zedsrigil @sunsweptforest Twitter profile

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zedsrigil

@sunsweptforest

11 months

There is no cloud. There are only data storage and processing centers where formerly there was wildlife.

Why Everything Is Getting Louder

The tech industry is producing a rising din. Our bodies can’t adapt.

www.theatlantic.com

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zedsrigil

@sunsweptforest

8 months

I want to say this "out loud": severe and very severe ME will kill you a lot faster if you don't have money and/or someone to look after you and look out for you. A lot of us don't have this. If we decline, our deaths will not be well-considered, well-documented 1/

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zedsrigil

@sunsweptforest

8 months

Friends. Welcome to my ZedTalk(TM). Today I want to speak about “effort preference,” because that is the termite-infested foundation on which the Paper-Which-Shall-Not-Be-Named is constructed. Effort preference in this paper is defined as “how much effort a person 1/

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zedsrigil

@sunsweptforest

8 months

@AaronCa11 Ppl have become really committed to this idea that we can control everything in our lives with our thoughts. I remember when Jedi mind tricks were only in movies.

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zedsrigil

@sunsweptforest

8 months

and widely mourned. They will be excruciating. Quite possibly messy. Heart-wrenchingly solitary. There is no substitute for money and caregivers. Without them, we perish. Similarly there is no substitute for not having to outrun violence or bombs. 2/

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zedsrigil

@sunsweptforest

8 months

There were people in Palestine with severe ME, and in Sudan and the DRC. And many are dead now, because only the "lucky" become refugees. I long for the more fortunate among us to at least *mention* our silenced, forgotten fellow travelers and what they may be going through. 3/

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zedsrigil

@sunsweptforest

8 months

So I will continue to do so myself. Acknowledging the suffering of others does not diminish our own. There is always someone worse off than we are. We must advocate for ourselves without forgetting them. 4/4

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zedsrigil

@sunsweptforest

6 months

We talk about community care in the ME/CFS community. But after decades of this bullshit, we still have no major orgs devoted to the basic protection of our own most vulnerable members. The folks mild enough or monied enough to do that kind of org work are much 1/

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zedsrigil

@sunsweptforest

10 months

There's been a bit of a dustup over the quality of certain academic papers, and I want to address a couple aspects of it. 1) Just bc something is published in a "low-impact" or not-famous journal does not mean it's poor quality.

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zedsrigil

@sunsweptforest

8 months

and found *not* to suffer from Fear of Water to complete it...then using the results to claim they suffer from Fear of Swimming whilst also deliberately ignoring the fact that these people are all wearing casts bc they have broken limbs, so their behavior during the exercise 6/

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zedsrigil

@sunsweptforest

8 months

will reflect the fact that they cannot currently swim. It is patently, flagrantly absurd. To be very clear, the authors selected people to study who are very sick and then deliberately applied an inappropriate tool that assumes *low motivation* and *lack of appreciation of 7/

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zedsrigil

@sunsweptforest

6 months

I'm weirded out by the fact that the discussion about viral persistence and LC recently has failed to acknowledge the ME/CFS researchers that contributed to the foundation for that work. Especially since ~50% of LC is ME. You'd think it would be relevant.

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zedsrigil

@sunsweptforest

8 months

rewards* leads to less effort. Results of the activity are interpreted accordingly. (Amusing in context of ME, where ppl are more likely to behave like the Black Knight--continuing to push thru even as their life blood drains away--than a couch potato.) 8/

Monty Python - The Black Knight - Tis But A Scratch

Get the T-Shirt: http://goo.gl/VMHdMiA scene from Monty Python and the Holy Grail in which the Black Knight valiantly denies King Arthur from crossing his br...

www.youtube.com

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zedsrigil

@sunsweptforest

9 months

‘It’s taken ten years to get where we are,’ says Prof Ponting. ‘The volume of research for ME/CFS is tiny compared to where it should be for such an underserved community that is so large.’ It’s estimated that funding is 20 times lower than for diseases of comparable severity.

Women's Health

@UKWomensHealth

9 months

'The Dragon's Den debacle shows we urgently need more research into ME/CFS'

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zedsrigil

@sunsweptforest

8 months

although they are careful to say they can’t make causal claims. As anything other than a joke or a teaching tool (perfect for undergrad methods classes!), this paper is an outrage. 11/

Todd Davenport

@sunsopeningband

8 months

If anyone’s curious why Long Covid caught us flat footed and we’re still behind on that, it’s because we’ve been really busy throwing money and talent in a giant pit, setting it on fire, and then gaslighting patients into thinking all of that is part of the scientific process.

