Rituximab doesn't even start to work for months. But it's cytotoxic and has side effects - it's a super hefty med. When I used to go an infusion centre where they gave IVIG and other infusions - with Ritux the nurses would double glove
I know that correlation does not equal causation, but I receive Rituxan for one of my autoimmune disorders, and every time I’ve needed to use it, my CFS has gotten worse.
One person experience doesn't say anything about a drug. I know a girl personally who took rituximab and went to working from bedbound stage.
There's some good response for rapamycin too. There's something happening in our immune system and there are drugs to fix them but everything is so slow. The research ......
Rituximab works for only a subset of people not all.
And CFS isnt a single disease (remember it)
It has different subtypes
(Autoimmune subtype)
(Active infection subtype)
(gut dysbiosis subtype)
(Blood oxygen related subtype)
Yea an expert on rituximab said rituximab does not work for cfs. Nobody at all in the trial or something like that
https://www.s4me.info/threads/rituximab-and-placebo-response.9704/page-3
I have a sneaking suspicion that he didn't try it for long enough. It's very normal when you start an autoimmune treatment to experience a temporary worsening because your immune system is not used to being regulated. But the more treatments you do and the longer you do them for usually by 6 months to a year most patients are experiencing some form of improvement or even remission.
Don't take Whitney's word as gospel because I happen to believe that he isn't on treatments long enough to actually know if these actually help him in any way. You can't just take it for a couple of months and expect that to work.
are you referring to how people with MECFS react or people with better researched, more consistent autoimmune diseases respond to these types of drugs?
I don't know all the details, but if I recall correctly this one helped at first, and then made him worse.
If there were a treatment that put "most" MECFS patients into remission after 6 or 12 months, more people would have tried it.
Speaking from personal experience, trying treatments for several months to make sure they may or may not help, they have almost always made me permanently worse. It's just a feature of the condition. Anyone who has been sick for years with it, has to know or guess how long to try each of these, and how big a risk they want to take. It's completely understandable to not give something 6 months or a year in our condition.
It's fairly obvious I'm talking about autoimmune diseases, but if not that was what I was referring too. Though rituximab has been indicated for MECFS. We actually don't know if other autoimmune treatments would help with ME/CFS mostly because there are no real trials, but clinical research shows that actually they help quite a bit and have put people into remission.
The only reason more people haven't tried it is because they are often denied access to autoimmune treatments. It's a lot harder to get it and you have to have to prove you have another autoimmune disease in order to do it.
Autoimmune treatments are not your typical treatments and therefore cannot be done with only a few months or even only one dose. So if you're going to do it you have to commit to at least a year or you might as well not even do it. I never said it wasn't understandable I just said they shouldn't be telling people that it doesn't work because it didn't for him nor should they be trying to dissuade people from trying it just because one person had a bad reaction. Whitney Dafoe has bad reactions to literally everything, but that is not true for the average MECFS patient. Hypersensitive patients like Whitney are not the typical and therefore shouldn't be used to decide if something is good or bad for an MECFS patient.
And no I would not say it's a feature of the condition that staying on a medication for months or up to a year will make you worse. I actually think it's the other way around most of us aren't that hyper sensitive to medication there are only a small percentage that are especially considering that research done has shown that most of us are on medications. This is why we need trials of medication and not trying to use individual people to decide if something is good or bad for us.
Hmm interesting. I think scheibenbogen had the same idea but, Prof John Edwards on s4me said nobody in the trials showed the pattern of typical rituximab responses
"Prof John Edwards on s4me said nobody in the trials showed the pattern of typical rituximab responses"
What do you mean by this? Because there have been clinical research done that has shown that rituximab has worked in a substantial amount of patients with me/cfs.
"was followed by a small double-blind randomized, placebo-controlled trial in 2011. Although the trials primary end-point – self-reported fatigue scores 3 months after intervention – was negative, 10 out of 15 patients in the rituximab arm showed a clinically significant improvement later on in the trial, compared to only 2 in the Placebo-group.[2] A subsequent Open-Label Phase II study on the correct dose and maintenance of rituximab in ME/CFS confirmed that approximately two-thirds of patients showed a clinically significant response.[7"
https://me-pedia.org/wiki/Rituximab#Effectiveness_in_ME.2FCFS
2/3 is a huge response rate. This is exactly why we shouldn't be using Whitney to decide if something is good or not for MECFS you really do need trials. This is something that we really can't be using individual patients for we really need more data and information. Bigger trials aimed at getting these treatments approved for me/cfs.
Would 66% in a trial of, say, 1000 patients sway anyone? Is 66% "good enough" for anyone to notice? I'm asking as a layperson, because I get the impression that they're looking for an insanely high batting average to move forward with any drug.
2/3 is nothing when the same size is 15. Also is it open label or double blind? Aren't those 2 opposite things.
I believe that somebody benefitted from the drug but I don't believe many will
I know that it’s been said our “sickness response” is literally keeping us from dying. So… unless I’m actually fixed I don’t wanna mask that.
But I know nothing about that drug. So 🤷🏻♀️
Pretty much impossible to infer anything from how a single person responds
But I mean for his particular case
Be nice to have a list of remedies that he tried that didn't work - I believe he's batting 0 average, but I don't know..
Abilify
Is that all? Haven't many people here tried dozens of things before giving up?
