Dr Patterson on Long Haul Covid vs ME/CFS
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Maraviroc and statins seems to be the way to go. Rest, especially this horse dewormer Ivermectin, which failed in so many studies, seems like useless additions. Sounds reasonable tbh. bc both are the key parts to kill those long living, antigen presenting granulocytes.
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Anyone with access to generics going to try this?
Interesting. Seems like its also coming to the Uk soonish.
https://mylongcoviddiaries.medium.c...nly-the-front-line-is-in-my-body-3ee222a85d01
https://mylongcoviddiaries.medium.c...nly-the-front-line-is-in-my-body-3ee222a85d01
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I'm not convinced at all.
Bruce Patterson might have some high reputation but all in all he did not deliver when listening to the LC bubble. And listening to/reading him is like going to a naturopath or shaman: take A then always B, no matter what.
And over the years I have seen studies on cytokines in ME that we're not reproducible and due to my advocacy for OMF over the last few years talking to hundreds of patients and seeing many lab results I can only conclude: We are not there yet. Studies are often too small and then there seems to be a selection bias in some. Anyway, cytokine profiles differ a lot. Maybe the initial type of onset is responsible or a very complex interplay of our immune system with pathogens and maybe things we don't even know about yet.
Speaking just for me I have a COMPLETELY different cytokine/chemokine profile from what Patterson and some other studies say. And yet I have ME with all those symptoms of the CCC - except for pain.
I think we are under an umbrella term called ME/CFS: 100 years ago we knew there is cancer. But it was just cancer. Now we know there are multiple types of cancer and all have to be treated differently. I think it's naive to think that it's different in such a complex multi-system disease like “Myalgic Encephalomyelitis”... Whatever that is.
I'm excited though. Things are moving forward. But I don't trust a Patterson who has just begun to understand a certain type of disease. I have to see big studies first or it's no better than what we already have: clinicians with scientific background a.k.a. Chia or DeMeirler.
Bruce Patterson might have some high reputation but all in all he did not deliver when listening to the LC bubble. And listening to/reading him is like going to a naturopath or shaman: take A then always B, no matter what.
And over the years I have seen studies on cytokines in ME that we're not reproducible and due to my advocacy for OMF over the last few years talking to hundreds of patients and seeing many lab results I can only conclude: We are not there yet. Studies are often too small and then there seems to be a selection bias in some. Anyway, cytokine profiles differ a lot. Maybe the initial type of onset is responsible or a very complex interplay of our immune system with pathogens and maybe things we don't even know about yet.
Speaking just for me I have a COMPLETELY different cytokine/chemokine profile from what Patterson and some other studies say. And yet I have ME with all those symptoms of the CCC - except for pain.
I think we are under an umbrella term called ME/CFS: 100 years ago we knew there is cancer. But it was just cancer. Now we know there are multiple types of cancer and all have to be treated differently. I think it's naive to think that it's different in such a complex multi-system disease like “Myalgic Encephalomyelitis”... Whatever that is.
I'm excited though. Things are moving forward. But I don't trust a Patterson who has just begun to understand a certain type of disease. I have to see big studies first or it's no better than what we already have: clinicians with scientific background a.k.a. Chia or DeMeirler.
I mean, most of the diseases work that way. You have this ? You get that medicine. Why should long covid / Cfs be so different and every patient so unique ? In the end, we all have no energy, so at least some key points must align within everyone with long covid and Cfs. Not saying i believe Dr. Patterson in any way, but at least someone should give it a good try, because why miss a real chance of maybe getting better ? Long covid is synonym for me for Cfs. So if he really can "heal"/improve long covid, there should be a real chance it also should work for us.
I plan to ask my doctor about this in a week, and hopefully will at least get the testing done. I would be willing to try the medication combo if indicated, but that would also depend on the rest of my treatments and how to prioritize them.
I am also skeptical but it is very hard to turn a blind eye when Patterson speaks about “post Lyme” which is probably the best two word description for my illness.
I am also skeptical but it is very hard to turn a blind eye when Patterson speaks about “post Lyme” which is probably the best two word description for my illness.
Either he is a genius because he acts like post Lyme/ long covid/ Cfs are the same ( which i also do believe tbh.) or he lumps all together to get more ppl into his unproven testing to make a quick buck. We cant be sure at this point. But i mean, there must a connection. And his theory at least makes sense on a theoretical level. Because we all have chronic activated immune systems. And the granulocytes debris theory is pretty simple and smart. Explains why the symptoms are all over the body, because bloodstreams. Explains why ppl get worse with exercise, more granulocyte activity.
https://www.verywellhealth.com/exercise-long-covid-athletes-5195661 PEM in long covid !