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zedsrigil

@sunsweptforest

8 months

Anyway, the whole paper is constructed around this, and it’s actually totally irrelevant to ME. The authors even run regressions on the EEfRT results and attempt to correlate all the biophysical findings with this very particular key trait of MDD, piling a 9/

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zedsrigil

@sunsweptforest

8 months

statistical disaster on top of the dumpsterfire they made of research design. The way they discuss the findings also tacitly implies some causality (suggesting that effort preference for non-effort leads to deconditioning over time leads to, you guessed it, disability), 10/

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zedsrigil

@sunsweptforest

8 months

subjectively wants to exert.” The authors warn us that, “as fatigue develops, failure can occur because of...an unfavorable preference.” But how do they measure this remarkable concept, so key to their ground-breaking analysis? They use the Effort-Expenditure for Rewards Task 2/

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zedsrigil

@sunsweptforest

8 months

Just to be crystal clear: they only did 1 day CPETs, and they only did them on 8 of the 17 patients.

zedsrigil

@sunsweptforest

8 months

problematic to even generalise the results to the entire patient volunteer group, considering that some tests were done on *less than half* of them. (The authors of course note some of the limitations, and then totally ignore them.) This study cost a lot of money and took 6/

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zedsrigil

@sunsweptforest

9 months

@elle_carnitine The shame of the shameful behaviour of your former friends is not yours to bear. These new people, they respond in this manner because they are instinctively afraid they would behave in a similarly pathetic manner. I am so sorry for your pain.

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zedsrigil

@sunsweptforest

7 months

Y'all, a correlation between lower levels of T and more severe symptoms is not actually a magical new concept. We're familiar w it in the ME/CFS community. We're familiar w it in differences in reactions to vaccines between cis men and women. It's been documented in POTS. 1/

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zedsrigil

@sunsweptforest

8 months

carefully (rigorously!) screened out participants who had additional diagnoses that could confuse the results of the study. This is not unlike taking an instrument designed to measure Fear of Swimming--as a subset of Fear of Water--and asking people who’ve been pre-screened 5/

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zedsrigil

@sunsweptforest

8 months

a lack of “willingness to expend effort for rewards” due to “decreased motivation for and sensitivity to rewarding experiences.” Anhedonia is used to distinguish MDD from other psychiatric disorders. But wait! Surely ME isn’t...MDD? No indeed. In fact, the authors of The Paper 4/

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zedsrigil

@sunsweptforest

8 months

(EEfRT), an instrument designed to explore effort-based decision making in people suffering from Major Depressive Disorder (MDD), anhedonic subtype (Treadway et al 2009). The anhedonic subtype of MDD is characterised by “aberrant motivation and reward responsivity”--ie, 3/

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zedsrigil

@sunsweptforest

8 months

Dear ME/CFS & LC Researchers, I am saddened by the events of the past week or so. The release of the paper by Walitt et al. and the subsequent remarks (ranging from guarded to glowing) in the press from many of you have left a bad taste in my mouth. The project (as you are 1/

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zedsrigil

@sunsweptforest

8 months

'But Z, what about the results of the NIH paper distinct from the whole effort preference thing?' Fair. At times the article absolutely reads like (at least) two different people wrote parts of it, fundamentally disagreed, and mushed their work together anyway. And yes, 1/

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zedsrigil

@sunsweptforest

8 months

Working my way through this killer piece by @elle_carnitine . Highly recommend. ' A cursory look at the history of ME reveals that state actors and insurance companies went to great lengths to undermine the former consensus that ME is a serious organic illness. This continues 1/

elle carnitine 🍉

@elle_carnitine

8 months

One of the points I make here is that we shouldn’t think of illnesses as legitimate vs contested, but as legitimised vs controversialised: illnesses are taken seriously or not, not bc of apolitical scientific facts (“what the evidence says”) but bc they are made so by the state

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zedsrigil

@sunsweptforest

7 months

Moving forward, we're more likely to be successful in our goals if we are clear about something: it is actually unlikely that Walitt is "batshit crazy." What we can say with a fair degree of certainty is that he's a dude with a belief system and 1/

