Where can I find the factsheet btw?
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PEM-like descriptions and accounts in non-ME illnesses
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Chandelier
Established Member
It’s under Resources->Factsheets: https://www.s4me.info/forums/fact-sheets.247/
Having read the PEM Factsheet, I have a question. If I go back to the very early 90's I had several months where I could ride a pushbike ca 4 miles on flattish roads, and then from the next day and without immediate post exertional collapse, be unable to ride again for 4 days and be hit by a far greater degree of fatigue than ususal. All the other symptoms, which I experienced from the late 80's immediately/soon after exercise - muscle pain, formication, fasciculation, myoclonus were unaltered and I had ongoing/regular severe fatigue and fatiguability (sleeping on hard floor in the middle of a working day, 3 months full time work , 3 month shattered and over time others coming and going.- POTS, bodily stiffness, hours of exhaustion after a hot bath, sleep disturbance etc. Enough for CCC certainly. This memorable post bike phenomenon lasted several months and after a break from any cycling and a lot of bed-rest I reverted to neuromuscular phenomena of formication etc and short term lower limb exhaustion.
The biking phenomenon was fairly short lived and imo sounds like PEM - never was a fluey type so my baseline was all about fatigue.
So, should I believe it was all ME , none of it was ME or should I believe that during the period of delayed and lengthy post bike phenomena this PEM was ME and the rest of the symptoms were also ME or that post bike PEM was in itself ME while the other symptoms were not? The final proposition seems consistent with decoupling of delayed PEM from exertion intolerance but it is counterintuitive and contrary to the general approach of achieving unitary diagnosis and suggests that PEM is ME rather than a feature the condition. Maybe I had ME that was marked for a period by a recognisable PEM or maybe I had a CFS which morphed into ME for a period???? Maybe the best term for me is CFS/ME. (Any resort to CFS must be decoupled from association with CBT/GET deconditioning and not subjected to scorn from "true ME" sufferers).
If the post bike phenomenon was in fact sarcoid, or Lyme or a mix, that invites the recognition that delayed worsening post exertion does occur in other conditions (and that some with ME may be displaying this and arguably do not have ME, if we identify ME as a strictly defines PEM). Could an idealised PEM be analagous to certain lab tests - highly specific but not very sensitive? Honest redefinitions may be needed and the avoidance of definition by assertion and circular reasoning is important because ME is at least a diagnosis with some acceptance whereas "idiopathic fatigue" will readily morph into "just fatigue" (I told you ME did not exist etc) rather easily. We have no test for PEM where normal results exclude ME except by prior assertion that this is so, no knowledge of the course of e.g. 2 day CPET over illnesss duration etc,
I assume it is evident from my account that lack of or fear of exercise was not my problem. My diagnosis was non medicalising BS - "giving up too easily, easily frustrated and wanting rewards for no effort". This stood until 1998, when both fibro and ME were diagnosed. Possibility of Lyme and/or sarcoid from an early period became apparent due to more recent developments/findings. A non ME diagnosis with credible, if unprovable, differentials available may be a neat solution in my case but there may still be a host of sick people with "PEM senso lato", maybe even on the way to "PEM senso strictu" who have a fair claim to ME, if there is no other diagnosis in their cases.
The biking phenomenon was fairly short lived and imo sounds like PEM - never was a fluey type so my baseline was all about fatigue.
So, should I believe it was all ME , none of it was ME or should I believe that during the period of delayed and lengthy post bike phenomena this PEM was ME and the rest of the symptoms were also ME or that post bike PEM was in itself ME while the other symptoms were not? The final proposition seems consistent with decoupling of delayed PEM from exertion intolerance but it is counterintuitive and contrary to the general approach of achieving unitary diagnosis and suggests that PEM is ME rather than a feature the condition. Maybe I had ME that was marked for a period by a recognisable PEM or maybe I had a CFS which morphed into ME for a period???? Maybe the best term for me is CFS/ME. (Any resort to CFS must be decoupled from association with CBT/GET deconditioning and not subjected to scorn from "true ME" sufferers).
