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USA & Norway Governments Show Post-Sepsis EBV and Rituximab

Messages
41
We are certain you’ve all seen by now the final public admissions by the Governments of Norway and the United States that ME/CFS and Chronic Lyme are really the same thing as post-sepsis syndrome, with the terrible post-sepsis immunosuppression and chronic active herpes viruses, fungal-induced immunosuppression, cross-tolerance and extreme fatigue. Also, the treatment with Rituximab and the stunning cure rate with this anti-EBV drug (CD20 is a marker for an B cells, which is where EBV hides out, which is why it is used in Leukemia and Multiple Sclerosis) confirms the mechanism of disease.

Before we even start, please read these 4 reports:

2014: Washington University, St. Louis, MO, discovers that sepsis is like Lyme, in that the survivors of it are likely to have survived via the immunosuppression (TLR2-agonist tolerance/Endotoxin tolerance), but the result is the reactivation of latent viruses:
“Dormant viruses re-emerge in patients with lingering sepsis, signaling immune suppression”http://news.wustl.edu/news/Pages/27015.aspx

FULL JOURNAL REPORT
“Reactivation of Multiple Viruses in Patients with Sepsis”http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0098819

NIH, 2014, “Surviving Sepsis: Detection and Treatment Advances” By Carolyn Beans for the National Institutes of Health | August 18, 2014 08:43am ET
http://www.livescience.com/47387-sepsis-diagnosis-treatment-research-nigms.html

Here, in the 1950s, they show you can’t inject fungi together with viruses or you get the reactivated viruses:

“IV. THE RELATIONSHIP OF EPERYTHROZOON COCCOIDES TO THE HEPATITIS VIRUS OF PRINCETON MICE”

“In Swiss mice, animals with high natural resistance to hepatitis virus, the pathogenicity of this agent was markedly enhanced by combined infection with eperythrozoa. Eperythrozoa were maintained throughout 18 successive passages in normal Princeton and Swiss weanlings with intact spleens. The combined infection of Princeton mice with eperythrozoa and the virus component of Gledhill, Dick, and Andrewes, which is nearly inactive when injected alone, resulted in acute hepatitis with fatal outcome.”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2136329/?tool=pubmed


full article - http://www.allmov.org/usa-norway-governments-show-post-sepsis-ebv-and-rituximab/
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I see no such admissions, just a claim to such admissions. @Alexandru Matei - can you post exactly where either the Norway or US governments have made such an admission? Preferably both.

I do know the Norwegian government (health department?) has apologized to ME/CFS patients, and now even the Norwegian Prime Minister has, for how we have been treated. That is not the same thing.

The article (I could not follow that link it was blocked, but its been replicated on many sites it appears) is a confused spam infoblast. Such methods of argument, spamming maybe vaguely related information, can confuse and mislead.

It would be nice if it had clearly articulated points, substantiated one by one. It would be even better if those points followed each other and the evidence in a clear rational fashion.

Post Lyme may well be very similar to other post infectious diseases, from polio to Q fever.

If any of these are post sepsis then they are post subclinical sepsis. Sepsis is frequently fatal.

I will try to work my way through some of the claims later.
 

msf

Senior Member
Messages
3,650
The theory also seems to ignore the fact that the Rituximab effect seems to be from the reduction in plasma cells after 6 months rather than the depletion of B cells themselves.
 

msf

Senior Member
Messages
3,650
Also, the effect on sepsis on reactivation was not shown to be permanent, so there isn't an exact parallel with the ongoing immune suppression and frequent herpes virus reactivations observed in ME. This isn't surprising when you consider the fact that sepsis is an acute condition and ME a chronic one.
 
Messages
41
You haven't read the article in seems, at the very bottom there is a link to the full article.

You can use Google as well to find more information about this trial ;)

That's the main problem - people are in fact suffering from post-sepsis syndrome. The immune system is shut. I am in a hurry, please use google to find more information on this trial.

here's another link http://www.allmov.org/usa-norway-governments-show-post-sepsis-ebv-and-rituximab/

Post Sepsis Syndrome - http://www.sepsisalliance.org/sepsis/post_sepsis_syndrome/


PS @Alex, nothing is misleading you got two links where valid information on the Rituximab trial is posted. There are a lot of websites that picked up this news (logically) doesn't mean it's spam.

Did you know about the study?

Good luck.
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I have seen the full article. I am working my way through it. Again, its a spam infoblast, and is very confused. Whether it is right is a separate question, but I found a whole lot of reasoning errors without trying very hard.

My spam reference was to a spam infoblast. Its about spamming information at people that is vaguely relevant, then drawing unsupported conclusions. Most people will not take the time to sort the information out.