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zedsrigil

@sunsweptforest

8 months

I could talk about how absurd it is for the NIH paper and press release to focus on “feelings of fatigue” rather than objective measures of PEM. 1/

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zedsrigil

@sunsweptforest

8 months

So, outrage thread to follow. 12/12

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zedsrigil

@sunsweptforest

6 months

more focused on research and political & healthcare outreach. Because they want to get better and they want their doctors and friends to take them seriously. They're either banking on not ending up extremely severe or they have folks who will look after them if they do. 2/

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zedsrigil

@sunsweptforest

6 months

Care work is hard. There are no great scientific breakthroughs to say you were a part of, no longed-for personal validation from HCWs. And creating an organisational structure for care for pwME is a tough sell bc it means acknowledging it will be 3/

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zedsrigil

@sunsweptforest

7 months

erroneous, unscientific, misogynistic, and extremely dangerous beliefs persist (and continue to be championed) in some areas of research and in many areas of clinical practice--not to mention popular culture. Even as we're over here making snide remarks about Walitt's mental 3/

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zedsrigil

@sunsweptforest

9 months

@healingfromlc I am so sorry this happened to you! Here is a resource for finding masks that are safe and authentic: (images show the wiki on Masks4all)

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zedsrigil

@sunsweptforest

9 months

'Based on our findings, we argue that the experience of being long-term bedridden with ME/CFS during childhood and adolescence can be understood and communicated as a plot in which individuals find themselves pushed to the extreme limit of suffering and loneliness.'

Tom Kindlon

@TomKindlon

9 months

New from Norway: A suffering body, hidden away from others: The experience of being long-term bedridden with severe #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome in childhood and adolescence Free fulltext: #SevereME #MEcfs #CFS #PwME

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zedsrigil

@sunsweptforest

7 months

@amethystarlight I am so over being more informed than people whose actual literal job that they get paid money to do requires them to be informed. I don't even care if that sentence is incoherent. I am exhausted.

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zedsrigil

@sunsweptforest

6 months

years, quite possibly decades, before we get treatments. Not a lot of shiny promises to entice rich donors. Folks keep sharing Hope's posts asking for housing for them, but they need more than housing. When released from hospital, 4/

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zedsrigil

@sunsweptforest

6 months

I've long suspected it & below is definitive proof: victim-blaming approaches are a direct result of a steady diet of trashy historical romance novels. There is no ✨social mystique✨ to being very sick. It's ugly and hard and smelly and lonely and deeply, deeply boring.

Dr Keith Geraghty

@keithgeraghty

3 years

Warning this slide may upset: please do read this one @RCPhysicians @bodgoddard Are physicains claiming ME/CFS patients gain from having ME/CFS? I think this slide should form the basis of some complaint on this @NICEComms . "unwanted sexual attentions" really?

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zedsrigil

@sunsweptforest

6 months

they may need round the clock care--they did before they were admitted. Right now, tho, they need advocacy. If you are able to help w that, please reach out to them. You can also donate. And, you can keep believing them. 5/5

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zedsrigil

@sunsweptforest

8 months

of which almost a quarter "spontaneously recovered"! (ME patients have a better chance of spontaneously *combusting* at those rates.) Generalising to the ME population from this study is...not something I would recommend. In fact, it's 5/

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zedsrigil

@sunsweptforest

8 months

this research are breathtaking in their hubris (esp re: negative findings) given that they are based on a research design that couldn't be arsed doing a 2-day CPET. A research design focused on exploring "(feelings of) fatigue". A patient participant group of only 17, 4/

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zedsrigil

@sunsweptforest

7 months

an agenda that tracks with the way ME/CFS and other complex chronic illnesses have been treated (and "treated") for centuries--just with some updated and increasingly slick rhetoric. Dismissing Walitt and his work as "crazy" minimises the degree to which these 2/

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zedsrigil

@sunsweptforest

7 months

Walitt: The illness is real *to the cells.* The most important thing is to be *kind* to them. Nath: Now you see, each cell has its own tiny R TPJ... Wessely: What we are witnessing is the spread of mass hysteria at the cellular level.

Naomi Harvey PhD #WearAMask

@Naomi_D_Harvey

7 months

This has been shown a few different times now. There is something in the blood of people with #MyalgicEncephalomyelitis that makes healthy cells become unhealthy cells. That makes them start to malfunction. What this is, has not yet been isolated & identified. But it’s there.

