Is it possible to have ME/CFS without having any form of PEM?

[Cinders66]

You can meet CFS criteria and have a chronic fatigue syndrome (assuming you have fatigue) but not ME or SEID.

RE. other illnesses getting PEM, I think they get some sort of after effects. Unfortunately the most similar groups aside from MS (where the light study showed huge difference on exertion) Lupus and sjogrens I havent seen studies on comparison which is probably something that needs to be done (especially when the UK MRC is happy to fund sjogrens studies as a CFS substitute with CFS money). My family members, however have these 2 illnesses and I don't think the PEM is as vicious, prolonged, necessarily delayed and I also don't think pushing themselves risks the long term harm deterioration either (I've not heard of bed bound lupus or sjogrens patoemts because they pushed on in the early stages?) which is another feature of the ME push and payback phenomena.

 

[Neunistiva]

I think the most common misconception is that PEM is fatigue after exercise.

PEM can be appearance or excerbation of any symptom: pain, sore throat, racing heart, flashing before eyes, difficulty with speech....

Also, it can be caused by any exertion, not just exercise: having a family lunch, being in a noisy environment, visiting a doctor, taking a shower....

I would be surprised if PEM were specific to ME/CFS. You do hear patients with Sjogren's syndrome describe similar crashing episodes after exertion

I looked a bit around and easily found forums where Sjorgen's syndrome patients talk how mild exercise makes them feel great.

 

[Sidereal]

I looked a bit around and easily found forums where Sjorgen's syndrome patients talk how mild exercise makes them feel great.

http://info.sjogrens.org/conquering-sjogrens/bid/342548/13-Types-of-Sjogren-s-Fatigue

Rebound fatigue
2. If I push myself too far and ignore the cues my body is sending me to stop and rest, my body will fight back. When I do more than I should, the result is an immobilizing fatigue. It comes on after the fact, i.e., do too much one day and feel it the next. If I push myself today, I very likely will have to cancel everything tomorrow. An extended period of doing more than I should will almost certainly cause a flare.

Sounds like PEM to me.

 

[worldbackwards]

I think the most common misconception is that PEM is fatigue after exercise.

PEM can be appearance or excerbation of any symptom: pain, sore throat, racing heart, flashing before eyes, difficulty with speech....

Also, it can be caused by any exertion, not just exercise: having a family lunch, being in a noisy environment, visiting a doctor, taking a shower....

'After' is often a loaded term when used here. You might feel fine for the rest of the day, or even the next, then have the lot come back the day after that.

It's often made to sound that you do something, then you feel tired/symptoms. That can happen, but it's often the big crashes that come after a fair period.

 

[Neunistiva]

Rebound fatigue
2. If I push myself too far and ignore the cues my body is sending me to stop and rest, my body will fight back. When I do more than I should, the result is an immobilizing fatigue. It comes on after the fact, i.e., do too much one day and feel it the next. If I push myself today, I very likely will have to cancel everything tomorrow. An extended period of doing more than I should will almost certainly cause a flare.

Sounds like PEM to me.

The reasons why I don't think this is PEM is that people with ME/CFS

• Don't have cues and don't know what's too far. We can crash even if we stopped before there were any cues, and our limit changes from hour to hour without us knowing. We can crash even if we didn't push ourselves (or at least didn't notice it).
• Don't just experience fatigue when we crash. We have other symptoms which are just as important.
• Don't crash for just the next day. It can be a week, or a month or years even. Some of us never go back.
• Don't just crash from doing things. We can crash from people talking loudly next to us. Or from catching a cold.

'After' is often a loaded term when used here. You might feel fine for the rest of the day, or even the next, then have the lot come back the day after that.

Whenever I saw definition of PEM they mentioned it can be delayed so I think that's covered.

 

[worldbackwards]

Whenever I saw definition of PEM they mentioned it can be delayed so I think that's covered.

True as it's defined, but I'm thinking more when it's used colloquially. People with an interest in doing so often have a more elastic idea of it.

 

[Cinders66]

http://info.sjogrens.org/conquering-sjogrens/bid/342548/13-Types-of-Sjogren-s-Fatigue



Sounds like PEM to me.

Clearly needs research because PEM is what we are saying is distinguishing factor and it's pretty shocking it's not been done ME vs sjogrens to assess similarity and difference in presentation and biology on exertion.

