Discussion in 'Action Alerts and Advocacy' started by fred, May 2, 2010.
Um the CAA doesn't do research.
(Cort, the following is not directed at you, but at whoever reported posts in this thread as "offensive".)
I think whoever complained must have found this comment to be the worst 'offender':
The above is clearly a statement of opinion by the person who posted it, and refers to an organization that is supposed to advocate for people like the poster. He was criticizing an organization -- not a person on this forum, not a religion, not an ethnicity. There is no way that the above quote violated a forum rule. Therefore whoever reported it is effectively calling for censorship of certain opinions about the CAA. I hope that member (or those members) realize that this looks bad, and ESPECIALLY bad on a thread dedicated to raising funds for the WPI, given the tensions in the community and the criticisms many have had of the way the CAA addressed the WPI findings and the European studies. Think about it - if you care about the CAA's public image, you are only doing more damage by taking such actions.
Many people here are critical of the CAA. It doesn't help if you request moderation of posts that clash with your opinion of the CAA; if you do, it will become known that a certain poster was taken to task for a negative opinion of the CAA, and that will only serve to harm its image in the community.
Back to Cort -
I know you did not try to moderate, as you are well aware of the forum rules yourself, so I have no problem with your response -- except that it has the potential to completely hijack a thread which we all can agree is more important than this argument. If you or anyone else has a problem with any statement posted here on either side of this argument, would you please take it up with that poster via private message, or start a new thread to discuss the issue and invite that poster to participate? There is still money to raise, and it would be a shame if people were turned off of this thread or if it lost momentum due to arguments about the CAA. Let's keep the big picture in mind. :Retro smile:
I didn't see any posts which were offensive or remotely breaking forum rules. Sometimes people's complaints are unfounded.
About the Webinar thing, I think the CAA got funding from a parent of a sick person to cover the cost of these (Kim McCleary mention this in the webinar with Leonard Jason - someone please correct me if I heard wrong).
A patient group has different roles to play. I agree that funding research, and/or pushing for public funding of research, ought to be one of the top priorities, maybe the top priority, but a patient group also needs to do other things. (And I am saying this as someone who thinks is really, really :Retro smile: into research, and thinks research should probably be the primary focus of patient groups - but that includes all patient groups and not just the CAA) So personally I don't really have a problem with them doing the webinars. I don't see them as interfering with research efforts.
We seem to have lost our momentum here a little........
OK, I'm going make another donation to WPI right NOW!!!!!!!!!!:victory::victory::victory:
Yay Lily :victory: you beat me to it Here is what I wrote in the meantime:
Thank you Cort , Dr Yes and Orla.
Did someone mention fundraising? $5/mth (or $60/yr, however you do it) will bring you a nifty WPI butterfly.
So to echo Dr Bell lets do this!
Do what Dr. Bell says!
Donate to WPI
Make recurring donations to WPI
Next week is my birthday. I am living on a shoestring but I have generous friends. I don't need anything and I'm going to ask them to donate the money they'd spend on me instead. They will like the idea.
This is a great letter to forward to our email lists. I think we have to resort to chain letters. I know some doubting people with ME/CFS.
Also Dr. Mikovits said they were finding XMRV in 35% of people with overlapping conditions. We need to reach out to organizations for people with lyme, gulf war syndrome, autism, fibromyalgia, MS. There is no coalition of groups yet concerned with XMRV.
I totally agree kdp. The people at xmrv global action are trying to do that. But things move slowly. Especially for ME/CFSers.
My fall-back thought is that when the science proves itself, what may be taking time and persuasion and......now, instead will quickly happen and these groups will form alliances quite quickly.
I spoke to a charming person at WPI. It cheered me up no end to be generous and say thank you to her.
A little bit of happiness, from the WPI
I'm very impressed with whoever got xmrv global action together. Seemed fast to me. Their total donation to WPI said [ $12,667-not right]. There must have been a facebook glitch. Later it was $ 667. I think it is a great place to give where we can watch a total growing.
I hope I can randomly write to some other groups on facebook, because they probably don't get to see the Dr. Mikovits Q & A with 35%. CFS has had such a bad rap, I think the other groups might prove the science and have funds for studies.
I have a terrible time asking for money for myself, or an illness I have, but seeing the faces on this forum, and that some are still young and recently sick makes me have to stick my neck out. For ten years (in the nineties) when I first got sick I thought research was going on. We can never be so uninformed again.
I don't want money spent researching my symptoms
this one is easily remedied
NO the CAA are not doing excellent research .Excellent research is making observations formulating an explanatory hypothesis and then testing such Excellent research is powered to 95% confidence with confidence intervals whose spread is no more than 5% either side of the mean.this makes the information generalisable into a population.Excellent research uses appropriate parametric or non parametric tests with P values of less than 0.001 or r values of 0.9 or above..None of the CAA research falls into that category.There is a plethora of pilot studies and no more. We for the first time in history have quality research which has passed the most stringent peer review system in the world .None of the CAA sponsored studies have or will ever come close for the reasons I have already outlined/Xmrv research could lead to a rapid cure possibly within months The CAA research could not.If the CAA sponsored high quality research then it would not need protecting.Because they are not been supportive of the research into XMRV and purport to be an advocative body then ,in my view,they deserve the harshest criticism possible.
