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Cort's Chat with Dr. Mikovits

Cort

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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!
Wow! (Who knew?) That's the power of healthy, financially able donors. They certainly do get results. I'll bet they get into see Senators (not staffers). I was at a lobby day with Brian Smith, on the CAA's Board of Directors, where we walked into the Office to see a staffer just as the Congressman happened to be letting someone else out. Brian practically grabbed him by his lapels and into his office we went - the only non-staffer we saw that day!

Its tough when you don't have clout!
 

Cort

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By "toned down" do you mean she was less emphatic in her confidence than in previous statements?

Not really sure what this means. Thanks.
Sorry - no she was VERY emphatic - I toned down the language a bit because it was kind of a private discussion where you sometimes really let go with your language. (ie those bas****ds! (she didn't say that -just an example ;)_
 

gracenote

All shall be well . . .
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She's very passionate...let's just say that some of her responses were considerably toned down....
I agree Cort, that Dr. Mikovits is very passionate and candid in her responses. And I like it. I like it a lot. It feels great, as a long neglected patient community, to have someone come out fighting for us. I think everyone has become so weary over the years, that her passionate responses are invigorating. Go Dr. Judy!

(And I think "toning down" the post was also a good idea.)
 

Kati

Patient in training
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What is spectacular about Dr Mikovits is that she cares. As far as I know she has no connections whatsoever with CFS and yet she agreed to move to Reno, and research a disease that no one would fund. It takes someone with a lot of character.
 

garcia

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Wow! (Who knew?) That's the power of healthy, financially able donors. They certainly do get results. I'll bet they get into see Senators (not staffers). I was at a lobby day with Brian Smith, on the CAA's Board of Directors, where we walked into the Office to see a staffer just as the Congressman happened to be letting someone else out. Brian practically grabbed him by his lapels and into his office we went - the only non-staffer we saw that day!

Its tough when you don't have clout!
I know for a fact the autism community has a couple of senators on their side. I mean these are hard-core supporters, not fair-weather friends. There are some rich, powerful and connected people affected by autism (e.g. kids or grandkids).

It also helps that the disease is obvious to see (not hidden like CFS), and occurs in children.

Finally there are the autism moms who are a force to be reckoned with!

We could really do with those guys on our side. If XMRV is dually implicated in ME/CFS & Autism think of what we could do together.
 

Cort

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I know for a fact the autism community has a couple of senators on their side. I mean these are hard-core supporters, not fair-weather friends. There are some rich, powerful and connected people affected by autism (e.g. kids or grandkids).

It also helps that the disease is obvious to see (not hidden like CFS), and occurs in children.

Finally there are the autism moms who are a force to be reckoned with!

We could really do with those guys on our side. If XMRV is dually implicated in ME/CFS & Autism think of what we could do together.
I agree - what powerful, powerful partners they would be :)
 
R

Robin

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That is a very interesting link. I was surprised to read there that the moderators here can read our private messages. They really aren't "private" at all, are they?

I miss Khaly. She is intelligent and articulate, and she gave a perspective which was quite different from that of the administration of this forum, which gave the forum breadth and reason.
She's referring to the linked prohealth stuff here.

http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1384254

As a former moderator on this site, I will say with 100% certainty that they absolutely can not read PMs.

Admins on this site have the least restricted privileges (moderators are more restricted than admins) and even they can not read PMs.
 

Rrrr

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I would very much prefer a normal interview with quoted questions and quoted answers. The interviewee should speak for herself for the most accuracy.
yes, i, too, prefer this type of interview (with the interviewee quoted). is that possible, cort? or too hard? i know that requires transcribing. and that is a lot of work!

update: nevermind. i just read that the interview was from an email chat and not quotable due to passions. i have experienced judy's passions, too, via email, and tho i LOVE THEM it is best to tone them down before we post her thoughts publicly...
 

MEKoan

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Hey Roy,

As a pretty consistent thorn in Cort's side :innocent1: I can say that one is not booted for being so.

I miss Aftermath, big time, but completely understand his reasons for leaving. I think it was a big, big loss to the forum.

There is a lot of opinion mixed among the fact in that thread. Some I know is probably true for others because I've experienced it myself - being slapped behind the scenes by a mod/admin, for instance. Some I haven't so I can't know or comment. PR has not been and never will be perfect. What is?

ProHealth once, many years ago, banned me for asking why another member was banned because, at the time, there was a rule you could not mention the disappeared. It's changed now, that's good. I protested the banning of another member here and, well, I'm still here.

I don't always get where some people ( :innocent1: ) are coming from but nobody has ever stopped me from saying so. And, fortunately for me and my comfort here, the views I share are the majority views on the forum at the moment.

I'm here and not there because there are more members here who share my symptom complex than on PH. I'm here because there are a lot of very bright members here. I'm here because the global community is better represented here. I'm here because the science is discussed and debated in a way I find educational and stimulating. I like some of the forum features - like being able to quote a post - because they further the dialogue but it's not a top priority. I'm here because of the other people who are here.

There are always going to be people who don't agree with me! :worried: Crazy as I may think that is ;) but, so long as there is not censorship which silences my objections, I can live with that.

I'd sure like Aftermath to come back, though.

:hug:

PS Good thing about the PMs!!!!!
 

Rrrr

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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.
i just sent the autism speaks link you mention above to WPI's grant writers. michael someone-or-other. i called the WPI main number and sent the link to the woman who answered the phone and she said she'd send my email to michael.
 

Rrrr

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quote from cort's interview: "Dr. Mikovits stated she knew Dr. Huber's and the CDC's papers were at the publisher and it sounded like she was feeling good about them."

does anyone know what publication dr huber's paper will be in???? and is this linked to XMRV at all? (i'm in dr huber's study.)
 

Rrrr

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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 :)
cort: i'm confused by the statement that WPI has received no federal funding. their current XMRV study is with the NIH.

rrrr