USA: Mount Sinai PACS clinic and Dr Putrino

That makes sense - I suppose where I'd disagree is on the idea that Putrino/Iwasaki/Proal (and the Long Covid Research Collaborative) represent less promising research. Particularly when you compare them to something like RECOVER, which has received far more funding, and has achieved far less. I'm also not sure the funding they've received is zero-sum - they almost certainly weren't competing with other Long Covid or ME/CFS researchers for the funding they've received considering it's come from private donors rather than regular competitive NIH funding mechanisms.

 

This is a small point, but I don't think the studies Putrino/Iwasaki and the Long Covid Research Collaborative have produced are biobabble, but the twitter threads Proal and Putrino have posted recently may fall into that category. The twitter threads aren't representative of their quite credible published research, though clearly the recent twitter threads overlap with some of the worst tendencies on Long Covid twitter - that awful LCAP group.

 

I first came across her 10-15 years ago when she thought hidden bacteria cause ME/CFS and that the cure is taking minocycline for years and avoiding vitamin D.

 

So, Iwasaki, Putrino, and Proal are v distinct figures - they collaborate on some studies, but have their own separate research initiatives. I've heard that some of Proal's history is problematic, but my understanding is that her role now more lies in spearheading and organising the Long Covid Research Collaborative, which is a group of about 15-20 serious scientists doing about 15 different studies on viral persistence. The LCRC is an important initiative with some v credible figures involved. Also as Trish said above, I'm not really sure we can confidently say what hypotheses are most promising/worth pursuing - we need research into many different areas, so Proal is definitely doing some v worthwhile work nowadays

 

God it's an awful, long story - I'll give a brief version. Basically, there's this small corner of Long Covid twitter that's turned on people with ME and the broader mainstream Long Covid movement in incredibly toxic ways. It's mostly a group of very angry and bitter men - a recent initiative by mainstream activists ended in a key organiser getting doxxed (her address posted publicly) alongside receiving misogynistic abuse. They're incredibly doctrinaire - they believe that viral persistence is the be all and end all of Long Covid, and that the illness is much more like AIDS than ME/CFS. They oppose any research that doesn't fit their narrow worldview. It's torn Long Covid twitter apart, it's been horrible to watch (from afar, I've been largely bedbound since trying HBOT about 2 years ago, so I try to avoid twitter nowadays!)

 

Agreed.

Or bacteria as in your later post (and the mino and Vit D you referenced.)

The thing is, there is conflicting evidence sometimes. Sometimes, too, none of the evidence on either side is really compelling. It becomes more of a camp thing. Cliques from which beliefs and even studies are spawned. These can be very believable and enticing. I use to be sure about shit I no longer am. I'm no longer quite as certain, quite as sure about what is accurate, what parts are BS, what is mere opinion or hype, who has an axe to grind or mortgage to pay or legacy to prop.

It seems to me science over the last half century has far too often been co-opted by special interest groups. It would be nice if science dominates in this Putrino enterprise. But I'd like to read the fine print better this time around.

 

https://twitter.com/user/status/1740471161711120609


Putrino has specifically reduced his understanding of Long Covid to two possibilities - viral persistence and/or immune over-reactivity… and expresses certainty that there are not other possibilities. I’m not clear what the second means. There are multiple immune systems.

https://twitter.com/user/status/1740473896393232823


I dunno I support trialing things. Do I think he or Proal or any other researchers are as central or important as they present themselves to be? Why no, I do not! Particularly because I find his discussion of immunity less detailed or informed than so many others

 

Post copied from the thread in memory of Beth Mazur

Reading @B_V s beautiful obituary for Beth prompted this thread by Putrino lab in twitter .

We could do with more righteous anger like this when we lose so many amazing people
Long thread which is copy pasted below link

https://twitter.com/user/status/1747246020893843817


You know what, #medtwitter? Fair warning: I’m coming into the week pretty pissed off. I spent the MLK day weekend catching up on reading and thinking about the experiences of people with #LongCovid, chronic #lyme, #MECFS and other PAIS. I finally read Brian Vastag’s touching 1/

obituary for Beth Mazur and I just need to ask: how many more? How many more stories do you need of vibrant, exceptional people being cut down in their prime by these illnesses to finally act? How can you read what @meghanor and @danaparish articulate about chronic #lyme and 2/

all they have done with their lives before and since, yet continue to perpetuate a myth that this illness is made up? How can you read @julierehnyer’s account of fighting for her life her sheer will to live a full life and come to the conclusion that pw #MECFS are simply 3/

malingering? How many more years will you continue to repackage “conversion disorder” in increasingly opaque language with the same, frankly, pathetic science backing it and expect people to swallow it? More importantly, how long will you continue to dismiss the words of the 4/

people coming to you for help, ignore the scientific and clinical evidence showing severe immune dysfunction, neurological damage, vascular and metabolic disease, organ dysfunction and continue to consider GET and CBT to be the only tools in your toolkit? For real? I'm beyond 5/

disgusted. In short, how can you view so much suffering every day and have the casual cruelty, the nerve even, to say "you're just deconditioned" or "the brain can have a powerful effect on the body” as though that has any utility in explaining what is happening to these folks 6/


