COFFI - The international collaborative on fatigue following infection

[InitialConditions]

I have added a community note to Garner's latest post promoting the COFFI YouTube video.

Please rate accordingly!

https://twitter.com/user/status/1862123682966941885

 

[MrMagoo]

Is this the big research he was going on about the other week?Please someone ask him why PEM is delayed?

 

[InitialConditions]

Is this the big research he was going on about the other week?Please someone ask him why PEM is delayed?

This is probably what he was referring to on radio.

 

[NelliePledge]

I have added a community note to Garner's latest post promoting the COFFI YouTube video.

Please rate accordingly!

https://twitter.com/user/status/1862123682966941885

What does your note say. It doesn’t show from the link for me as I’m non Xitter

 

[InitialConditions]

What does your note say. It doesn’t show from the link for me as I’m non Xitter

 

[NelliePledge]

Nice one @InitialConditions

 

[MrMagoo]

Is he still being silenced then?
You’d think they would want to give samples of blood to show Chris Ponting, it would be fascinating to see if they have the same patterns within as MECFS patients.

 

[Snow Leopard]

We are told that a pathological state is explained by some normal regulatory process - like Pavlovian conditioning or predictive coding.

The most frustrating part is when scientists and medical doctors invoke predictive coding to explain sensations where there is no evidence for such predictive coding in humans. These people fail to understand that predictive coding itself happens for a reason, namely it is required when real-time prediction is required, such as for proprioceptive systems (including eye tracking), or speech perception related attention.

Pain and fatigue signalling does not require real time prediction.

It is exactly the same as the 'molecular mimicry' theory in immunology. If molecular mimicry is explained by normal immune mechanisms why does it only occur very occasionally - less than once in a lifetime on average?

It is strange why so many believe something with no evience.

Fact is that molecular mimicry has been shown to lead to T-cell tolerance of foreign antigens. Specifically, mimicry of Campylobacter Jejuni LPS to gangliosides leads to immunological tolerance of CJ LPS - which is the opposite of the putative mechanism for CJ associated Guillain Barre Syndrome. https://journals.asm.org/doi/full/10.1128/iai.70.9.5008-5018.2002

 

[Dolphin]

Posted online on April 3:


COFFI Consumer-Researcher Online Seminar IV
Where lived experience and science meet
Persistent symptoms after an infection: what is going on in the brain?

Persistent symptoms are part of post-viral fatigue, ME/CFS, and the post-covid condition. This seminar considers the wide variety of symptoms and problems encountered by patients, looks at the overall explanation from physiological stress response, and then considers how approaches may help people with symptoms.

COFFI is a global research collaborative dedicated to research to help explain, treat, and manage fatigue and persistent somatic symptoms following infection. The COFFI Consumer Advisory Group advises on COFFI’s research portfolio and promotes constructive public narrative between patients, researchers, and practitioners. These groups must work together to help people manage and recover from these conditions

 

[MSEsperanza]

COFFI Consumer-Researcher Online Seminar IV
Where lived experience and science meet

"Where lived experience and science meet" -- wait, what was the motto of S4ME again?

That coffi party is so disingenuous, in so many ways.

(The S4ME slogan is better, of course.)