Assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Holtzman et al. (2019)

There's quite a bit more to do in this area in terms of developing said questionnaire and hopefully putting more flesh on the descriptive bones of PEM. I'm also inclined to suggest that as well as describing PEM and how it is experienced by those diagnosed with ME/CFS, science needs to do a lot more on the biology of PEM and what could potentially help (yet again, minus the psychobabble). Still, 'asking patients' continues to be an important theme in ME/CFS research...
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https://questioning-answers.blogspo...l-malaise-pem-in-mecfs-what-patients-say.html
 
ME for 28 years.
My bolding.
1) One interesting finding was that more than 80% of patients endorsed several non-exertion triggers of PEM such as emotional events, noise or sensory overload. Other items such as heat or watching a video also scored high: it seems like anything that takes away energy, can trigger PEM.
Over stimulation and cognitive depletion is instant PEM that resolves quicker than physical delayed PEM. I am heat intolerant but have never experienced PEM from it, but I do have difficulty walking or being upright with heat so this is more related to autonomic issues (not necessarily PEM).

2) More than 90% of patients experienced a delayed onset of PEM. So that’s a thing. It also seems that PEM can last a long time. 30% said that the recovery period can last 1-6 months. Two-thirds said they suffered a crash that never resolved.
Depends on how much I went over my 'limit window'. Minor physical over exertion takes 48hrs to return to base.

3) Most patients said that pacing helped but that it was only moderately or mildly effective. In one of the most intriguing findings, only 6% said that pacing allows them to completely avoid symptom exacerbation.
Yup, I've avoided PEM for 3 years now.

4) Exercising within limits didn’t seem to work for most patients. Only 37% of subjects reported being able to exercise a little without PEM-related symptoms, as long as they stay within certain limits. This corresponds with earlier findings by the research team of Nijs: exercise limits cannot completely prevent PEM: https://www.ncbi.nlm.nih.gov/pubmed/18441039[/QUOTE]
Yup, I can exercise (power walking for one hour 2-3x/week) on days I'm feeling ok without PEM or feeling anything the next day.
 
Mij said:
ME for 28 years.
My bolding.
1) One interesting finding was that more than 80% of patients endorsed several non-exertion triggers of PEM such as emotional events, noise or sensory overload. Other items such as heat or watching a video also scored high: it seems like anything that takes away energy, can trigger PEM.
Over stimulation and cognitive depletion is instant PEM that resolves quicker than physical delayed PEM. I am heat intolerant but have never experienced PEM from it, but I do have difficulty walking or being upright with heat so this is more related to autonomic issues (not necessarily PEM).

2) More than 90% of patients experienced a delayed onset of PEM. So that’s a thing. It also seems that PEM can last a long time. 30% said that the recovery period can last 1-6 months. Two-thirds said they suffered a crash that never resolved.
Depends on how much I went over my 'limit window'. Minor physical over exertion takes 48hrs to return to base.

3) Most patients said that pacing helped but that it was only moderately or mildly effective. In one of the most intriguing findings, only 6% said that pacing allows them to completely avoid symptom exacerbation.
Yup, I've avoided PEM for 3 years now.

4) Exercising within limits didn’t seem to work for most patients. Only 37% of subjects reported being able to exercise a little without PEM-related symptoms, as long as they stay within certain limits. This corresponds with earlier findings by the research team of Nijs: exercise limits cannot completely prevent PEM: https://www.ncbi.nlm.nih.gov/pubmed/18441039
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Yup, I can exercise (power walking for one hour 2-3x/week) on days I'm feeling ok without PEM or feeling anything the next day.[/QUOTE]
Out of interest @Mij , how long has it taken to get to this state?
 
Amw66 said:
Yup, I can exercise (power walking for one hour 2-3x/week) on days I'm feeling ok without PEM or feeling anything the next day.
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Out of interest @Mij , how long has it taken to get to this state?[/QUOTE]

Hi @Amw66

Sorry for the delay in replying. I just saw your message today. I'll have to break it down a little.

