lululowry
Senior Member
- Messages
- 103
- Location
- Athens, Georgia
Wait, so there is a NEW, as yet undisclosed CDC sponsored study??!?!?
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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!
By "toned down" do you mean she was less emphatic in her confidence than in previous statements?
Not really sure what this means. Thanks.
She's very passionate...let's just say that some of her responses were considerably toned down....
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.
http://www.facebook.com/pages/Whittemore-Peterson-Institute/154801179671
Very happy to see Cort and Khaly linked up with WPI on FB today!
Synergy!
http://www.facebook.com/pages/Whittemore-Peterson-Institute/154801179671
Very happy to see Cort and Khaly linked up with WPI on FB today!
Synergy!
I was surprised to read there that the moderators here can read our private messages.
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.
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What?
I would very much prefer a normal interview with quoted questions and quoted answers. The interviewee should speak for herself for the most accuracy.
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.
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