is possible that you are managing to keep at this particular level all these years. Are you resting lots each day? It wasn't until I reached very severe ME that PEM was without a doubt shouting it's existence to me over and over. It's impact is forever imprinted.

I hope this helps you to see where your may be with the ME. You just reminded me of my earlier years.

 

[JemPD]

What is predictable is that I cannot do more than the amount I have learned to do, or go through a form of stress, without getting PEM. I can (less often) get PEM without having knowingly done more or been through a form of stress.

yes exactly this for me too

I have never liked it because while my usual symptoms worsen considerably, for me there are symptoms that emerge in PEM that are unique to the state.

Yes, same happens for me that while in PEM both my normal symptoms increase in intensity and I develop new ones.

They're still on the list of symptoms commonly associated with ME/CFS, of course, but some of them are only present in PEM.

Yes for me too. PEM = worseinging of original symptoms plus new ones that are only there in PEM

In my case it's things like sore throat, swollen glands and runny nose, insomnia and sleep pattern reversal, and some types of dyspraxia and cognitive deficits.

yes exactly

 

[Trish]

My PEM was much more clearly defined as crashes necessitating 1 to 2 weeks off work when my ME was relatively mild and I was still working. I could usually look back at the day(s) preceding them and see I had pushed myself to more activity taking me over my limit. The trigger- delay - PEM pattern was clear.

Now my ME is more severe and I'm not working I can usually pace myself better so crashes are less frequent.

Crashing suddenly from mild symptoms to severe symptoms and loss of function had a bigger impact on my daily life when working, than crashing from fairly severe to severe now I'm housebound. The crash was equally bad but the contrast with not crashed is less now.

Edit: my PEM includes both worsened existing symptoms that are there all the time, plus additional symptoms.