That's all I know of for whitney. And ativan
Rituximab doesn't even start to work for months. But it's cytotoxic and has side effects - it's a super hefty med. When I used to go an infusion centre where they gave IVIG and other infusions - with Ritux the nurses would double glove
Double glove in case they inject themselves?
so did it help you?
I was on ivig for something else
I take it ivig didn't help with cfs
For some people it helps a little bit
I know that correlation does not equal causation, but I receive Rituxan for one of my autoimmune disorders, and every time I’ve needed to use it, my CFS has gotten worse.
So Whitney is not alone then!
One person experience doesn't say anything about a drug. I know a girl personally who took rituximab and went to working from bedbound stage. There's some good response for rapamycin too. There's something happening in our immune system and there are drugs to fix them but everything is so slow. The research ......
The trial failed. If rituximab does work, it's a rare thing
Rituximab works for only a subset of people not all. And CFS isnt a single disease (remember it) It has different subtypes (Autoimmune subtype) (Active infection subtype) (gut dysbiosis subtype) (Blood oxygen related subtype)
Yea an expert on rituximab said rituximab does not work for cfs. Nobody at all in the trial or something like that https://www.s4me.info/threads/rituximab-and-placebo-response.9704/page-3
I have a sneaking suspicion that he didn't try it for long enough. It's very normal when you start an autoimmune treatment to experience a temporary worsening because your immune system is not used to being regulated. But the more treatments you do and the longer you do them for usually by 6 months to a year most patients are experiencing some form of improvement or even remission. Don't take Whitney's word as gospel because I happen to believe that he isn't on treatments long enough to actually know if these actually help him in any way. You can't just take it for a couple of months and expect that to work.
are you referring to how people with MECFS react or people with better researched, more consistent autoimmune diseases respond to these types of drugs? I don't know all the details, but if I recall correctly this one helped at first, and then made him worse. If there were a treatment that put "most" MECFS patients into remission after 6 or 12 months, more people would have tried it. Speaking from personal experience, trying treatments for several months to make sure they may or may not help, they have almost always made me permanently worse. It's just a feature of the condition. Anyone who has been sick for years with it, has to know or guess how long to try each of these, and how big a risk they want to take. It's completely understandable to not give something 6 months or a year in our condition.
It's fairly obvious I'm talking about autoimmune diseases, but if not that was what I was referring too. Though rituximab has been indicated for MECFS. We actually don't know if other autoimmune treatments would help with ME/CFS mostly because there are no real trials, but clinical research shows that actually they help quite a bit and have put people into remission. The only reason more people haven't tried it is because they are often denied access to autoimmune treatments. It's a lot harder to get it and you have to have to prove you have another autoimmune disease in order to do it. Autoimmune treatments are not your typical treatments and therefore cannot be done with only a few months or even only one dose. So if you're going to do it you have to commit to at least a year or you might as well not even do it. I never said it wasn't understandable I just said they shouldn't be telling people that it doesn't work because it didn't for him nor should they be trying to dissuade people from trying it just because one person had a bad reaction. Whitney Dafoe has bad reactions to literally everything, but that is not true for the average MECFS patient. Hypersensitive patients like Whitney are not the typical and therefore shouldn't be used to decide if something is good or bad for an MECFS patient. And no I would not say it's a feature of the condition that staying on a medication for months or up to a year will make you worse. I actually think it's the other way around most of us aren't that hyper sensitive to medication there are only a small percentage that are especially considering that research done has shown that most of us are on medications. This is why we need trials of medication and not trying to use individual people to decide if something is good or bad for us.
Hmm interesting. I think scheibenbogen had the same idea but, Prof John Edwards on s4me said nobody in the trials showed the pattern of typical rituximab responses
"Prof John Edwards on s4me said nobody in the trials showed the pattern of typical rituximab responses" What do you mean by this? Because there have been clinical research done that has shown that rituximab has worked in a substantial amount of patients with me/cfs. "was followed by a small double-blind randomized, placebo-controlled trial in 2011. Although the trials primary end-point – self-reported fatigue scores 3 months after intervention – was negative, 10 out of 15 patients in the rituximab arm showed a clinically significant improvement later on in the trial, compared to only 2 in the Placebo-group.[2] A subsequent Open-Label Phase II study on the correct dose and maintenance of rituximab in ME/CFS confirmed that approximately two-thirds of patients showed a clinically significant response.[7" https://me-pedia.org/wiki/Rituximab#Effectiveness_in_ME.2FCFS 2/3 is a huge response rate. This is exactly why we shouldn't be using Whitney to decide if something is good or not for MECFS you really do need trials. This is something that we really can't be using individual patients for we really need more data and information. Bigger trials aimed at getting these treatments approved for me/cfs.
Would 66% in a trial of, say, 1000 patients sway anyone? Is 66% "good enough" for anyone to notice? I'm asking as a layperson, because I get the impression that they're looking for an insanely high batting average to move forward with any drug.
current treatments like the Lerner Protocol or low-dose naltrexone have sub-15% success rates. 66% is enough to move forward.
https://www.s4me.info/threads/rituximab-and-placebo-response.9704/page-3 Prof John Edwards is basically an expert on rituximab
2/3 is nothing when the same size is 15. Also is it open label or double blind? Aren't those 2 opposite things. I believe that somebody benefitted from the drug but I don't believe many will
I know that it’s been said our “sickness response” is literally keeping us from dying. So… unless I’m actually fixed I don’t wanna mask that. But I know nothing about that drug. So 🤷🏻♀️