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Jun 30 • 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.
This study was conducted by #POTS experts @TeamSRRaj, @ArturFedorowski, Profs Robert Sheldon & Steven Vernino et al.
Note: this study used an ELISA test, which detects non-functional AABs. The results may be different with functional GPCR AAB tests.

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More from @CyruxiME

Cyrus Profile picture
Jun 28
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
Sources:

Terra Biological: terrabiological.com

Oxaloacetate supplement: benagene.com/products/benag…

Please don’t waste your money & hopes on this…
Read 5 tweets
Cyrus Profile picture
Sep 15, 2021
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
of disclosing the guideline. But if there are non-legal consequences, they’ll affect all #pwME because of the decision of 1 person

Wonder what the patients who worked for 3-4yrs as lay members of the NICE guideline development committee think of the situation.
Read 4 tweets
Cyrus Profile picture
Aug 28, 2021
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”
With GRADE (= methodological process that NICE use to rate evidence quality), population indirectness lowers rating of evidence quality (eg moderate -> low)

Removing PEM from NICE’s updated definition of ME/CFS is the only way to remove population indirectness in GRADE rating
Read 8 tweets
Cyrus Profile picture
Aug 7, 2021
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.
On the #SevereME menu: at a bare minimum, a dozen symptoms that leave you bedbound 24/7

Unable to tolerate light, sound, touch, smells, to think, speak and move

Requiring assistance to eat, shower, use the toilet

The smallest thing you do flares your symptoms for days or weeks
Read 17 tweets
Cyrus Profile picture
Jun 24, 2021
@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
@ssppeerroo @davidtuller1 @TomKindlon @Melanie_Newman FYI @Melanie_Newman

- NICE rated all GET/CBT trials as (very) low quality on all outcomes because of systematic biases. This expert testimony to NICE explains why nice.org.uk/guidance/gid-n…

-A court in 2016 found no evidence for harassment, said claims had been grossly exaggerated
Read 8 tweets

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