Nowhere is there a clearly articulated argument that has appropriate references. Its like drawing conclusions on circumstantial evidence. Please note, again, that in logic this does not mean the conclusion must be wrong, only that the argument is invalid.

As to Rituximab, its one of the most talked about topics on this very large site. We also have one of the researchers who worked on Rituximab for rheumatoid arthritis here on this site, @Jonathan Edwards . He has probably forgotten more about it than any of us know.

Whether Lyme or EBV or enteroviruses or whatever pathogen linked to ME you like can lead to a post sepsis syndrome is a question subject to scientific examination. It could be right, but is subject to empirical and scientific testing.

Let me put this another way. Its a valid question to ask if post sepsis syndrome is just another name for ME. I am betting its another rejected, scorned and ignored area of research, so I suspect it will be hard to demonstrate anything conclusive.
 
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deleder2k

Senior Member
Messages
1,129
This is the strangest thing I've read. What have a trial on ME with Rituximab have to do with Post-Sepsis EBV?

@Jonathan Edwards, may'be you can comment on this? Valid claims or blogbabble that has no roots in reality?
 

Jonathan Edwards

"Gibberish"
Messages
5,256
This is the strangest thing I've read. What have a trial on ME with Rituximab have to do with Post-Sepsis EBV?

@Jonathan Edwards, may'be you can comment on this? Valid claims or blogbabble that has no roots in reality?

There was an old Monty Python song if you remember:

Spam,
Spam
Spam,
Spam
Spamspamspamspam
Spam

Blobgabble indeed or Globbabble, or just babble.

Alex has made the main points.
 
Messages
41
CFS/ME is in fact post-sepsis syndrome that is the link between the study and EBV reactivation, nobody on the thread has read the articles.

I am not here to debate I am here to post the latest news on successful ME/CFS stories using Rituximab.
 

msf

Senior Member
Messages
3,650
Hi Alexandru, I think Alex3619 and I are taking you seriously, we just find the evidence you provided unconvincing and tried to explain why. After all, you might not be here to debate, but presumably you posted this news here to convince people that this theory might be relevant to their conditions. I think it's then only fair if Alex3619 and I suggest why it doesn't seem relevant to them. It may not change your opinion but perhaps it will help others to weigh up the evidence and decide for themselves.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
I'll chip in here. I feel the OP is well meaning, but appears to be confused about how to deliver the 'message', and what this message actually is, as the information is not clear cut, despite the 'headlines'.

As is stands, with no published research on the claim of the OP, there is some truth in the sepsis statement, if you make sure you don't mean sepsis as in blood poisoning - which is what sepsis means! Yes, that's contradictory, bare with me a second:

A while ago, there was a group of Europeans researchers (Autism) who announced hints (not facts) of what they were finding in Autism (not CFS). They described this was like a 'miniature sepsis' (or a similar word meaning not a full sepsis) and also mentioned various viruses they thought might keep Autism going. If I remember correctly, they also mentioned Lyme in Autistic children. By sepsis, what they meant was a shared effect or trait of sepsis they also found, not literally that the Autistic children had full blown blood poisoning (sepsis), which is fatal.

Non B31 strain ancient Lyme, (lets call it Lyme like conditions), in some cases are associated to people diagnosis (or misdiagnosed) with CFS or ME. You can thus see how the jump of presumption occurs if certain people think all cases of ME or CFS are Lyme like. ...rather than a subset.

As I can't find anything online, or remember anything in adults linking to any vague reference to ME, CFS or sepsis, you can see how the message has gotten distorted and exaggerated. On that basis I feel the OP's message, it's not an intentional loopy tale, it's just confused. So although spammed in delivery (over enthusiastic, over confidence with next to no science behind the claim for ME or CFS), still isn't spam per se because I feel it's done in good faith, due to some truth in the claim if you consider how different people perceive what ME or CFS to be, to them.

I would say that this is always going to happen, when patients or 'fans' of certain future therapies get excited, but researchers don't say any more, or fall silent. People get tiny bits of information, and naturally have no one to touch base with to check or confirm what people mean, as unpublished data (or theories) are naturally well guarded and may take years or decades to emerge, if at all.

That's my two cents, as I read the 'sepsis' comments myself (unpublished) from Autism researchers (mentioning Lyme), so there is some basis of fact, in children. As for adults, I can't find anything myself, but that doesn't mean there isn't any, it might exist in a similar vein (e.g a pseudo sepsis or some features of) but naturally, we don't know either way at the moment.

As the 'sepsis' comment was Lyme associated (even thought we're talking Autism), this then perhaps jumped in a leap of faith (until the data is show) from Lyme to ME CFS to Rituximab, somehow by the OP's cut and paste from their link.

