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

I understand her. Chronic illness can be a hard relity to adjust to. It's fine if she needs some positivity and uplifting things in her life. There is a dark side to positivity too when it loses touch with reality and becomes exploitation of the vulnerable (done perhaps by people so full of positivity that they do not realize what it is they are doing).

 

did she write about brain retraining programs? I didn't see that in the article. I'd never heard of "pacing coaches" before.

 

I believe that might be a reference to her sharing the Heal with Liz YouTube channel, which I believe has videos on what we here would consider dubious ideas of how to recover from ME.

I have sympathy for her, she would seem to be well meaning, but I can also understand why certain parts of her Twitter thread might not be received well by some in the patient community.

 

see
https://www.s4me.info/threads/inter...me-cfs-advocate-liz-carlson-also-talks.22674/

also
https://www.s4me.info/threads/video...-for-more-research-funding.22256/#post-371520

 

@dave30th she mentioned a pacing coach who turns out to also sell post viral fatigue recovery courses. I think it's predatory to exploit the intense fear of patients who don't know if they'll recover.

 

Ah, I see--thanks for the explanation. I didn't realize that just from the article. It's the first I'd heard about the concept of a "pacing coach." I guess it would be good to have a support person but should learning to pace really require paying someone to help you?

 

Interesting. Only question is what are the dogs detecting. 50% positive identification of LC with 0% false positive from controls.

Now seriously why don't we still have a damn electronic nose? It's amazing how advanced optics have progressed but for scents? Dogs are still the highest level of tech.

Screening for SARS-CoV-2 persistence in Long COVID patients using sniffer dogs and scents from axillary sweats samples
https://www.medrxiv.org/content/10.1101/2022.01.11.21268036v1

Objectives: Dogs can be trained to identify several substances not detected by humans, corresponding to specific volatile organic compounds (VOCs). The presence of VOCs, triggered by SARS-CoV-2 infection, was tested in sweat from Long COVID patients.

Patients and methods: An axillary sweat sample of Long COVID patients and of COVID-19 negative, asymptomatic individuals was taken at home to avoid any hospital contact. Swabs were randomly placed in olfaction detection cones, and the material sniffed by at least 2 trained dogs.

Results: Forty-five Long COVID patients, mean age 45 (6-71), 73.3% female, with prolonged symptoms evolving for a mean of 15.2 months (5-22) were tested. Dogs discriminated in a positive way 23/45 (51.1%) Long COVID patients versus 0/188 (0%) control individuals (p<.0001).

Conclusion:This study suggests the persistence of a viral infection in some Long COVID patients and the possibility of providing a simple, highly sensitive, non-invasive test to detect viral presence, during acute and extended phases of COVID-19.​

 

I was just reading this. The authors think the dogs are detecting active infection.

 

https://twitter.com/user/status/1481333227415506944


https://twitter.com/user/status/1481344442158227460

 

I would guess that most pwME would agree that the theory of how to pace is pretty straightforward but that sticking within the necessary limits can be surprisingly hard to do, so some people might think, accurately or not, that if they had someone who could help them keep on track then they might be more successful with it.

 

Noting the 50% sensitivity and 0% false negative rate, I wonder whether they are detecting certain changes in metabolism (adaptations to mitochondrial stress etc). I'm much less keen on the idea of active viral persistence in the majority of LC.

 

Is anyone else concerned that she deleted her account or have any insight as to why she did it? I didn't see how it went. I don't want us all to be portrayed as negative people who didn't want to get well and ran helpful journalists off twitter.

 

Quiz of the day from a Physician/ Entrepreneur:
https://twitter.com/user/status/1481367410691100673

 

I honestly hope they won't ruin any kid's life with some surgery. Or even worse, series of surgeries.

 

Who cares, 50% sensitivity is poor and unlikely to replicate. Most of these dog sniffer studies are just hype.

The claim it was detecting active infection is unlikely, as:

 

https://twitter.com/user/status/1479387008296493061

 

There is no reason to think all long haulers are the same, it could be catching one subset. The only reason this is interesting is precisely in figuring out what's special about this 51%, which is very significant considering the 0 false positives.

For physicians who have learned enough 51% is low, however taking medicine as a whole this is far higher than the current success rate of random%.

 

Very unlikely to be the whole thing, but there's a good chance that Wessely's ridiculous quip about "less T-cells, more therapy" will go down as one of the most embarrassing things said in the history of medicine. For which there is really strong competition, it must be pointed out.

So the innate immune system is activated, but the adaptive immune system is struggling. Boy, I don't know, it really seems like there's something about this whole germ theory of disease and that it's far more complicated than the standard narrative that has lead to decades of smug faces derping out "what, you think a virus did this to you?". Yup, it's kind of what they do, and one day medicine will actually master object permanence.

https://twitter.com/user/status/1481721174921039880

 

what was this?

 

I've seen this mentioned many times and it's clear that there are instructions to that effect in many places, it's not random. There is a clear taboo over even mentioning any of this, there is clearly information suppression.

https://twitter.com/user/status/1481670227372949508