First International XMRV conference

[judderwocky]

i do hope you are right.

I really wonder if Switzer will admit he was wrong. It takes a very big man to do that and many wouldnt. He's probably going to have no choice in the end but to do so. (CDC damage control)

yes... but in the end he is a scientist that studies retroviruses... he's been chasing monkey viruses for years in africa supposedly trying to show they cause disease.... in the end i think even his curiosity will win out... who knows, maybe it was just jealousy that blinded him... i mean, they basically showed what he couldn't ... a VERY strong link to a retrovirus and a mystery disease that had been studied for more than three decades... for an "upstart" research facility to do that has got to be.... humbling.... he's got to have wish he stumbled on it sooner...

but he might have just been looking in the wrong places....

 

[taniaaust1]

Nope, there's a HUGE difference between saying your case is insane and that you are insane. That said, I haven't found a place in this thread where you have made a personal attack on anyone, either.

***starts laughing madly*** This whole thread is enough to send someone almost insane.
................

Take care.. the CDC will be adding arguementative to its CFS diagnostic criteria next

 

[taniaaust1]

There must be one person here who knows Mikovits or is able to contact her and ASK HER what she wants done by the advocates. Or, we ask the people at WPI what THEY want. But it has to be someone close and able to get a very firm answer so that we can all go forward and do as Mikovits/WPI want. And we do it in a united voice - no hysteria or drama, just firm demands - or for those that don't like the aggressive DEMAND word, REQUEST.

Who is this person on this site? Cort? Has anyone asked WPI on FB???? Have they responded at all to any coments, questions?

Muffin if there is an issue (which i personally believe there is).. i cant see how the WPI could get involved any more than what they already are.. that being to answer back privately and truthfully to any emails which have been directed to them, just saying that Dr Judy Mikovits wasnt invited to speak.

They need to keep a scientific reputation.. and for them to be openly causing a riot.. wouldnt go down well at all with their peers at a time when they need to be getting a good reputation with their peers.

The way i look at it.. this would be making them powerless to speak openly out. It will do no good to destroy a reputation they need to build up.
Having an individual spokesperson for them.. would be the same as they talking publically themselves... damaging to their scientific reputation

 

[taniaaust1]

Maybe I should make this its own thread, but will put it here for now.

Good news Sickofcfs, the 1st Internation Workshop on XMRV's Program has been changed to reflect Mr Switzer's academic qualifications:

Assay Development
Mr. William Switzer, CDC, Atlanta, USA

http://www.virology-education.com/index.cfm/t/Program/vid/1FFCB7B8-FB88-C1D2-92C420E3BCEB0FB0

( from the CDC site: William M. Switzer, [MPH Masters of Public Health] http://www.cdc.gov/about/opportunities/careers/microbiologists.htm )

"Abstracts Committees Contact Program Registration Workshop Information PrintBackProgram
Please note, taking into account Labor Day on September 6, the program of the 1st International Workshop on XMRV will start in the afternoon of September 7.
Invited Speakers
We proudly present the following list of confirmed speakers for the 1st International Workshop on XMRV:

Host Restriction Factors
Dr. Kate Bishop, NIMR, London, UK

Viral Integration
Dr. Sam Chow, UCLA, Los Angeles, USA

Basic Virology
Dr. John Coffin, Tufts University, Boston, USA

Prostate Cancer
(keynote lecture) Dr. Eric Klein, Cleveland Clinic, Cleveland, USA

Animal Models
Dr. Robert Silverman, Cleveland Clinic, Cleveland, USA

Pathogenesis
Dr. Ila Singh, University of Utah, Salt Lake City, USA

Assay Development
Mr. William Switzer, CDC, Atlanta, USA

Chronic Fatique Syndrome
Dr. Frank Ruscetti, National Cancer Institute, Frederick, USA

Vaccine Development
Dr. Ellen Sparger, University of California, Davis, USA"
...............................

LMAO.. MR William Switzer, CDC ... He's the only Mr among all the Doctors speaking

 

[judderwocky]

"Abstracts Committees Contact Program Registration Workshop Information PrintBackProgram
Please note, taking into account Labor Day on September 6, the program of the 1st International Workshop on XMRV will start in the afternoon of September 7.
Invited Speakers
We proudly present the following list of confirmed speakers for the 1st International Workshop on XMRV:

Host Restriction Factors
Dr. Kate Bishop, NIMR, London, UK

Viral Integration
Dr. Sam Chow, UCLA, Los Angeles, USA

Basic Virology
Dr. John Coffin, Tufts University, Boston, USA

Prostate Cancer
(keynote lecture) Dr. Eric Klein, Cleveland Clinic, Cleveland, USA

Animal Models
Dr. Robert Silverman, Cleveland Clinic, Cleveland, USA

Pathogenesis
Dr. Ila Singh, University of Utah, Salt Lake City, USA

Assay Development
Mr. William Switzer, CDC, Atlanta, USA

Chronic Fatique Syndrome
Dr. Frank Ruscetti, National Cancer Institute, Frederick, USA

Vaccine Development
Dr. Ellen Sparger, University of California, Davis, USA"
...............................

