Rituximab Study Update: Researchers Focus on Rare Gene Variant

[Who Me?]

@eyakelle Please explain why you keep saying true ME instead of just saying ME vs. someone who is misdiagnosed?

You have no idea if people get over infections are post viral and those who don't have ME. No one knows and that's the problem. My clinical immunologist doesn't even believe in active IgM infections, he thinks it's the body's memory fighting an old infection and thinks the abx or AV's are helping something else yet to be identified.

I'd eat rat poo if it got me better, whether I have true ME or am misdiagnosed? In the US there is no disease called ME.

 

[EYAKLLE]

Wow, 'in the US there is no disease called ME' you say?

I need time to digest that one.

ME is a disease identified by UK doctor Melvin Ramsey.

It is quite simply the inability to sustain consecutive activities with the muscle not recuperating hence the body n mind are shattered leading to a simple polymultisymptomatic short circuit state. It is not a complex CFS disease of a lingering post viral nature with unknown n misunderstood symptoms that respond to chilly peppers grown in Columbia USA sprinkled with cytokines on a Monday n chemokines on a Friday.

Neither is it a woman's disease only.

True ME will ruin the reputations n careers of those who sought to profit from it by turning it into CFS.

That game is getting increasingly dangerous now as these dangerous medications like rituximab are given to the wrong patients n controls wrongly so.

Welcome to the End Game of the ME saga.

Nobody's giving up are they?

 

[Who Me?]

There is no disease called ME. There is no diagnostic code for a disease called ME. I doesn't matter how you define it. It does not exist here. The US is the only country that I'm aware of that does not use ME. CFS CFIDS.

There is not a disease known as true ME. It's either ME or misdiagnosed, if you are not in the US. In the US it's CFS. they don't say True CFS.

You keep talking about true ME and and virus and post viral then you start talking about those who want to profit and the political aspect.. It's 2 very separate issues and to me just sounds like you're ranting. There isn't anything cohesive about what you're saying. I don't understand half of it except you hate RTX and you love arvs, and you think there is a disease called True ME. Show me that in the literature.

please put in paragraphs. I can't read all that text.

 

[EYAKLLE]

Nobody understands anything anyway so how the heck are you supposed to talk about it when it's all so messed up ????...

It's a MESS. A deliberately created mess.

Poor folk looking for info n answers on these forums who just don't get what's really going down here. CFS was created by a sad frustrated London psychiatrist. He was WRONG. They exercised patients to death. And now they get to play with rituximab with their suggestive medicine.

You say it all anyway : no ME in the usa...! It s strange to hear that you do not know what true ME is. Imagine having true ME n having all these cfs ers lingering n dangling around you diagnosed with a disease invented to dilute another one. Frustrating. It s wrong for them. Cos they need to know if it is ME.

We need to RETRAIN patients n the public about ORIGINAL TRUE ME. It is vitally important. That's why it s important to force having such (seemingly) trash n confusing talk initially. Just to retrain people back into getting back to true ME.

You cannot base clinical studies for true ME on a modern day CFS cohort. It s idiotic. The stuff of a Stephen King horror movie especially now with rituximab. Psychopathic.
Just wrongly designed. For example for the uk study The P.I. is NOT an ME expert. What clinical experience does he have with ME or cfs even, has he ever diagnosed a single case of it ? An interest is not enough.

I for one think the message is out and they know it. They know that the trial is a bad idea now. Far too heavy handed an approach n very poor design. The responsibility for going ahead with it is just too high. It s not worth the risk. They probably know it now for the uk study. If I was a betting man I'd bet it is over for rituxumab and for this trial. Cold feet. Frosty toes. Just schoolboys dressed up as doctors with catastrophic suggestive medicine that just CONFUSES the hell out of people. Pretenders ! Could be a useful med for expertly diagnosed true ME (and even then only for a sub sub sub subset of true ME) in exceptional cases but defintely not frontline I'd think. Like MTX that they gave in the first rtx trial orally which was useful. It has arv properties. It is highly specialized n very technical. You need expert doctors in there who know about true ME - Melvin Ramsey's ME.

 

[Who Me?]

What about incline village? My understanding is that it was Peterson and Cheney who called
In the cdc. Or David bell and the lyndonville cluster group. I never heard of s London psychiatrist inventing it.

I just don't have the energy to waste on outrage. It's fucked up. I don't care. I just do what I can't an don't worry about what all the other idiots do.

 

[EYAKLLE]

What about incline village? My understanding is that it was Peterson and Cheney who called
In the cdc. Or David bell and the lyndonville cluster group. I never heard of s London psychiatrist inventing it.