I am just interested what his blood test show for Cfs. Less the cytokines because they are so fragile to measure and vary so hard during a day. I am more interested in CCL3-5 / Rantes / VEGF / sCD40L. Hopefully some ppl can at least try his lab test to help us all out here.
https://www.verywellhealth.com/exercise-long-covid-athletes-5195661 PEM in long covid !
I am just interested what his blood test show for Cfs. Less the cytokines because they are so fragile to measure and vary so hard during a day. I am more interested in CCL3-5 / Rantes / VEGF / sCD40L. Hopefully some ppl can at least try his lab test to help us all out here.
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this is the part i don’t really understand. he has recently specifically stated he believes me/cfs and long covid are different diseases. and yet on twitter he is advocating me/cfs patients to use the current testing and treatment that is decided by the machine learning that was created on long hauler data. maybe i’m just confused about the process but it doesn’t make sense to me
Here is a ME/CFS Patient with elevated RANTES:
https://forums.phoenixrising.me/thr...-1ra-bdnf-rantes-age-help.84336/#post-2346699
I myself have elevated RANTES / VEGF / IL-10 / IL-1B / TNF-A / TGF-B etc etc.
Here is part of my blood makers:
https://forums.phoenixrising.me/thr...yelitis-cfs.81197/#lg=attachment41508&slide=0
So there are a few of us that would match quite well with the CCL5-Inhibitor. Sadly the drug to treat costs me 1000€ per month and I cant get a generic to Germany.
To quote the ME/CFS CYTOKINE study in my previously started thread:
The association of plasma cytokines with diagnosis and symptoms of ME: .... diagnosis of ME/CFS is significantly associated with increased plasma content of IL-10, MIP-1β, and RANTES and lower PDGF, IL-6, eotaxin, MIP-1α and VEGF. ...... higher plasma values of IL-1β, IL-8, IL-10, IP-10, and RANTES were significantly associated with higher Chalder Fatigue scores i.e. greater perceived fatigue"
This partly matches the Long Hauler Index
Edit: Lab testing in Germany had cost me roughly the same as they are asking for their Long Hauler Assay.
But some Markers are missing like CCL3-4 etc. Some are simpyl not available to test here.
https://forums.phoenixrising.me/thr...-1ra-bdnf-rantes-age-help.84336/#post-2346699
I myself have elevated RANTES / VEGF / IL-10 / IL-1B / TNF-A / TGF-B etc etc.
Here is part of my blood makers:
https://forums.phoenixrising.me/thr...yelitis-cfs.81197/#lg=attachment41508&slide=0
So there are a few of us that would match quite well with the CCL5-Inhibitor. Sadly the drug to treat costs me 1000€ per month and I cant get a generic to Germany.
To quote the ME/CFS CYTOKINE study in my previously started thread:
The association of plasma cytokines with diagnosis and symptoms of ME: .... diagnosis of ME/CFS is significantly associated with increased plasma content of IL-10, MIP-1β, and RANTES and lower PDGF, IL-6, eotaxin, MIP-1α and VEGF. ...... higher plasma values of IL-1β, IL-8, IL-10, IP-10, and RANTES were significantly associated with higher Chalder Fatigue scores i.e. greater perceived fatigue"
This partly matches the Long Hauler Index
Edit: Lab testing in Germany had cost me roughly the same as they are asking for their Long Hauler Assay.
But some Markers are missing like CCL3-4 etc. Some are simpyl not available to test here.
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Cant decide if i want to just gamble with maraviroc or not. I cant take any worsening. But i also could never get my doctors to test me for the long covid test. I had to beg them for mara.
Hm
Anybody have the website of the testing company they use?
Hm
Anybody have the website of the testing company they use?
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I don't wanted to say that there was no overlap... You could give every patient with cancer MTX and it would somehow work for many... But if you give them the Dr g for that certain type of cancer, the chances to get into remission are better. Why do I think that's the case for ME? Because some get into remission let's say after taking Chia's Equilibrant or Tenofovir. Others don't react at all.
Yes, I know. I only said: that is not true for everyone. It's no biomarker. Not everyone with severe ME has this profile. For example I have high IL-1b, IL-8 but the rest is low, especially RANTES and TGFb.
And there are many LC peeps who posted on Twitter that his treatment didn't work. So that why I said it might not be better than what we already have. Of course, that includes that it might work for example for you @mitoMAN
Yes, I know. I only said: that is not true for everyone. It's no biomarker. Not everyone with severe ME has this profile. For example I have high IL-1b, IL-8 but the rest is low, especially RANTES and TGFb.
And there are many LC peeps who posted on Twitter that his treatment didn't work. So that why I said it might not be better than what we already have. Of course, that includes that it might work for example for you @mitoMAN
I hope Patterson is the same, David Sinclair doesn't fuck around.
I love listening to smart people.
I love listening to smart people.
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