News about Long Covid including its relationship to ME/CFS 2020 to 2021

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Kalliope said:
I haven't listened to this myself, but on Twitter someone appears to have recommended LP (tweet now unavailable) which dr. Jarvis promptly rejected, so that's something.

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Ha! That reminds me of a few weeks ago, Henrik Vogt commented somewhere on Reddit promoting LP and his pyramid scheme, got completely shut down in response, deleted the comment and I think even deleted his account.

It's been a few years of people like Landmark, Parker and other similar quacks being trotted out to GP conferences and such, celebrated by medical authorities in some countries, given free media platforms/advertisement for their business. Those people have been operating in an insulated bubble where criticism of their woo has been effectively blocked by only listening to what's in the bubble, where no one with ME or who knows about ME is involved.

It's hard to step out of a delusion and see how unpopular it actually is in real life, after being given awards and shiny gold stars by people who are supposed to know better than promote woo. Like stepping out of a cult.
 
Many diseases, such as #MyalgicEncephalomyelitis are over active immune responses from viral infections.
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Has this, in fact, actually been, established, as a fact?

Coz it's not the same thing as saying that a virus triggered responses that led to ME.

It's stating, as known fact, that ME IS an overactive immune response.

Which, you'd think' would be dead easy to detect.

And it hasn't been AFAIK.
 
Wonko said:
Has this, in fact, actually been, established, as a fact?
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I don't think it has been established as over active immune responses, but it is less clear about antiviral responses. In fact there is data showing underactive immune response. Some things are elevated in the research, like low molecular weight RNaseL. There seems to be a differential response in different parts of the immune system, with possibly an increase in defence versus intracellular pathogens, including viruses, and a decrease in other areas. This potentially includes non-immune responses such as mitochondrial suppression. However its not consistent, just common.

We also have limited understanding of what ME is doing to both B cells and T cells. We need better science.

This is why I cannot predict what the Covid-19 impact on ME will be. We have both immune weaknesses and immune enhancement. Its a mishmash. So much of it is concluded by inference as well, we lack solid data. Immune enhancement might also increase the impact of a virus, or do so in some cases but not all. Its not super clear.

However I am prepared to say there is some indication of enhanced antiviral defence, in that many of the changes in ME should increase defence against viruses. However this might mean we are even more vulnerable, as the immune system might double down on ME to stop the virus. Its all so much speculation, the data we get from following ME patients with Covid-19 might tell us a lot, and help us to protect future and current ME patients.
 
When it comes to the aftermath of Covid there might be two things, I think:

One maybe specifically SarsCov2 related, possibly damage in lungs, heart or nervous system and maybe post viral fatigue or ME like symptoms. There isnt enough data here yet.

The other thing maybe post intensive care related. Being on a ventilator takes a huge toll on the body (heavy sedation to be put in a coma, extensive antibiotics in case of bacterial pneumonia on top, muscle wasting etc.). It's also extremely traumatizing (life threatening illness, monotonous and "surreal" environment in an ICU ward, delirium and physical restraining etc.). Here, there already is a lot of data.

For them I think it's too soon to jump to conclusions when they dont go "back to normal" even weeks after being back home.
 
Jaybee00 said:
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There could have been so much to offer those people if the science had not been derailed in favor of magical thinking woo. Right now all those people are effectively stuck in the same place as we are, having to start from scratch in figuring it out, most of them on their own. As individuals who suffered from a specific viral infection and did not recover. Same as all the others who ended up with chronic symptoms from other infections before, each treated as oddities, individual trees that do not make a forest, just tightly bunched trees, somehow considered different because of tiny differences in their branches, roots and rings.

I hope someone somewhere makes those connections and gets mad about it, someone who can do something about it anyway. Otherwise the same mistakes are almost guaranteed to be repeated exactly the same as all the other identical iterations of the eversame mistake. Likely that someone will find the prior SARS research showing the same. Then all the others. All with that weird fluctuating pattern, in an overall pattern that could not be any more obvious. It's going to be such a mess because of all the confusion and disinformation that's been pushed through.

