• Phoenix Rising needs funds to operate: please consider donating to support PR

Cort's Chat with Dr. Mikovits

JillBohr

Senior Member
Messages
247
Likes
0
Location
Columbus, OH
If the CDC came out supporting the XMRV/CFS, that would be massive. I'm really hungry for any news/hints/tips anyone might have heard. Could Mikovits sounding positive just be a reflection of her confidence that any properly done study will support the WPI's work? Was it more than this Cort? Anyone got a clue when they might be published?
Your hungry? I am ready to pounce out of my seat! Oh, Joy joy joy if a CDC study comes out supporting XMRV/CFS!
 

jspotila

Senior Member
Messages
1,099
Likes
778
Do you know what the outcome was for these meetings?
No outcomes yet, Robyn. My understanding is that the appropriators and staff were positive in those meetings, and we are certainly hopeful that our suggested budget justifications are included in the package. That language is available from the report I linked to earlier. Offhand, I don't recall what the expected timing is for action on the budget.
 

HopingSince88

Senior Member
Messages
335
Likes
10
Location
Maine
I couldn't agree more. The autism community does effective advocacy and lobbying. No matter how well it is spun, we don't have that.
Jill and Roy - I am in complete agreement with you. The autism community is a strong one and well organized. If these new studies do continue to show a connection between XMRV and autism, this will catapult XMRV into the stratosphere (in terms of public awareness).

Money Talks:
One of the things that occurs to me is the enormous amount of money cities and towns are spending on educating children with autism, as these children are mainstreamed into regular classrooms (with much assistance). If vaccines can be produced that protect future children from this dreadful condition, this will have a major (positive) impact on school budgets and the average tax payer supporting those budgets. Furthermore, if good treatments can be found for children with XMRV-caused autism, possibly many of these children will be able to attend classes without the assistance of aids and therapists (which is how it works now in the US)...again saving a great deal of money for the schools and taxpayers.

I know talking about money sounds crass...I would like to say that I would prefer the public support us for humanitarian reasons, not for financial ones...but that just hasn't happened for us or for children with autism. also, one of my children is has a masters degree in special ed with concentration in severe autism. i have another child with cfs, and another who struggled through school with severe learning disabilities...so I have a bird's eye view from a number of perspectives. And sometimes the only way you can get the publics support is showing how you can save them money.
 

JillBohr

Senior Member
Messages
247
Likes
0
Location
Columbus, OH
Thank you Roy and Hoping. I completely understand what you are saying Hoping. My kids are costing the taxpayers a small fortune. I know this economy is breaking all of the states budgets but I can not help but feel part of the problem is that all of the states are having a heck of a time dealing with the costs of people that have autism, ME/CFS and other neuroimmune disorders. Both of my sons went through 1:1 ABA therapy and it cost a LOT of money. Yes, they made great progress but when my oldest son started having seizures, he regressed horribly. This is why it is very important for the WPI to be well funded to proceed with the investigation of XMRV in not only ME/CFS but other neuroimmune disorders as well. I was married to an astronomer and he would spend on average, a month of his time writing grant proposals. He is a great proposal writer. He was able to rake in over $250,000 just a year out of graduate school. I have no idea what the WPI is doing as far as writing proposals for research grants. Perhaps we should have someone here that knows Dr. Judy to see if they have utilized the Autism Speaks grant page.

http://www.autismspeaks.org/science/research/grants/index.php

Many of us parents have done a lot of fundraisers and Autism Speaks is very focused and organized and they are able to get companies to donate large amounts of money as well. I think the money comes in faster than going through the regular federal government programs where the money is designated several years in advance.
 

Bob

Senior Member
Messages
16,455
Likes
34,043
Location
England (south coast)
Cort, thanks very much for this very interesting interview (or 'chat').

In case it's helpful for anyone, here's a link to the Phoenix Rising blog page with the 'chat' on it...
(I'm sure people have seen this already, but I keep missing things on this forum... it's hard to keep up to date with all the info!)