LMAO.. MR William Switzer, CDC ... He's the only Mr among all the Doctors speaking

Assay development... thats an interesting way of putting it.... clearly they realize there is work to be done.
I think also this might also refer to assay "mass" development.... which will be necessary if we are talking about testing 17million+ people.... i mean right now it takes a while for even the good labs to find it in a few hundred people.

 

[taniaaust1]

The idea that Dr. Mikovits was galvanizing patients to speak on her behalf would have very negative consequences for her professionally in the long run, I would think. If XMRV wins out everybody should be fine and she has fine speakers that are allied with her, so to speak, in that conference

I doubt that anyone here has been galvanized to speak on Dr Mikovits behalf.. Im speaking out strongly on this issue but i myself have never in my life sent Dr Mikovits an email (well not that i remember). Quite a few have emailed Dr Mikovits but are keeping the emails back confidential (I assume she may of said she wanted that???).
........................

Everyone ignore this post.. i saw some time after i posted it that Cort had clarified he didnt mean to imply anything by what he'd said and ended up deleting that part of his post.

 

[taniaaust1]

2. Has Dr. M said she is o.k. with advocacy in her name?

Hi George... i know your question wasnt directed at me, but i'd like to answer how i feel about it.

I personally wouldnt ask Dr Mikovits about is she okay with advocacy in her name as the moment one does that.. one is then involving her in it!! I do not wish to involve her in it.

Im not advocating on her behalf.. but rather advocating for a situation I see as just not being right.

 

[taniaaust1]

Here is the big picture. Lombardi and al. publish a huge paper in Science.

They give 20 positive samples to the CDC.

The day of publication Reeves says that they won't find it.

In January 2010, 2 british studies can't find XMRV.

Dr Reeves gets removed from the CDC program as of February 14th 2010, and reassigned within the CDC. Dr Unger is the current acting chief.

Then a dutch study comes out and can't find XMRV. WPI sent this team some positive samples and they still couldn't find it.

All 3 of these teams did not "replicate" the study there was methodology issues, and cohort issues.

Then the CDC announces they didn't find the virus. We hear from the FDA/NIH, as there is a leak from a Europe conference that they have succesfully replicated Dr Mikovit's work. The CDC manages to "stop the press" in order to not embarrass either agencies and see what went wrong.
The FDA.NIH is doing more study to prove they are right. Their paper is delayed.

In the meantime, the CDC publishes in Retrovirology without altering their paper. Dr Reeves is part of the Co-authors, the same guy that predicted back in October that they wouldn't find it.

A first International Workshop for XMRV is organized in Bethesda, NIH quarters, for September. In July, the list of presenters is such that Dr Mikovits is not invited to speak at this workshop, and Mr Switzer who is the main investigator of the CDC study, will present on assay development, when clearly he didn't find the virus. Most of the talks will be around XMRV and prostate, and Dr Ruscetti will discuss CFS. The deadline for call for abstracts is July 30th and as of July 23rd, the FDA/NIH group has yet to put their paper in the press. A few other groups have yet to produce their papers, some of them expected to be positive.

The CDC revamp their website http://www.cdc.gov/cfs/ and highlight their own studies including the Wichita cohort (telephone CFS screening), stating that there is no correlation between XMRV and CFS and that children facing adversity (their words) have more risks for CFS. The treatment list for cfs is as following:

Professional Counseling
Cognitive Behavioral Therapy (CBT)
Graded Exercise Therapy (GET)
Symptomatic Treatment
Alternative Therapies
Support Groups
Pharmacologic Therapy
Sleep Hygiene
Pain Therapy
Orthostatic Instability Treatment
Antidepressants


Clearly, the CDC is perpetuating their desire to keep CFS in the dark and marginalize the disease even more. They are a powerful authority and won't give up easily.

For those of you that have been sick and disabled for decades, don't you think that what is going on this year is just the same old stuff?
What are we going to do about it? In the 1980s and 1990's we didn't have access to internet like we do today. If we can't get out of the house, how about we start using our voices, together?

