People with #MECFS #LongCovid

Do you want to know who the doctor-activists who are lynching @NICEComms for banning graded exercise therapy & recommending pacing are?

Here’s the list ⬇️

FND = functional neurological (conversion) disorder

MUS = medically unexplained symptoms Psychiatrists & psychologis...Neurologists / neuropsychia...Other  Epidemiology & publi...
Of course, they are led by Peter White, the lead investigator of the PACE trial that NICE thoroughly debunked, and members of a (bio)psychosocial collaboration for “post-infectious fatigue” called COFFI.

A prime example of eminence-based medicine.

s4me.info/threads/snippe… PACE trial investigators  B...
If you have #LongCovid, I’m sure some of these names will be familiar to you already.

Be warned, #pwLC: that many proponents of “functional neurological disorders” (FND) co-authored this paper shows how much they want to get their hands not just on #MECFS but on LC too.

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More from @CyruxiME

Dec 17
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.
A month later (on 28 January) I suddenly crashed, with no warning sign beforehand.

That made me totally bedridden and hypersensitive to light, sound and touch. My nervous system went *completely* haywire.

To be able to sleep a bit, I took zolpidem (Ambien) for a month.
Read 9 tweets
Dec 17
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.
Same with ebastine, but we’re trying ketotifen so we’re leaving it out… still good to know.
Read 4 tweets
Aug 20
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
Terra Biological sell their oxaloacetate (OAA) supplement under the brand benaGene. The “CFS version” costs $500 for 6wks treatment.

Alan Cash has pushed OAA for glioblastoma, Alzheimer’s, premenstrual syndrome etc since at least 2006 (when Terra Biological was founded)

3/23
Read 26 tweets
Jul 9
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.
The reported modest improvement in trials of psychosomatic interventions can be explained solely by a combination of response bias on questionnaires because of behaviour modification, attention bias for therapist-delivered interventions due to inadequate control groups, —
Read 9 tweets
Jul 7
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
Regardless of the condition people with #LongCovid develop, these data are just terrible. Nearly 1.5 million people disabled in their daily activities.

“Long COVID symptoms adversely affected the day-to-day activities of 1.4 million people (72% of those with self-reported —
Read 5 tweets
Jun 30
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.
This study was conducted by #POTS experts @TeamSRRaj, @ArturFedorowski, Profs Robert Sheldon & Steven Vernino et al.
Read 4 tweets

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