Lipkin is working hard for me/cfs (and for the money)

[RustyJ]

If anyone is interested in Eco's contribution's to me/cfs, or, for that matter Lipkin's, I took the liberty of grabbing this post from PR. There is a plea for the forums to throttle emails to Lipkin because he apparently is now channeling Mikovits (since her demise) and feels compelled to answer every email we send him. Poor petal is quite overwhelmed.

Quote:Okay, this was more difficult than I originally thought after further investigation. Because Montoya is involved in several research initiatives with Lipkin so it was difficult and confusing to determine which ones.

Here is the bottom line:

1)The NIH ME/CFS XMRV, MLV, HGRV, as well as other pathogens study involving a number of labs are conducting the research, he is providing oversight. Montoya is involved in this as well. Lipkin is just providing oversight over these labs.

2) a Stanford Chronic Fatigue Initiative - Detection of pathogens such as herpes viruses, the Lyme disease agent, xenotropic murine leukemia virus-related virus (XMRV), Toxoplasma gondii, or any unknown pathogen that may be a trigger for chronic diseases such as CFS, CLD or other diseases ("Stanford/Montoya Pathogen Study") study. Completed, Lipkin is NOT involved in this study and the research has been completed and the results will be published in the near future.

3) A privately funded research a Chronic Fatigue Initiative ("CFI") Pathogen Discovery and Pathogenesis study. I guess the confusion lies in similar names.
This does not involve Stanford or Montoya. The second effort is to pursue microbe and biomarker discovery in different samples. The NIH has no role in funding or approving that work.

Will any of these studies involve deep sequencing to find any and all pathogens in the blood, plasmid, serum of ME/CFS patients?
Lipkin: Yes.

4) There are a quite a few other Stanford research projects that cannot be disclosed at this time in which Dr. Montoya and Dr. Lipkin are corroborating together on . There will be no requests for patient recruitments. This is where, I believe all the confusion is within the patient community. So Montoya is working with Lipkin on #1, and #4.

#5) Dr. Montoya is not involved with Dr. Kogelnick's Rituxan pilot program

I really hope this clears up all the confusion!

As to the comment on 'we'. It was in Lipkin's original email stating 'we' meaning other researchers. I have no part or interest in any of these research projects nor am I involved with Dr. Lipkin's research. I have my own interest in another research project not listed here.

The good news is that there are several research initiative projects that Montoya and Lipkin are working on in behalf of the ME/CFS community that are not announced at this time. So there is a lot of research going on with finding a cause for ME/CFS.

I hope this answers everyone's concern on this topic.

Eco

PS: I wish to add that Dr. Lipkin is working 18 hours, 6 days a week to help the ME/CFS community. He receives each week, hundreds of emails from people asking him questions which takes away from his time on research and teaching. I would like to make a suggestion to the ME/CFS community not to write Dr. Lipkin with questions but to funnel the questions to designated point persons from each of the forums. For instance, Cort on Phoenix Rising?, Patricia Clark on the MECFS forums ? and whoever on the other ME Forum ?. This way, it would reduce the amount of emails he receives to lighten his load and stress level. Your thoughts on this?

http://forums.phoenixrising.me/showthrea...post261237

[liquid sky]

My thoughts. Release the gag order on Judy and let her respond to questions freely. Throw the lawsuits out of court also.

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[Angela Kennedy (Staff)]

It is shocking that people over there are putting their faith in some abusive anon, claiming authority over others, with form in making up stories (like when he claimed I threatened the Royal Family!!!)

And now they are demanding the filtering of questions through Cort Johnson?

Why have so many in this community become so deferent to these little tinpot dictators?

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[flex]

(05-10-2012 08:22 PM)Angela Kennedy Wrote:  It is shocking that people over there are putting their faith in some abusive anon, claiming authority over others, with form in making up stories (like when he claimed I threatened the Royal Family!!!)

Wow Ang how could you do that, poor little baby David.

Quote:Why have so many in this community become so deferent to these little tinpot dictators?

If the tin hat fits then wear it?

Quote:And now they are demanding the filtering of questions through Cort Johnson?

