Why do the Fluge/Mella trials seem to be more successful than off/trial reports?

Jesse2233

Jesse2233

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Hip said:
Yes, in chronic coxsackievirus B myocarditis (viral heart muscle infection), the virus appears to give rise to an autoantibody that targets the translocator protein in mitochondria, thereby causing mitochondrial dysfunction, and a low energy state in the heart. More info in this post.
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@Hip under that model are antiviral supplements/ drugs still theoretically effective? In other words is there still an active virus causing symptoms?
 
eljefe19

eljefe19

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Hip said:
On these forums, the response rate of those who posted their rituximab results has not been very good. Out of the 14 people on this forum who I saw posted their results, only 1 person had a very good response, another 1 or 2 had moderate to mild responses, and the rest did not respond.

However, in some cases there were only minimal details posted, so it was not clear what rituximab protocol they followed, how long they followed it for, nor even whether they had ME/CFS in the first place by the strict CCC definition.

It's possible that there are others on the various ME/CFS forums that are getting some positive responses from rituximab, but they prefer not to post about it.

I think there was some concern that posting your rituximab results on a public forum could affect the outcome of the Fluge and Mella phase III rituximab clinical trial, which is still ongoing, but I don't remember the reason for this.

The rituximab results of the Kolibri Medical hospital in Norway are positive though, see this post. Not sure about the Open Medicine Institute's rituximab response rate.
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@Hip Per Dr Kaufman at OMI their results match up with the available data the Norwegians have produced so far.
 
Hip

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Jesse2233 said:
@Hip under that model are antiviral supplements/ drugs still theoretically effective? In other words is there still an active virus causing symptoms?
Click to expand...

There is an active viral infection in chronic coxsackievirus B myocarditis, which is associated with the autoimmunity, and this infection may be the ongoing cause of the autoimmunity.

However, this chronic active viral infection is a rather unusual form of the enterovirus, called a non-cytolytic enterovirus, which because it lives inside cells as a chronic smoldering intracellular infection, requires a different approach to treat. Non-cytolytic enteroviruses are found in the tissues of ME/CFS patients as well.
 
Jesse2233

Jesse2233

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Hip said:
There is an active viral infection in chronic coxsackievirus B myocarditis, which is associated with the autoimmunity, and this infection may be the ongoing cause of the autoimmunity.

However, this chronic active viral infection is a rather unusual form of the enterovirus, called a non-cytolytic enterovirus, which because it lives inside cells as a chronic smoldering intracellular infection, requires a different approach to treat. Non-cytolytic enteroviruses are found in the tissues of ME/CFS patients as well.
Click to expand...

thanks @Hip, and how might Rituximab target these non-cytolytic enteroviruses?
 
Hip

Hip

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Jesse2233 said:
thanks @Hip, and how might Rituximab target these non-cytolytic enteroviruses?
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It won't, but if ME/CFS is caused by autoimmunity triggered by enterovirus (or another pathogen), or equally if ME/CFS is caused by autoimmunity unrelated to any infection, then rituximab may cure the ME/CFS by addressing this autoimmunity.
 
Jesse2233

Jesse2233

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Hip said:
It won't, but if ME/CFS is caused by autoimmunity triggered by enterovirus (or another pathogen), or equally if ME/CFS is caused by autoimmunity unrelated to any infection, then rituximab may cure the ME/CFS by addressing this autoimmunity.
Click to expand...

Hmm then how to explain positive results from both approaches? Ongoing enterovirus infection causing autoimmunity?

If that were the case, then depleting B-cells would still leave the viruses present in their non-cytolytic state. What am I missing?
 
Gingergrrl

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Hip said:
It won't, but if ME/CFS is caused by autoimmunity triggered by enterovirus (or another pathogen), or equally if ME/CFS is caused by autoimmunity unrelated to any infection, then rituximab may cure the ME/CFS by addressing this autoimmunity.
Click to expand...

Thanks @Hip and I believe that this is the subgroup that I am in (whatever name my illness is ultimately given). My doctor calls it a "B-Cell autoantibody dependent disease" and I think that is a pretty good match for my experience and why I so badly hope to get to try RTX.
 
eljefe19

eljefe19

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Gingergrrl said:
Thanks @Hip and I believe that this is the subgroup that I am in (whatever name my illness is ultimately given). My doctor calls it a "B-Cell autoantibody dependent disease" and I think that is a pretty good match for my experience and why I so badly hope to get to try RTX.
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Ginger what is your plan to try and get RTX through insurance?
 
Gingergrrl

Gingergrrl

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eljefe19 said:
Ginger what is your plan to try and get RTX through insurance?
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My doctor is going to request it from my insurance based on my entire clinical picture and eleven auto-antibodies and my positive response to high dose IVIG. If RTX could be a more permanent solution (vs. IVIG usually being of temporary benefit) then they might go for it. We plan to be denied and have to appeal the first 2-3 requests. I would do the RTX at the same local infusion center where I do IVIG b/c my local doctor on board, too. (I do not mention the doctors names or insurance name on public board and am sure you can understand)! My back up plan is to apply for the patient assistance program through Genentech but have not looked into this yet and not certain if it still exists or if I would qualify clinically. I definitely qualify financially.
 
Hip

Hip

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Jesse2233 said:
Hmm then how to explain positive results from both approaches? Ongoing enterovirus infection causing autoimmunity?
Click to expand...

I don't think we have this information, unless they have investigated the rituximab and virus connection at the OMI. Accurate testing for coxsackievirus B / echovirus requires a sensitive plaque reduction neutralization test or a micro-neutralization test as performed at ARUP lab, or specialist stomach biopsy test performed by Dr Chia's lab.

I am not sure if anyone has looked into the specific effects of rituximab in ME/CFS patients with an active enterovirus infection, to gauge what the rituximab success rate is in enterovirus associated ME/CFS.


Not much is known about if or how infection might cause autoimmunity, but conceivably, there may be two logical possibilities: (1) the acute infection triggers autoimmunity, but thereafter the chronic infection plays no further role in maintaining the autoimmune process; (2) the infection triggers autoimmunity, and the chronic infection is an ongoing cause which maintains the autoimmunity.

In case (1), rituximab would work by clearing the autoimmunity that had been triggered as a one-off event by the acute infection. In case (2), perhaps rituximab will clear the autoimmunity for a while, but possibly the autoimmunity might later reappear because of the ongoing infection

We know that in some cases, rituximab seems to cure ME/CFS for good (or for some years anyway); in other cases, the ME/CFS symptoms return after a year or so, and further rituximab treatment is required.


But I am just guessing here. I know very little about autoimmunity, so take the above with a pinch of salt.
 
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eljefe19

eljefe19

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@Jesse2233 you should move your above post to my thread. That's the whole goal there is to bring in the experts on the latest science.
 
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