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zedsrigil

@sunsweptforest

8 months

HR: “As Nath said, the study...was designed to set a framework for future funding & that was accomplished.” The Study: “[E]ffort preference...is the defining motor behavior of this illness.” “W time, reduction in physical activity leads to deconditioning & functional disability.”

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zedsrigil

@sunsweptforest

7 months

themselves into absolute knots in an attempt to do so. These beliefs are a relic. Let's encourage our advocacy orgs to emphasise real scientific progress and measurable political and policy gains, not stand by quietly while a horse and carriage from the past runs us over. 9/9

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zedsrigil

@sunsweptforest

10 months

'An amazing number of this critic’s circle of acquaintances have succumbed to COVID-19 in recent weeks. [T]he majority ...[were ill] for weeks and even five or six weeks afterwards are still suffering from serious symptoms, especially fatigue. One even spent a week in hospital.'

British TheatreGuide

@BritTheatreGuid

10 months

Theatre feature: “Alas, poor country!” COVID is on the warpath again. Theatres and theatregoers need greater protection.

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zedsrigil

@sunsweptforest

7 months

status, other folks are tweeting about their physical therapists and clinicians trying to trick them into listing their "secondary gains" from being sick. While the Walitt/Wessely view may be in the minority in the actual scientific lit, anyone who's ever suggested you try 4/

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zedsrigil

@sunsweptforest

6 months

If you want research for ME/CFS explicitly included in this funding, please say so clearly and enthusiastically! (And politely, obviously.) We can submit comments here 👇

Billy Hanlon

@bhanlon15

6 months

"We invite your input on the more detailed proposal (HERE). Please submit your comments to the Committee by email at LongCOVIDComments @help .senate.gov no later than the close of business on Tuesday, April 23, 2024.

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zedsrigil

@sunsweptforest

7 months

@bhanlon15 Is that....a BPS researcher collapsed on the bed in despair and hiding their face from the illumination of truth and science? 🌟

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zedsrigil

@sunsweptforest

8 months

problematic to even generalise the results to the entire patient volunteer group, considering that some tests were done on *less than half* of them. (The authors of course note some of the limitations, and then totally ignore them.) This study cost a lot of money and took 6/

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zedsrigil

@sunsweptforest

8 months

I could talk about how “effort preference” is in many ways a rebranding of the old “dysfunctional illness beliefs” myth used to justify the egregious neglect and outright abuse of ME patients for decades. 2/

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zedsrigil

@sunsweptforest

7 months

yoga or AccuSeeds tacitly (or explicitly) believes some or all of this shit. And people who believe this stuff aren't "batshit crazy" any more than folks who believe that our tongues have four distinct taste-specific zones or that all calories (and everyone's metabolisms) are 5/

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zedsrigil

@sunsweptforest

7 months

dictate what is "crazy" or not, or to engage in effective shaming or ostracism. We're more likely to get traction calling it what it is: antiquated myths recycled in the interest of ego and economic gain. No one needs to feel superior like a subpar scholar; they will twist 8/

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zedsrigil

@sunsweptforest

8 months

by now aware) suffered from grievous design flaws and incorrect technical interpretation of data as well as claims unsupported even by the authors’ own (erroneous) interpretations. In addition, the publication perpetuates anti-scientific myths regarding 2/

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zedsrigil

@sunsweptforest

6 months

I would gently remind the broader pwME community that we (trans ppl) are among you. In fact, trans folk are more likely to suffer from LC than cis women. I'm comfortable saying the same is true of ME, tho ofc we lack good stats (for obvious reasons relating to trans oppression).

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zedsrigil

@sunsweptforest

7 months

created equal. (These are myths, btw.) I've been forthright about my views on calling Walitt crazy from the perspective of human rights for those with mental health conditions. 6/

zedsrigil

@sunsweptforest

8 months

Friends. Welcome back to ZedTalks(TM). This one is a bit different. This one is loving. This one starts w the observation that some of us are learning new things about the ppl responsible for the NIH paper. The shock of these discoveries is prompting the use of hurtful 1/

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zedsrigil

@sunsweptforest

7 months

Even if you're resistant to that, the reality is, from a tactical perspective, calling Walitt names doesn't do much other than blow off some steam. We are the marginalised group here; we do not have the cultural clout to 7/

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zedsrigil

@sunsweptforest

7 months

Oh look-- it's the history of ME repeating itself! See: McEvedy and Beard (1970) or the PACE write-up

Dr. Deepti Gurdasani

@dgurdasani1

7 months

It would be like if there was a whole body of empirical evidence that supported the earth being spherical, but one person conducted a study that they say showed the earth was flat (unpublished), but asked us on the basis of that to stop referring to the earth being a globe...

