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Oct 21, 2024 • 48 tweets • 7 min read
Friends. Let's talk about research design. Yes, this is about the Walitt & Nath paper, but also about ME & LC research more broadly. Never underestimate the impact of bad research in #GreatestMEdicalScandal
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A good research project begins with a question or an idea. Then with assessing the state of existing research. This forms the basis of a literature review.
A good, thorough lit review prevents unnecessary repetition of research (as opposed to useful replication)
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Oct 16, 2024 • 5 tweets • 1 min read
The reality is that many (if not most) ppl pushing harmful mind-body / FND / BPS understandings & approaches to ME are simply not interested in understanding the science of the condition. They defend their position bc it's their livelihood, their self-image, their reputation.
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Offering them logic, scientific evidence or lived experience will only be interpreted as an attack on their identity and their 'altruism'.
Engaging w them on X boosts their reach.
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Sep 25, 2024 • 4 tweets • 1 min read
I know a lot of folks are struggling w what they're hearing right now. I didn't expect anything different, tbh, & what I'm hoping for here is that some decent coverage on the abysmal state of LC / ME research comes out of it. Probably from @thesicktimes & possibly other outlets.
Obviously I'd much rather have *actual decent research* going on. But in the absence of that, we need media coverage we can share w ppl outside our bubble. Coverage that explains in an accessible way what is going on and, importantly, what is going very wrong.
Sep 19, 2024 • 10 tweets • 2 min read
When I post about pwME who can't access doctors (for reasons that run the gamut from being too sick to even do telethealth or being too poor) or about pwME who do not feel that recovery threads are a personal gift to them or about researchers that fail to do their homework or
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properly account for marginalised groups, this *does not* invalidate the challenges faced by pwME who *can* access doctors nor does it invalidate the sentiments of those who *do* receive recovery stories as a personal gift nor does it mean our researchers are total losers.
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Aug 8, 2024 • 8 tweets • 2 min read
#SevereME
'We only hear from people who are diagnosed. How hard was it for you to get diagnosed? ...
Of those who get diagnosed but become too sick to care for themselves, how many are lucky enough to have family or loved ones who will support them and take care of them? ... 1/
Even for diagnosed patients, there are few people in the world who have access to the care that is necessary to keep someone with severe ME/CFS alive.
I know how lucky I am.
It takes loved ones who are willing to give up their personal and professional lives, with enough
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Jul 13, 2024 • 8 tweets • 2 min read
This claim (made back in Feb) that LC is more severe than ME is both despicable & demonstrably false.
Nath knew it then and he knows it now.
But in contemplating his remark, I thought about all the things that've happened in the intervening time and that are about to happen. 1/
All the visibility achieved--the obvious refutations of his claim.
-We ran a widespread feedback campaign to get pwME included in the Sanders proposal
-The BBC is running stories on #SaveCarlasLife
-Both #GreatestMEdicalScandal and #JohnVsJonVsME have trended
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Jun 15, 2024 • 7 tweets • 2 min read
I'm unable to share most mainstream news articles on LC and ME with family or friends because somewhere in them is usually a quote from someone saying "oh yes, gentle exercise is good for some people with ME" and rarely in these articles is there a proper discussion of
how important it is to make sure the patient is not sacrificing other, more basic things, in order to meet these "gentle exercise" goals. There's no serious discussion of how damaging inappropriate "gentle exercise" is. There's no serious discussion about how hard it is to
Apr 19, 2024 • 5 tweets • 2 min read
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/
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.
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Apr 13, 2024 • 7 tweets • 2 min read
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
-and including ME in expedited review processes.
These things don't guarantee approval, obviously, but they would improve the odds.
Apr 11, 2024 • 5 tweets • 1 min read
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?)...
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and also whatever the "ism" is that would describe having loved ones and/or carer(s) -- esp ones that do their job well.
An advantage of addressing "trade-offs" in the scale (eg, if do A must sacrifice B) would be that it is both more accurate in describing
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Mar 23, 2024 • 6 tweets • 2 min read
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/
It also elucidates the roles/responsibilities of key personnel and their unscientific and bigoted views of ME/CFS--the institutional roots of which go farther into the past than you may prefer to believe. Jeannette supports her analysis by
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Mar 1, 2024 • 8 tweets • 2 min read
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
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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
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Feb 23, 2024 • 8 tweets • 2 min read
'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,
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I actually found a few of the biological measurements quite interesting, but I don't want to comment on any of those specifically bc I haven't done my due diligence on that (and do not have the capacity do to so).
The thing is, tho, this is not a low-impact conference
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Feb 23, 2024 • 7 tweets • 1 min read
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.
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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.
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Feb 22, 2024 • 12 tweets • 3 min read
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
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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
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Feb 12, 2024 • 4 tweets • 1 min read
ME/CFS is a ~chronic illness~, meaning it lasts a long time--often for the rest of a person’s life.
It is a ~multisystemic illness~, which means it affects the entire body as opposed to just one part or one system of the body.
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It is a ~spectrum illness~ which means it can manifest along a range from mild to very severe. (Think of the last time your whole family came down with a virus. Some of you got sicker than others, right? ME is like that.)
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Feb 10, 2024 • 4 tweets • 1 min read
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
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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.
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