It'sME(Jaime) Profile picture
Sep 25 25 tweets 5 min read Twitter logo Read on Twitter
Let's talk about the UK's Science Media Centre and its history.

The Centre calls itself "an independent press office for science, working closely with press officers from universities, scientific companies, research funders &leading science and engineering institutions."
The SMC is a publicly-funded PR group, representing influential corporations whose financial interests are threatened by the interests of the public.

Connie St. Louis, then president of the Association of British Science Writers, said: "Perhaps the greatest tragedy, or item of public interest, has been the complicity of successive scientifically illiterate UK governments, which have donated nearly half a million pounds of public funds to this dishonest endeavor." -- St. Louis, source: https://archives.cjr.org/the_observatory/science_media_centers_the_pres.php
St. Louis performed a study on SMC. Over half the SMC’s "expert reactions" were covered in the press and "in 23% of the stories... the only quotes were those that came from the centre."

“Whatever the SMC delivered to them is what they used,” she said. tinyurl.com/2hhf562n
SMC championed Monsanto's use of heavy-duty pesticides on their more pesticide-resistant GMOs. The contention was that their products contained too much pesticide to be safe.

If you remember framing of anti-GMO arguments very differently... there's a reason for that. "It has cast biased press briefings such as one on GMOs, funded by Monsanto and invited unwitting and time-starved journalists. The results have been catastrophic. The quality of science reporting and the integrity of information available to the public have both suffered, distorting the ability of the public to make decisions about risk. The result is a diet of unbalanced cheerleading and the production of science information as entertainment." Connie St. Louis, source: https://archives.cjr.org/the_observatory/science_media_centers_the_pres.php
David Miller, co-founder of Public Interest Investigations, said SMC promotes a "certain kind of science... that corporations and governments... want to see developed... Once it steps... to supporting science policy, SMC becomes political, even though it pretends not to be."
Miller has also pointed out that, while SMC presents itself as an institution of science, many of its experts do not have higher-level degrees or work in the field of their SMC-declared expertise.

The remainder were corporate lobbyists and CEOs. "What he found was that some 20 of the 100 most quoted experts were not scientists, as defined by having a PhD and working at a research institution or a top learned society. Instead they were lobbyists for and CEOs of industry groups." Source: https://www.scidev.net/global/features/uk-s-science-media-centre-lambasted-for-pushing-corporate-science/
The Science Media Centre also championed the safety of fracking. “The role of the SMC appears to be putting a relatively narrow view of, in most cases positive, opinions of the safety of fracking," reported Paul Mobbs, who founded an environmental group.
All of these projects have three things in common:
(1) A corporate interest has something to lose
(2) The public stands to be harmed
(3) The science described is considered cutting-edge and/or challenging to understand, and therefore 'up for debate' (and ripe for disinformation).
Perhaps it should not be surprising that one of SMC's favorite targets over the past decade is disabled folk. Government has an inarguable financial interest in claiming as few disabled people as humanly possible; they have a real stake in who "gets to be" disabled.
ME/CFS has been a favored target of SMC for over a decade; #LongCOVID is next. So when you see UK outlets uncritically repeating oddly identical unscientific, harmful talking points about disabled people, understand where this is coming from & do not help spread disinfo.
As a journalist, if you see a belief no evidence could feasibly counter yet it's presented as a scientific finding? Please think twice before promoting it uncritically... or at all. I'll let St. Louis close us out: "A decreasing pool of time-pressed UK science journalists no longer go into the field and dig for stories. They go to pre-arranged briefings at the SMC. It is a science PR agency that sets the science journalism agenda. In any other area of journalism this practice would be ridiculed. Imagine the consequences if political journalists behaved in this way." -- Connie St. Louis from https://archives.cjr.org/the_observatory/science_media_centers_the_pres.php
@PutAimovigOnNHS I think pushback would actually be really interesting, and pull in more readers & possibly more revenue, but I don't run these folks' businesses.

I do know many readers have a real hunger for nuance and detail, or no one would be running Last Week Tonight.
@PutAimovigOnNHS Nuance and reality are still powerful because there is a huge contingent of humans who value them. I think many journalists are ethical and want to use their voices well.

We can't deny that market forces encourage writing bad things quickly-- they're just not the only forces.
@PhoenixMe_ (Also: thank you.)
@MECFSNanoneedle Individuals can make ethical decisions.

Profit-driven systems? Not so much.
@MECFSNanoneedle When we say $54B loss to "the economy" corporate interests don't care about that. That's in part about how much individuals make/lose. Capitalists aren't interested in how much money "the country" is losing, provided they are able to keep moving money around/do better than others
@MECFSNanoneedle For example, so many were out of work during COVID but corporations saw RECORD profits. That's what they care about, & government is a bunch of corporations in a trenchcoat, that's what THEY care about. They only care about individuals insofar as they affect their bottom line.
@MECFSNanoneedle "Seventeen of the top 25 most profitable corporations are expected to rake in $85 billion more in profits during 2020 than what they averaged in the four years before the pandemic."

