Discussion in 'Fibromyalgia Main Forum' started by skeptik2, Dec 4, 2010.
Go to mcwpa.org
See the winning Ad!
Tell everyone you know!
Well THAT'S going to grab some attention.
I agree with Kina. We don't know enough about XMRV yet and we don't know that it has anything to do with people getting CFS. I think this ad is a really bad idea at the present time.
I do understand your points, each of you.
First, the WPI is on every Advocacy group's mind, and this one
is no exception. Funding for them is vital to all patients.
The press release coming out with the Ad will make sure all
know about the WPI, too.
Patients developed these ads; some are XMRV positive and very
sick. 51% of patients voting chose this ad out of 4 designed.
The patients ranged from 31 years sick to a very few under five
If you go to the website, you will see the Goals and getting
funding for research (especially for the WPI) is in everyone's
best interests and minds. Not only Centers of Excellence, but
nationwide testing and treatment centers so that all patients
are within bus distance of care, like the HIV/AIDS patients.
Dr. Ila Singh's patent proves XMRV to be not only in ME/CFS,
but in prostate cancer and breast tumors (25% of all tumors
looked at on autopsy!) You can see it here:
Retroviruses have never been known to be benign, and whether
XMRV/MULVs prove to be co-factors causing or allowing all the
other viruses to reactivate, as many of us have, or whether it
is the central cause of damage to the immune system, of course
is still to be figured out.
The fact that the scientists of the world think this is something
to be reckoned with; that the Red Cross has banned us from
EVER giving blood; that Dr. Ian Lipkin the famous 'virus hunter'
is now working with Judy Mikovits and on speaking events with
her, is at the very least, 'telling'.
Most long term patients have felt from the beginning that there
was a serious viral component to "CFS" in the US and M.E. in
the UK. Viruses ARE communicable; so are Retroviruses.
Yes, there may be a backlash against us; but what would you
rather: continue the backlash vs us 'yuppies'/tired people and
the CDCs lies about our illness; or a backlash that will get the
WPI the funding they need to continue their incredible work for
I would rather the latter, and that the world understands the
danger there is in this next RV known to infect mammals.
Visit the mcwpa.org website and read the articles
there. I understand that tomorrow the Press Release will be there also. Read
the bullet points of our Goals. Knowledge is crucial for all
advocacy groups so we can make sure the world at risk is
aware of possible danger and help us make sure this real
epidemic is stopped in its tracks.
Do you think PH would be publishing this info if it were not
Thank you, ProHealth. You have done so much for us for
so long, and your support is crucial to the history that will
be made. May all these patients continue to support the
work and the products you offer; they have been instrumental,
maybe even life-saving in some instances. May you always
prosper and grow.
If this group did NOT do something huge and public nothing would be done. Are you aware that the CDC/CFS was dropping the money on CFS research to under $4m, so that when Reeves retired there would be NO MONEY for CDC/CFS reseaerch. This means NO CFS at all. NIH spends tiny amounts on CFS. So the intent of the CDC, NIH and other Federal health orgs was to "kill off CFS" and the newly discovered Retrovirus.
Are you also aware that this Retrovirus (or one much like it) was also patented in 1990/91 and discovered by Dr. Elaine Defrietas, Dr. David Bell, Dr. Paul Chenny back in the mid to late 1980's and the CDC did a replication study and came up with two opposing studies - so they could KILL THIS 1980's retrovirus research off - and they did. The NIH cut off all further research on Retrovirus study until WPI picked it back up.
Read www.oslersweb.com - time to get nasty, use our OUTSIDE VOICES.
The AD is explosive and accurate - quotes from medical documents, etc were used. It was vetted by several researchers/doctors before it was submitted to the Washington Post so that NO ONE could make a negative comment about the information in it - exept those that are ignorant or against major advocacy.
I have been sick in bed for 16 years. My husband has been sick for 6 years. Contagious? I think so. So, either we fight like crazy or we disappear as the CDC had planned would happen.
Don't like the AD? Then ignore it. But be grateful that several people killed themselves for four months and many gave large amounts of money that they really did not have so that this AD would come off.