I would say that PEM in ME is global exacerbation, not fatigue exacerbation (IMV) and the risk is deterioration, not a flare only, as the interesting sjogrens page said.
I'm also very aware of being with people who complain of chronic fatigue e.g. A nurse who got it through epilepsy meds and my carer with FM who incessantly complains of fatigue yet is working full time in a physically demanding job and isn't having to monitor every exertion to prevent not just flare but deterioration, so ME being so disabling and multi symptom and PEM being global, triggered by minimal exertion , prolonged and possibly harmful might make it different.

 

[Sidereal]

The reasons why I don't think this is PEM is that people with ME/CFS

• Don't have cues and don't know what's too far. We can crash even if we stopped before there were any cues, and our limit changes from hour to hour without us knowing. We can crash even if we didn't push ourselves (or at least didn't notice it).
• Don't just experience fatigue when we crash. We have other symptoms which are just as important.
• Don't crash for just the next day. It can be a week, or a month or years even. Some of us never go back.
• Don't just crash from doing things. We can crash from people talking loudly next to us. Or from catching a cold.

I don't think it's helpful to extrapolate from the experience of severe patients to everyone. For what it's worth, none of these things apply to me currently whereas they all applied when I was severely ill.

 

[Sidereal]

Clearly needs research because PEM is what we are saying is distinguishing factor and it's pretty shocking it's not been done ME vs sjogrens to assess similarity and difference in presentation and biology on exertion.

I would say that PEM in ME is global exacerbation, not fatigue exacerbation (IMV) and the risk is deterioration, not a flare only, as the interesting sjogrens page said.

The article is about fatigue in particular, not about Sjogren's symptoms in general, so perhaps the writer focused on just the fatigue aspect of the flare, I don't know. Clearly though, as a group, we're much more disabled/incapacitated - on average - by the energy deficits than autoimmune patients.

 

[Neunistiva]

I don't think it's helpful to extrapolate from the experience of severe patients to everyone. For what it's worth, none of these things apply to me currently whereas they all applied when I was severely ill.

Wouldn't that be remission from a particular symptom, rather than change the whole definition of the illness?

 

[Molly98]

I watched Dr Bateman's lecture on " Simple but effective tools in managing ME/CFS" the other day.

There is a fantastic graph she produces to show measurable changes in ME patients after moderate exercise which are in effect showing the reality of PEM compared to controls and also to those with MS. It measures sensory, immune and adrenergic. Great visual tool for showing to doctors etc who may not believe or understand PEM.
it measures many factors of 48 hr period and ME patients have a very marked difference even after 48hrs later

from just after 12 minutes in.

 

[Cinders66]

It's lupus and sjogrens we need to be able to differentiate from - aside from their tests - on matters like PEM. Reading some accounts they can sound similar but then on their support websites the fatigue section is so perky about just Pacing and exercise I think in reality they must be different or on different scales? I don't get impression exertion harms in these illlesses, although it might flare. I certainly haven't been able to get any Dr to understand the long term consequences or risks of great exertion e.g. For me a journey and trips to hospital, seeing consultants etc. They think a) we can't be too weak to do that b) that the push payback effect is not going to be severe or even catastrophic (no I'm not catastrophising). Therefore maybe we can assume ME disability isn't believed because our PEM consequences isn't seen in other illness ?

However the medical profession seem to trivialise /psychologise fatigue generally, even in recognised illness, I have read sjogrens papers debating if their cause is physical or psychological and a bit disturbingly our supposed GET for CFS is being used as an example for THEM & their ability to exercise and cope with it is perhaps fuelling the "exercise is good for chronic illness" narrative so it's applied to CFS e.g. Here

http://www.lupus.org.uk/what-is-lupus/living-with-lupus/exercise

 

[Cinders66]

BTW the issue with the poll is the assumption ME/CFS are one and the same. PEM is required for all ME but not all CFS so you can have CFS but not ME, and I guess a fair section under the CFS/ME umbrella will fit that. Including CFS w/o PEM in exercise studies and then applying generally those findings to the ME population too, because of the ME/CFS compromise has been a huge problem in UK

 

[ukxmrv]

http://info.sjogrens.org/conquering-sjogrens/bid/342548/13-Types-of-Sjogren-s-Fatigue



Sounds like PEM to me.

