As with my previous blogpost on leaky gut, I can't be sure I have all the facts straight, but wanted to put this out there, having been trying to get my ME-slowed brain around it. Please feel free to point out any errors or provide further relevant info or links.
I have been pondering for some time on possible relationships between the symptoms of ME/CFS and the exacerbation of them by incorrect diet and over-exertion.
Many people describe their adverse reactions to various treatments as 'Herxing'. This refers to the Jarisch-Herxheimer reaction (http://www.patient.co.uk/doctor/jarisch-herxheimer-reaction) which can accompany the death of various pathogens, notably spirochaetes (US spelling spirochetes) (http://virology-online.com/Bacteria/Spirochaetes.htm) that cause diseases including Lyme Disease and syphilis. Symptoms and signs include:
The Patient UK page also states:
But I have been struck by the marked similarity between the symptoms of the Jarisch-Herxheimer reaction and those of ME/CFS, and have wondered why some people are so sure that they are 'Herxing' and not just suffering an exacerbation of their ME/CFS (e.g. post-exertional malaise/PEM).
There are other pathogens, notably gram-negative bacteria, that can cause similar symptoms when they are attacked by components of the immune system, and release endotoxins:
Symptoms and signs listed here include:
Researcher Michael Maes and others have reported remission of symptoms following the healing of leaky gut. Maes and others do indeed consider bacterial endotoxins to be causal factors for ME symptoms. In this paper to which I refer in my earlier blogpost here Maes and Leunis relate symptoms to translocation of bacteria and/or their endotoxins across the gut wall (from the gut lumen to the bloodstream).
So if a person has leaky gut, there will be a more-or-less continuous flow of bacteria and/or their endotoxins (LPS) across the gut wall, and continuous triggering of the immune system to attack the bacteria. Perhaps this continuous immune activity is a significant cause of ME/CFS symptoms. In 'normal' disease (e.g. colds and flu), symptoms tend to be mostly due to our own immune response rather than to the direct activity of the pathogens.
Why do symptoms worsen after exertion, and why is there a delay of one, two, three or even more days before the symptoms appear?
This paper, also cited in my aforementioned blogpost, describes how the gut wall becomes more permeable as a result of exertion - even in healthy people.
The immune system will then attack the (presumably increased) intruding bacteria, causing them to release endotoxins.
This paper found that exertional heat stress caused an increase in endotoxins in the blood of both trained and untrained people. The paper states:
I don't know whether the delay in symptoms appearing is due to the time it takes for the gut to become more permeable, the time it takes for the immune system to destroy the bacteria, or both. Maybe observing how soon gut symptoms appear after exertion/dietary error (if one gets gut symptoms) and comparing this with when PEM symptoms appear, can provide a clue.
A leaky-gut-exacerbating diet will cause similar problems. This has indeed been my experience. When my symptoms have become worse, and I have become less tolerant of exertion, I have often been able to link it to a food or a bout of over-exertion (but it's not easy making such links, and much harder if one has made multiple changes around the same time).
As my symptoms have improved, I have noticed that not only does PEM become much milder - at one point almost indetectable - the delay before symptoms appear increases. So when I have been at my best, the PEM was hard to detect, and seemed to be coming about a week after exertion. For most of my illness the delay has been a regular 2 days.
What could this mean? Presumably as my gut is behaving better, fewer pathogenic bacteria and/or their endotoxins are entering my bloodstream thanks to reduced gut wall permeability. Perhaps my immune system is also less active. Perhaps it was previously attacking 'good' gut flora as well as the baddies, exacerbating the gut dysbiosis?
But nothing in biology is simple...
There also seems to be variation according to the season. However well I have paced and eaten, PEM delays start shortening with the days, with symptoms getting slightly worse. As the days are lengthening again, my PEM delay seems to be up to 3 days, and it is getting milder again.
I don't think that this is due to Vitamin D levels, as I use a UVB lamp during the darker times of year.
Scientists are coming to the view that the benefits of sunshine go beyond Vitamin D.
So my prescription is: go and live in the opposite hemisphere when the days are too short in yours!
(and don't forget the pacing and leaky-gut diet)
UPDATE 18TH JUNE 2014
Have just done 2 more blogposts about PEM and a possible easy way to combat it. Watch me try!
I have been pondering for some time on possible relationships between the symptoms of ME/CFS and the exacerbation of them by incorrect diet and over-exertion.