Sure would have been great had research been accelerated, though. The best time was 30 years ago but any second now would become the 2nd best time, whichever one marks the shift towards a significant well-funded effort and complete paradigm shift anyway.

I hate that it's likely what will tip the scale, but this virus could not have been more tailor-made to help us. Especially once we start getting a picture of how many medical professionals are unable to return to work, right as they are badly needed. Reality truly does have a way of asserting itself.
 
Kalliope said:


(..could someone please remind me who dr. Hammond is? )
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Looking at the comments, I don't think it went as he hoped for. He doesn't appear to be as dogmatic as Crawley but obviously he has the behavioral model in mind, especially the ridiculous fear thing and a clear misunderstanding of how informed consent applies when gaslighting vulnerable children from a position of statutory authority.

But most of the comments are variations of "oh yes we should totally do something but definitely not that thing because it's a complete failure". The thing that he likely hoped to focus on. Bit like bringing home a surprise, asking the kids to guess the surprise and although there's no consensus on what would be a good surprise, there's definitely consensus about the thing that nobody wants.

Honestly, kind of a big test of whether BPS people sincerely want to help, or just badly want the ideology to be true. Mostly silence from Hammond so far to the replies.

Let's wait and see: :emoji_popcorn:.
 
Leila said:
When it comes to the aftermath of Covid there might be two things, I think:

One maybe specifically SarsCov2 related, possibly damage in lungs, heart or nervous system and maybe post viral fatigue or ME like symptoms. There isnt enough data here yet.

The other thing maybe post intensive care related. Being on a ventilator takes a huge toll on the body (heavy sedation to be put in a coma, extensive antibiotics in case of bacterial pneumonia on top, muscle wasting etc.). It's also extremely traumatizing (life threatening illness, monotonous and "surreal" environment in an ICU ward, delirium and physical restraining etc.). Here, there already is a lot of data.

For them I think it's too soon to jump to conclusions when they dont go "back to normal" even weeks after being back home.
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I completely agree with this sentiment. Most importantly because we can't make assumptions based on a little data in a short space of time. But it also isn't helpful to either patient group to assume COVID related problems are the same or even similar to me/cfs. What if their fatigue is less severe and there's no PEM but the media catches on to it and it looks like they can recover easier? What if they all think they have me/cfs and have to deal with that burden when it might not be true?

The best thing is to hope for some high quality follow-up studies looking at good me/cfs criteria with doctors who understand this. I think this will happen but it might take well over a year or two to get done.
 
dreampop said:
I completely agree with this sentiment. Most importantly because we can't make assumptions based on a little data in a short space of time. But it also isn't helpful to either patient group to assume COVID related problems are the same or even similar to me/cfs. What if their fatigue is less severe and there's no PEM but the media catches on to it and it looks like they can recover easier? What if they all think they have me/cfs and have to deal with that burden when it might not be true?

The best thing is to hope for some high quality follow-up studies looking at good me/cfs criteria with doctors who understand this. I think this will happen but it might take well over a year or two to get done.
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There is this whole field of "post intensive care syndrome" (=PICS) that, on a very superficial level, might look a little like ME or rather CFS without PENE:

"Brain (cognitive) symptoms:

  • Decreased memory, thinking problems
  • Difficulty talking
  • Forgetfulness
  • Poor concentration
  • Trouble organizing and problem solving
Emotional symptoms:
Physical symptoms:
  • Muscle weakness
  • Fatigue
  • Decreased mobility
  • Difficulty breathing
  • Insomnia"
So I hope whoever is studying post intensive care Covid19 patients doesn't blur both diagnoses or blend either of them or both into a BPS soup that in the end doesn't help anyone.

I don't want to sound pessimistic but I don't see why - even IF many post Covid patients develop "true" ME - that wouldn't again be framed as a solely mental disorder. Isn't a pandemic and the collective anxiety around it a perfect playground for a "mass hysteria" approach?
 
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