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Cyrus | Mastodon in bio Profile picture
Cyrus | Mastodon in bio
@CyruxiME
Energetically compromised by severe #MECFS. All systems operating at minimum capacity & overloaded. he/him. On the Fediverse: @CyruxiME@toot.aquilenet.fr
Dec 17, 2022 • 9 tweets • 3 min read
On this day one year ago, I was in the operating room for appendicitis that had turned into peritonitis.

The surgeon saved my life but the infection threw me from being housebound with moderate #MECFS to severe & bedridden.

I’ve only gotten worse since. Yet… I’m still here. 🙏 At the hospital, I woke up so weirdly wired from the anesthesia. It sort of paralyzed me.

The worst came after - 2 days of a death-like crash with whole body internal tremors that left me so weak I could barely speak.

But that wasn’t actually the worst part yet.
Dec 17, 2022 • 4 tweets • 1 min read
My GP is amazing but, for the hundredth time, he really needs to be more careful. He prescribed me erithromycin for gastroparesis, which interacts with a lot of drugs (CYP inhibitor)… including domperidone, which he told me I could continue taking. 😬

#MECFS #pwME #NEISvoid The contraindication is explicitly written in the leaflet of the box of erithromycin.
Oct 6, 2022 • 5 tweets • 2 min read
@Leya_MK Ce n’est pas que c’est pas assez prouvé : il y a eu des centaines d’essais cliniques tous aussi mal foutus les uns que les autres qui, même avec leurs biais, ne montrent pas plus qu’un effet de taille modeste attribuable à un biais de réponse et/ou de performance. @Leya_MK Vous êtes attachée à la pratique basée sur les preuves : il faut les prendre en compte (et leurs défauts avec).

Malgré des décennies de “recherche”, on attend toujours de voir un essai clinique bien réalisé, avec des mesures objectives qui montrent aussi une amélioration.
Aug 20, 2022 • 26 tweets • 10 min read
A reanalysis of the oxaloacetate trial for #LongCovid and #MECFS

As promised, I’m now sharing my findings. Here’s a summary of what’s wrong with this trial.

(If you want to dive into the report I sent to the editor of the journal ➡️ drive.google.com/file/d/1wBJrMd…)

🧵 1/23 Quick recap first.

The trial was funded by Terra Biological LLC. It was run by:

- Founder & CEO Alan Cash, who analyzed the data & wrote the manuscript 🚩

- Dr David Kaufman, a ME/CFS specialist in California: the participants were recruited from his practice

2/23
Jul 9, 2022 • 9 tweets • 3 min read
Disappointed that @SBMPediatrics abides by the biopsychosocial (psychosomatic) model of chronic pain, despite all its evidence base being a tangled mess of confusion between correlation and causation.

What will it take for skeptics to see through it?

sciencebasedmedicine.org/swearing-to-tr… The blog post is a fair critique of this intervention. But no, psychosocial factors *do not* explain chronic pain. The evidence for psychosomatic treatments (exercise, CBT..) consistently shows modest effect sizes despite high risk of bias: no blinding + only subjective outcomes.
Jul 7, 2022 • 5 tweets • 3 min read
Among the 3.0% people with self-reported #LongCovid, 21% have been ill for 2 years or more = prevalence of 0.63%.

This isn’t far off from the usually reported prevalences of #MECFS — 0.42% (@mecfsbiobank) or 0.5%.

We’re possibly doubling the number of #pwME. Scary. Just scary. Important caveat: of course, not all people with durable #LongCovid have developed #MECFS.

The @ONS stats include people with well recognized organ damage from Covid, and some may have developed post-infectious conditions with symptoms that overlap those of ME but aren’t ME, etc
Jun 30, 2022 • 4 tweets • 3 min read
New important study

81 healthy controls & 116 #POTS pts had similar levels of autoantibodies against G-protein coupled receptors, suggesting GPCR AAB tests are “not useful for establishing the role of autoimmunity in POTS”

ahajournals.org/doi/10.1161/CI…

#LongCovid #MECFS #NEISvoid Currently, the only two labs that commercially offer GPCR AAB tests are Celltrend and Berlin Cures (AFAIK). Better save your money for something else.
Jun 28, 2022 • 5 tweets • 2 min read
This oxaloacetate study from Dr David Kaufman (#MECFS specialist) was funded by Terra Biological LLC, founded by the lead author Alan Cash.

At the doses used in the study, the supplement costs $84 to $168 per month.

The study is ridiculously bad otherwise (1/2)

#LongCovid 1. Outcome measures: flawed fatigue questionnaires

2. Inadequate control group selected from a small, old study of another drug

3. Cherry-picking of results to boost the % “improved” patients (arbitrary cut-off value of Chalder fatigue score)

4. 37% drop-out rate in LC group
Sep 15, 2021 • 4 tweets • 2 min read
I still don’t understand what releasing the guideline achieves, except potentially jeopardizing a 3/4 year process that’s hugely important to #pwME

If the point is to compare versions of the guideline in case of a change, the current one could have been released after the fact And if the point is to reassure #pwME because we’re all frustrated, angry and worried, then @ValerieEliotSmit could just have confirmed that the guideline are basically the same as the draft version

@ValeriEliotSmit says she’ll take full responsibility of the legal consequences
Aug 28, 2021 • 8 tweets • 2 min read
The strategy of the proponents of graded exercise therapy and CBT for #MEcfs 👇

They want to bump the rating of GET/CBT studies up by one grade (eg low -> moderate) by removing “population indirectness”

That means removing PEM from @NICEComms’ updated case definition of ME/CFS GET/CBT studies used CFS criteria that didn’t require PEM.

Because NICE have now added PEM to their criteria, they considered it when reviewing evidence, and they said it’s unclear if the results of the studies apply to ppl with PEM

That’s “population indirectness”
Aug 7, 2021 • 17 tweets • 10 min read
The strength it takes to live with #SevereME for decades defies understanding

Let alone when it begins in childhood, preemptively deleting the opportunities and joys of a normal life

Left having to fight for yourself in the midst of debilitating illness with little to no help And then most healthy people dare to say #severeME is fake/malingering or too much complaining, then to deny it or give BS advice?

Please, feel free to get in the shoes of a #pwME for a few years. The #millionsmissing have left plenty of them on the roadside for you to try.
Jun 24, 2021 • 8 tweets • 10 min read
@ssppeerroo @davidtuller1 @TomKindlon Another article with interviews of eminent professors of medicine claiming to have been harassed for their positions on GET/CBT.

Why doesn’t it detail the clear methodological problems with GET/CBT trials instead of saying “there’s no consensus”?

Poor reporting @Melanie_Newman @ssppeerroo @davidtuller1 @TomKindlon @Melanie_Newman It’s ironic that at the top of the article, there’s a linked opinion about the power imbalance between doctors and #LongCovid patients (also applies to #pwME

It’s what this article perpetuates.

Patients are siding with science, not biased research

blogs.bmj.com/bmj/?p=50499