Many people describe their adverse reactions to various treatments as 'Herxing'. This refers to the Jarisch-Herxheimer reaction (http://www.patient.co.uk/doctor/jarisch-herxheimer-reaction) which can accompany the death of various pathogens, notably spirochaetes (US spelling spirochetes) (http://virology-online.com/Bacteria/Spirochaetes.htm) that cause diseases including Lyme Disease and syphilis. Symptoms and signs include:
- Malaise
- Slight-to-moderate pyrexia
- Flush due to vasodilation
- Tachycardia
- Leukocytosis
- Any existing skin lesions become more prominent
The Patient UK page also states:
But I have been struck by the marked similarity between the symptoms of the Jarisch-Herxheimer reaction and those of ME/CFS, and have wondered why some people are so sure that they are 'Herxing' and not just suffering an exacerbation of their ME/CFS (e.g. post-exertional malaise/PEM).
There are other pathogens, notably gram-negative bacteria, that can cause similar symptoms when they are attacked by components of the immune system, and release endotoxins:
Symptoms and signs listed here include:
- Fever
- Increased capillary permeability
- Chills
- (Hemorrhagic) shock
- Leukopenia followed by leukocytosis
- Severe diarrhea
- Altered resistance to bacterial infection
- Thrombocytopenia
Researcher Michael Maes and others have reported remission of symptoms following the healing of leaky gut. Maes and others do indeed consider bacterial endotoxins to be causal factors for ME symptoms. In this paper to which I refer in my earlier blogpost here Maes and Leunis relate symptoms to translocation of bacteria and/or their endotoxins across the gut wall (from the gut lumen to the bloodstream).
So if a person has leaky gut, there will be a more-or-less continuous flow of bacteria and/or their endotoxins (LPS) across the gut wall, and continuous triggering of the immune system to attack the bacteria. Perhaps this continuous immune activity is a significant cause of ME/CFS symptoms. In 'normal' disease (e.g. colds and flu), symptoms tend to be mostly due to our own immune response rather than to the direct activity of the pathogens.
Why do symptoms worsen after exertion, and why is there a delay of one, two, three or even more days before the symptoms appear?
This paper, also cited in my aforementioned blogpost, describes how the gut wall becomes more permeable as a result of exertion - even in healthy people.
The immune system will then attack the (presumably increased) intruding bacteria, causing them to release endotoxins.
This paper found that exertional heat stress caused an increase in endotoxins in the blood of both trained and untrained people. The paper states:
I don't know whether the delay in symptoms appearing is due to the time it takes for the gut to become more permeable, the time it takes for the immune system to destroy the bacteria, or both. Maybe observing how soon gut symptoms appear after exertion/dietary error (if one gets gut symptoms) and comparing this with when PEM symptoms appear, can provide a clue.
A leaky-gut-exacerbating diet will cause similar problems. This has indeed been my experience. When my symptoms have become worse, and I have become less tolerant of exertion, I have often been able to link it to a food or a bout of over-exertion (but it's not easy making such links, and much harder if one has made multiple changes around the same time).
As my symptoms have improved, I have noticed that not only does PEM become much milder - at one point almost indetectable - the delay before symptoms appear increases. So when I have been at my best, the PEM was hard to detect, and seemed to be coming about a week after exertion. For most of my illness the delay has been a regular 2 days.
What could this mean? Presumably as my gut is behaving better, fewer pathogenic bacteria and/or their endotoxins are entering my bloodstream thanks to reduced gut wall permeability. Perhaps my immune system is also less active. Perhaps it was previously attacking 'good' gut flora as well as the baddies, exacerbating the gut dysbiosis?
But nothing in biology is simple...
There also seems to be variation according to the season. However well I have paced and eaten, PEM delays start shortening with the days, with symptoms getting slightly worse. As the days are lengthening again, my PEM delay seems to be up to 3 days, and it is getting milder again.
I don't think that this is due to Vitamin D levels, as I use a UVB lamp during the darker times of year.
Scientists are coming to the view that the benefits of sunshine go beyond Vitamin D.
So my prescription is: go and live in the opposite hemisphere when the days are too short in yours!
(and don't forget the pacing and leaky-gut diet)
UPDATE 18TH JUNE 2014
Have just done 2 more blogposts about PEM and a possible easy way to combat it. Watch me try!