If the post bike phenomenon was in fact sarcoid, or Lyme or a mix, that invites the recognition that delayed worsening post exertion does occur in other conditions (and that some with ME may be displaying this and arguably do not have ME, if we identify ME as a strictly defines PEM). Could an idealised PEM be analagous to certain lab tests - highly specific but not very sensitive? Honest redefinitions may be needed and the avoidance of definition by assertion and circular reasoning is important because ME is at least a diagnosis with some acceptance whereas "idiopathic fatigue" will readily morph into "just fatigue" (I told you ME did not exist etc) rather easily. We have no test for PEM where normal results exclude ME except by prior assertion that this is so, no knowledge of the course of e.g. 2 day CPET over illnesss duration etc,
I assume it is evident from my account that lack of or fear of exercise was not my problem. My diagnosis was non medicalising BS - "giving up too easily, easily frustrated and wanting rewards for no effort". This stood until 1998, when both fibro and ME were diagnosed. Possibility of Lyme and/or sarcoid from an early period became apparent due to more recent developments/findings. A non ME diagnosis with credible, if unprovable, differentials available may be a neat solution in my case but there may still be a host of sick people with "PEM senso lato", maybe even on the way to "PEM senso strictu" who have a fair claim to ME, if there is no other diagnosis in their cases.
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Yes to both. CCC requires PEM and PEM is defined as "worsening of symptoms 12-48 hours after exertion".
What looks like a black swan may not be a swan at all in this case. It may be black, but it could be a goose in reality. You don't know that because we don't know what the underlying biology looks like in case of ME/CFS. If we did, we wouldn't need the symptomatic definition at the first place.
Utsikt
Senior Member (Voting Rights)
PEM is defined as a pattern of prolonged and often delayed worsening of symptoms/illness following exertion, that is out of proportion to the exertion that was previously tolerated.
If someone has a symptom pattern like that, don’t they have PEM? Does it matter if it’s really a swan, goose, duck or ostrich, as long as it fits the description?
But it is not defined here as demanding a 12hrs delay.
https://me-pedia.org/wiki/Canadian_Consensus_Criteria nor here
Canadian Consensus Criteria (CCC) and Revised CCC for ME/CFS
www.meresearch.org.uk
Was 12 hr plus delay a general presumption at the time when CCC was conceived as to make definition in the terms of 12hr+ superfluous ? I am doubtful. Maybe I am wrong. I do suspect that you are importing a 12 hr + definition which does not arise from the criteria themselves in order to achieve a unitary cohort declared to be ME , while those who fit CCC but have post exertional worsening that say occurs on 6hr are deemed "not ME". I consider this to be akin to a very specific but rather insensitive test which will in expel otherwise ME consistent patients. These who may well share a great deal of ME biology and may show 12hr + PEM at another point in their illness courses. People fluctuate - "last week I had ME but now its idiopathic fatigue as my PEM starts after 11hr this week. Seems absurd. I accept you might allow some averaging.
Perhaps your strict 12ht plus definition may identify a very important cohort , unitary on this measure with characteristic underlying biology and only few exceptions. Even that. however does not exclude the possibility of patients who are ME positive as to the Edinburgh blood test or who might respond on a e.g. a rapamycin trial. I think panels of tests would be more appropriate but it is possible and would be very significant if only 12 hr plus PEM showed positive on the E bloods and/or responded to e.g. rapamycin, so dividing up PEM by time of onset may well be worthwhile - without denying the term to more rapid starters nor denying them an ME diagnosis.
I see that as fair and reasonable at our current level of knowledge.
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Mij
Senior Member (Voting Rights)
My experience over the decades is that if there is an immune event (lack of a better term), my delayed PEM onset will start before my usual 12hr delay. It varies. I'm not sure that timing give or take a few hrs makes a difference in determining delayed PEM.
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Jesse
Established Member (Voting Rights)
Do you have a source for the minimum 12 hours delay? I've taken a look at the CCC and IOM 2015 diagnostic criteria, as well as the CDC and NICE guidelines and it's not defined as such anywhere that I've seen.
Maybe you're confused because sometimes PEM is characterised as symptoms "typically" getting worse in 12 to 48 hours, but that is hardly a strict definition. Just like recovery is typically expressed as taking 24+ hours.
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Kiristar
Senior Member (Voting Rights)
I find I have a cumulative exertion ceiling that, if I surpass it I get intense, almost immediate classic (for me) PEM. That doesn't alter my diagnosis.
When I was mild this was after an intense period of work and I mistakenly thought it a bug or tonsillitis. When moderate this was after a extra long dogwalk and I felt fluey. Now it's after showering or leaving the house at all and I go faint and cold but no tonsillitis. I find it strange how my actual pem symptoms have evolved as my condition worsened.
I have classic ME/CFS diagnosed by my specialist ME service and meeting all criteria.