Maybe not if it only lasts for one day? We could be reading too much into this without examination.

Dr Ramsay described his ME patient in having a worsening of symptoms after trivial exertion. The Sjogrens reaction there doesn't sound like a reaction to trivial exercise and there is no real description of what happens to them.

"Cancel everything tomorrow" makes it sound as if it is a one day blip on an otherwise busy normal life not a life changing symptom that is a permanent threat.

We would have to know more to tease out the differences but it could possibly be done.

 

[alex3619]

I would say that in both those cases the patient has PEM, as a feature, but in the second case they may be unaware of it.

I haven't voted because I think its linked to the definitions, and all the definitions will be rewritten or scrapped once we figure out what is wrong and have biomarkers.

However during the 90s I was in a state where I would get worse from grocery shopping (both cognitive and physical symptoms), then start recovering just before the next shop two weeks later. I currently think this is PEM covered by its ongoing nature. It overlaps, PEM episode merging into PEM episode. I suspect, and keep looking for some answers from research, that severe patients are constantly thrown into unending PEM, just surviving is enough to trigger it.

 

[Woolie]

I understood the question to be about what patients' feelings are, not what the formal definitions are (we know those). And that would be based largely on their own experience.

I think there are two questions here.

1. How much do we think PEM is central to the clinical definition of the disease(s) that underlie ME and/or CFS? That without that its simply not the same disease? To what extent should we withhold the diagnosis if it is not present?

2. How much importance should we place on it in research? Should it be a requirement for research definitions? Will the answer to what ME/CFS is be found by looking at postexertional biomarkers specifically?

For question 1, I think clinically, there's a danger in restricting in this way. If this were to happen, then my 26 year illness would have counted as ME/CFS only for the past 10 years, leaving me undiagnosed for the first 16 (with many of those early years spent bedbound). Thank god that didn't happen.

I am also not convinced that PEM is as good as people think at excluding psychological conditions, etc. Mainly because I think people overestimate how many psychological cases are misdiagnosed as ME/CFS, at least if the criteria exclude depression as a primary cause of the fatigue. (except those just due to poor practice, which probably will persist whatever criteria we set).

For question 2, I think PEM is a good way to go, happy to treat it as a focus of research and limit entry to those studies to those with PEM.

 

[Cinders66]

I understood the question to be about what patients' feelings are, not what the formal definitions are (we know those). And that would be based largely on their own experience.

I think there are two questions here.


For question 1, I think clinically, there's a danger in restricting in this way. If this were to happen, then my 26 year illness would have counted as ME/CFS only for the past 10 years, leaving me undiagnosed for the first 16 (with many of those early years spent bedbound). Thank god that didn't happen.

I am also not convinced that PEM is as good as people think at excluding psychological conditions, etc. Mainly because I think people overestimate how many psychological cases are misdiagnosed as ME/CFS, at least if the criteria exclude depression as a primary cause of the fatigue. (except those just due to poor practice, which probably will persist whatever criteria we set).

For question 2, I think PEM is a good way to go, happy to treat it as a focus of research and limit entry to those studies to those with PEM.

It wouldn't have left you undiagnosed as there's alternative labels , or should be in CFS or IF. I think there needed to be recognition that CFS/CFS & ME may have over laps and can develop in and out of the diagnosis..

America is eneterimg the impossible position uk has been in 20 years, if people think it's possible to have ME/CFS both mean the same, they were useful distinctions. CFS in U.K. Has allowed people without PEM to get a diagnosis, conflating that with ME has on our side of the pond just buried ME so it's lost its meaning.

In USA trying to pretend all Fukuoka CFS can now be called ME instead is like trying to insist all migraines are aura, we need labels to help separate and define.

Sorry for not being clear above but for me, the danger in lumping CFS in with or interchangeable with ME Is that people don't realise our PEM is so central to we who get it i.e. ME sufferers and think we have a CFS and can push on like many other illnesses with CF component can.

 

[Woolie]

Sorry for not being clear above but for me, the danger in lumping CFS in with or interchangeable with ME

I guess this is the ME vs. CFS issue, which is probably going beyond what @Skippa is seeking. But its kind of connected, so maybe worth talking about?

