New York Magazine - Intelligencer: Has Long Covid Always Existed, by Jeff Wise, November 2022

Amw66 said:
Click to expand...

@PutrinoLab thread in full.

Many folks have tagged me in the
@ManvBrain
article about #LongCOVID and I have just been so swamped that I haven't had a minute to respond, but I've retweeted some stuff by@meghanor and
@sunsopeningband that say a lot of things that I wanted to say. I'll say a few more.

The story of #LongCOVID, #MECFS and other complex chronic illness is a story of systemic bias, injustice, and a set of organic, biological illnesses that cannot be well characterized by conventional scientific approaches. I've just been blessed to spend the last week with
@resiapretorius
who has taught me (with endless patience and kindness, I might add), how #COVID19 triggers biological processes that create microclots and platelet pathology in people with #LongCOVID, whilst deftly avoiding every mainstream blood test we have for coagulopathy.

What we as a field need to actually embrace is the constant need for change and thought updating in the face of HOW LITTLE we know, and measure, of human physiology in mainstream medicine. In his piece, @ManvBrain can't seem to understand why folks with #LongCOVID won't come
back to the CBT and GET table. Challenges the notion that CBT has done harm with all the innocence of one who is blissfully aware of how insidiously these tools are weaponized against those with complex chronic illness. @ManvBrain - yes, people with complex chronic illness,
just like every other member of the population, can probably benefit from psychological services to assist with some of the negative emotions that arise from having a chronic disability (especially if the transition has been sudden) and to process many of the microaggressions
that people with disabilities deal with on a daily basis.

However, while referring a patient to psych services with these things in mind as you attempt treatment of the organic illness may a good model of comprehensive care, simply referring a patient for "CBT", without offering any other treatment is malpractice. We wouldn't walk up to someone who is actively on fire and say "I know that being on fire can be very upsetting, but honestly let's work on reframing how upset this really makes you" yet this is "treatment" for #LongCOVID and #MECFS

I think that you need to understand how wholly unacceptable it is to ask sick people, people whose bodies are *actively on fire* to come "back to the table" under these circumstances. I won't even go into GET except to say that although SOME people with complex chronic illness MAY benefit from some level of skilled rehabilitation, thoughtlessly applying a rigid, "evidence-based" GET protocol to anyone with #LongCOVID and #MECFS has harmed so many folks with complex chronic illness (and no I don't mean "just triggering PEM", I mean caused a progression of the organic pathobiology that is making them sick, thereby significantly worsening disability).

So GET and CBT: a modest % of people with complex chronic illness MAY experience SOME benefit from these things but only if the person prescribing them knows why
they're prescribing it! However, this small concession does not justify an opinion of "let's bring these things back". The harm they have done is real, and I know@manvbrain that you want to push against the concept that CBT has done harm but can you please acknowledge that prescribing CBT with no other treatment plan and poor communication about why it is being prescribed is tantamount to saying "this is all in your head".

Can you please acknowledge that you understand that people's long-term disability benefits can be jeopardized by only receiving CBT as an active treatment. This is the nuance you miss your piece, this is the way that like microclots evading D-Dimer testing, these reductionist "tools" in the mainstream clinical toolkit are demonstrably harming patients with complex chronic illness, and this is what is CONSISTENTLY missed in all of the "great science" that is being run by "actual scientists" (cc
@zeynep) while they completely miss the point and continue to publish papers that intentionally or unintentionally minimize the experience and pathobiology of those
with complex chronic illness.

This is precisely why patient-led groups like @patientled and
@itsbodypolitic (and many others!) are so important (please donate!), because they are centering patient voices and sending us in the directions that might actually produce answers
if we, in our ivory towers, would actually care to listen rather than just run the same old crappy experiments with the same rusty tools without an ounce of intellectual curiosity about why, if mainstream care is so great, are the MAJORITY of our patients either dropping out,
not responding or getting worse. If we as a medical research community simply cannot acknowledge these basic facts about #LongCOVID, #MECFS and other complex chronic illnesses and continue to perseverate on ineffective ideas...well, maybe WE are the ones who need the CBT.
Click to expand...
 
@KarlBode You've retweeted @Taylorlorenz saying very mean (& frankly, unprofessional) things about my Long Covid story.
Click to expand...
"frankly unprofessional"? Surely he knows that the correct parlance is "unbecoming"? They only have a few tricks in their bag - never respond to the substance of anything, just label your critics as mean, unprofessional, vitreolic and take it from there.
 
Someone collected a good selection of twitter threads that responded to this article into a single twitter thread:

"A quick thread of THREADS from experts, journalists, and advocacy groups who have spoken out against the inaccurate, biased, and harmful @NYMag /@intelligencer story on ME and Long Covid."



EDIT: Updated to provide some context in case of future twitter problems.

Here's a list of the users in that twitter thread - they were all pointing out errors and bias in an article in New York Magazine by Jeff Wise with the title "Has Long COVID Always Existed?"

1. David Tuller (@davidtuller1)
https://threadreaderapp.com/thread/1589195957865828352.html
(this threadreaderapp might also break if twitter has problems, but I'm including it anyway)

2. David Putrino (@PutrinoLab)

3. Todd Davenport (@sunsopeningband)

4. Zeynep Tufekci (@zeynep - NY Times columnist)

5. Meghan O'Rourke (@meghanor)

6. #MEAction Network (@MEActNet)
https://www.meaction.net/2022/11/10/elementor-59066/

7. Solve ME (@PlzSolveCFS)
 
Last edited:
Trial By Error: More on that New York Magazine Piece Pushing Psychogenic View of ME/CFS and Long Covid

"So getting back to that long, ill-informed and poorly reported New York Magazine article on the purportedly psychogenic nature of both long Covid and ME/CFS…I responded in a twitter thread to the article’s misrepresentations of my criticisms about the PACE trial.

The journalist, a science writer named Jeff Wise, didn’t interview me. But he did interview three other critics of the CBT/GET paradigm—Columbia physician-scientist Mady Hornig; Lucinda Bateman, a physician who specializes in ME/CFS and related diseases; and Solve ME/CFS Initiative’s director of advocacy, Emily Taylor. All felt their words and positions were misrepresented and have voiced their objections in a public statement."

https://www.virology.ws/2022/11/12/...ng-psychogenic-view-of-me-cfs-and-long-covid/
 
Trish said:
Excellent, thanks to @dave30th and the clinicians who have tried to educate Jeff Wise. Is there any chance the magazine that published his article would commission an article to tell the real story to counter Wise's fiction?
Click to expand...

Editors hate the suggestion that they have miscommissioned, publish corrections and clarifications only when they absolutely have to, and (for topical weeklies) dislike revisiting old ground.

But editors working in a publishing conglomerate love an opportunity to get one over on their counterparts at stablemates. NY Magazine is part of Vox Media, which has a few relevant titles, the most suitable for a counterblast being The Verge.
 
David Tuller quotes from an excellent response (posted on the Solve ME website) to the article by Maddy Hornig, Lucinda Bateman and Emily Taylor who were all misrepresented in the article.
https://solvecfs.org/solve-m-e-community-partners-denounce-misleading-new-york-magazine-article/

They conclude:
"We have contacted Wise and NYM and have called for a retraction of the article. We will continue to further educate, advance the science, and advocate for these underserved and misrepresented people in our communities."
 
You must log in or register to reply here.
Back
Top Bottom