I managed to download and see Under Our Skin 2: Emergence (2014). After watching the first (2008) movie last week, I just had to know how things turned out.
I found the sequel much like the original movie: compelling and disturbing and uplifting and inspiring. At times patients show remarkable insight into questions which go far beyond the concerns of a single disease. And some of the lyme disease doctors, too, are truly inspiring. My favourite line, from either film, is this one:
“If you have lyme disease, by my definition, it means also you belong to a tribe here on the planet that is more conscious and more sensitive, and also more likely to do something once you recover that will be of benefit for all of us.” - Dr. Dietrich Klinghardt
I believe this applies to anyone with a chronic illness. And what you see in the second film certainly underlines the idea. Some of the most impressive recoveries involve patients who are now most definitely giving something back. All of the patients, in both films, have something to say that’s worth hearing.
There’s more good stuff in the sequel from former park ranger Jordan Fisher Smith, though nothing to top his unforgettable lament for humanity’s dysfunctional relationship with the natural world that we heard in the first film.
There’s a distinctly dark side to both films. The conduct of certain elements within the IDSA and CDC is, at the very least, alarming. I won’t give too many details here, but if you want to know more there are transcripts of various documents at the filmmakers’ website (see links below).
It took more than five years for a Freedom Of Information request for documents relating to three IDSA officials to run its course (by law it’s supposed to take a month). When the documentation finally reached the filmmakers, there were none of the requested financial disclosures, just emails of which more than half had been redacted. When some of the correspondence which had escaped the censor’s pen contains lines such as “This battle cannot be won on a scientific front. We need to mount a socio-politico offensive …” [Barbara J Johnson, CDC], and when you see an NIH official writing to that same CDC official and referring to patients as “lyme loonies”, you know something is wrong, and you know this film needed to be made. And you have to wonder: if remarks like those were released, what on earth was in the censored material?
For those of us east of the pond, it’s impossible to watch either of these films without thinking of the situation in the UK surrounding ME/CFS. The strategies employed in official circles to discredit and undermine both doctors and patients, the psychologising of people’s suffering, the blunt denial of very real suffering, are all too familiar. They must be using the same How To Blame Patients and Influence People handbook.
The continuing efforts in the USA (and elsewhere) to discredit, even to ruin, doctors treating for chronic lyme is simply shocking.
It’s not all good news on the patient front, either. Some of the patients have been through very difficult family breakups, apparently caused by the unique domestic pressures which come with chronic illness. All seem to have coped, however. Perhaps sometimes these things just have to be.
While I found myself unashamedly rooting for the lyme patients and lyme doctors throughout UOS 1 & 2, I’m not going to pretend these films are beyond criticism. They’re not. Some of the patients featured in the first film were completely absent from the second. While there may be good reasons for this, it’s bad practice not to explain their omission, however briefly. If nothing else, it leaves the filmmakers open to accusations of selective bias. Perhaps some patients simply didn’t want to take part, in which case we should have been told that.
One omission is, I think, a serious mistake. Under Our Skin 2: Emergence does not feature Ben Petrick, the former pro baseball player. At the time of the first film, he had been diagnosed with Parkinson’s but was seemingly coming to the view that he actually had late stage lyme. It’s hard to find credible information about him now, but it seems that he has always accepted the Parkinson’s diagnosis while remaining open to the idea that lyme might be involved in this, and has continued to try lyme treatments in addition to continuing with standard meds for Parkinson’s. I read one, unsubstantiated, comment online which suggested he felt misrepresented by the first film. His is a complicated story, and one that doesn’t easily fit into the narrative of Under Our Skin, but that’s all the more reason to follow it up. We know the sort of machiavellian practices used by some public health officials and by doctors with vested interests. Campaigners for change surely need to be better than them, not copy their methods. You can’t ignore something because it’s inconvenient.
It’s also far from clear what kind of treatment the recovered patients received. There’s a real lack of detail about just how they got better. Perhaps the doctors involved didn’t want details of treatment regimens disclosed for fear of giving ammunition to those who would close them down. Who knows? The film is tight-lipped about this.
Admittedly, the films were targeted at a general audience, and those of us with chronic illnesses are going to want much more medical detail than most viewers. It’s also true that this film was a call to arms more than a survey of lyme treatment. Even so, the vague references to treatment and the sometimes quite ambiguous remarks by patients about recovery left me a little frustrated.
Those quibbles aside, I think these two films are almost compulsory viewing for anyone with a chronic illness, not just lyme patients (as far as I know I have ME, but the jury’s out pending some test results).
I learned a lot from these films about being ill and about getting better. I learned a lot about self-reliance and fortitude. And I learned a hell of a lot about why it’s worth striving and fighting for a better life for yourself and others. My thanks to all those patients and doctors who are doing just that.
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Links:
transcripts of emails quoted in the sequel involving CDC/IDSA/NIH officials:
http://www.openeyepictures.com/references/UOS2_claim_references_4.pdf
index of other source material used:
http://www.openeyepictures.com/references/
Seeing the film:
It’s available in the north American iTunes stores, for either purchase or rental ($4.95, I think). I still have a Canadian account and had a gift card for it, so downloaded the movie ($15). It’s not available in the UK iTunes store, and probably not in many others, so most people outside N.America will have to buy a dvd or something. I only realised afterwards that you can buy or rent either/both films from the website:
http://underourskin.vhx.tv . There are various Video on Demand ways to view, I believe, but these are going to vary fro place to place.
p.s. apologies for the long post, but information on the sequel was a bit hard to find so I thought I'd redress the balance. Hope I'm not missing another thread somewhere.