Think before you write. I expect to see a THANK YOU from you after Monday and when the whole CFS/FM issue hits ALL the world's newspaper, TV, researchers, doctors, public policy makers, NIH/HHS/FDA/CDC --- those that have the money to spend on hundreds of millions for CFS - not $3million from the CDC for psychobabble to call us lazy and crazy - damn us and then let the money/funding just go away - and with that funding - the disease goes with it.
I lived/worked in Washington DC for 25 years. I KNOW what goes on. I KNOW about Federal funding, politics, game playing, etc. I assume you do not live or have worked in the DC arena.
Will be awaiting your Thank You to the MCWPA on Tuesday -
Might ask her. I think she has had more than enough of "inside voices" and wants blood.
Hit her blog www.oslersweb.com and see all that she thinks. I won't speak for you - she can do all of that quite well.
And yes, to a degree working for the Federal government for 35 years as my sick husband has in a very senior position and my 20 plus years as a Federal government contractor supporting the Feds and seeing how it all "really" works does give me insight that those outside the Beltway do not have. I know how it works. I WORKED the system. I helped the Fed agencies get their funding, wrote proposals to them for work, understood who had funding, who didn't (and why), and all the rest of the inside games that the Federal government plays.
Maybe you could explain to me why the CDC/CFS budget kept dropping every year? So that it went away right before Reeves retired and then POOF! No more CFS. No more CFS at the CDC or in the other Federal health orgs - gone! And that would have been the end of CFS forever.
So we have to use the Retrovirus that has been linked to CFS and other diseases and cancers - this retrovirus affects every single person in the world and MUST be researched. So if the AD looks scary, that's because IT IS.
Go read what Hillary Johnson thinks - I would bet she LOVES this idea very very much.
Said it did not believe that it was HIV like and that it only affected a small number
I googled Washington Post HIV Like Virus to try to get response to the ad.
Maybe I can address the content of the ad.
We had researchers review these ads for accuracy and I am a former newspaper editor, so checking for accuracy is in my nature.
Are viruses in blood supply? Yes, the FDA / NIH study was of stored blood from donors. The virus was still there after years. It doesn't disappear.
The ad says 20 million could be infected. That is true, not only 20 million, but worldwide, many more. The CDC is now using the word "infected". So that is the right word.
The percentage of the studies in first paragraph, accurate. We were careful to use "family of retroviruses" instead of just saying XMRV, which is not specifically accurate according to the FDA study. Scientists are debating about whether it is one or multiple, we stuck to what the study we are referring to says.
Likely transmitted by blood. We aren't saying it is. We say it likely is. And, we show in the reference that we aren't making that claim, a government official who is charged with protecting the blood supply made that claim.
We also analyzed the statement that it is fatal. I spoke to a well-known researcher about this, and he will back us up. Plus, we have CFS on the autopsy of Sophia Mirza. And, Casey Fero was diagnosed with CFS at nine and died from heart damage at 23.
As disabling as chemo or late-stage AIDS. Almost exact quote from Nancy Klimas.
Will you or your child be next? It can affect anyone, even children.
This bold, but definitely accurate.
But, I always welcome the challenge to make sure.
Where is the negative response to the WP article from WHO? I put in the same words in google and did not find anything about WHO. Maybe it has been bumped back?
That's all we need.
"Almost exact quote." Huh???
Nancy Klimas exact quote: “They experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy…” Dr. Nancy Klimas, University of Miami, 2006 Press Conference
And to PANDORA and to all others who have volunteered their time and to those who donated money to make this campaign possible.
Thank you all!
I am quite disturbed about this ad. Not only does it misrepresented known facts about XMRV, it grossly exaggerates, the possible impacts of XMRV based on our knowledge as it stands today.. These statements may override any of the parts of the ad that are accurate, which it does indeed have.
Unfounded scaremongering is not good PR.
The blood donor issue is precautionary, to guard against the worse case scenario. It does not prove that XMRV is this prevalent in the blood supply nor that it that contiguous. Sick people should not be giving blood. Ever.
Could the ad be accurate? Absolutely. But at this time WE JUST DON'T KNOW.
This is reality folks, but keep those blinders on, look for all those conspiracies, continue to point fingers, tell yourself XMRV has been proven to be the cause of CFS because that is what we want, not by the science.. Let the anger fester and boil but don't expect results. It's counterproductive. What the ad says is not fact. It might be someday but not now.