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zedsrigil

@sunsweptforest

9 months

Absolutely disgusting and shameful that people like Lauren, so full of life and humour right up to their last breaths, have suffered medical and governmental neglect and abuse of this scale. #CureME #ResearchMEnow #DoBetter #StandwithME

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zedsrigil

@sunsweptforest

7 months

We desperately need a better idea of how often this happens worldwide for pwME. For ex, in the US, we know that ppl are held captive in hospitals or HCWs try to put them on psych holds for Lyme and CRPS. This must be happening to pwME as well and we just aren't hearing

Naomi Harvey PhD #WearAMask

@Naomi_D_Harvey

7 months

@jenbrea The treatment and lack of appropriate care for those with Severe ME in hospitals. This is a huge issue internationally, with patients at risk of death due to inappropriate hospital treatment

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zedsrigil

@sunsweptforest

6 months

@Really_Richelle @laurenancona @kittywifclaws So this is definitely something different from just the relief of having stopped actively torturing yourself by eating very spicy food?

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zedsrigil

@sunsweptforest

8 months

@uberpreeya Thanks for saying this. I know some ppl who are pretty covid safe and it's similar. Tbf, it's a big weight to acknowledge how awful everything is. But still. Not acknowledging it is...kinda weird.

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zedsrigil

@sunsweptforest

6 months

Want more NIH grant proposals approved for ME? If so, we need to emphasise the importance of the following in the Moonshot proposal: -explicitly including funding for ME research, -having a seat at the table on the Scientific Research Group and the Research Advisory Board

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zedsrigil

@sunsweptforest

8 months

'...uncamouflaged hostility toward ME patients raged inside NIH... Two years earlier at a scientific conference, I asked newly retired retrovirologist Frank Ruscetti, a Gallo lab veteran, how NIH scientists actually felt about ppl w ME. “They hate you,” Ruscetti responded.'

Hillary Johnson: journalist

@oslersweb

8 months

Can A Leopard Change its Spots? ME and the NIH

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zedsrigil

@sunsweptforest

8 months

Friends. Welcome back to ZedTalks(TM). This one is a bit different. This one is loving. This one starts w the observation that some of us are learning new things about the ppl responsible for the NIH paper. The shock of these discoveries is prompting the use of hurtful 1/

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zedsrigil

@sunsweptforest

7 months

An important piece by @JKBurmeister . It provides historical and advocacy context for the NIH paper--detailing some early advocacy efforts and successes in mitigating potential issues as well as some of the unkept promises made by NIH w regard to the project. 1/

Jeannette Burmeister

@JKBurmeister

7 months

I wrote an in-depth analysis of the history of the NIH intramural ME study and how the outcome--a psych label for ME--was predetermined by NIH's putting extremist ME denier Walitt in charge.

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zedsrigil

@sunsweptforest

8 months

human beings, rather than simply as a means to a successful career. I ask you to reconsider. I ask you to do better. Many of us believe that you can. Prove them right. 8/8

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zedsrigil

@sunsweptforest

6 months

Thanks to whoever reported me and got my account locked. Those "prove you're a human" challenges are incredibly cognitively taxing for me in my current situation w ME. So congrats on fucking up the rest of my cognitive function for today & however long. A real win for solidarity.

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zedsrigil

@sunsweptforest

8 months

This was a pre-pandemic study, especially vital for those of us who were sick before covid. And it could have been so much better, so easily. In our desire for concrete, useful findings, let's not overlook obvious limitations. 8/8

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@sunsweptforest

9 months

@victoriacoble15 Re: hair loss and weight loss -- have they checked your thyroid levels (eg, Graves disease)? If not, it only requires a single tube of blood and is a pretty standard test, so I imagine pushback on that would be less than for a lymphocyte panel, etc. Good to rule out.

