FDA/NIH PAPER IN LIMBO; PATIENTS UNITE, by Mindy Kitei

Recovery Soon

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Include a picture of a young person with CFS on oxygen in the pamphlet.

Can you imagine some heart by-pass patients telling their doctors they don't want to have blood transfusions. Then the blood banks will put pressure on FDA and other government agencies to get it right.

Tina
Or....We could hand out flyers/photos of Blood Transfusion Bags marked:


CONTAMINATED- XMRV

It's Out of the Bag
 

redo

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Mindy, you should really think about freelancing an article for one of the big newspapers. British or US. I am sure you could get a decent hourly wage (you could use bits and pieces of old and new material and make it into an article) an you'd get the word out about the disease...
 
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To Redo and others who have emailed me about pitching my articles to newspapers, etc.

I pitched the two-part "Blood Feud" article to many online and print venues. No one was interested. But I wrote it anyway because I believed that the back story and the current story were important. That's also why there's a donate button on CFS Central.

Mindy
 

Tembo

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Thanks Mindy - your the best:Retro smile:Fantastic Article - Im so glad you are fighting for us.
 
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I don't recommend picture of blood with statement saying it is contaminated. We have no proof. Strong circumstantial, yes, but no proof.

Anyway, it would be best to say "It's in the bag" instead of "out of the bag".

Tina
 

Sing

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It turns out not to be about persecuting vulnerable people but about money, first and foremost. MONEY.

Here is another strategy, to try to assess how much money will be saved, how much time lost to work saved, due to effective treatments of XMRV.

Of course there is the loss-of-face hurdle in the meantime, but I am sure with all the other big news these days and their skill at spin, this shouldn't be too big a problem. They can still make themselves, those who blocked recognition and treatment for years, look like the heroes of the day.

Great investigative work, reporting and advocacy, Mindy!
 

bullybeef

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Yeah sing, I don't why some cannot understand that the reason for a cover up would simply be for monetary gain. We would be talking billions, if not trillions if XMRV was proven a new disease entity.
 

Recovery Soon

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I don't recommend picture of blood with statement saying it is contaminated. We have no proof. Strong circumstantial, yes, but no proof.

Anyway, it would be best to say "It's in the bag" instead of "out of the bag".

Tina
The print below (or on the back) would clarify the known facts.

"Out of the Bag"- suggests the coverup, in addition to the transfer of blood to recipients (where it goes when it's out of the bag, obviously).

"In the Bag" works on only one level (literal)- and not very well. (That was the first line I thought of and discarded.)

But hey- creative opinions are subjective.
 

Recovery Soon

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"contaminated" with a question mark would be good.

Tina
I threw that around as well. Certainly would be safer for the time being.

I'm a little biased towards the most assaulting reaction possible (which may or may not be justifiable with full disclosure at bottom).

But yes, you do have to be careful.
 

Sing

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Bullybeef and boomer, Suzanne Vernon said yesterday on the webinar about three research projects that the Japanese are much more aware and motivated by the loss of money and productivity to their society because of ME/CFS. In the USA, she said, the loss of income or expense is thought to be about $25 million a year. But in our culture the research effort gets hung up on the individual egos of the researchers (or I would add, the departments and organizations led by such individuals). By the same token, we have also seen US research efforts move forward through the commitment of individuals too. Anyway, there was a discussion towards the very end of the webinar on those differences in culture with the Japanese. She found that they are really forging ahead now in a coordinated way with their research. And she and/or Kim both wished that our culture were a lot more motivated by a recognition of what is being lost in terms of productivity, $, through our illness (and I would add: then what it would cost to effectively research and treat our illness.)
 
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> In the USA, she said, the loss of income or expense is thought to be about $25 million a year.

Actually Reeves said at least $9 billion in lost production, in the recent paper. I figure that's a lower bound.

But anyway, a more interesting matter - do you know if they are doing any XMRV-in-CFS work in Japan? There's nothing Japanese listed on Cort's grand list of XMRV studies. Cort also has nothing for China but I thought I heard about something there - could be wrong (maybe it was something on XMRV in general, not pertaining to CFS).
 

Lynn

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Suzanne Vernon said yesterday on the webinar that the Japanese are studying XMRV but have not published any papers as of yet. They are due to present something at the International XMRV conference in September.

Lynn
 

Alexia

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Suzanne Vernon said yesterday on the webinar that the Japanese are studying XMRV but have not published any papers as of yet. They are due to present something at the International XMRV conference in September.

Lynn
Thank you Lynn. That's great news, if they are using the CORRECT research methods !!
 

Hope123

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> In the USA, she said, the loss of income or expense is thought to be about $25 million a year.

Actually Reeves said at least $9 billion in lost production, in the recent paper. I figure that's a lower bound.
I haven't delved deeply into the methods of these papers but according to Dr. Leonard Jason's 2008 paper it is $18-26 BILLION, even with a lower prevalence of 0.42% of CFS. It looks like the 2004 Reeves paper only used direct costs (e.g. medical bills) whereas the Jason paper also included indirect costs (e.g. lost productivity, etc.). As many of us know, this is a huge amount as being sick with CFS for years-decades means we can't work and may have to rely on the government.

Using ME/CFS prevalence data of 0.42 and indirect costs estimates from Reynolds et al. (2004), the direct and indirect cost of ME/CFS to society was estimated to be $18,677,912,000 for the community sample and $23,972,300,000 for the tertiary sample. These findings indicate that whether or not individuals are recruited from a community or tertiary sample, ME/CFS imposes substantial economic costs.

http://www.dynamic-med.com/content/7/1/6