When I was mild this was after an intense period of work and I mistakenly thought it a bug or tonsillitis. When moderate this was after a extra long dogwalk and I felt fluey. Now it's after showering or leaving the house at all and I go faint and cold but no tonsillitis. I find it strange how my actual pem symptoms have evolved as my condition worsened.
I have classic ME/CFS diagnosed by my specialist ME service and meeting all criteria.
Maybe this "typically delayed" is the crux of the problem. It may not be much of an issue within ME/CFS context, but you won't be able to distinguish rapid fatiguability of COPD, for example, from the ME/CFS ("real") PEM if you leave out the delay. Same issue applies to DePaul PEM Questionnaire. Apply it to cancer fatigue, you can end up with PEM even without the delay. That's not to say that cancer fatigue cannot have PEM. But you don't know if it is same as the ME/CFS PEM unless it involves typical 12-48 hour delay.
"Typically delayed 12-48 hours" or "often delayed 24-72 hours" may be fine for ME/CFS PEM definition. Even if you get "immediate" PEM occasionally, I'd think that they are often delayed indeed. But it needs to be qualified further if you want to apply it to other conditions to exclude exhaustion from things like energy production problem. The worsening that is always not delayed needs to be excluded in particular.
Utsikt
Senior Member (Voting Rights)
If all you get is rapid onset physical fatigue from physical exertion, it is not PEM, with or without the delay. PEM is much more than fatigue.
How could the fatigue be both rapid onset and delayed?
Mea Culpa. I left out "typically" or "often".But it is not defined here as demanding a 12hrs delay.
https://me-pedia.org/wiki/Canadian_Consensus_Criteria nor here
Canadian Consensus Criteria (CCC) and Revised CCC for ME/CFS
Actually, no. I'm talking more about PEM definition applied to other condition rather than ME/CFS. Not requiring the delay will end up including energy deficit and others. And I'm not sure if requiring prolonged recovery time can differentiate ME/CFS PEM from PEM look-alikes of other conditions, including aging.
Stricter definition is necessary IMO if you are trying to investigate "PEMs" of other conditions are indeed worthy of looking into for ME/CFS PEM investigation.
Utsikt
Senior Member (Voting Rights)
I think I meant «delayed fatigue» and not «delayed rapid onset fatigue», but I’ve already forgotten.
I think my point was that if you mostly just get fatigue, it doesn’t fit the pattern that is PEM.
Except that it does not fit the description of "often delayed" if it is not delayed.
For diagnostic purpose, "often delayed" (mostly white) may be fine. For research purpose however, I do think it should be "must delayed" (white) rather than "may or may not be delayed" (white or black). You catch black ones and dissect it to see what swan really is, you could end up a wrong picture of swan.
If someone exercises and consistently 24 hours later they suddenly get a lot more fatigued, what is it if not PEM? Is there an established condition that this fits with? If not, what's the purpose of excluding those people and leaving them with no diagnosis? PEM is just describing a pattern that isn't explained by anything else, and any specific definition will be somewhat arbitrary. I don't see the need to leave people with only delayed fatigue out of the label.
For research to keep it more homogenous? Research already uses criteria more strict than diagnostic criteria.
Utsikt
Senior Member (Voting Rights)
We have no way of knowing what caused PEM, so we have no way of knowing if it’s actually delayed, but the patterns we can observe, make it appear like PEM is often delayed.
But what happens if you do a lot on day one, rest on day two, do a lot on day three and end up with lots of symptoms the evening of day three?
Is it PEM them because it’s delayed from day one? Or is it not PEM because it isn’t delayed from day three? Or do you have to get another bump in symptoms on day five that comes from day three in order for it to be PEM?
And I’m not sure what you mean by «for research purposes», can you clarify? Is it the inclusion criteria, what to defined as PEM when trying to provoke it, what to defined as PEM in terms of adverse events?
If it’s the first, how would you be able to find people that can guarantee that they have never had what appears to them to be instant PEM?
I think something that might make sense would be to exclude people that do not have «often delayed» PEM from research, i.e. that appears to have «mostly instant PEM» or «mostly instant symptom worsening». At least until we figure out the ones with delay.
Utsikt
Senior Member (Voting Rights)
I don’t know what it is.
PEM is not defined as «delayed worsening of any symptoms not explained by anything else», though?
What if you only get a delayed headache? Or only delayed light sensitivity? Is that PEM? What about other symptoms like vomiting? Seizure?
If only delayed fatigue is included, where do you draw the line wrt other symptoms?
Is your PEM always immediate? Just curious...