Long Covid
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Does this mean anything for CFS patients? I guess we wouldn’t have the same irregularities?
Another piece on this in The Guardian--
https://www.theguardian.com/society...-antibody-discovery-raises-hope-of-blood-test
I wonder whether the antibodies would only show up in people with fairly recent infection. Would a test looking for those antibodies find anything a year or more out from initial infection? And, of course, would the test pick up anything in ME patients with no known covid infection?
https://www.theguardian.com/society...-antibody-discovery-raises-hope-of-blood-test
I wonder whether the antibodies would only show up in people with fairly recent infection. Would a test looking for those antibodies find anything a year or more out from initial infection? And, of course, would the test pick up anything in ME patients with no known covid infection?
I would love to know which antibodies they are talking about? Wouldn't it be amazing if they tied up with the recent study of Klaus Wirth and Carmen Scheibenbogen's findings of autoantibodies against the ß2AdR but I guess that is just me dreaming of a real breakthrough?
However it has to be encouraging that antibodies are even being mentioned in relation to Long Covid because so many researchers have found the possibility of antibodies playing a part in ME/CFS, at least in a subset of patients.
Pam
However it has to be encouraging that antibodies are even being mentioned in relation to Long Covid because so many researchers have found the possibility of antibodies playing a part in ME/CFS, at least in a subset of patients.
Pam
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This breakthrough has already happened so I think they are talking about other antibodies
Long Covid passes, unlike ME/CFS. Then you catch a variant. 
This twitter thread from yesterday from Dr. David Lee talks about new research findings around anti-Annexin2 antibodies. Mostly pertaining to acute covid, but he also says--"Furthermore, Annexin A2 is also expressed in the vasculature of the brain. Therefore, antagonism of Annexin A2 can cause microvascular stroke and damage to the blood-brain barrier, which would result in neuro-inflammation and long-term neurological injury."
Not sure if these are the antibodies being talked about in the Imperial findings above.
Here's the twitter thread--
Not sure if these are the antibodies being talked about in the Imperial findings above.
Here's the twitter thread--
So it takes 70 years (ME research) for Ron Davis to pioneer and see something in the blood and postulate that there are anti bodies, but it takes 6 months with focused human effort to figure out .... the same thing?
I mean I won't get over excited, it's probably great news but jees...
I mean I won't get over excited, it's probably great news but jees...
Lee also says---
"We are also misdiagnosing Long COVID, which is also characterized by lung perfusion deficits, pulmonary fibrosis, and various neurologic sequelae. Our next studies will establish whether these autoantibodies are also present among patients with persistent post-COVID symptoms."
"We are also misdiagnosing Long COVID, which is also characterized by lung perfusion deficits, pulmonary fibrosis, and various neurologic sequelae. Our next studies will establish whether these autoantibodies are also present among patients with persistent post-COVID symptoms."
I don’t want to be a party pooper but I have a really hard time seeing this will have any implications for us. I just fear long COVID and ME are two completely different things. For most people, like 80% is what I’ve read, long COVID improves over time, after a few months even. We all know for ME this is not the case.
hope to be wrong though
hope to be wrong though
I actually think it's the case for ME/CFS as well, depending on how you define 'improves over time' and such. I don't think they're different things at all (personally), but since they'll be treated as disparate disorders, we can only hope that some table scraps will fall down within our reach.
Why do you think improvement is the case for ME/CFS as well? What I read from people is that they improve a bit over a few years but not within the first year. Furthermore, I read today about research in Norway on Long COVID, and fatigue was only a symptom in 21% of cases. No taste and smell (a typical COVID symptom) in 28% cases. That tells a lot IMO
i think for most with ME, we would have improved in the beginning of our illness if we were told to rest and pace as a lot of the long haulers are being told right now (at least those in the forums who have found the long hauling community which offers great advice, advice i never had access to). at least, i know for certain i would not have become severe if i wasn’t gaslit by every doctor i saw and told to exercise, and if millions of people at once were developing my same illness and i could hear about it on the news and then find a wealth of information about it online and that it’s important to pace. i blame that solely for my worsening and am almost 100% sure i would have had a full recovery if i knew what pacing was in the beginning of my illness.
them recovering or improving at higher rates is not reason enough to suggest that they are not the same illness. long haulers have been born in to a completely different world of post viral illness and how it’s approached than we were. of course many are still gaslit by their doctors, but the majority at least have access to information online and great communities that only i could have dreamed of in the beginning of my illness. i went undiagnosed for 4 years and thought i was just insane despite trying to figure out what was wrong with my body every day on the internet
just my take at least
them recovering or improving at higher rates is not reason enough to suggest that they are not the same illness. long haulers have been born in to a completely different world of post viral illness and how it’s approached than we were. of course many are still gaslit by their doctors, but the majority at least have access to information online and great communities that only i could have dreamed of in the beginning of my illness. i went undiagnosed for 4 years and thought i was just insane despite trying to figure out what was wrong with my body every day on the internet
just my take at least
I would posit that all those percentages and numbers are meaningless - because we can't diagnose or even describe the disorder.
