As a journalist that has also had #lymedisease, I can understand why a lot of patients are frustrated with this article.
It spends 95% of its sizeable length fixated on quackery, but not the US health care treatment failures driving desperate patients to these options.
It spends 95% of its sizeable length fixated on quackery, but not the US health care treatment failures driving desperate patients to these options.
https://twitter.com/TheCut/status/1154658943903383552
Up to 20% of Lyme patients continue to have symptoms post antibiotic treatment. The US health care system has NO idea why or how to treat them.
That's a 20% treatment failure rate on a raging epidemic driving desperate patients to quackery. THAT is the story.
That's a 20% treatment failure rate on a raging epidemic driving desperate patients to quackery. THAT is the story.
So many journalists new to #lymedisease see all the desperate patients trying dubious alt-health nonsense, and get oddly and exclusively fixated on that.
But the US health care system is TERRIBLE to these patients. Testing is poor. Misdiagnosis is common.
But the US health care system is TERRIBLE to these patients. Testing is poor. Misdiagnosis is common.
This article spends entire paragraphs talking about Reiki masters, but no real time discussing how we're failing millions of Lyme patients on a massive, overwhelming scale.
They're turning to quackery because the US health care system is failing them.
They're turning to quackery because the US health care system is failing them.
Anyway, I'll hope you'll read my piece on #lymedisease I tried to approach it with a bit more nuance to explain why treatment is so complex and desperate patients turn to quackery:
elemental.medium.com/what-its-like-…
elemental.medium.com/what-its-like-…
The Cut piece on Lyme engages in this weird (but common) form of patient shaming that vaguely implies Lyme patients are all just suckers suffering from some mass delusion.
These kind of articles unintentionally set back Lyme advocacy years, and it's a shame.
These kind of articles unintentionally set back Lyme advocacy years, and it's a shame.
The Cut piece also slams Lyme patients for forging an "identity" around their illness.
But what do you think happens when millions of desperate, ill people all experience the same brand of US healthcare dysfunction? They're bonded together in terror, frankly.
But what do you think happens when millions of desperate, ill people all experience the same brand of US healthcare dysfunction? They're bonded together in terror, frankly.
Yes, there's a universe of snake oil salesmen cashing in on Lyme. There's a universe of dangerous treatments being tried by desperate human beings.
But if you're writing about Lyme and only focusing on the quackery, you're not really telling the full story.
But if you're writing about Lyme and only focusing on the quackery, you're not really telling the full story.
Meanwhile, nice to see the NY Times run a GOOD article on the complexity of Lyme disease. Especially after it ran that one a few weeks ago proclaiming Lyme was "easy to treat":
nytimes.com/2019/07/29/wel…
"More research & better care is needed" is how all Lyme articles should end.
nytimes.com/2019/07/29/wel…
"More research & better care is needed" is how all Lyme articles should end.
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