I have sent David Bell's letter to all my email contacts. This is what I have said FWIW
I need your help. The letter below explains the situation. If each of you sent $10 via paypal to http://www.wpinstitute.org/help/help_donation.html it would make a great deal of difference, and allow the current research to continue. There are thousands of us online, we all have friends and family, and this is make or break time for ME sufferers world-wide.
Sorry to have the begging bowl out, but we really need this research to continue. The numbers of people worldwide with ME are increasing, it is transmitted mother-child, between couples, and via blood transfusions. Canada has banned sufferers from contributing to blood banks, Australia is moving the same way, it could be you next. XMRV is known to be a factor in agressive prostate cancer. It is implicated in Autism. It needs nailing, and the truth, whatever it is, needs to be discovered.
If the Whitemore Peterson research http://www.sciencemag.org/cgi/content/abstract/1179052 is corroborated by further studies, then an awful lot of people in positions of power will have to admit their error. I cannot think of any other reason to deny public funds to this worthwhile cause.
Bless you all,
jace x (who added to her regular donation too)
The group in the UK is tiny and the least funded of all.That they should be relied on when the CAA is squandering money on webinairs and pilot studies is unbelievable.There is no other plausible hypothesis that can explain the spectrum o symptoms in ME/cfs.Unless someone can produce one to be tested then the CAA should not fund the research.it should have been arranging a replication study on oct 10th 2009.We have had a plethora of pilot studies which have produced no scientific evidence of sufficient quality to have had any impact at all on policy decision makers.that is an objective fact.doing more of the same is incomprehensible
I'm glad to see David Bell speaking out for funding the WPI. He is very reserved. I was quite involved in things back then, and bad things happened. Although I doubt the same thing will happen again, things can be slowed down. Thanks to everyone who is donating.
I agree with Gerwyn that research should be towards a cause.
Cort, who is funding that study with GSK? Are Biobank specimens being donated free?
bit the bullet
I just sent the following message to all my family and friends on facebook. I am also going to send an email to everyone I know. This is very difficult for me to do as I have always felt humiliated when I tell someone about my illness and most do not know I have CFS. However, I think this is important and I need to overcome my fears. I hope everyone else will do the same. We cannot fund the wpi alone. We need help.
To all my family and friends: The Whittemore Peterson Institute, National Cancer Institute and The Cleveland Clinic has found the retroviral infection XMRV in greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. http://www.sciencemag.org/cgi/content/abstract/1179052?ijkey=m3wzKT4yJqEyk&keytype=ref&s...iteid=sci In a smaller study XMRV was also found in persons with autism. This new research could have a direct impact on finding a cause and cure for conditions such as ME/CFS, Autism, Gulf War Syndrome, chronic Lyme, Fibromyalgia, atypical MS and Cancer. My family is directly affected by ME/CFS, Autism and Lyme disease. If every friend and family member of persons affected by these diseases donated just $10 to WPI this would go along way towards speeding up research. Please go to http://www.causes.com/causes/421525 and read Dr. Bells plea for donations to the WPI. Dr. Bell has been directly involved in CFS research since the first outbreak 25 years ago. Scroll down to "fundraising" and click the donate button to make a one time or monthly donation to WPI through the XMRV Global Action Cause. Thank you!
i, too, am one of folks here who has no money to give, but, hey, we all just raised $50 for sending "thank you" flowers for dr. peterson, upon his retirement from WPI, by asking 5 folks to donate $10 each (we did this on another thread on this forum). and we raised it in a few hours. so we can do it now, again, here!
i'm donating $50 i don't have. it is the least i can do for WPI. they are my hope right now. my first real hope in 20 yrs.
and i sent dr bells letter to everyone i know. maybe they'll donate just so they can stop hearing me complain about my illness...
DONATE MORE THAN YOU THINK YOU CAN, THIS IS OUR LIVES WE ARE TALKING ABOUT. WE ARE FIGHTING FOR OUR LIVES HERE.
I contributed an additional $60 to the WPI because of your post, Rrrr. You can add that to your other good works. :Retro smile:
OFF TOPIC (i guess, what the heck...just point me in the right direction)
in ADDITION to the wpi, pr, caa (controversial to many, i know), etc...but im trying to have SEVERAL OPTIONS to offer as potentially deserving of donations/support on my fb pg. in other words im "borrowing" some of oerganix stats (#58) to post - leading up to to may 12...and if im showing the lack of cfs research funding, i need to show how folks CAN help...and i'd like options to list. Any other ideas? (Does dr. bell have a place for donations?) thanks.........j
You can also try a Google Site Search
Separate names with a comma.