Putrino's statement courtesy of Nitter for those wanting to read w/o a Twitter account:
@PutrinoLabs
This is an issue that has been coming up today from various folks and I want to address it. As I said when we launched the manual, this is the beginning of a conversation, not the "final word". I also want to say that reading it with 20/20 hindsight, I understand why this 1/
language has been inflammatory to members of the community, because it the feedback I have received is that it "feels like we're trying to say that exercise is curative even with PEM, without saying the word exercise". I regret that this was the impression that our wording 2/
gave. In previous communication and education we have been quite clear that IF rehabilitation protocols are being attempted (and not all of our patients with PEM are considered suitable for rehabilitation), then PEM is the factor that governs all aspects of care delivery, from 3/
rehab choices even out to location of care (home-based care versus location-based care). In addition, when we talk about symptom-titrated rehab or symptom-titrated movement, we are NOT talking about exercise and we are not trying to "dog whistle" about exercise. Our position 4/
on exercise (physical activity with the intention of increasing cardiovascular fitness) and PEM is clear: exercise is not a treatment for PEM. However, when we're talking about symptom-titrated rehabilitation, we're talking about things like breathwork, gentle calf pumps to 5/
prevent DVT and autonomic rehabilitation in people who are eligible and able. We introduced "symptom-titrated" to these activities because we wanted to honor the fact that even things that might be considered by a clinician as non-exertional like breathwork can, in fact, 6/
trigger PEM in folks with severe PEM or who are in a crash. Similarly, when we're talking about "symptom-titrated movement" we are also talking about things like passive movements to prevent contractures in the bed bound population, gentle rolls to prevent skin breakdown: what 7/
we view to be crucial rehabilitative activities *if* they can be tolerated. The final thing I want to touch on is the wording around "exercise intolerance" - we try to clinically differentiate exercise intolerance from PEM because exercise intolerance is immediate: you're 8/
exercising and you physically have to stop because you can't continue (for various reasons), versus PEM which usually presents more insidiously: you can do the thing asked of you, but then you pay for it afterwards. Understanding that these are two different things and should 9/
be assessed and managed differently is important, we think.
Ok. Back to start - I hope that this has been at least a little clarifying for the spirit of what we had hoped to communicate and we're actively working with our lived experience community and clinicians to reword 10/
this section. I apologize if this caused hurt or upset, that absolutely was not our intention, but I also want to reiterate that this is intended as a living document: the idea is that we continue to work together to clarify these points as much as we can. This manual is not 11/
likely ever going to stop being reworked, and if members of the community engage us for edits, we will listen and work to make your voices heard through this work. Finding the balance of honoring and communicating the lived experience and the published science of such a 12/
diverse community is challenging, but not impossible if we all work together. I hope that this message has helped and we will be working on edits.Thank you all./end