Early in the illness I started with 5-15 minute regular walking (5.5 years after onset) once a week after my health was improving, but that took me over one year to build up to, and there were periods in between I couldn't do anything. I didn't have a baseline.

Around the 7 year mark I hit a 'turning point' where I was able to do more, feeling better and started running again. My health was improving, but the running was causing PEM which I never experienced before. I didn't understand what PEM was and there wasn't much information in 1999-2000. I continued to run for about 2 years because I eventually 'recovered' from PEM after 2-3 days.

Eventually I stopped running because PEM was intensifying (duh) and I started learning more about the harm it was causing. Instead I decided to power walk and slowly build up to where I didn't experience PEM the next day and found my baseline. I'm very strict and disciplined not go over my 'energy window' and haven't had PEM in over 4 years.

Btw, I was NOT doing GET!! I was increasing activity over a long period of time based on how I was feeling without getting PEM.
 
Heat, noise (from nearby), standing: Imma guess that 80% of us would say those are sure to cause a crash, yet they’re not on any official list I know of. Personally, I’d say that if a person can tolerate standing in place and heat roughly as much as before they got sick, they have something else, not this disease.
 
Noise can give me a complete collapse. I dread getting new neighbours!

Also, most people with ME can't read blocks of text to the extent that people have taken interesting writings and put them into paragraphs to be readable by the rest of us here.
 
Mithriel said:
Noise can give me a complete collapse. I dread getting new neighbours!

Also, most people with ME can't read blocks of text to the extent that people have taken interesting writings and put them into paragraphs to be readable by the rest of us here.
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I've noticed that when my pain and exhaustion are mounting, noise (neighborly type or traffic, or any noise whatsoever) becomes overwhelmingly noxious. When my pain and energy level is lower, I don't have that awful sensory input, though I always wear ear plugs with noise canceling headphones over them.

Noise (and light) is the worst because my brain needs to assess the implicit 'threat' involved in random noises. Who is making them? Are they dangerous? Silly, but yet that's my brain when overloaded.
 
shak8 said:
I've noticed that when my pain and exhaustion are mounting, noise (neighborly type or traffic, or any noise whatsoever) becomes overwhelmingly noxious. When my pain and energy level is lower, I don't have that awful sensory input, though I always wear ear plugs with noise canceling headphones over them.

Noise (and light) is the worst because my brain needs to assess the implicit 'threat' involved in random noises. Who is making them? Are they dangerous? Silly, but yet that's my brain when overloaded.
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There’s nothing silly about it. These are basic, built-in, low level brain-based phenomena. They are not your choice, they’re not about your mood, they’re not your imagination.
 
Just bumping this thread in case it's useful for the work on the PEM factsheet -- apologies if you're having that on the screen already

@Trish

ME/CFS Skeptic said:
They offered an extensive, online questionnaire on PEM to ca. 1500 patients. Obviously, the ME/CFS diagnosis was not confirmed by a clinician of the research team, patients simpled reported to have been diagnosed with ME or CFS. The paper is open-access: https://www.mdpi.com/2075-4418/9/1/26

1) One interesting finding was that more than 80% of patients endorsed several non-exertion triggers of PEM such as emotional events, noise or sensory overload. Other items such as heat or watching a video also scored high: it seems like anything that takes away energy, can trigger PEM.

2) More than 90% of patients experienced a delayed onset of PEM. So that’s a thing. It also seems that PEM can last a long time. 30% said that the recovery period can last 1-6 months. Two-thirds said they suffered a crash that never resolved.

3) Most patients said that pacing helped but that it was only moderately or mildly effective. In one of the most intriguing findings, only 6% said that pacing allows them to completely avoid symptom exacerbation.

4) Exercising within limits didn’t seem to work for most patients. Only 37% of subjects reported being able to exercise a little without PEM-related symptoms, as long as they stay within certain limits. This corresponds with earlier findings by the research team of Nijs: exercise limits cannot completely prevent PEM: https://www.ncbi.nlm.nih.gov/pubmed/18441039
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