Dr. Mikovits Chats on XMRV:

http://blog.aboutmecfs.org/?p=1481


Also, I have copied and pasted the interview (the chat), from the blog, into a convenient two-page PDF file, and attached it below, in case anyone wants to print it out to read it...
 

Attachments

Cort

Phoenix Rising Founder
Messages
7,361
Likes
2,070
Location
Arizona in winter & W. North America otherwise
Has the CFIDS Assn of America done anything to get more money for the study of XMRV?
Kim McCleary, Dr. Vernon and staff members spent three days trying to translate the splash produced by XMRV into more funding. Of course their first biobank study is, also, from my understanding, focusing on replicating the WPI's study (not validating it) in a set it very WPI-like patients.

Honestly, getting more funding for CFS is a brutal process. They've tried for years and years; they've paid money for a professional lobbying group to advocate for us....but lots of politicians have decided that they don't have the expertise to tell the NIH or CDC what to study - they'll give the group more money to study but will not tell them to apply to X subject. What we need is for a 'hero' - a politician willing to push hard for CFS - who is the right place to do so. We had one before - we have no one now, apparently. We certainly have Harry Reid's support but that doesn't translate into research funding.

Or we need XMRV to work out - that will probably be as good!
 

Cort

Phoenix Rising Founder
Messages
7,361
Likes
2,070
Location
Arizona in winter & W. North America otherwise
If the CDC came out supporting the XMRV/CFS, that would be massive. I'm really hungry for any news/hints/tips anyone might have heard. Could Mikovits sounding positive just be a reflection of her confidence that any properly done study will support the WPI's work? Was it more than this Cort? Anyone got a clue when they might be published?
Dr. Mikovits said she couldn't say for sure but she had an idea of how the CDC report will turn out (a source I suppose). I have heard the opposite from someone else! We've heard for over a month that the CDC paper is in the pipeline....it's got to be getting closer and closer....
 

Cort

Phoenix Rising Founder
Messages
7,361
Likes
2,070
Location
Arizona in winter & W. North America otherwise
Does anyone know what the CDC study is? That is separate from the HHS working group papers, right? I'm assuming it's an XMRV study, but, it would be great if someone knew/remembered the details of what patient cohort was being used, and what test.

It would be interesting if Fukuda vs. CCC were tested for XMRV to see what the prevalence is.

My understanding is that the CDC study contains their crummy cohorts plus at least one other cohort from another group. They are part of the DHHS group but it sounds like a separate study.
 

Cort

Phoenix Rising Founder
Messages
7,361
Likes
2,070
Location
Arizona in winter & W. North America otherwise
I would very much prefer a normal interview with quoted questions and quoted answers. The interviewee should speak for herself for the most accuracy.
This was all taken from a chat with Dr. Mikovits. I was online, someone had showed her a blog of mine and she stopped by to chat. It wasn't really an interview. She's very passionate...let's just say that some of her responses were considerably toned down....I don't think she would have appreciated them in a blog.

Is there a section of it that you're concerned with Roy?
 

Cort

Phoenix Rising Founder
Messages
7,361
Likes
2,070
Location
Arizona in winter & W. North America otherwise
I couldn't agree more. The autism community does effective advocacy and lobbying. No matter how well it is spun, we don't have that.
No we don't but then again we don't have an army of angry mothers who expend alot of time and energy on this issue. In fact we get very little support from healthy relatives, spouses, friends, etc. relative to other diseases. Nor do we have an autism research institute thats been in place for 40 years.

We also have a controversial disease with a poor diagnosis that is multi-systemic in nature -which means most researchers don't want to touch it. We have a home in a little office in the NIH - not an Institute. We have review panels staffed by dentists and pain researchers not CFS researchers. We have a crummy name with psychological overtones, etc.