I just don't have the energy to waste on outrage. It's fucked up. I don't care. I just do what I can't an don't worry about what all the other idiots do.

it's very very very messed up.
you're spot on there.
My point is it"s been messed up firstly by accident,then for profit,then deliberately,then arrogantly,and now it has just reached boiling point and it s very very very dangerous to have messed n mixed it up like this n for those reasons

 

[Who Me?]

Fine. but this is a thread about rtx. Not how messed up the system is.

 

[EYAKLLE]

Fine. but this is a thread about rtx. Not how messed up the system is.

You can't give rtx to a messed up disease in a messed up system. The messed up system was created psychopathically by idiots, then because of the name of the disease and scientific curiousity other uninformed scientists jumped in, so you cannot disassociate rtx and the system in the context of this disease. It's the End Point of the perfect Stephen King crime horror movie with London psychiatrists laughing as patients line up for the slaughter n Columbia Uni smoke chilly pepper cigars watching on n puffing cytokines n chemokines in the air from patients who DO NOT have Ramsey defined true ME. It's traGic n suggestive n a downward slope that has been self created through unconscious but also conscious misinterpretation as it being a good idea but it s just as sick as Hannibal Lector as the band plays on.
It must stop. It's reached really sick proportions. They ll fry their damn brains. Oh dear they ll say. Rtx is potent. In the original study they were also given mtx. That has arv properties. You need true ME experts in there.
I ve not read about Haukeland n their study fully enough. I m just talking about the uk one.
Columbia Uni MD researcher went on dr oz n let dr oz talk about 'all you women out there' on prime time TV ( with a woman doing the hoola hoop gym work out in an ad on the in screen commercial as a piss-take!) n he didnt correct him. He came out with the kind of cytokine chemokine study that gives the horrific CFS impression that this rtx drug could be a why not drug for ME !!
Messed up. Totally like totally deranged people they are.

THEY LIED TO THE AMERICAN AND THE BRITISH PUBLIC. THEY LIED ABOUT WHAT THEY KNEW. AND THEN THEY LIED ABOUT WHAT THEY DID NOT KNOW.

Quiz show scene sums it all up :

IT'S OVER. They re scared to death of the recombinants and they have no solid basis to stand on so they invent HORSE MANURE. The finest n purest in the land. Oh if I could speak my mind I would exploDe. And they should be scared to death cos the recombinants WILL NOT go away as long as the infected are alive. True ME 1 in 250. Misdiagnosed untrue ME or cfs 5 in 250. They LIED LIED LIED LIED LIED and made the fatigued or virally cfs maladapted think they have ME. What a MESS. One paced up MESSSSSSSSSSS

XMRV Silvermann was never there. It simply was not there
XMRV Mikovits/Ruscetti WAS ALWAYS THERE.
All the work that went into the Science 2009 paper had been completed before the xmrv silvermann saga. We knew before 2009 that xmrv silvermann was not the real deal !

The first negagive xmrv mess up was from psychiatrists who teamed up with the questionable virologists:

They ll try anything. Any tactic. Any strategy to discourage people

https://m.youtube.com/watch?v=qylaxnGhcBo
http://youtu.be/qylaxnGhcBo

That scientist is supposed to be an expert. He KNOWS VERY WELL it was NOT xmrv slvmn AND HE KNOWS VERY WELL the mikovits ruscetti rv is real and would mean the careers of people who said vaccine making methods were safe UNDERESTIMATED rv recombinants.

Lunatics. Just by pure observation u see the composure of these people n u realize it :

They messed up.
Mikovits was ALWAYS right n THE OTHERS DID EVERYTHING TO HIDE IT

 

[Who Me?]

If you think RTx will mess up our systems then tell us why with evidence and not just your rantings, because that's all it sounds like. Nothing you say makes sense and you aren't backing up anything you say.

You have zero evidence that taking rituximab would screw someone up who may want to take arvs' which very few are doing at this point. This is just an example

I'm trying to tell you (politely) that no one is listening when you go off like that. (Cigars in Colombia? What does that has to do with anything except to confuse people?)

I certainly don't have the mental capacity to try to figure out what you are saying with all the ramblings and the tangents you vere off on. And notice no one is commenting on what you are saying

If you want to rage against the system then start your own thread. Or start a blog.

 

[EYAKLLE]

Columbia University, USA

 

[Who Me?]

Columbia University, USA

and there is my point. You can't even see that. I'm done.

 

[EYAKLLE]

I m done too
How can u not see the obvious

 

[Who Me?]

I see it, I just choose not to lose my mind over it.