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@sunsweptforest

8 months

@SurvivingCFS Sometimes additional anxiety is triggered by sensory and physical overload. Like, you feel anxiety at the thought of going out bc that's how your system is communicating to you that you're actually not well enough...

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@sunsweptforest

8 months

We deserve better. 25 years ago a member of my family who was severely, severely ill with ME/CFS killed themself in preemption of organ failure and starvation. 5/

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@sunsweptforest

8 months

Shame on every last one them. 7/7

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@sunsweptforest

8 months

Sympathetic to the conflicting interests that ME orgs are currently navigating. At the same time, the silence leaves a vacuum...and things are filling the vacuum, including from our own community. Narrator: It had not, in fact, already been a good year in NIH ME research. 1/

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@sunsweptforest

8 months

@TheFandelier @kate_the_purple And it magnifies the already massive difference between those w the privilege of staying home & resting appropriately when ill and those w/o it. So like you say, that's really the hardest part (for me anyway) to deal w. It's adding deliberate LC to deliberate infection.

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@sunsweptforest

8 months

to permanently risk their baseline in order to help you in your work. If you can't bring yourselves to be honest about obvious and egregious mistakes and ethical issues in the work of others, how can people with ME believe that you conduct your own research with integrity? 6/

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@sunsweptforest

9 months

@catladyactivist Some find conscious muscle relaxation periodically throughout the day helps, as jaw/neck tension exacerbates it. Might need a few weeks to notice an impact for some, while others notice rapid improvement. Ymmv.

Opinion | Relaxing Is a Skill. Here’s How to Do It. (Published 2022)

Letting the tension flow out of your muscles can improve your physical and mental well-being.

www.nytimes.com

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zedsrigil

@sunsweptforest

8 months

I could observe that science doesn’t take place in a vacuum, but it needn’t take place in an orgy of corruption, either. But I won’t get into all that properly, because I’m spent. I will say we deserve better. 4/

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@sunsweptforest

8 months

I could talk about the field day that government and private insurers will have with the declaration “these findings suggest that effort preference...is the defining motor behavior of this illness.” 3/

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zedsrigil

@sunsweptforest

8 months

It is embarrassing to walk back initial support of a project. But trust is an iterated game. Each day you choose to remain silent--to remain complicit--further damages your relationship with the very people you need most. The same people you purport to care about as 7/

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zedsrigil

@sunsweptforest

10 months

2) Just bc a journal looks unimpressive to you doesn't mean it is. Some small journals are incredibly prestigious amongst tight-knit specialist research communities. Some journals matter in Europe but not in the US, etc. Don't assume a journal is crap just bc *you* don't know it.

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zedsrigil

@sunsweptforest

8 months

myalgic encephalomyelitis/chronic fatigue syndrome. Why do you remain silent on this? Perhaps it’s because you’re concerned about your potential future research funding. Or about the standing of your institutions. Maybe you’re justifying this silence by telling yourselves 3/

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@sunsweptforest

8 months

you can do more good in your own research than as a voice of honesty and truth. These assessments are not without some validity. But they ignore great costs. One is the current safety of people with ME as they navigate the healthcare system and attempt to secure disability 4/

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@sunsweptforest

9 months

This can be difficult for those who are less severe to understand. And as some actually thrive off arguing, they ignore requests to respect boundaries of this kind. Such behaviour makes X less accessible to those experiencing this type of disability and robs the rest of 1/

Naomi Harvey PhD #WearAMask

@Naomi_D_Harvey

9 months

@MeierLowenthal For the majority of us, especially those severe or close to severe, our nervous systems exist on a hair trigger. Even mild confrontation can release a host of stress hormones & send our HR soaring. That stress is bad for our health, as bodies of pwME do not recover well.

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@sunsweptforest

8 months

Still thinking about this. Ngl, the potential implications are a bit chilling. 1/2

zedsrigil

@sunsweptforest

8 months

HR: “As Nath said, the study...was designed to set a framework for future funding & that was accomplished.” The Study: “[E]ffort preference...is the defining motor behavior of this illness.” “W time, reduction in physical activity leads to deconditioning & functional disability.”

