Discussion of documentary: What about ME? (2016)

Two days ago I was made aware of a documentary titled "What about ME?", published in 2016. First time I had heard of it and maybe I missed discussion at the time since I wasn't around here but there does not appear to be any discussions on it yet, none that Google could find anyway (since the forum search function rejects common words it's impossible to search for the title, even in part).

I watched it last night. It's on Amazon Prime for those who have it: https://www.imdb.com/title/tt1770767/. The producer tried to have some of the BPS folks interviewed but as is typical they refused, cannot stand outside of their echo chamber.

There are good and bad things to say about it. Mostly good, though politically sensitive as it focuses a good part of the documentary on the shenanigans at the CDC and the XMRV episode. Long story short is it appears the contamination of samples with XMRV may have been deliberate, for whatever exact reasons is unclear. Wouldn't surprise me, frankly, as it wouldn't even be the worst episode in the last 30 years, just one mediocre episode in an endless list of human failure and bad faith actors blocking efforts.

I am not familiar enough with the details of XMRV and cannot do much research to validate some of the claims, but suffice it to say there are many unresolved issues and significant misconduct that need investigating.

I think the main downside is that it is too sympathetic to us, will not convince anyone with firm beliefs about ME being a non-disease, but then again nothing will. And anything addressing politics is a minefield balanced on top of a larger crocodiles-with-head-mounted-lasers field.

One thing I noticed is how relevant it would be to study ampligen. I thought it was mostly a lost cause given how few people it actually worked for but clearly that would tell us things about the disease. I didn't quite understand it in that framing and now it makes a lot of sense, not as an endpoint but as a stepping stone, particularly one that would entirely blow the psychosocial model, with huge implications for insurers (along with a long record of documented malfeasance).

Otherwise it is generally a good record, important for the future when people start asking what happened and some people try to argue they could not possibly know it was this bad (but they did, or had everything at hand to know anyway). There are many interviews and videos from some of the proceedings with the CDC, FDA and other government agencies.

One thing it did reinforce IMO is that compared to this, the AIDS crisis seriously looks like a model to follow for how to respond to a public health crisis. It was extremely bad, but the ME debacle blows it out of the water and out of the solar system. What an embarrassing debacle with deadly and generally horrifying consequences, and far from over.

 

I heard stories about Ampligen being very effective for one person or a few, but the clinical trial results were also disappointingly weak.

It would only make sense to study this further if you can predict the response.

 

If this is the case, it might even suggest that those who benefit may have something other than ME. Depends how big the cohort was – but if, say, only one person out of 20 benefits, it begins to look fishy.