Rituximab Study Update: Researchers Focus on Rare Gene Variant

Who Me?

Well-Known Member
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.

Well said.
 

weyland

Well-Known Member
But us that are better are trying to inform you !
Great, inform me, give me a source for this:

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.
 
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EYAKLLE

Guest
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.

So why did Lipkin go on that show !
He nullified his definitive study by doing so....! He let dr oz talk about a woman's disease n he didnt correct him !!!
 

Who Me?

Well-Known Member
Why do you care so much if we aren't interested in XMRV or aren't falling all over ourselves rehashing stuff that has been over and done with for years? If someone disagrees with you, or doesn't jump on to your cause, then that's our right. That doesn't give anyone license to insult or demean us or tell us to wake up and listen to them.

@weyland this is the same stuff that got him banned on PR after only being there a month. A leopard doesn't change his spots.
Time for me to ignore him as he is ignoring everyone else here.
 
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EYAKLLE

Guest
Isn't it ironic how those who get banned get banned for being better on antiretrovirals.

Sad state of affairs really.

Really sad. what are u frightened of ? The truth about what the real disease is and isn't ? People like weyland realizing slowly but surely.
 

weyland

Well-Known Member
So why did Lipkin go on that show !
He nullified his definitive study by doing so....! He let dr oz talk about a woman's disease n he didnt correct him !!!
Look, if you're trying to dispute the science of Dr. Lipkin based on his appearance on a TV talk show, nobody here is going to take you seriously.
 
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EYAKLLE

Guest
It's an important point.It shows he doesnt care as much as he makes out.In terms of brains the two are supposed to be on opposite ends of the spectrum......!

He lied to Mikovits and to Ruscetti also.
 

M Paine

New Member
The thing about Science @EYAKLLE, is that findings must be reproducible. The XMRV findings, were not. Samples of patients and non-patients were sent to multiple different independent laboratories, and they were tasked with isolating XMRV from samples to identify patients vs non patients. These samples were blinded. This is how science works, findings must be reproducible without bias. They weren't, there was no XMRV, period. Move on and catch up, science is moving on while you rant and rave.

Ian Lipkin, dorky or not on TV, is one of the world's most respected virologists. I can't fathom why you would slander the person who is, right now, conducting the most comprehensive search for Viruses of any genus (including retroviruses) via VirCapSeq-VERT in CFS/ME patients. This man is dedicating an enormous amount of research resources from the Center for Infection and Immunity towards CFS/ME. Known Retroviruses have a fairly recognisable footprint, it would shine like a beacon when performing Virome sequence metadata studies of this scale. You would think that if you were of the view that retroviruses, or any virus, is at the heart of CFS/ME, you would completely be on board with this study, and by proxy Dr Lipkin.
 
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EYAKLLE

Guest
It s a hell of a lot more complicated than that.
Plus i m a lot better on arv's.
Lipkin said rv s wont pan out.
Different things ll be on in different people.
He refused Mikovits a third sample to break the indeterminants.
He did not manage to have Mikovits allowed to do any testing. She had fotos taken n sent to her for analysis.
The chain of events is all very odd.
I dont give a flying bacon. Lipkin messed up by not keepng his promise. He doesnt understand what the real disease is even
 
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EYAKLLE

Guest
Look, if you're trying to dispute the science of Dr. Lipkin based on his appearance on a TV talk show, nobody here is going to take you seriously.

He contributes to the dilution n to the confusion. On prime time tv.
 
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EYAKLLE

Guest
I m not going to escalate this
I m quite happy with where it is
You don't seem to be
Everything's in place now
Everything has been reset n put back into place
The educating is complete n the retraining of patients n doctors n scientists n researchers
All clear to see now !

Only one thing left :

The final knock-out punch n that look of disgust n shame on their faces on the canvass.

Seconds out : Round fifteen of fifteen

Ian Lipkin is Charles van Doren :
His annoying little voice probably stirred up doubts in De Niro's mind when he convinced him initially to pull Vaxxed. De Niro figured it n him out probably when their conversation was over and he put the phone down, and went on to speak his mind a few days later :
http://www.wsj.com/articles/anti-vaccination-lunacy-wont-stop-1459721652
"The wise Mr. De Niro shows no sign of relenting." Lipkin said. But he did. He told Lipkin type people what he really thought of them for trying to stroke him n pat him on the back !!!
""I am among those Mr. De Niro consulted. In a 45-minute phone conversation with him, I recommended that the festival withdraw the film from the “documentary” category and not screen it.""
De Niro figured out no doubt that Lipkin was just smart talking him out of running the film. De Niro is smart. He said it as it is.


 
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San Diego

Well-Known Member
Plus i m a lot better on arv's.
I’d love to hear the history of your illness and how you got better. For example, your onset, severity, length of illness, what you tried prior to ARV’s, how you acquired ARV’s, what specialist you saw, and your progression toward wellness. Perhaps there’s something in there that can help me or another.

I noted in your profile that you list CFS rather than ME. So are you saying you don’t have the “true ME”? If that’s the case, I would then have to believe you think “true ME” is caused by something other than a retrovirus since you were cured by ARV’s?

Even Ramsay allowed for more gradual onset, so I believe there’s more than one path that leads to ME.

Thanks.
 
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EYAKLLE

Guest
The profile page does not allow you to choose ME. So know that CFS for me means true Ramsey / ccc ME. Hope that clears that up. Last time I was on a forum and spoke of my arv recovery I got banned ! It was always going to be a very very rough end game. Hold onto your seats now
 
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San Diego

Well-Known Member
The profile page does not allow you to choose ME. So know that CFS for me means true Ramsey / ccc ME. Hope that clears that up. Last time I was on a forum and spoke of my arv recovery I got banned ! It was always going to be a very rough end game. Hold onto your seats now
I have a feeling I know which forum. If you’re not comfortable sharing, I certainly understand.

I hope I’m not mistaken in believing the climate is more open here. Cort posts all sorts of recovery stories that don’t necessarily fit the "company line”.

Thanks.
 
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EYAKLLE

Guest
http://www.ncbi.nlm.nih.gov/pubmed/19264918


Progressive multifocal leukoencephalopathy after rituximab therapy in HIV-negative patients: a report of 57 cases from the Research on Adverse Drug Events and Reports project.


Just strikes me as too risky to give to normal controls and for undefined cohorts unnecessarily. That said,it may be ok for a sub sub subset of true ME but only with expert docs who specialise n have diagnosed ME before. Ramsay's ME. N if their condition n complications especially n gene n chemokine cytokine type justify it within that sub sub subset. Combined maybe with oral-form booster mtx? But not frontline mainstream treatment surely for all !
 
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Jenny Horner

New Member
I feel a little frustrated that they haven't named the rare genetic difference in those families. Has anyone heard what it is?
Also does anyone know if there are genetic links between SNPs associated with leukemia/lymphoma and ME?
 
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EYAKLLE

Guest
Am not an expert but the swedish/norweigan(??) ritux studies do look smarter than the uk ones. I just wonder if they should have used also in the past their current approach to patient selection(genes) to make it more uniform and clear from the very outset. I still think ME expert clinical doctors should be advising them in close collaboration to say if ritux is good/bad,and that retroviral research needs to go on as patients get better on arv's.
 
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