As ever in science, we're kept in the dark until researchers want to share their findings/theories/treatment ideas. So it's only human nature to speculate, hope and get over excited - if a 'fan', if ill, or if very ill. I do it, we're all guilty of it to some degree when dealing with 'ME' or 'Autism' or variants of non CDC Lyme (B31 strain) because the patients are left to fend for themselves in a quagmire of misinformation, disinformation and information. Depending on which 'team' you bat for, it sends you along a certain path, of which if it's correct or not, depends on if you have the correct diagnosis. That itself, isn't even possible yet in ME or CFS meaning no one knows what is going on, what to do, or what the various causes are.

Perhaps although it makes patients happy (myself included) to have hope, well meaning researchers relaying tiny snippets of their theories or findings, only confuses people (patients or non doctors or microbiologists) further, who can't then get more information and share it in public, potentially causing more trouble than it was worth by telling people in the first place, the first stages of what they think may be the pathogenesis, or a component of a disease or syndrome.
 

barbc56

Senior Member
Messages
3,657
That's my two cents, as I read the 'sepsis' comments myself (unpublished) from Autism researchers (mentioning Lyme), so there is some basis of fact, in children. As for adults, I can't find anything myself, but that doesn'

Why was this not published? Do you remember the names of the doctors?
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
Sorry no. It was in France I think? I saw it somewhere, twitter or facebook over a year ago. It was just a random comment from researchers I've never heard of in the world of ME, CFS or Lyme. Nothing substantial. I just remember the word 'sepsis' and thought, that must be where the OP got the idea from or by chance, is somehow linked to the 'message', but not in ME CFS, until proven otherwise. Sorry I can't help any further. I wish I remember where it was from, I'll try and remember. I do get confused a lot myself, so might have the wrong country!
 

nandixon

Senior Member
Messages
1,092
If I understand correctly, sepsis can be considered a form of "systemic inflammatory response syndrome" (SIRS). So sepsis can be thought of as being SIRS with an underlying infection. But development of SIRS doesn't necessarily require an infection.

From Wikipedia (sorry), there are many causes of non-infectious SIRS, like trauma, burns, adrenal insufficiency and others. And the same cytokine patterns can apparently be seen in both the infective forms of SIRS (i.e., sepsis) and in the non-infective forms. (Someone correct me if I have any of this wrong.)

Anyway, during the CDC conference call with Dr. Montoya of Stanford in February, Dr. Montoya mentioned results from a study still to be published:
CDC PCOCA conference call on 2/23/2015 with Dr. Montoya and Dr. Unger

"We analysed messenger RNA gene expression data from the cohorts of 200 [ME/CFS] patients and 400 controls. We compared the data to other diseases. The closest resemblance was to Systemic Inflammatory Response Syndrome; the correlation was 100%."

Also see:
Stanford 2015 Spring Newsletter

"Further analysis of mRNA gene expression, in a study led by Dr. Lipkin and Dr. Mady Hornig, showed that the
disease with the closest resemblance to ME/CFS is Systemic Inflammatory Response Syndrome (SIRS)."

Note that this is a gene expression study. It is different than either of the plasma and spinal fluid cytokine studies already published by Hornig, et al.

So yes, the original article that's the subject of this thread seems somewhat spammy and rather nutty sounding - perhaps because the author is a non-scientist layperson, but in actuality, the possibility of ME/CFS being related to or a variant of SIRS isn't out of the question. (We don't want to be thinking about this using "sepsis" terminology, though, I don't believe.)

In fact, I think it's more likely now that in the Norwegian studies of Fluge & Mella with rituximab and cyclophosphamide, that rather than the majority of their success in treating ME/CFS patients being due to some form of underlying autoimmune disease, that they're actually treating some variation of immune suppression that is more closely related to SIRS, or perhaps even cancer, than it is to autoimmune disease, which is sort of at the opposite end of the immunological dysfunction spectrum.

(Note that cyclophosphamide, rituximab and methotrexate, all of which have had some success in Norway - and apparently in that order of effectiveness - are each potentially capable of helping in treating either an immune suppression situation or autoimmune disease, as the case may be.)
 

msf

Senior Member
Messages
3,650
Interesting quote from Montoya. I found this article to be quite easy to follow: http://emedicine.medscape.com/article/168943-overview

Re: the whole sepsis idea, I posted an article in the Lyme forum that apparently (I couldn't access the full article) compared the increase in LPS after exercise in healthy patients to that seen in sepsis. The problem I have with the idea of the OP isn't so much the idea of their being some parallels between sepsis and ME, but the claim (totally unsubstantiated from what I could see) that ME is Post-Sepsis Syndrome, or whatever the term was. I think it's much more likely, if you look at the work of De Meirleir and, in particular, Maes, that there is some sort of low-level sepsis (perhaps this is the wrong word, by this I mean an increase in LPS that is driving an inflammatory and also possibly auto-immune response) going on constantly in ME patients.