Not to deny that we need better advocacy but boy do we have alot of problems to overcome. A diagnostic marker and agreement that this is a real disorder would do wonders for our advocacy efforts!
 

Cort

Phoenix Rising Founder
Messages
7,361
Likes
2,070
Location
Arizona in winter & W. North America otherwise
The WPI is in kind of a strange situation; they have lots of work to do - more work than ever - yet, until XMRV is validated they'll have difficulty getting big federal grants they need. Private donations of the magnitude that they probably need, are difficult to come by in this economy. Money from the diagnostic tests is certainly helping but the research is very expensive and what they need are grants and clinical trials. Six months after the Science paper they have not received ANY federal funding.
All the facts in there are from Dr. Mikovits. As I noted it was not a planned interview.

I hope no one minds but I changed the title of the thread to a "chat" with Dr. Mikovits :)
 

Esther12

Senior Member
Messages
13,774
Likes
28,354
Dr. Mikovits said she couldn't say for sure but she had an idea of how the CDC report will turn out (a source I suppose). I have heard the opposite from someone else! We've heard for over a month that the CDC paper is in the pipeline....it's got to be getting closer and closer....
Thanks Cort. We'll know one way or another soon enough.

Butterflies in my stomach for that one, I don't know what to expect.
 

jspotila

Senior Member
Messages
1,099
Likes
778
No we don't but then again we don't have an army of angry mothers who expend alot of time and energy on this issue. In fact we get very little support from healthy relatives, spouses, friends, etc. relative to other diseases. Nor do we have an autism research institute thats been in place for 40 years.
Nor does the CFS community have the money to spend on government relations that Autism Speaks does. I did some quick research, and found that Autism Speaks spends 3% of its budget on government relations. That equals almost $2.2 million per year!!!!! Wow, what CFS could do with that kind of money!
 

lululowry

Senior Member
Messages
103
Likes
0
Location
Athens, Georgia
Here's an angle that occurred to me when I looked into Raymond Schinazi at Emory to ask what further research they were were doing on XMRV (they are doing trials on animals before humans). He has been a major player in developing in anti-AIDS drugs. Indeed, his bio reads "Dr. Schinazi is the founder of several biotechnology companies focusing on antiviral drug discovery and development, including Pharmasset Inc., Triangle Pharmaceuticals (acquired by Gilead in 2003), Idenix Pharmaceuticals (51% acquired by Novartis in 2003), and RFS Pharma LLC (formed in Sept 2004). He has published over 420 peer-reviewed papers and 7 books, and holds more than 70 US patents. He is best known for his innovative and pioneering work on d4T (stavudine), 3TC (lamivudine), FTC (emtriva), D-D4FC (reverset), RCV (racivir), and DAPD (amdoxovir), drugs that are now approved by the FDA, or are at various stages of clinical development. His inventions now sell more than US$2.0 billion per year and more than 80% of the HIV infected individuals take at least one of the drugs he invented."

It has occurred to me that the makers of anti-HIV drugs have a very real interest in proving that a link exists between XMRV and CFS because if they can then prove that a clear XMRV/CFS connection, they have increased their anti-HIV drug market by 10 or 11 times, right? Maybe this is where research money comes from? Drug companies? Or is this too cynical? Or tainted?

I have no experience with any of this - just random thoughts of a foggy-brained bystander.:tongue: So if this is exceptionally dumb, just ignore!:rolleyes:
 
Messages
1,479
Likes
522
Location
Clay, Alabama
Cort I am nervous CDC study will be a negative. It's a blow I just don't know if I could stand.

Cort, I thought they were checking WPI samples also. Wasn't that the talk at the October CFSAC meeting?

(I think I am going to go look at pictures of XMRV coming from cells right now for some encouragement.)

Tina
 

leaves

Senior Member
Messages
1,193
Likes
31
Yes Tina I am with you here
The CDC thing better turns out positive...
Any more news to reduce uncertainty and calm our nerves would be very welcome!!