USA: Mount Sinai PACS clinic and Dr Putrino

During the early years I was not given a M.E diagnosis by an M.E specialist with over 20 yrs experience. Yes, I had a sudden viral onset. I was dx as atypical b/c I didn't experience PEM and didn't fit the normal pattern during that time period.

 

If he were arguing this was the only reason, I could understand it. If someone developed ME/CFS symptoms after a Covid infection, it would be irrational to exclude them from trials on groups of patients who developed ME/CFS symptoms after a Covid infection, but who don't happen to have that name typed on their health record.

But that doesn't seem to be what he's arguing, so I can't really follow the logic.


* Text posted as separate tweets organised into a single block for ease of reading.

 

I missed this bit from looking at his Twitter thread earlier today. This follows directly on from the quotes I have posted above

"made in response to a terrible recent publication that basically asked the question: is #LongCOVID just fibromyalgia? From our data of >2000 LC patients, about 70% report chronic pain since their SARS-CoV-2 infection, and for about 50% of that 70% the pain is non- neuropathic 7/"

"in nature, meaning that, were we so inclined, our team could blanket diagnose about 35% of our #LongCOVID patients with meeting diagnostic criteria for fibromyalgia. We won’t do that. Similarly, many of our patients, due to PEM, POTS and muscle weakness could meet diagnostic 8/"

"criteria for FND. If you have been following me this far, you know that we won’t make that diagnosis. I could tell you story after story: #LongCOVID patients diagnosed with generalized anxiety disorder *because they met diagnostic criteria* when really they had POTS. Did the 9/"

Let me quote a part of that more clearly, "Similarly, many of our patients, due to PEM, POTS and muscle weakness could meet diagnostic criteria for FND". I am aware that the FNDers would like to absorb ME/CFS into their personal domain, but in what world currently would PEM qualify someone as having FND????

So he won't automatically diagnosis pwLC, which is a syndromic diagnosis and is fine, with ME/CFS if they meet the criteria, because that is a syndromic diagnosis and therefore is bad, and he thinks PEM is part of the diagnostic criteria for FND. And he's doing this to protect patients....

 

NOt that the rest isn't great - this is just the bit I've zero-d in on right now.

But I think at 26mins in, he's done well at answering the question and getting some really good phrases (including ''willful ignorance'') in regarding those who ignore drop-out rates whilst saying they understand PEM in a nod and 'of course we must be aware' sense.

 

My fault for scanning and not reading the whole thing carefully. He did explain a bit today, but I've removed the tweet.

 

OK, this has been unhelpfully occupying headspace for me so I'll say this and then hopefully be able to move on to more helpful and positive things.

I think more than one thing can be true.

I think David Putrino is working in a way that he perceives to be in the best interest for his patients, within the medical system that he operates in. This is obviously a good thing to do.

I also think that this way is predicated on a perception that an ME/CFS diagnosis is more problematic and inferior to a Long Covid one, and that one of the consequences of operating in this way will lead to a 'disappearance' of ME/CFS cases that would otherwise have been legitimately diagnosed. This, in my biased opinion, is not a good thing.

I also think that his understanding of what PEM is must be different to my understanding of what PEM is. Again, in my biased opinion, this is not a good thing.

And that's it. I don't personally have energy or time to reach out to him, to try to convince him of my point of view, so I'll now try to move on.

 

https://twitter.com/user/status/1724408008556360176


Both in my DMs and publicly, @putrinolab has offered to hold dialogue about the tweet threads and their implications. I think this needs to be held specifically with the MECFS community and its leaders, and I hope it happens. @MEActNet (I'm not a leader, but I'd attend.) 1/

 

https://twitter.com/user/status/1738860349883826601


Amy Proal now runs the Putrino twitter account and I am beyond surprised it now talks exclusively about Viral Persistence (not). I wonder what my ME/CFS is caused by since I got here via a vaccine?

 

The following tweet denies this
"Hi Stephen, I still run my own social media despite being privileged to work with Dr Proal. What I meant in this comment the Christoph is that in folks with LC (and now in vaccine injury as we have been studying pw vaccine injury with Dr Iwasaki) is we see immune profiles 1/"

 

Andy, did you read that as him suggesting PEM was a sign of FND? In my view, he was saying there that FND people interpret basically every symptom and manifestation of fatigue, dizziness, etc. as a sign of FND, as in: "People have relapses after minimal exertion? Must be a positive clinical sign of FND." I don't think it's accurate to interpret what he said there as representing anything about what he himself thinks PEM is.

I agree he has said some things that are confusing and that further discussion would be useful.

 

Yep.

 

I’d love to know what people think of Putrino’s latest thread. Reducing it all to viral persistence (or persistent pathogens more generally) and an overactive immune response seems a little premature to me, though these are clearly important hypotheses to explore. I wish we could see a dialogue between the newer players in Long Covid research and Ron Davis.

https://twitter.com/user/status/1740356301115580871

 

I am not sure any of these people have anything new to contribute, @RaviHVJ.
Doing science by Twitter/X is superfluous if you have something real to say.

 

Putrino says: "If you give someone with no persisting pathogens, but an overactive immune system that is producing antibodies for a particular virus, an antiviral that boosts immune function, they will get sicker because the last thing they need is more immune activity."

I think the antivirals that Putrino is talking about work by directly inhibiting viral replication not boosting the immune system, so this seems off. By what mechanism would such antivirals increase immune activity and thus make people sicker? Seems to me that we need more than anecdotal evidence and hand-waving explanations when it comes to the effects of antivirals.

 

More than a little premature if we consider the fact that many people develop ME/CFS without any apparent viral/infectious trigger.

 

This is simply nonsense.

 

The way he talks you'd think that 'viral persistence'/over active immune system were relatively new ideas. People have been waffling on about it for decades

 

So many of these LC newcomers reinventing the wheel. It’s quite annoying watching the same nonsense from 40 years ago being fed to a new cohort of people.