Please don't say I don't believe in XMRV or am not loyal to the cause because I don't tout the “party line” where you are seen as the enemy if you dare have a different opinion.
I live with this DD, too. I live with the pain, the exhaustion, being on disability and losing my former life. I know what it is like to be bed bound/housebound.
I would love to see XMRV pan out. Nothing would make me happier.
I am not discounting that many people put a lot of effort and hope into these ads but it completely missed the point. I don't see it as generating huge donations or make reporters run out and do some investigating. The minute they see the negative studies, not only will the ad be discounted but also our community. .
We don't have a standardized test for XMRV. We don't even have a standard definition of ME/CFS or even know if they are the same. There are more negative than positive scientific studies looking for XMRV. This is what the scientist are trying to sort out. The ad touts selective interpretations from selective studies and unfortunately like a lot of the PR by a fringe minority, this does not put us in the best light. It's embarrassing.
Why not at least wait until the blood committee gives its report? This was way too premature and if we had waited we might have had more information that has some meat to it.
This ad does not represent all of us the CFS community.. Maybe it's time for others that feel the same, to speak up and use their “outdoor voices”.
If I have the energy I might post later what I think should be done.
PLEASE take from this what you want.
There is a huge difference between empowerment and anger.
With all due respect.
Thanks Tina and everyone who made this happen
I have been trying to stay abreast of the research and the politics, especially since Lombardi study year ago in Science and I think we need to go to great lengths to keep this alive and get going on clinical treatment trials etc I am disgusted by CDC obfuscation over the years and now we have some momentum going.....I say, go for it!
thankyou thankyou thankyou thankyou THANKs!
It was a wonderful, well done ad.
I expected some negative response to it...like from the World Health Org. but we
have to keep the momentum going!!
Can someone point me to what the WHO had to say about the ad or did they really comment about this specific ad. All I can find when I search is the Coral Gable's article.
I would also be interested in their stance on the XMRV findings.
gap and kjm--
I agree with both of your impressions of this ad--there is nothing for me to add, that both of you haven't already addressed....probably gonna do more harm than good in the long run--especially as the general public doesn't either know or care about XMRV, and those that are 'in the know' so to speak are just so......shrill..... about making sure the info gets out there, regardless of any negative blowback that may occur down the line.
<heading for fireproof room>
Is that true its fibromyalgia dx folks complaining? fyi fms could possibly be caused by xmrv too however dr cheney said there is a dif between fms and cfs, he distinguished it with q interval in heart.
anyway, fibro dx peeps could go do some cbt and get treatment eh, I will look into the antivirals myself......
Thank you for sharing this. Adds like this are good for educating people about CFS.
I don't understand your problem with the present policy of giving blood. Do you really think that any of us would give blood, given the nature of our DD? No one who is sick is allowed to give blood and CFS would be categorized under that. I thought you had to fill out a health status form before giving blood and would think that would provide the necessary information to exclude us from giving blood.
If the science proves the relationship of XMRV as well as the severity is something to be concerned about, then a federal ban would be appropriate.
I respect that the Red Cross made the clarification that the "illness" ban includes CFS/ME.
Do you personally think science has already shown that a permanent ban, specifically on CFS/Me is warranted at this time?
Interesting subject. :> )
I thought of going through the process of giving blood just to find out if I have htlv or not, and then don't give it once went thru the screening. Children with hemophilia died of aids in the 80s from the blood that was donated.
We need some attention unless we just want to lay around and die!!! My sister is having the same thing happen to her now at 42 that happened to me at 40. The same symptoms exactly!
I want no one to have my blood God Forbid and so many died from transfusions and other ways of transmitting. If you think it is fear mongering so be it.
We need the attention and whatever it takes for dr and scientist to know this is a real disease and not a SYNDROME.
I love the Ad and it was the one I voted for.
Like you said many people are clueless and pay no attention. They still do not know what a retrovirus is. So they will flip the page but hopefully we can catch some attention.
Of course we need attention. But we need to give accurate information.
Skewing scientific information, exaggeration, catastrophizing is not the kind of attention we need.
While I am sure this was not the original intent, the ad sounds more like propaganda than education and that is a shame. A real shame.
"Whatever it takes" is not justification for this type of behavior. A child will use this reasoning to throw a tantrum.
We're better than that.
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