Improvement is the norm - for instance, many people who come down with viruses eventually get better. Some have lingering symptoms for days or months or years, but they learn to live with them. Are they ME/CFS if they experience mild PEM after activities or lingering fatigue and IBS?
Anyone who varies on the 'mild' part of the ME/CFS scale I think would kind of count as improves over time from their initial trigger. Again, we have to define these terms because we don't know the trigger(s), who is susceptible, how to diagnose, or really much of anything. We have made up criteria, that's it.
For the first five years, exercise intolerance and heat intolerance and digestive issues (new allergies and such) were my main symptoms. Weight loss followed, then more and more PEM from activities, and so on. But I was functional and varied from mild to moderate.
I thought I had it 'under control' in that range. Still debilitating, but I learned to live with it. Now I'm more on the severe end of the scale and trying to get back to the 'glory days' of moderate debilitating illness. Why do I no longer heal properly with rest? Who knows.
So I'll be a broken record - until we can define the illness properly and diagnose it accurately, any numbers or observations are a function of the yardstick used.
Improvement is the norm - for instance, many people who come down with viruses eventually get better. Some have lingering symptoms for days or months or years, but they learn to live with them. Are they ME/CFS if they experience mild PEM after activities or lingering fatigue and IBS?
Anyone who varies on the 'mild' part of the ME/CFS scale I think would kind of count as improves over time from their initial trigger. Again, we have to define these terms because we don't know the trigger(s), who is susceptible, how to diagnose, or really much of anything. We have made up criteria, that's it.
For the first five years, exercise intolerance and heat intolerance and digestive issues (new allergies and such) were my main symptoms. Weight loss followed, then more and more PEM from activities, and so on. But I was functional and varied from mild to moderate.
I thought I had it 'under control' in that range. Still debilitating, but I learned to live with it. Now I'm more on the severe end of the scale and trying to get back to the 'glory days' of moderate debilitating illness. Why do I no longer heal properly with rest? Who knows.
So I'll be a broken record - until we can define the illness properly and diagnose it accurately, any numbers or observations are a function of the yardstick used.
Yep! For me, even if I had listened to the extreme rest and pacing advice I'm pretty sure I never would've moved from moderate to severe. But pretty much all my doctors told me to push through, take a few NSAIDs for muscle pain, try to get better sleep, exercise more, etc. And here I am.
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agree.....
In my long winded case- I'll never know what happened during the 55 years I had my chronic eppstein barr syndrome- what i called it. In 1993, I had medical insurance thru my work for the first time (nobody has money for doctors)...and went to a doctor and said "I must have mononucleosus, again). ....doctor said stressed and should take a yoga class. Sent home. Of course, no tests. They never run tests. Insurance hates tests.
He never said- do you think you have Chronic Fatigue syndrome? No. So I know that exists but frankly, I do not believe I considered my chronic Eppstein state go be that. And I'm not a yuppie, either. Those people have money and wear suits.
its amazing, how many illnesses can be cured with yoga classes.
In my long winded case- I'll never know what happened during the 55 years I had my chronic eppstein barr syndrome- what i called it. In 1993, I had medical insurance thru my work for the first time (nobody has money for doctors)...and went to a doctor and said "I must have mononucleosus, again). ....doctor said stressed and should take a yoga class. Sent home. Of course, no tests. They never run tests. Insurance hates tests.
He never said- do you think you have Chronic Fatigue syndrome? No. So I know that exists but frankly, I do not believe I considered my chronic Eppstein state go be that. And I'm not a yuppie, either. Those people have money and wear suits.
its amazing, how many illnesses can be cured with yoga classes.
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its just ironic you said that- since that seems to be the crux of the matter- improvement is not the norm in our case, and they should figure out why?
so people just assume - bodies make corrections, repair and fix things, OR you have a famous disease with a name and many specilialists eager to help you.
so people just assume - bodies make corrections, repair and fix things, OR you have a famous disease with a name and many specilialists eager to help you.
Could this news be related to this? :
"Chronic post-COVID-19 syndrome and chronic fatigue syndrome: Is there a role for extracorporeal apheresis?"
https://www.nature.com/articles/s41380-021-01148-4
(I can't see the reference supporting that affirmation).
"Chronic post-COVID-19 syndrome and chronic fatigue syndrome: Is there a role for extracorporeal apheresis?"
https://www.nature.com/articles/s41380-021-01148-4
(I can't see the reference supporting that affirmation).
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seems likely....and how do we get this treatment they discuss?
extracorporeal apheresis (INUSpherese)
extracorporeal apheresis (INUSpherese)