Maybe the tin hat is actually a kitchen sieve which aids the filtering process into Corts brain.

I can just see Eco and Cort in his mums garage with a kitchen sieve on his head as Eco hooks it up to a "hotline to Lipkin" which is connected to a home made lie detector which inadvertently then posts as Cort on PR.

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[CTD]

The muck raker in question isn't anonymous. Apparently they're a ******* ********* although I forget their name.

The wookies ID was posted on PR ages ago when someone figured who they were, due to a constant rampage of anti Mikovits sentiment from them and slamming any retroviral research into ME. This got in the way of the happy smiley face of the front page though.

The post outing the mole was swiftly deleted.

The insurgent was also banned (temporarily) from PR by staff, as its alter ego became mentally unstable after the BWG paper making PR look like a home to psychos which the seephids ass didn't want of course. Even PR couldn't tolerate it's behaviour, even if they are friends with the boss.

Stupidly it went into an extremist rage about Mikovits, totally blowing its cover as a 'patient with CFS' who is cured in one post and bed bound in the next . The cartoons agenda was clear and their fortune telling skills were remarkable with every negative XMRV paper that came along, starting with the CDC's which was reported by an intel motherboard working for the military.

Before that, they just looked like a normal weirdo who used to threaten patients not a unique schizoid dellusionist who talked about a ''court case'' 6 months+ before it even happened.

Remember that?

Yes, the touched one predicted the change in fortune to Mikovits half a year+ in advance under the guise of scaring patients away from posting about supporting her. It worked, people left and that place became what it was designed for, not for a retro-viral discussion into ME but for chronic fatigue initiatives that have an endless client base that is always refilled.

If you look closer, the ''court case'' was their plan for Mikovits, they couldn't contain themselves so instead claimed it was against the patients! Naturally it wasn't, it was for Mikovits. It was planned.

Some people doubt V but V is correct more times than not. Gagging Mikovits is essential as she is a legendary speaker and defender of the welfare of very sick ME patients not generic tired people.

In contrast, 'the thing' still trolls the forum, although they've toned down their rhetoric lately to become what they were originally. A government research paper predictor. (Not just a mikovits hater). So yes, they are out in force again ready to 'predict' the future and of course, it's negative or the wouldn't report on it with such faux professionalism, all unsourced and unconfirmed (their trait when posting).

The creature reminds me of a middle aged American man, although a likeness to Shrek on acid tabs and coke is more likely. It will be very happy this time out, because there won't be a counter claim, a differing opinion. The 'facts' will be predicted as one studies conclusion being the be all and end all, and there is no science evidence to stop the party, as no science has been done.

The conclusion will be gamma retroviruses do not exist in CFS patients, the research is very expensive and should go on new 'exciting' research like HHV-6 and autoimmunity and Brenda's HERV's which ''we all have'' but ''some have a genetic weakness too'', caused by stress and overwork which ''the CDC have proven'' due to 'biological research that finally show CFS is real''.

Then you get the CFI (Chronic Fatigue Initiative) to repeat research done in the 1990's that shows people with CFS have viruses and we should treat these with Valcyte and you can do this by paying $3,000 and attending a 'fatigue centre' changing people's lives day by day.

Turn the clock back thirty years, it never happened and Mikovits is silenced. 'Taz' will probably will be predicting she's going get put in the pen. Defreitas all over again but this time, not as subtle.

Since Lombardi et al 2009 discovered HGRV's in CFS patients, there are new privately run 'CFS' centres in America cropping up 'treating' everything but retroviruses staffed by the same researchers involved in negative retroviral research. These centers are receiving federal interest and grants to treat 'CFS'. Chronic tiredness and four symptoms. No PEM.

Why would you suddenly set these places up with HGRV's hanging in the balance and risk your own private finances if this CFS treatment wasn't going to work if HGRV's were going to be the way? How was this 'treatment' for CFS suddenly made available to science (post 2009?). Who funded the buildings, when were they constructed?

The surge is too rapid. You would HAVE to know the outcome of the 'NGS validation studies'.

What a strange set of coincidences.