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Today, I read through the section of the protocol entitled “‘Anxiety’, isolation, and phobia” and found it remarkably similar to Wessely-school theorizing (but with a heaping spoonful of biobabble on top). It’s ironic that many champion Leisk when I’ve little doubt they’d decry these same...

This tweet of Leisk’s captures what I find so troubling about him. Delusional self-regard plus little concern for the harm he might cause others.

Wanted to share the response I just received from OMF:

That the head of OMF’s scientific advisory board is allegedly highly impressed by the work of, in my opinion, an obvious and dangerous crank changes how I feel about the org. Faith in Ron’s scientific judgement is at the heart of why I’ve encouraged family to donate to OMF previously. I’ve just...

I found what is almost certainly Leisk’s reddit account. Most of its activity is dispensing medical advice related to the protocol in long covid and ME/CFS subforums. There is also plenty of evidence that the user of this account believes in alien visitation and is an antivaxxer. His account...

This new thread on the hospitalist subreddit about a person with LC/ME is one of the most upsetting I’ve ever seen. Truly frightening.

Asymptomatic spread is very common— around 20% of covid cases are asymptomatic it seems. So when and where pwME mask is germane to both!

When I referred to many pwME not taking covid precautions, I wasn’t basing that off the results of this poll but my observations of pwME on social media over the last few years. Sorry for not being clearer about that!

Personally, I find it really dispiriting and alienating that so many of us are fine not making an effort to hinder the spread of a still-deadly virus… which also causes ME! I could never hope to repay my debt of gratitude had the person who got me sick in 2007 shown me this consideration. How...

From Janet Dafoe on twitter a week ago: Whitney is working with Josh Leisk and seeing benefits from following the protocol.

There seems to be substantial, growing interest in this alt-med protocol among pwME if my Twitter is anything to go by—and not just among the people most into alt-med. So it seems worth being informed of. The Born Free protocol is the creation of Joshua Leisk. Here’s how he introduced himself...

That makes sense. And I can relate—I found Putrino’s thread about visiting a very severe pwME in their home very affirming and moving. My wariness is informed by how potent validation from medical professionals seems in our community. I feel like it leads many to assume the person giving it...

Am I alone in finding Putrino’s Twitter threads a bit hollow and performative feeling? They contain little insight beyond “Them Bad. You Good.”, and given his professional incentive to win the support of our community, which his threads are clearly effective at, I feel a little skeptical.

I think it’d be helpful to have examples of this tactic to cite from the history of science (of researchers portraying themselves as dispassionate investigators of a common-sense hypothesis while the group they’re studying, who object to their work and its harms, are doing so because they’re...

Browsing Reddit forums where physicians talk amongst themselves has impressed on me the considerable influence that UpToDate has on US medical practice. Physicians here seem to consult it often and trust it implicitly. The site is paywalled so I can’t verify the current content of their ME/CFS...

It’s worth noting that Whitney wrote a near-identical blog post to this a couple years ago in the wake of a major legal defeat for women’s reproductive freedom in America. He was not a fan of the intra-community conflict that followed and similarly exhorted everyone to stop arguing and focus on...

Absolutely. If you ever get around to checking out their site, I’d be interested in your opinion of how they fare on this front. I think they do quite a good job of packaging scientific skepticism in a way that patients will be receptive to.

Many of the treatments ALSUntangled reviews have little to no clinical trial evidence either. The way they contextualize the lack of evidence, or the shortcomings of the available evidence, for a lay audience are still helpful in my opinion. Your point about us not having 100 clinicians and...

Occasionally, I read other disease communities’ online fora to broaden my horizons. That’s how I came across ALSUntangled—an org likely to be of particular interest to members of this forum. Here is how they describe themselves on their Mission & Methods page: The treatments with the most...

With the press consistently framing this study as proof exercise is harmful for people experiencing PEM, it wouldn’t surprise me if our friends in the BPS bubble make their displeasure felt soon.