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I wonder if the definition of PEM can be changed to include that it can occur even days after physical/mental exertion. The latter is the case for some of us.
"Post-exertional malaise: symptoms profoundly worsen hours or days after physical or mental exertion, leaving an individual very incapacitated for a few days, or even weeks, after this exertion."
However, I am not sure if that reads as clearly as the original.
If you're trying to keep it short, could this work -
Post-exertional malaise : profound symptoms may occur immediately after physical/mental activity or may be delayed hours to days leaving an individual incapacitated indefinitely after this exertion."
Post-exertional malaise: profoundly-worsened symptoms may occur during/immediately after physical/mental exertion, may start hours to days afterwards and leave an individual incapacitated for varied durations."
Thanks @Hip for the wayback link. I had been trying to find a doc I remembered seeing on the list.
Understood about the brevity. The two points I was adding were 1) PEM may start during activity. 2) PEM varies. When my illness started, I would not have thought PEM applied to me because it is emphasized as post-activity. When I got diagnosed, I finally found out I need to stop activity immediately if I start having PEM. This strategy reduced my severe pain dramatically. This principle helped me, so it might help others who start PEM during activity. Here's a more brief suggestion including those two concepts and based on yours and @charlie1 's versions, if you like. If not, no problem.
Post-exertional malaise: profoundly-worsened symptoms may occur during/immediately after physical/mental exertion, may start hours to days afterwards and leave an individual incapacitated for varied durations."
Post-exertional malaise: physical or mental exertion triggers a state of profoundly worsened symptoms. This appears right after the exertion, or hours or days later. This state then lasts days or weeks.
The ICC primer has a sidebar that describes PENE as immediate or delayed (page 2), but obviously the 'P' is for post, so it's expected to describe what occurs after exertion. I think the change listed captures this well.The only thing about PEM appearing during the exertion is that this is not mentioned in the ICC, so it's probably best to stick to what is said in these authoritative sources. Though certainly I have read many accounts of PEM appearing during the exertion, especially if the exertion goes on for long enough.
The ICC primer has a sidebar that describes PENE as immediate or delayed (page 2), but obviously the 'P' is for post, so it's expected to describe what occurs after exertion. I think the change listed captures this well.
It's clear that we have both post exertional malaise as well as exertion intolerance as two distinct issues. The ICC primer lists aspects of the latter on page 3.
No, on page 3 the table that lists the response to exercise, comparing the normal response to ME patients.
No, on page 3 the table that lists the response to exercise, comparing the normal response to ME patients.
It seems to me that you did not consider some envariomental factors such as heavy metals exposure.
I would like to ask why you (as well as J Montoya) consider a borrelia infection to be something else from CFS, while you consider HHV6 as a manifestation of CFS/ME. I would say that if chronic borrelia is not CFS, then chronic HHV6 is not CFS as well.
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Your description of chronic Lyme is CDC oriented, but that is only one possible way to describe this illness. I would suggest you to consider also the descriptions of other authors, as S Donta and B Fallon, and you will find that chronic Lyme has the same identical features of CFS, in many cases, without joints swelling, for istance.
Moreover testing with double tiers procedure (Elisa + western blot) is not as reliable as you say. This is well known and documented. Many Lyme patients have negative sierology, and still have positive PCR. You can easly find pubblications on this topic in Pub Med.
† Sensitivity is the proportion of people with the disease who have a positive test result. Specificity is the proportion of people without the disease who have a negative test result.
Hi paolo,
I am pleased you like the ME/CFS roadmap.
It would great if you write a similar document in Italian. I think there is a strong need to make patients aware of the medical treatments that are available for ME/CFS, because in so many countries (particularly the UK), ME/CFS is still often considered a psychogenic disease, so that patients are then given inappropriate psychological treatments, such as cognitive behavioral therapy (CBT), rather than treatments that address the underlying biology of the disease.
You may be interested in these documents if you are writing an Italian ME/CFS treatment guide:
ME/CFS Treatment Resource Guide for Practitioners, A. Martin Lerner
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management: The Basics and Beyond, Daniel Peterson
And there may be differences in NK function: in Lyme patients, I have seen some reports of low numbers of NK cells; whereas in ME/CFS the number of NK cells is normal, but their activation is low.