IV IG: Intravenous immunoglobulin infusions

https://twitter.com/user/status/1897189338594615449



My son, 13, with Long Covid and polyneuropathy has been receiving intensive immunoglobulin infusion therapy (IVIG) since January 25.
Previously Bell 10 for a year, now within 2 months it has risen to Bell 50, and the trend is rising.
PEM almost no longer exists.

He can hardly believe his luck - and neither can we.

Everyone with Long Covid and ME/CFS should have the chance to receive this treatment option.

 

https://me-pedia.org/wiki/Bell_CFIDS_disability_scale

 

We probably should wait for the blinded placebo-controlled studies before offering it to everyone. I’ve seen patient reports of bad side-effects elsewhere.

 

Are any being done?
I agree with you, i wouldnt want it without them.
But I just wondered.

 

There’s at least this one
https://trials.recovercovid.org/autonomic-group-a

 

On a brainfoggy low capacity brain it’s really hard to tell what has promise and what is pure hype.

I’ve simplified it for myself by assuming everything is pure hype until either a well done RCT shows promise or the consensus on this forum seems to be it shows promise.

 

this is exactly my approach too!

 

If that had been everyone's assumption about everything (which it should be), we'd never have had 40 years of psychobabble for ME/CFS.

 

I wish seeing an RCT on an intervention was enough but as we have seen all too often the studies are based on subjective measures and the results don't seem to translate into any improvement for the people that try them after positive results in the study. GET and CBT both got results in the trials and as we know they don't work. We badly need a proxy biomarker that is at least correlated with severity.

 

@Jonathan Edwards

If IV IG works, can you please explain the putative mechanism? Something involving FcRn https://en.wikipedia.org/wiki/Neonatal_fragment_crystallizable_receptor?

Thank you.

 

There have been RCTs done.

https://me-pedia.org/wiki/Intravenous_immunoglobulin

 

Hence, "well done RCT". i don't think anyone can argue any of the psycho behavioural RCTs were well done due to myriad reasons like overstating result and relying on subjective outcomes with high risk of bias (bias often suspiciously accentuated by the investigators).

 

Nath also ran an IVIG Long-Covid trial (https://clinicaltrials.gov/study/NCT05350774), which was super short. The Recover IVIG trial also had an exercise component or was that removed?

 

Seems like there was one arm without exercise. That is there are 4 arms IVIG+exercise program+
lifestyle modifications, Placebo+exercise program+lifestyle modifications, Placebo+usual care, IVIG+usual care.

I suppose if you're trialling IVIG+exercise you probably don't believe in IVIG in the first place.

 

Or you’re clueless about PEM and LC in general.

 

IVIg is easy enough today blinded trials and very easy today dose responser study, which would be even better. Subjective outcome measures are fine under those conditions.

In fact in PACE the greater improvement seen with GET and CBT was so miserable that they had to stretch the Y axis to show it. Even if the trial had been blinded the 'benefits' wouldn't have been worth the effort.

 

I have no idea of a mechanism. IVIg probably works a bit for immune thrombocytopenia (maybe not much else). I t could work by distracting clearance mechanisms that gobble up platelets coated in immune complexes or something like that.

 

aint that the truth!