This post i thought was great. You should make a new thread for it.. a quick run down of the facts. I saw someone post the other day who wanted a quick run down.. many are too sick to read lots to be up with what is going on and a quick post such as this.. helps to fill them in.

 

[taniaaust1]

William Switzer giving a talk on how to use assays to find XMRV!!! Is insane.

Dr Harvey Alter not being invited to talk about his assay is insane.

Someone here mentioned the deadline for abstracts is July 30th, if Dr Harvey Alters paper is not out by next Friday, then he will just have to be added into the meeting at a later date. (otherwise its crazy!)

Conspiratory???? delay postive publications.... set deadline for abstracts before those publications can get published.....

 

[taniaaust1]

... the former governor of Nevada died.... yesterday. Apparently he was the one that funded a chunk of the WPI's new building.

What they are really concerned about right now is losing all their funding.

we risk alienating ourselves and making ourselves complete outsiders.

Sadly we are already alienated and outsiders

Thanks for your post filling us in.

 

[taniaaust1]

It sounds like the 12 million is appropriated through the bill... but they get an additional 77 million for the building from teh federal gov...and i think a lot of that may have been him flexing his arm in dc... and getting people on board

realistically we just want the new governor to public ally acknowledge that he is going to fill in Guinn's shoes on this issue... we just need him to be aware that its still an issue...and he needs to deal with it and us pro-actively ...

its an opportunity for expansion and programming... we need to educate this guy....

its my understanding that the state is having financial issues and i think the new govenor might be looking to cut programs in teh next budget cycles.... WPI could be affected by top down moves like this from a new govenor.

what we have going for us is this... guinn was liked because he was considered a good finance guy...

we "spin" the cfs research as a part of this.... this will help to eliminate the additional medical costs of the disabled! whats more fiscally conservative of that.....

if the new govenor wants teh same level of success as the old one, we tell everyboyd he neeeds to use the same strategy

sorry about my typing... ive been working on the site and my fibro is spreading to myhands.... i;m gonna have to sign off soon

Could you please start a new thread about this and someone put the email address of the new governer so we can start that CFS educating him.

 

[aruschima]

Excuse me to bud in again here, but have you looked at the revised CDC site for CFS?
You will be shocked !

 

[Frickly]

Yes, I saw it. It is infuriating.

Excuse me to bud in again here, but have you looked at the revised CDC site for CFS?
You will be shocked !

 

[muffin]

V99: Have to applaud your tenacity on this critical topic.

V99: Have to applaud your tenacity on this critical topic. You really are quite the Warrior!

And, of course I agree with your assessments on this entire situation. Now we need solid ideas on how to crack this nut and get Mikovits on the speakers roster as well as the public/media in (assuming that they are not allowed into this NIH co-sponsored- Federally funded- workshop).

Are the other CFIDS websites/forums aware of this situation? Need to get those people aware and emailing/complaining to the officials and media. Aside from this, I cant think of what else to do.

 

[Frickly]

Yes, thank you V99! You are awesome. Muffin, we have been posting our request in several places on the web. Thanks for helping us spread the message. People are talking about it now and I hope that our community will not sit by and say nothing while wpi is pushed out of the xmrv topic all together.

Thanks Muffin!

 

[Rrrr]

To everyone who is on the fence:

Please email the XMRV workshop/conference organizers and ask that Judy Mikovits, the scientist who discovered XMRV's link to CFS, be invited to speak on a plenary at the conference. At present, she has not been invited to speak anywhere at the conference.

Rrrr

 

[judderwocky]

please be aware. from my communication with them they do not endorse this. they do not believe this will help them.

you are shooting them in the foot.

i will say it again. Their media department, after I spoke with them, does not endorse this. they do not feel this will help them.

you should wait for their press release. after mikovitz has traveled one is going to be published shortly. at least give it a few days to hear their official response... something could change by then either way. at this time i can only telll you what they told me...

if you still feel then like this is the best course of action, nobody can stop you, but i think at this time it is very unwise.

at least wait for the WPI press release... they have asked that much.

 

[julius]

you are shooting them in the foot.

And by extension shooting all us patients in the foot as well.

I know many of these people didn't do their job for years, but now they are trying to. All these angry letters and whatnot are just causing more problems than they could possibly solve.

Please everybody just relax with the knowledge that finally, It's getting done!!

Let it happen.

 

[V99]

I don't know of anyone writing an angry letter, it's merely a request.

 

[SOC]

I don't know of anyone writing an angry letter, it's merely a request.

A friutless request contrary to the best interests of WPI (according to their media dept) from people who don't understand the system. Save your energy for the real fights.