Where can I find the factsheet btw?
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PEM-like descriptions and accounts in non-ME illnesses
- Thread starter Yann04
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Chandelier
New 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
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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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