Long covid, cfs, fibro, lyme etc

heapsreal

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Patterson clearly feels for the long haulers saying that it’s “gut-wrenching” that “it’s taken us this long to recognize long COVID and treat it aggressively”. “The economic hardship of long COVID” he said, “is mind-boggling…”

Lives disrupted, jobs lost, health gone, relationships impacted – it’s all true – yet it’s a walk in the park compared to what the really long haulers – the people with ME/CFS – have experienced.
Wow!
https://covid19.onedaymd.com/2021/11/bruce-patterson-long-hauler-protocol.html?m=1
 

geraldt52

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I have literally had to laugh seeing "long-haulers" on TV going on and on about their lingering symptoms, and how they are no better, and aren't getting any real help even now after 6 months. I've been sick now over 35 years...I'd be curious to know how many of those same people gave even the slightest shit about people with CFS all those many years. Of course I know the answer. Statistically, a lot of them had to have been amongst the many who've even mocked us...
 

BrightCandle

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I have literally had to laugh seeing "long-haulers" on TV going on and on about their lingering symptoms, and how they are no better, and aren't getting any real help even now after 6 months. I've been sick now over 35 years...I'd be curious to know how many of those same people gave even the slightest shit about people with CFS all those many years. Of course I know the answer. Statistically, a lot of them had to have been amongst the many who've even mocked us...
I stopped posting in the covidlonghauler sub reddit for this very reason, their denial and dismissal of ME/CFS which still persists to this day. Despite all the compounding scientific evidence of the simularities in the disease you can guarantee about 20% of the community there including the moderators will deny ME/CFS is in anyway related or even a real disease. Its been a consistent problem since this broke out, shows the immense damage that the medical community has done to ME disease standing in the world with their actions, their collective dismissal over decades has resulted in a massive crime against humanity impacting 10s of millions worldwide such that even the populace when they catch the condition declare they don't such is the stigma.

I am not sure the science agrees with Dr Patterson's approach, monocytes are meant to clean up viral RNAand they can uptake the virus but they don't show full infection cycle. If the monocytes keep having covid RNA and proteins then its a viral reservoir somewhere in the body producing it. I think his finding is strong evidence for viral persistance and removing the monocytes might make us feel better for a while but it wont fix the underlying issue of infection.
 
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Would have been interesting if they included CIRS in that cytokine graph thing, its the most well understood chronic inflammation disease. Apparently the PEM is caused by lack of oxygen to the muscle cells which is caused by inflammation ( or microclot or other factors ), when that happens the cell sometimes produces only 2 ATP not 38 ATP, this makes glucose be used up faster ( lactic acid is produced at abnormal rate ) and eventually glycogen reserve is exhausted, and at this point the cells switch to alternative energy source and it starts eating up other things, not sure exactly what but its probably why BCAA helps, eventually it starts to eat proteins which is probably a factor of PEM but also PEM is the depletion of the glycogen store. " It is however good to know that it will take a minimum of 48 hours to fully replenish glycogen stores once they are depleted. This requires a high carbohydrate diet (60-70% of the energy coming from carbohydrates) and rest during the recovery time. ". It may also be why some people say their collagen is degraded over time, i'm not sure yet whether its a major issue for me ( after 6 years of illness ).
 

Marylib

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I don't follow that subreddit @BrightCandle but that's really sad. I guess it's the usual thing - no one wants to have ME because there is no cure or treatment. It's 'chronic fatigue' so maybe those who mock us are being mocked by their own doctors and families who want them to snap out of it. So maybe they try to snap out of it through activity and exertion and just get sicker. First person I ever knew well who got a CFS diagnosis was post-meningitis, then came another post-sinus infection. I know I never mocked them but I never imagined I would be the one who recovered less well than they did when it was ultimately my turn.
 

heapsreal

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I don't follow that subreddit @BrightCandle but that's really sad. I guess it's the usual thing - no one wants to have ME because there is no cure or treatment. It's 'chronic fatigue' so maybe those who mock us are being mocked by their own doctors and families who want them to snap out of it. So maybe they try to snap out of it through activity and exertion and just get sicker. First person I ever knew well who got a CFS diagnosis was post-meningitis, then came another post-sinus infection. I know I never mocked them but I never imagined I would be the one who recovered less well than they did when it was ultimately my turn.
I watched another video of Dr Paterson. He does refer alot to cfs, but I keep thinking where has he been the last 10-20yrs. Even the things they are using and theories about long covid I'm sure have been looked into in cfs. He mentions blood vessel inflammation and its role in pots etc and treatment with a statin. I'm sure there's a few of us on statins for cholesterol that haven't seen any cfs benefits. He mentioned headaches and brain fog are cause by vasodilation. If this is the case in cfs most stimulants, even things like old sudafed would have been a cure. If what he says about long covid is true than it's different to cfs, but I suspect long covid is just another post viral fatigue thing and they will be thrown on the scrap heap with the rest of us cfsme people.

He also mentions cytokine studies etc and how they can tell the difference between long covid, cfs, lyme etc etc. If my memory is correct, cytokine studies in cfs were too variable and were changing too often to be accurately used as a biomarker and wasn't able to really be used to diagnose cfs. So I wonder with Dr Patersons work if it's officially recognised and approved. There's been many many studies showing low nk function in cfs yet we can't even get it officially recognised as a biomarker to help go along with a diagnostic criteria. Another thing I've noticed is he seems adamit that those with ebv have low cd8 t cells and ebv reactivation is basically cfs. There's plenty of cfsers without ebv reactivation and also many with ebv reactivation that also have high cd8 t cell counts as well as low cd8 counts.

My BS warning is starting to go off. I hope I'm wrong but there's a few red flags. Also in the back of my head I'm thinking of those post viral treated before the 3 year mark have a good chance of improving but after 3 years things change. That leaves us up shit Creek without a paddle and left on the heap where we were.
I know my post is negative but seen these cure all type researchers that have the answers before. I'm sus on it all🤔🤪😓