I relate to this post because I think that the term PEM is much like CFS in that it is interpreted by some to mean just the normal tiredness that a person feels after doing something strenuous. But PEM is something that is so hard to explain to others. This article gives a lot of actual measurable examples of what happens to us.
The CPET test is baffling to me. I'm high moderate, borderline severe and have been severe 3 of the past 11 years. I couldn't even get on a bike, never mind thrash out a meaningful result. TWICE!! Since PEM is horrendous, potentially lasts months or longer, and is known to deteriorate....why would anyone try to put a PWME through this? Thank you
This is exactly the reason I think the recovery study by Hanson is valuable. It was important to quantify the recovery time of patients versus healthy sedentary controls.
I’m solidly moderate, but have seen glimpses of severe. I would never willingly do the test for fear of permanent worsening.
It has clearly been a very valuable test and tool for documenting abnormalities, but I hope we are able to access an equally illuminating test in the future.
You have provided a lot of useful information here. I agree that post exertional neuroimmune exhaustion is a more accurate description when it comes to myalgic encephalomyelitis.
One thing might be good to add is that although P.E.N.E. is specific to ME, PEM is no longer considered specific to ME/CFS. While it may be required for an ME/CFS diagnosis, we are now seeing other conditions have PEM. Gulf War Illness is one example.
Here is a paper discussing that some Chronic Cancer Fatigue patients have PEM.
" While only a minority (up to 29% in this sample) may experience PEM, exercise specialists and health care professionals working with people with chronic CRF must be aware that PEM may be an issue. Symptom exacerbation after exercise should be monitored, and exercise should be tailored and adapted to limit the potential for harm."
I did the two day CPET at the Workwell Foundation. I was desperate to have data to show my doctors how bad I was since I “look so normal”. Knowing it would put me in PEM, I did it to reduce (not completely stop) the gaslighting and that is disheartening. It was empowering to have the data and I’m grateful to have been able to do it. The examples it gave are the ones I use to explain PEM to family & friends. For example: taking a shower uses up a lot of my energy units allotted in a day.
I’m 23 years in but only started to understand what PwME were facing after realising my Integrative GP was really letting me down - no guidance, no warning about PEM & no pacing instruction. I hit Pubmed,& minutes later discovered a wealth of info; not least the ICC.
Unfortunately the years have left me severe, but Pacing with Heart Rate Monitoring as well as monitoring Heart Rate Variability is my best shot at managing the risk of PENE.
The evidence is robust and you’ve catalogued and described it well. The big problem is that some researchers are still writing deeply flawed (and even fraudulent) papers claiming that exercise is beneficial for these groups of patients (ME/CFS/ESS/LC) and a large number of health professionals believe the junk. When patients are diagnosed with any of these they should be warned to avoid physical or mental stimulation and stick to (for example) very short and gentle strolls if even that is possible and without ill effects. Exercise isn’t a cure or panacea for any medical or psychological issue and it’s critically important to fight back against those claims. People who are unwell do not need to “just get off the couch”.
I relate to this post because I think that the term PEM is much like CFS in that it is interpreted by some to mean just the normal tiredness that a person feels after doing something strenuous. But PEM is something that is so hard to explain to others. This article gives a lot of actual measurable examples of what happens to us.
The CPET test is baffling to me. I'm high moderate, borderline severe and have been severe 3 of the past 11 years. I couldn't even get on a bike, never mind thrash out a meaningful result. TWICE!! Since PEM is horrendous, potentially lasts months or longer, and is known to deteriorate....why would anyone try to put a PWME through this? Thank you
This is exactly the reason I think the recovery study by Hanson is valuable. It was important to quantify the recovery time of patients versus healthy sedentary controls.
I’m solidly moderate, but have seen glimpses of severe. I would never willingly do the test for fear of permanent worsening.
It has clearly been a very valuable test and tool for documenting abnormalities, but I hope we are able to access an equally illuminating test in the future.
You have provided a lot of useful information here. I agree that post exertional neuroimmune exhaustion is a more accurate description when it comes to myalgic encephalomyelitis.
One thing might be good to add is that although P.E.N.E. is specific to ME, PEM is no longer considered specific to ME/CFS. While it may be required for an ME/CFS diagnosis, we are now seeing other conditions have PEM. Gulf War Illness is one example.
Here is a paper discussing that some Chronic Cancer Fatigue patients have PEM.
" While only a minority (up to 29% in this sample) may experience PEM, exercise specialists and health care professionals working with people with chronic CRF must be aware that PEM may be an issue. Symptom exacerbation after exercise should be monitored, and exercise should be tailored and adapted to limit the potential for harm."
https://www.medrxiv.org/content/10.1101/2019.12.12.19014829v1.full
We need all Drs to understand the importance of thorough screening to make sure they don't prescribe harmful treatments.
Excellent points, thank you!
You got me thinking about this issue of PEM as compared to P.E.N.E.. I wrote about it here. https://colleensteckelmeiccinfo.substack.com/p/pem-is-not-equal-to-pene
I did the two day CPET at the Workwell Foundation. I was desperate to have data to show my doctors how bad I was since I “look so normal”. Knowing it would put me in PEM, I did it to reduce (not completely stop) the gaslighting and that is disheartening. It was empowering to have the data and I’m grateful to have been able to do it. The examples it gave are the ones I use to explain PEM to family & friends. For example: taking a shower uses up a lot of my energy units allotted in a day.
Just wanting you to know I’m loving your work!
I’m 23 years in but only started to understand what PwME were facing after realising my Integrative GP was really letting me down - no guidance, no warning about PEM & no pacing instruction. I hit Pubmed,& minutes later discovered a wealth of info; not least the ICC.
Unfortunately the years have left me severe, but Pacing with Heart Rate Monitoring as well as monitoring Heart Rate Variability is my best shot at managing the risk of PENE.
Thanks for a fab blog; it’s much appreciated 🌻
Thank you!
The evidence is robust and you’ve catalogued and described it well. The big problem is that some researchers are still writing deeply flawed (and even fraudulent) papers claiming that exercise is beneficial for these groups of patients (ME/CFS/ESS/LC) and a large number of health professionals believe the junk. When patients are diagnosed with any of these they should be warned to avoid physical or mental stimulation and stick to (for example) very short and gentle strolls if even that is possible and without ill effects. Exercise isn’t a cure or panacea for any medical or psychological issue and it’s critically important to fight back against those claims. People who are unwell do not need to “just get off the couch”.
You’re absolutely right. When immersed in the good science, it’s easy to forget that there’s equally bad science being pumped out.
It’s one reason I think our community needs to be as informed as possible and, when able, use these resources during conversations with doctors.
BRILLIANT ALL OF THIS!! Thank you for such a great compilation and articulation of SO MUCH of what is core to this "weirdo" disease!!
Thank you for compiling this! I so appreciate it.