For research purposes, I can see the value of studying subsets of individuals with all the central hallmarks and then expanding from there. That subset could be those that fit the "classic ME" profile.

The heterogeneity issue is a valid one. We need ways of ensuring the cohorts we choose for research are as likely as possible to have a common underlying disease process.

But that's no more than a potential strategy for research, till we know more. The reality might turn out to cut right across that (so classic ME might have heterogeneous causes, each of which is shared by a subset of "other" CFS cases). I think evidence from other autoimmune conditions suggests that heterogeneity of expression is characteristic of many diseases - that is, same disease process, very different expression. We should keep that firmly in mind.

And for real life, clinical purposes, I'm personally not fond of creating any sort of special status for "classic ME" type cases and leaving everyone else to drown in a sea of psychobabble. We don't have good evidence that there is even a thing as psychologically-caused CFS (the evidence is pretty weak).

People who fit the "classic ME" profile (which includes me, btw) have pretty much all seen firsthand what psychobabble can do to a person. We've seen how wrong people can be in their attributions. Let's not buy our own escape ticket and leave everyone else to drown.

 

[Sidereal]

Maybe not if it only lasts for one day? We could be reading too much into this without examination.

Dr Ramsay described his ME patient in having a worsening of symptoms after trivial exertion. The Sjogrens reaction there doesn't sound like a reaction to trivial exercise and there is no real description of what happens to them.

"Cancel everything tomorrow" makes it sound as if it is a one day blip on an otherwise busy normal life not a life changing symptom that is a permanent threat.

We would have to know more to tease out the differences but it could possibly be done.

I'm a big fan of Ramsay and I think his description of ME is second to none but at the end of the day there are no biomarkers for ME so his diagnostic criteria reflect one man's opinion. In the case of other case definitions such as Oxford, Fukuda, CCC, ICC, IOM, again, it's just diagnosis by committee and there is no biological evidence that one set of ME/CFS criteria define one disease vs. another. To my mind, no one has presented any laboratory evidence so far that ME is a different illness from CFS or that any of these case definitions are better than others. Arguments from authority ('such and such said...') haven't gotten us very far in 30+ years. Even when it comes to the much-maligned Oxford criteria, we saw in the PACE trial that even using these extremely broad CF criteria virtually nobody recovered so there is actually the possibility that even Oxford criteria, as stupid and toxic as they are, select for mostly ME/CFS patients.

Based on my personal experience, having lived with this thing for 22 years, I mostly just tune out of arguments about 'real ME' and insinuations we often see from some patient groups that CFS somehow isn't ME or isn't even a real illness but is some sort of a government conspiracy to 'bury real ME', or is somehow psychiatric. I don't know of any psychiatric disorder where fatigue per se is the disabling symptom i.e. the chief complaint which disables the patient, unless you are talking about a tiny minority of severely ill hospitalised patients with extremely severe / catatonic depression or very advanced anorexia nervosa. These people are quite medically ill at that point, dying from malnutrition, and often require tube feeding so they're not taking part in Fukuda CFS studies and are therefore irrelevant as far as we're concerned. I therefore see absolutely no reason to attack the IOM criteria, as some here and elsewhere have done, because it doesn't exclude patients with psychiatric problems. It would be complete lunacy to say that you cannot have a diagnosis of MS or lupus if you also happen to be depressed. I don't see why ME should be any different since fatigue in depression is not disabling and does not elicit descriptions of PEM.

On a personal note, I didn't meet classic Ramsay ME criteria until about 4 years ago. The first 10 years were very much Fukuda CFS. I had PEM but there was a pretty high threshold for triggering it (I could do mild exercise without triggering PEM whereas strenuous exertion like hiking all day triggered a three-day PEM). Then a long period of remission in between. The odds of me developing two different illnesses that cause PEM at various points are astronomical. I think Ramsay ME may simply be a much more severe/disabling - sometimes progressive - form of CFS whereby, as you say, the patient has a worsening of symptoms after trivial exertion but I do not agree that all ME patients have PEM after trivial exertion. The mild patient who can still work but gets destroyed by a bike ride could very well have the same underlying disease process as the very severe patient who gets PEM from rolling over in bed - there is no way to know at present given the absence of disease markers.

 

[Skippa]

A rose by any other name...