ncjustice.org/wp-content/upl…
@MECFSNanoneedle So you see Long COVID and ME/CFS as this huge financial opportunity-- pharma sees it as an untenable risk. And government doesn't care, much, about the loss of us overall, in part b/c caring about COVID means spending could drop again and foment unrest as it did in 2020.
@MECFSNanoneedle So let's say they read that Brookings report that said that 15% of job vacancies were due to Long COVID. Because of the political issues around COVID, they'll pretend it's due to something else. If "nobody wants to work anymore" stops working, they'll pivot.
@MECFSNanoneedle Anyway, I'll stop here; I'm sure this is more than you bargained on receiving as an answer!
...a lotta quote-tweets from locked accounts, unsurprisingly 😮‍💨
Propaganda uses the same catch-phrases b/c the more folks read the same words & phrases the more likely they are to internalize their message. 🙄

Five outlets using the exact same quotes (and article titles!) from a press release should give readers pause, but it probably won't.
SMC's PR strategy is to discredit disabled people and disability in general.

But it is not up to you to 'prove' your disability, much less to internet strangers.

Instead, let's explore the unreliability of the source and how uncritically it was parroted by the UK press.
Muting this one now.

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More from @exceedhergrasp1

Sep 26
Excellent, actually, from the RECOVER Mechanistic Taskforce: . 🧵elifesciences.org/articles/86043
"We... emphasize the need to build on and complement, rather than merely repeat, existing research from similar conditions, such as #MECFS, #Lyme disease, #dysautonomia..." (2/)
"Further exacerbating PASC’s time pressure is the NIH’s historic underfunding of overlapping illnesses with potential post-viral origins that have extremely similar phenotypes to #LongCOVID (Komaroff, 2019). If research for diseases such as #MECFS... (3/)
Read 11 tweets
Sep 5
Baffling decision by @NIH's National Institute on Minority Health and Health Disparities (@NIMHD): disabled people don't "count" as a minoritized population with greater health disparities than able-bodied folks.

They explained their decision by... (1/4) 🧵
...stating that disabled people don't always face inequities.

An unusual claim, since multiple studies have found & documented such inequities and disparities.

The NIH Working Group for Individuals with Disabilities Appendix C has the receipts: (2/3) acd.od.nih.gov/documents/pres…
No one on the committee making the decision that disabled people are not a population that faces healthcare inequities identified themselves as a person living with a disability.

This is why we say, "nothing about us without us." (3/4)
Read 8 tweets
Mar 17
THIS IS A BIGGER DEAL THAN MOST PEOPLE REALIZE.

Awhile back, I made a post about the Wayback Machine.

The Wayback at the @internetarchive allows folks to see documents as they used to be on the internet-- even if subsequently deleted or censored. 🧵 Image
The Wayback Machine is vital for advocacy. We can see what our government said in the past, and compare to what they're saying today.

As part of our ongoing slide into regressivism, we're erasing history. Erasing the knowledge that things can be better, that they once were. (2/)
Reams and reams of fiction are only available through the Wayback, particularly those by LGBTQ+ authors, due to another attack on free fiction by queer authors when Livejournal was "deleted and purged". (3/)
Read 4 tweets
Mar 8
TW: death, severe illness

Here to support #DontLetMEDie! Let's talk about severe ME.

ME, usually #MECFS in the US, is a neurological disease initiated by infection ~80% of the time. Because it's neurological, it presents with symptoms in every system. 🧵
The quality of life in people with #MECFS is low on the median. 🧵#DontLetMEDie
Severe ME is extraordinarily impairing. Depicted are Merryn Crofts (L) and Whitney Dafoe (R) with severe ME.
Source is: me-pedia.org/wiki/Severe_an….

QOL & symptom survey instruments often aren't designed to capture debility this severe.
🧵#DontLetMEDie A white woman with brown ha...A white, underweight man li...
Read 8 tweets
Feb 25
Many may be unaware that their #LongCOVID presentation would dx with infection-associated chronic illnesses like #MECFS, #POTS, #MCAS, et al.

I promised I'd put together a thread on #POTS after the thread about management advice for the condition.

So let's get started! (1/)
First, let's discuss what #POTS may feel like.

POTS is postural orthostatic tachycardia syndrome. It means that when you change position from lying down to sitting up, or sitting to standing, your heart may pound, you'll feel dizzy &/or nauseated, and you can even pass out! (2/)
#POTS is: "A heart rate increase from horizontal to standing (or as tested on a tilt table) of at least 30 BPM in adults, or at least 40 BPM in adolescents, measured during the first 10 minutes of standing." (JHU)

Note: delayed responses can happen, too! (3/)
Read 24 tweets
Feb 25
Many systems already require that you get a NEW prescription every MONTH for #ADHD. Now, patients will have to visit a clinician IN PERSON every single month to "prove" they still have #ADHD and get the meds they need to function. (1/4) 🧵
Great news for providers who love to phone it in & cash a check. All you have to do is say "yep, still #ADHD" & collect your fee.

Bad news for patients, especially:
(1) multiply disabled patients, who will miss appointments, & go off and on their meds as a result, and (2/4)
(2) The middle class & working poor, who will have to foot the bill for these extra appointments, which often aren't paid for by insurers in the first place. Talk about absolutely, 100% ensuring that diagnosis and treatment are only available to the MOST privileged. (3/4)
Read 13 tweets

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