Thread by @meghanor

Just read the @NYMag piece about #longcovid and I've got a lot of critiques of it - as a journalist, as an editor, &, of course, as a person living with complex chronic illness. Briefly, here are some of the issues I see, ones I think turn up in a lot of magazine pieces:🧵

First, the piece conflates patients with #longCOVID and #POTS who might be helped by exercise rehab (done right--itself hard to find) with those who will be harmed by exercise. There are different groups. Important to make fine distinctions as a science writer.

I am a patient with #longcovid and #pots who has benefitted from exercise, but for the first months of #longcovid my dysautonomia was so bad that exercise led to days-long crashes. This is not complicated to grasp/understand/message--backed up by research; see @PutrinoLab etc.

So, I think there is a *nuanced* conversation that should be led by *scientists & patients* about the murkiness around PEM; we need better understanding of what population with #Longcovid or #POTS gets short-term crashes but improves and which is harmed. That's not this piece.

2. Science journalism shouldn't implicitly equate advocacy with being anti-science unless it has clear evidence of such. This piece makes the same old move of setting up advocacy as a straw man (and the bit about "conventional wisdom" is dubious):

That is, these kinds of pieces tend to depict patients' anger as evidence of their *irrationality,* rather than, say, logical frustration at bad medical science (FYI, the same thing is all over 1980s #AIDS journalism) :

(Meanwhile, most patients want good science, for obvious reasons: ) /6

3: These pieces usually imply the disease is largely if not entirely psychogenic, portray that view as unfairly under siege, and then remind readers (kindly) that psychogenic suffering is real. However, as I write in THE INVISIBLE KINGDOM:

4. Such pieces always do some problematic stuff with gender. Here, the piece states that "most patients are women, most are white, and the most common age of onset is between 40 and 60." Then it says: "No reason for long-standing gender disparity is known." Well...

"Known" is doing way too much work in that sentence for my taste as an editor. It's true we don't "know," but scientists have many possible explanations. And #autoimmune disease, which is not contested (in theory), also affects overwhelmingly women, often middle-aged...

as I reported in THE INVISIBLE KINGDOM on the science of gender in immune-mediated illness, researchers emphasized the differences btw men and women's immune systems, as well as the role of hormones (which affect #autoimmune disease and could play a role in #longcovid)...

We get the usual critique that such illnesses are mostly suffered by white women (middle class), but if you seriously report out this claim, it's spurious: my research suggested that tons of women of color & women w/fewer resources have these illnesses but aren't getting care.

So: IMO, the piece raises one important topic that requires a highly nuanced, sensitive discussion--how science might learn to differentiate which #longCOVID #POTS patients might *at some point* benefit from exercise therapy and which won't...

& then proceeds to hash that out in a way that is neither helpful nor very well-informed.And this is why I've bothered writing this🧵 : because magazine editors will always want the flashy "contrarian" piece about how maybe this is all in folks' heads...

Finally, I try to be positive in my interventions around #chronicillness discourse. But the idea that #longcovid may be psychological is a more dominant view than the piece suggests, and the advances in #MECFS are more fragile.

In a moment of crisis like this, with suffering all around us (much of it invisible still), scientists, journalists, & editors have a responsibility to think deeply about how report on emerging science.

As a person with #longcovid, I want more answers too. This is not the way.