IV IG: Intravenous immunoglobulin infusions

[neophyte32]

But this Italian doctor does not seem to be a scammer. He has been active on X for a long time and follows many patients with Long COVID and ME/CFS.

Almost every week, he posts about patients who improve with the IVIG treatments he gives at his hospital.
It did not work for me, unfortunately...

He also seems to use IVIG quite often in adolescents. Maybe younger patients are simply more responsive than old 42 year olds like me, haha.

 

[N_Dina]

He doesn’t have a strong hypothesis about this intervention, was not given a research grant for this and seems to be very manipulative when it comes to any interactions with patients on X. That being said this everything doesn’t necessarily mean IVIG is not effective for some people. By the way, I think the results of RECOVER-AUTONOMIC Study (IVIG arm) are going to be announced soon.

 

[V.R.T.]

I think the results of RECOVER-AUTONOMIC Study (IVIG arm) are going to be announced soon.

Has there been a date for the results announced?

 

[N_Dina]

Has there been a date for the results announced?

I think they mentioned that the results may be announced in early November (or late October) somewhere online, but there is no specific timeline for this in the trial description. I saw on Reddit that trial centres are notifying participants whether they received the drug or the placebo.

 

[V.R.T.]

I think they mentioned that the results may be announced in early November (or late October) somewhere online, but there is no specific timeline for this in the trial description. I saw on Reddit that trial centres are notifying participants whether they received the drug or the placebo.

Oh yeah I just found that reddit post. Hopefully these results will bring a bit of clarity. Wish they'd studied pwPEM as well as POTS

 

[N_Dina]

Oh yeah I just found that reddit post. Hopefully these results will bring a bit of clarity. Wish they'd studied pwPEM as well as POTS

Somebody mentions April 2027 as the announcement month in the comments. Ah, we have all the time in the world to wait.

 

[Chandelier]

By the way, I think the results of RECOVER-AUTONOMIC Study (IVIG arm) are going to be announced soon.

Protocol thread.

 

[Jonathan Edwards]

But this Italian doctor does not seem to be a scammer. He has been active on X for a long time and follows many patients with Long COVID and ME/CFS.

Isn't a doctor active on X likely to be a scammer? I would have assumed it did. A doctor with a serious intent of testing a therapy and publishing results has no need to go on X in the meantime and would probably be well advised not to.

 

[ryanc97]

He is not a scammer. He is legit and he knows IVIG works because implicitly he also believes it’s autoimmune. And his success shows it’s autoimmune imo which of course I believe it to be LLPC related

Of course it doesn’t work for everyone but there is a general sense people on IVIG improve. I mean I’m one of them.

It and a whole bunch of other stuff has let me get better enough to the point where I can go back to work.

Granted I can’t do much outside of work except rest but I’m quite gratrful

 

[Jonathan Edwards]

He is not a scammer. He is legit and he knows IVIG works because implicitly he also believes it’s autoimmune.

If someone 'knows' that a treatment works because they believe in a theory, that is pretty much the definition of a scammer in this context. That is, after all, the whole ethos of the biopsychosocial people. You know what works because you believe it will. We need to do a bit better than that.

 

[ryanc97]

If someone 'knows' that a treatment works because they believe in a theory, that is pretty much the definition of a scammer in this context. That is, after all, the whole ethos of the biopsychosocial people. You know what works because you believe it will. We need to do a bit better than that.

I’m not going to debate with you because we’ve already debated this before. We will see in a few years when FM have made progress lol

In fact I’m confident enough I would put money on a wager with you that ME CFS is antibody related. but that’s besides the point.

 

[Eleanor]

He also seems to use IVIG quite often in adolescents. Maybe younger patients are simply more responsive than old 42 year olds like me, haha.

Or maybe younger patients are just more likely to recover (or recover sooner), regardless of what experimental interventions they do or don't try.

 

[fst]

I mean I’m one of them.

Out of interest, may I ask what dose you get (if you're willing to share of course).

I got approximately 0.5mg/kg one-time, after my IA, and while I think I had some improvements after the whole endeavor, it was definitely not a clear cut case for me. Mostly because I did not get another dose but continued to improve anyway. So I decided to wait for better data before wasting any more money.

 

[V.R.T.]

I mean I’m one of them.

Can you say this for certain though considering iirc you did dara around the same time you started IVIG? And the fact it could just be natural fluctuation?

 

[ryanc97]

Out of interest, may I ask what dose you get (if you're willing to share of course).

I got approximately 0.5mg/kg one-time, after my IA, and while I think I had some improvements after the whole endeavor, it was definitely not a clear cut case for me. Mostly because I did not get another dose but continued to improve anyway. So I decided to wait for better data before wasting any more money.

1mg / kg. My pain went overnight, muscles stopped twitching in a week, and mild POTS gone overnight.

I know this for POTS because usually when I wake in the morning my heart rate will skyrocket when I sit up and after eating my HR would also skyrocket.

After IVIG it stopped.

 

[ryanc97]

Can you say this for certain though considering iirc you did dara around the same time you started IVIG? And the fact it could just be natural fluctuation?

Let’s put it this way if I had IVIG last time I’m confident I wouldn’t have been fired from my last job.

I had very bad fatigue/brainfog, which is my main symptom, but I also had minor pain, pots and muscle twitching.

IVIG basically took away everything except fatigue and brainfog more or less overnight.

I was lying in the hospital bed getting my infusion and I had these random electric shock pains in my legs and joints which I’ve had every since my onset every day.

The next few days it basically went away and never came back.

 

[V.R.T.]

Let’s put it this way if I had IVIG last time I’m confident I wouldn’t have been fired from my last job.

I had very bad fatigue/brainfog, which is my main symptom, but I also had minor pain, pots and muscle twitching.

IVIG basically took away everything except fatigue and brainfog more or less overnight.

Did it improve your fatigue and brain fog at all?

 

[ryanc97]

Did it improve your fatigue and brain fog at all?

I didn’t notice much. But my fatigue and brainfog is manageable if there isn’t that annoying electric shock pain and joint pain and POTS.

What improved my fatigue was a routine of modafinil and Abilify.

I’m still tired as hell every day, but it feels more like “normal people tired” than the crushing ME fatigue.

 

[ryanc97]

I think it’s pretty hard to say it’s placebo when I had these electric shock pains ever since day 1 in January 2025 and since my first IVIG I don’t have them anymore. You can try and say it’s psychosomatic but I know better JE.

 

[Jonathan Edwards]

In fact I’m confident enough I would put money on a wager with you that ME CFS is antibody related. but that’s besides the point.

Exactly. It has nothing to do with the point being made about unethical behaviour. If this doctor has seen loads of children with ME/CFS why has he not made sure he has reliable evidence for his treatment being effective, and therefore, ethical?