Interview with Yale's Akiko Iwasaki

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8 ай бұрын

Akiko Iwasaki, a professor of immunobiology at the Yale School of Medicine, is a leading investigator into long Covid and has recently been designated to lead a new Center for Infection & Immunity. She was elected to the National Academy of Sciences in 2018, the National Academy of Medicine in 2019, to and the American Academy of Arts and Sciences in 2021. We spoke earlier today about the possible root causes of long Covid, her concerns about claims that it is psychosomatic, and the importance of learning from patients.

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@mamaslomba 7 ай бұрын

Thank you so much for addressing Long CoVid as NOT being a psychosomatic disorder. You are 100% correct that it is not - I've never had a panic attack in my life before getting CoVid back in January 2022 nor did I suffer from anxiety. Since getting CoVid both panic attacks and anxiety (that feel physical like a lion is chasing me) are sadly regular things I deal with now. My life was as close to perfect as it could be before getting infected with Covid. I've also developed Mast Cell Activation Syndrome from CoVid. I never had an allergy or a problem with histamine in my life until CoVid. Thank you Doctors for your dedication to finding answers for us who are still suffering from Long CoVid.

@wildgardens 8 ай бұрын

Great interview! Our community is lucky to have you both fighting for us!

@slovokia 8 ай бұрын

BTW Even if more complicated immunological tests were made available to general practice physicians, without further training they would not have the knowledge to interpret the results properly and would likely discount the importance of any anomalous results.

@RikSolstice 8 ай бұрын

Great to see work done on our diseases. Thanks to both.

@slovokia 8 ай бұрын

Before I got sick with ME/CFS I worked as a programmer. I have often wondered whether getting ME/CFS is analogous to having a software bug triggered by a unique set of conditions. The human body is a very complex biochemical machine - probably many times more complex than a jumbo jet or a nuclear submarine. The field of medicine will probably need to change a lot to properly diagnose and treat different ME/CFS subgroups. Unfortunately ME/CFS does not fit well into any existing specializations of medicine.

@a_pomerleau 8 ай бұрын

Yes, and that bug is likely a virus! (+/- 75% of onsets due to infection)

@slovokia 8 ай бұрын

@@a_pomerleau I am afraid you are missing my point. In the context of software, a bug is a latent flaw in the logic of a program that is only triggered by the conditions that logic was meant to handle. In my analogy in the context of the human body (a complex biochemical machine) a bug is a latent flaw in the biochemical machinery that is triggered when the system encounters a particular stressor - for example an infection. The infection just triggers the flaw, it doesn’t sustain the pathological response of the system that stems from the flaw itself.

@TL-ch1xd 8 ай бұрын

Sounds possible. Here in Sweden at the ME-center (which unfortunately is closing down due to the never ending governmental cut downs) they say that it’s quite common for people diagnosed with ME also to have hypermobile EDS, POTS, dysautonomia and Mast-cell activation.

@MP-uo6qd 7 ай бұрын

i had recovered from my virus for two months before I came down with PVFS (ME)@@a_pomerleau

@dexterdoodle7882 7 ай бұрын

What is the treatment? I was diagnosed with ME/CFS in 2012. My health has deteriorated and I have not been able to find any effective help. I was active, healthy and worked as an Occupational Therapist. Infectious disease said its post viral and nothing we can do or deal with.

@Gina-dn6xm 5 ай бұрын

Unfortunately long covid has been a gift to people that have been suffering with chronic lyme and ME/CFS. Now we are being somewhat believed that something is just not right with our body.

@ceceliablair9177 7 ай бұрын

Smart of her to be working with patient groups respectfully, to learn from the real experts. Scientists’ tracking success depends upon starting with patient reports and patient evidence.

@MP-uo6qd 7 ай бұрын

what biomarkers for ME/CFS???????????????????????????????????????????????????????????????

@traianliviudanciu8665 5 ай бұрын

Did we know at what tissue temperature did SARS COV2 better replicate Why ? Because at TWiV Nr 659 at min29 virologist Christian Drosten suggest that SARS COV2 better replicate at very low tissue temperature.

@traianliviudanciu8665 5 ай бұрын

If cryoglobuline occur after SARS COV2 infection ,perifereal microcirculation can be damaged (?)

@traianliviudanciu8665 5 ай бұрын

May be high body temperature protect against SARS COV2 replication ?

@lindsayblest 8 ай бұрын

What are the immunological profiles or makers that she speaks of that allows for 94% accuracy in predicting LC? Does she say this anywhere? On twitter etc

@frog252 8 ай бұрын

Apology for no link. and answer to your technical question .. for background Akiko and a very international group of researchers work with an association ('?) of self-diagnosed LC sufferers , and my understanding is that 94% of a sample tested with more advanced methods confirmed LC abnormalities . That doesn't mean that the other 4% were making it up 😊 ! Altogether it is quite a step forward against the far too prevalent medical disease of psychologising LC ME'CFS ...

@frog252 8 ай бұрын

" PATIENT-LED COMMUNITIES !"

@MP-uo6qd 7 ай бұрын

My EBV and CMV were not reactivated when I got ME/CFS in 1992. So, it can not be anything to do with these viruses.

@teddybearroosevelt1847 6 ай бұрын

How do you know they were not activated? The biomarker are deeply flawed and especially things taking place far away from the arteries and veins (e.g., in the mitochondria) may very well not get picked up on by blood tests. Also, even if these were not things that played a role in your pathogenesis, it doesn’t mean it doesn’t play a role in that of other people.

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@ePatientDave 8 ай бұрын

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@dexterdoodle7882 7 ай бұрын

hat