link to the CDC page referenced in the Lymedisease.org article here
https://www.cdc.gov/ncezid/what-we-do/our-topics/chronic-symptoms.htmlthe CDC said...
It is not fully known why some people experience chronic general symptoms. Infections trigger many different responses in the human body. This makes it difficult for researchers to sort out why some people have chronic symptoms after an infection and others do not. In some cases, an infection may continue to trigger the immune system or “turn on” an autoimmune condition, where the immune system attacks healthy cells by mistake. In other cases, the body’s response to an infection might cause inflammation that may be hard to “turn off.” These immune or related inflammatory responses may cause a person to feel more pain, fatigue, or other symptoms than normal. Other responses include damage to the nervous system, changes to the microbiome (the collection of microbes, or germs, that live on and in the body), and damage to the body’s ability to produce energy from food.
link to the current CDC page on "PTLDS" here
https://www.cdc.gov/lyme/postlds/index.htmlthe CDC said...
Why some patients experience PTLDS is not known. Some experts believe that Borrelia burgdorferi can trigger an “auto-immune” response causing symptoms that last well after the infection itself is gone. Auto–immune responses are known to occur following other infections, including campylobacter (Guillain-Barré syndrome), chlamydia (reactive arthritis), and strep throat (rheumatic heart disease). Other experts hypothesize that PTLDS results from a persistent but difficult to detect infection. Finally, some believe that the symptoms of PTLDS are due to other causes unrelated to the patient’s Borrelia burgdorferi infection.
my own perspective:
the first page is new - or at least reviewed / updated October 2023
the second one on PTLDS is older - marked last reviewed January 2022
while the CDC has long acknowledged that some people experience long terms symptoms after becoming infected with borrelia burgdorferi (or other borrelial that cause Lyme disease) it has always stated that this is a small minority - and that this is a separate condition called Post Treatment Lyme Disease Syndrome.
bizarrely - and unlike any other known disease state - the only criterion that differs between the two conditions is that persons having been given 2-4 weeks of antibiotics but are still experiencing symptoms are to be diagnosed with PTLDS - in other words denying the existence of chronic infection (accompanying policy guides against offering further antibiotic therapy on the basis that they believe it is not effective ).
however, both articles now seem to acknowledge that ongoing infection is one possibility
in the first article - in the case of the general long term symptoms after infection of different sorts including long COVID -
"In some cases, an infection may continue to trigger the immune system or “turn on” an autoimmune condition"
and in the earlier Lyme disease specific article on PTLDS - the somewhat more passive "Other experts hypothesize that PTLDS results from a persistent but difficult to detect infection."
in both cases these statements are somewhat buried in the text
so what do i think is going on here?
well, it is very rare indeed for large institutions such as the CDC to do what they should do when they are wrong and come out publicly flat out state that they had it wrong and now hold the opposite view.
There are multiple reasons and factors that feed into this. Perhaps the most generous is that they incorrectly believe that this will undermine confidence in the institution itself and thereby all the other work they do.
But in addition there are personalities, reputations and ego's involved and individuals who's names are attached to certain policies who will be very reluctant to see their positions reversed for fear of reputation loss, status or position erosion and potentially repercussions from interested parties - be they industry actors on the one side - or patient advocates on the other.
so, much more often, when such institutions finally come to recognise that their position is becoming untenable due to new research or public pressure - they start to take steps try to manage their change in position politically.
for instance they may start to acknowledge that other possibilities or explanations exist and might have some bearing - or start to talk about
newer research supporting such explanations - where before this was simply ignored.
this may be what we are now seeing with the CDC and chronic lyme.
its a subtle shift - but one that allows them to portray their role in the events as neutral bystander - simply reacting to the evidence as it emerges - whereas, anyone following their actions for the past few decades will know, they have had a very active role in shaping public policy. A policy that will have caused the premature deaths of thousands of people and the loss of decades of productive life of many millions more.
still - perhaps its a sign that change is coming - finally - gradually and grudgingly - as the old guard retire and as other events overtake the policymakers - like the large amount of research on long COVID - that may prove ongoing infection is a possibility there.