 

[EYAKLLE]

It s all connected unfortunately.
it mAy be ok in a sub subset of true ME but that requires EXPERT true ME dr's and not garbaged CFS cohorts
We see it
For what it is

Tick
TocK

 

[weyland]

XMRV Mikovits/Ruscetti WAS ALWAYS THERE.

Mikovits and Ruscetti themselves proved they were wrong in the followup study. They happily sat next to Ian Lipkin in 2012 and admitted they were wrong. Not sure where you're going with this.

 

[EYAKLLE]

Mikovits and Ruscetti themselves proved they were wrong in the followup study. They happily sat next to Ian Lipkin in 2012 and admitted they were wrong. Not sure where you're going with this.

When they sat next to him all they said was XMRV SLVMN was NOT THERE AND THAT SLVMN XMRV WAS WRONG AND SIMPLY NOT THERE. Part of signing that bullcrap manure paper was a promise to isolate. It never came. It was the heavies saying sign now shut up n come back n play later.Mikovits didnt do any testing or culturing.All she got was fotos to try n spot the rv..... !!!!!!!!!
The Lipkin study was FRAUD because the role of it was not only to disprove slvlmn BUT to not have a follow-up, and ALSO to denigrate Mikovits/Ruscetti and HUMILIATE them. It was FRAUD retrospectively as it failed to live up to its longer term responsibility. Ruscetti was threatened to have his pension taken from him if he didnt sign....They were promised a chance to isolate for ramsey ccc true ME. That call never came. On that day with blue sky in Columbia THERE WERE ONLY LIES n they were not coming from Mikovits/Ruscetti

Ian Lipkin is Charles Van Doren :

on that day with beautiful blue sky in Columbia

You people need a reminder of how real n serious this is :
Fast forward to 50 seconds :

it ain't kosher as Robert de Niro said and as Montagnier supported his festival film n made by Wakefield.

TraGedy beinG plaYed out right in front of our damn eYes. Lipkin was always wrong about everything. Even in 98 with Wakefield.
Lunatics just playing around

 

[weyland]

When they sat next to him all they said was XMRV SLVMN was NOT THERE AND THAT SLVMN XMRV WAS WRONG AND SIMPLY NOT THERE. Part of signing that bullcrap manure paper was a promise to isolate. It never came. It was the heavies saying sign now shut up n come back n play later.Mikovits didnt do any testing or culturing.All she got was fotos to try n spot the rv..... !!!!!!!!!
The Lipkin study was FRAUD because the role of it was not only to disprove slvlmn BUT to not have a follow-up, and ALSO to denigrate Mikovits/Ruscetti and HUMILIATE them. It was FRAUD retrospectively as it failed to live up to its longer term responsibility. Ruscetti was threatened to have his pension taken from him if he didnt sign....They were promised a chance to isolate for ramsey ccc true ME. That call never came. On that day with blue sky in Columbia THERE WERE ONLY LIES n they were not coming from Mikovits/Ruscetti

Do you have a legitimate reference for anything you said here?

 

[Who Me?]

I'm not sure how you expect people with cognitive issues to read that. It's a nightmare for the ME brain, caps, underlines and stream of consciousness. And you have a non-answer to @weyland.

Since you have no facts or data start a blog. If you are using Dr. Oz as a reference then you really are grasping because no one in the US with connected brain cells thinks of him as the voice of MECFS.

 

[weyland]

Get educated n retrain your brains and REALIZE what u really have n dont have.

I'm trying. I've spent considerable time archiving and reviewing the pre-1988 literature on what you call "true ME", as my condition allows. Thankfully I became ill in 2014 so I missed the utter shitshow that was 2009-2011 with XMRV. With the benefit of hindsight, I'm not interesting in watching outdated youtube videos of Mikovits yelling at everybody, when I can see how humbled she was in 2012, admitting their results were in error. Again, to the best of my understanding her lab (and several others) was involved in the Lipkin reproduction study and her lab was unable to reproduce the results. I'm not interesting in hearing about how these were the wrong patients. They used CCC (which you seem to be advocating the use of) with post infective onset. Again, if you have some credible evidence that Mikovits didn't in fact participate in the 2012 Lipkin study and is able to continue to show the presence of some type of retrovirus in ME patients then I'd love to look at it.

You want us all to be outraged that nobody is giving the retroviral hypothesis the time of day yet you constantly fail to give us some evidence or a reason to be outraged, other than extremely vague conspiracy theories.

 

[EYAKLLE]

Mikovits in the Lipkin study said that xmrv slvlmn simply wasnt there.That's all.Simple as that.Her name on that paper is only for disproving slvmn's virus, not hers.
Yes,she did none of the testing.They sent her fotos of the samples.She was barred.

(content removed - personal attack)