Jonathan Edwards
Senior Member (Voting Rights)
This thread has been split from here.
As issues were quite intertwined, a number of posts have been copied. In copied posts, text not related to this topic has been greyed.
This makes sense to me, but I am a bit more optimistic. CCC is probably not ideal for clinical classification but I think the IOM proposal at least indicates a fresh look with PEM as a focus. My impression from talking to scientists in the UK (as apposed to babblers of various sorts) is that CCC is seen as good for research and IOM as good for the clinic. We should expect the two to require different criteria. (No scientist is going to use NICE fortunately.)
I agree that CFS has the disadvantage that it conflates with CF. But ME for me also has the disadvantage that it is conflated with the 'outbreak illnesses' that are the source of the spurious 'encephalomyelitis' word.
A lot of competent research is now being done on the immunology and pretty much all the original immunological claims for ME, as a chronic disabling illness, have failed to stand up. The best experiment done recently was the Norwegian phase 3 trial which came out negative. We have some evidence of microglial activation but that is nowhere near 'encephalomyelitis' and even if it is confirmed I doubt it merits being called 'inflammation' or even 'immunological'. So the ICC idea of 'neuroimmune exhaustion' looks to me very much like a fantasy.
I also doubt that the criteria are of any practical use because almost all the categories have a soft option that you can tick if you want to.
So I see SEID as a potentially useful way of getting away from CFS=CF and ME=a neuroimmune disease that never existed. I still like ME as a name because it is widely accepted and it will do fine if the focus is on PEM. But I don't see a code for SEID along side it doing any great harm.
As issues were quite intertwined, a number of posts have been copied. In copied posts, text not related to this topic has been greyed.
Regarding the IOM criteria - I know some US patients do not want to see the IOM criteria used but others do support its rollout. I pushed for the CCC multiple times over the years but saw no movement in the medical community. IMO, this is the first time in decades that we've been able to get medical providers to take a fresh look at the disease, to remove recommendations for CBT and GET, to provide definitive statements that the disease is not psychiatric but rather involves neurological, immunological, energy metabolism, and autonomic dysfunction.
Regarding the concern with the criteria used in research - I am also concerned with that issue but its more than just whether the IOM criteria are used there. The position taken when the NIH conducted the CDE effort was that any criteria could be used, including Fukuda. And the specific methods to evaluate those criteria were undefined. In the UK, NICE has been used and while it says it requires PEM, it also states the exacerbation of symptoms post exertion is optional so what kind of PEM is that? I dont favor the IOM for use in research but even if its not used, we still have substantial issues in how research cohorts are selected that must be addressed. Until that happens, we will be comparing apples and oranges.
This makes sense to me, but I am a bit more optimistic. CCC is probably not ideal for clinical classification but I think the IOM proposal at least indicates a fresh look with PEM as a focus. My impression from talking to scientists in the UK (as apposed to babblers of various sorts) is that CCC is seen as good for research and IOM as good for the clinic. We should expect the two to require different criteria. (No scientist is going to use NICE fortunately.)
I agree that CFS has the disadvantage that it conflates with CF. But ME for me also has the disadvantage that it is conflated with the 'outbreak illnesses' that are the source of the spurious 'encephalomyelitis' word.
A lot of competent research is now being done on the immunology and pretty much all the original immunological claims for ME, as a chronic disabling illness, have failed to stand up. The best experiment done recently was the Norwegian phase 3 trial which came out negative. We have some evidence of microglial activation but that is nowhere near 'encephalomyelitis' and even if it is confirmed I doubt it merits being called 'inflammation' or even 'immunological'. So the ICC idea of 'neuroimmune exhaustion' looks to me very much like a fantasy.
I also doubt that the criteria are of any practical use because almost all the categories have a soft option that you can tick if you want to.
So I see SEID as a potentially useful way of getting away from CFS=CF and ME=a neuroimmune disease that never existed. I still like ME as a name because it is widely accepted and it will do fine if the focus is on PEM. But I don't see a code for SEID along side it doing any great harm.
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