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@sunsweptforest

7 months

@elle_carnitine Wish these people could be wiser, gentler, braver, and more humble. Sad for them and for all of us that they can't be more like you. Still, at least we do have you, and even one of you is pretty great 💚

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@sunsweptforest

11 months

@1goodtern There are so many different segments to reach...people who know but don't want to know, people who know but refuse to care, people who genuinely don't know... Requires multiple approaches. Including some kind ones highlighting desirables.

zedsrigil

@sunsweptforest

11 months

Looking for holiday-themed pro-mask messaging? Look no further! Here are new billboard designs highlighting the link between MASKING and HEALTHY, HAPPY holidays. 🧵 #BillboardBuyersClub #Holidays #MaskUp

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@sunsweptforest

8 months

and other means of financial support. Another is the trust that people with ME place in you. This trust pays for your research through patient-funded organizations (OMF, Solve ME, etc). It also provides you with participants in your scientific endeavors--people with ME willing 5/

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@sunsweptforest

10 months

Just in case you, too, needed to hear this today: 'many of the most resilient people I’ve ever met are ones who haven’t gotten better.'

Todd Davenport

@sunsopeningband

10 months

Good for this young person. I’m glad she recovered and she’s able to pursue the activities she wants to do. And, not that it should be a competition, but many of the most resilient people I’ve ever met are ones who haven’t gotten better.

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@sunsweptforest

8 months

presentation on some exciting preliminary data and analysis. This is the final product we're looking at--a whole paper published in a high visibility journal. And even for a journal culture that encourages ever-greater rhetorical grandiosity, some of the claims made about 3/

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@sunsweptforest

8 months

a long time. It's natural to want to look for the good in it, esp given what the patient participants went thru for it. (Thank you to each and every one of them.) And it's fine (and, to me, interesting) to do that. Just not at the expense of basic standards. 7/

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@sunsweptforest

6 months

I've been enjoying the discussion provoked by the new severity scale, including critiques. My two cents is we need to address the classism inherent in most (all?) existing scales (how can you be homebound w/o a home?)... 1/

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@sunsweptforest

7 months

Shout-out to all the LC caregivers and supportive friends / family / partners / allies on this Long Covid Awareness Day. Your love, support, energy and sacrifices mean a lot. Thanks for stepping up.

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@sunsweptforest

6 months

Question for the men of MEtwitter: do you find having a life-destroying neuroimmune disorder is an effective & proportional way to avoid unwanted sexual attentions? Like, is it really worth the effort (preference) as opposed to just telling your partner you're not in the mood?

Dr Keith Geraghty

@keithgeraghty

3 years

Warning this slide may upset: please do read this one @RCPhysicians @bodgoddard Are physicains claiming ME/CFS patients gain from having ME/CFS? I think this slide should form the basis of some complaint on this @NICEComms . "unwanted sexual attentions" really?

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@sunsweptforest

10 months

It's not uncommon for researchers to have difficulty getting controversial or innovative research published in more famous journals. You may be surprised to learn that genuine scientific inquiry and debate are not, in fact, the sole things journals care about.

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@sunsweptforest

7 months

It's *part* of any serious conversation about autoimmune disease. It's nice that this group found some results they think provide a useful direction for future research. But this is hardly groundbreaking stuff. What's weird is that they apparently didn't know this could be a 2/

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@sunsweptforest

8 months

@alexandrite113 Many of us don't have caregivers or potential caregivers if we get that severe, whether due to family/friends being unable (physical or financially) or unwilling. If you get that severe, with no financial or physical aid, your online presence disappears. And then you do.

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@sunsweptforest

8 months

Yesterday, the 75 contributors to this paper, the Nature Communications editorial board and peer reviewers, and every single “expert” who provided sycophantic quotes to the media all gathered together and took turns spitting on my family member’s grave. 6/

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@sunsweptforest

8 months

accident he kept the job. It’s not an accident the paper was published. It’s not an accident the conclusions in the paper financially benefit a lot of people who have a lot of influence. It’s not an accident BW also “researches” LC. If all this were a genuine cock-up, 10/

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@sunsweptforest

8 months

you'd have heard a lot more outrage from people who are a lot mouthier than @sunsopeningband . No one is coming for these guys. These guys came for us, and they got us. It’s not personal. It’s just business. What we get to do now is figure out if this changes how we use our 11/

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@sunsweptforest

11 months

Looking for holiday-themed pro-mask messaging? Look no further! Here are new billboard designs highlighting the link between MASKING and HEALTHY, HAPPY holidays. 🧵 #BillboardBuyersClub #Holidays #MaskUp

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