@NIH - HOW do you have the audacity to fund even a single exercise therapy/CBT trial for #LongCovid, let alone a whole mess of them and expect to be taken seriously by a patient population that has such large representation from former athletes and high performers? Why are you 7/

allowing committee members to even entertain this? The shameful history of the CBT/GET research community for falsifying data, such as in the PACE trial, alone should be enough to make you want to distance yourself from this whole line of research and yet you continue to 8/

throw good money after bad. Why? I know, I know: “because it is low cost, highly scalable and relatively low risk (if you know nothing about PEM), and although it is *slightly* controversial (see above re: blatantly falsified data) it deserves deeper investigation.” Really? 9/

Shame on you, our population deserves better. What about you @CDCgov, and @CDCDirector? Care to take some steps to encourage people to, you know, not get infected by a devastating pathogen that can cause lifelong disability? Masks, free tests, HEPA filters, clean air? Any of 10/

these ultra basic things ringing a bell? Shame on you. You are entrusted with the solemn responsibility of safeguarding the most important resource your country has - the health of the population and you are squandering it and avoid hard decisions in the name of political 11/


expediency, not science. To folks with #LongCovid, chronic #lyme, #MECFS and other PAIS who follow. I’m sorry for the rage. I’m usually better at regulating and this morning it just all got away from me. I’ll suck it up tomorrow. Everyone else, as always: see you in hell. /end

 

Podcast interview with Dana Parish (1h 24m). Available at either —

https://www.bayarealyme.org/blog/lo...d-about-chronic-illness-from-the-front-lines/


with video listed on this page.

Lots of initial talk about viral persistence. Highlight on FND from 53 minutes.

 

I'm not sure it helps much to misrepresent the psychosomatic view as a fringe thing. It's THE thing wherever the biology isn't understood. Fringe players don't dominate an entire profession's view. The establishment psychosomatic view is basically the Empire, but in a scenario where the rebel alliance basically consists of Chewbacca and 3 Ewoks. That's the scale of the imbalance here.

It never pays to underestimate an opponent. Same with the terrible state of biopsychosocial research on ME. It's not unique to us, this scandalous malfeasance is establishment medicine, the models, the methodologies, the whole thing. It's what evidence-based medicine really is. Being a garbage in garbage out process, the rest is simply a bit better where there are good bits that get in, but the process itself is just as disastrous.

 

psychosomatic ideology will always be in favour because of the greed and corruption in society until the legal case for refusing insurance pay outs for conditions regarded as mental health is challenged and overturned.

 

Tweet from David Putrino advising those with long covid to ignore CDC advice on covid because it's not based on science. Am not on Twitter so have tried to copy tweet. Could anyone post full tweet, and does anyone know what advice he's referring to?

edit: tweet failed to post so have removed it

 

@PutrinoLab on Twitter:
"Tragic to say this out loud, but here it is:
As a #LongCOVID researcher, I strongly urge the public to ignore recent @CDCgov guidance and input from @CDCDirector on the topic of #COVID. It is NOT based on consensus science and it has NOT been designed to protect you. Disgraceful"

https://twitter.com/user/status/1763923845512151509

 

The advice he's referring to is that CDC has shortened the recommended isolation period for individuals who test positive for COVID. Formerly five days, now only 24 hours.

"The recommendations suggest returning to normal activities when, for at least 24 hours, symptoms are improving overall, and if a fever was present, it has been gone without use of a fever-reducing medication."

https://www.cdc.gov/media/releases/2024/p0301-respiratory-virus.html

 

Thanks @mango.

There are a lot of angry comments under the tweet and also a reference to the NIH study linking to Science for ME for analysis.

There is no sign that the CDC recognises what serious consequences can follow a bout of covid.

David Putrino has nailed his colours to the mast

 

Yes, lots of angry and sad and frustrated comments all over social media, not only from researchers and activists but people in general I'd say. Especially disabled and immunocompromised people, as well as pwLC.

Todd Davenport of Workwell has been tweeting about it too, including a retweet of this op-ed:

California’s 24-hour isolation recommendation will lead to more long COVID
https://www.sacbee.com/opinion/op-ed/article284932672.html

julialmv on Twitter:
"Our op-ed below about COVID isolation periods in CA now applies to the whole US.

I'm shocked & saddened to see this wishful thinking-based guidance that will lead to further death & disability of already marginalized folks.

I expect better public health policy from the @CDCgov."

 

It's strange watching this unfold in the UK, where for like 1-2 years there has been no guidance apart from don't mention covid it's over lalalalalalaa.

I basically stopped attending medical appointments when people stopped masking.