Discussion in 'Action Alerts and Advocacy' started by awol, Aug 11, 2010.
is your stance going to be similar to that of a political party that continuously reprints and refers to cherry picked information and just ignores the various documented catastrophes they are responsible for. You responded to the post 37 but not post 36 the one that clearly identifies some of the numerous incompetence's Vernon and others have been and are involved in via the CAA in return for their salaries of over $170,000.
This is not to mention the Peter White notorious British psychiatrist issue in their advisory literature. Have you conveniently forgotten how instrumental Vernon was in her 20 years shaping CDC policy. Have you bypassed Vernons unscientific jibes at the WPI? Do you justify her stance on the use of the oxford criteria in the Dutch study?
Or are you saying that all this nonsense and damaging rhetoric is in the past (presumably it stopped very recently) and Vernon and others in the CAA have seen the error of their ways but have not got round to offering an apology for the damage caused to patients and the credibility of ME being understood for the neuro immune disease that it is. This in many peoples opinion has left the CDC with a free reign over ME and we all know what effect that has had on patients
PS. what is now and has been over the last two decades the CAAs opinion of ME ICD G93.3 neuroimmune disease or do they believe that now and historically ME to be different to CFS.
Want attention, funding and real research: Major media campaign launched
We ALL agree on two things: First that we have a terrible disease that has destroyed our lives and is not being funded and researched nor taken seriously by the Federal government organizations (e.g., health, SSA, others) researchers, physicians, public and many of our family and friends. Second, we all agree that our major enemy is the Centers for Disease Control (CDC) who have made it their mission to damage any real research on ME/CFS and now XMRV. The CDC has done a great job in damning us and continuing to keep us sick and demeaned for the last 20 or so years.
We agree on the above, correct?
So, get off your bums and butts and go to the Facebook page: http://www.causes.com/causes/511536?m=f042604e
A PANDORA sponsored effort was started about a week ago to obtain members and funding quickly in order to get half and full page advertisements in the major newspapers and other media. When I say MAJOR newspapers, I mean The Washington Post which is read by every person in Washington DC including the President, VP, Congress people, investigative orgs, researchers, journalists, muck rakers, and millions of very bright, public policy people in and around the Washington DC metro area (which includes the Maryland and Virginia suburbs). This major media campaign will hit those very critical targets of people and organizations and GRAB their attention to get them informed and involved. I lived in the DC area and just about everyone reads the Washington Post.
This Ad campaign is sponsored by PANDORA under Marly Silverman (a make-it-happen ME/CFS Advocate) and several other ultra smart, savvy and hardworking people. In about one week, they have raised over $1,000 and have 611 members as of 12m EST. Those numbers are pretty incredible for a campaign that just started and especially given that we ME/CFS sick don't have the extra money to give to efforts that we don't believe will have an enormous bang for the buck.
The half page or full page advertisement is in the major development stages now with this group killing themselves to make this happen in a most timely fashion. These people know that this HUGE message on ME/CFS and XMRV must come out shortly or we lose our most critical time window for most effect. The advertisement will have logos/graphics donated by professionals, and the ADS will be signed by the ME/CFS support groups and the online websites that support the ME/CFS people. All of these groups together on one page show a very powerful, credible, and united front - and this is important. All groups that sign will also have their website address posted, thus they too get more members and funding - and are able to get more people informed and involved.
So, I think that both forums can agree that this is a fantastic idea and one that MUST be done NOW. We all understand what our window of opportunity is and we all know we must take advantage of that open window before it closes on us again. So please, get to this Facebook page, become a member and give money. These people need money for these major newspaper ADS as they are costly but will have the greatest impact on informing everyone in the Washington DC area (all the major and minor players in public policy/journalism and on and on) about ME/CFS and XMRV. And yes, using the FACTSas they are, the CDC will take a major hit. As many have pointed out, the CDC has hung themselves with their own rope and this group of people aim to use that rope (the CDC's own words, as stupid as they are) against them. Hang them using only the FACTS -- and that's most dangerous to them.
What will this major media campaign get us? Major attention from all areas and players in Washington DC. Your Congress people and their staff read the Post. The media people read the Post. The public policy and watchdog groups read the Post. Doctors, researchers (esp. those in the Federal governement and in the large bio-technology areas of both suburban Maryland and Virginia) read the Post. Lawyers and lobbbyists read the Post. Everyone reads the Post to see what's in it for them and how they can grab information and use it. Happily, those that do internal investigations on Federal organizations read the Post.
I lived in the Washington DC area for 25 years and everyone read the Post. We used the Post for ideas, information (of course), and to find out what was really going on in the Federal government. The Post is great for breaking dirty stories that involve the Federal agencies, Congress, etc. That's their business. And this media AD will kick up more dirt on this entire situation that any other means - including expensive lobbyists, marches, pleas to Congress via emails, etc.
Then there is the New York Times (NYT). The NYT is the Nation's newspaper. The NYT is read everywhere and can be found in the most remote and rural places in the US and abroad. The NYT spreads the information net on ME/CFS and XMRV far and wide - across the world. It hits all countries and does much the same in informing the public, public policy people, government types, and the researchers, doctors, and others who must diagnose and treat ME/CFS. NYT is the BIG NET.
So, please. Get to the Facebook page and become a member - get others to become members and give money to this incredibly critical project. THIS is how we all will get the attention, funding and research that we so badly need.
I am a huge supporter of this idea and believe that at this point in time this is the only thing that is going to work and bring the attention (massive amounts of attention) to ME/CFS, XMRV and the failure of our Federal health care organizations AND THE CDC to deal with our disease and this newly discoverd Retrovirus. You all have read that XMRV causes an aggressive form of prostate cancer. And you all probably believe that there is merit in the belief that XMRV may also cause other diseases (MS, Autism, other diseases), cancers, and that hundreds of millions of people worldwide are either infected with or are carriers of this virus. Now, wouldn't you like the government and policy people with the POWER and FUNDING to take note of these mind-blowing facts? I do. And so do over 600 other people.
Links for donating are set-up and other means for providing money to this project can be done if you prefer. If you would like to donate but not through Facebook, you can do so at: https://www.paypal.com/us/cgi-bin/w...737ba21b081983b975b35e10fe14f76758e707b997bca
Be sure and enter "Our Voice, Our Message, Our Lives" in the Description to make sure the money will go to this campaign. We welcome other organizations setting up their own fundraising fund for this.
Contact the Administrators on the Facebook page and ask how to get your money to them or if you have any questions. These folks are busy trying to get this ready to go, but they will respond.
Time is of the essence now - we ALL agree on that. Help these people move it out as quickly as possible to get the money to do a really bang-up job that gets a huge response from the readers of the Washington Post and New York Times newspapers. This really is going to be the biggest and far reaching bang for your buck/Euro there is. And it will generate far more research money than what we sick alone can do.
Finally, note that this media campaign is intended to be an on-going initiative. The major newspapers get hit first and then, with more donations, the other media outlets will be used. So, money, money, money is needed badly. The Admins of this group have been told by the Post that other advertisements have gotten a great deal of media attention and interest. THIS is what we need NOW.
Muffin, do you think you need a new thread on that specific initiative? This thread has got a bit involved in other stuff and that proposal would seem to deserve a place of its own to get attention.
My hope is that all PWME can work in a collaborative way to advance the overall objective of getting good research done. We will not all obviously always agree on tactics and mediums. That is quite ok. I have joined the cause "Our Voice, Our Message, Our Lives" on facebook and I intend to help in the small way that I can with that. That does not, however mean that it needs to be the only project going on. We can not but help noticing, over on the other forum, that noone who has anything to do with the PANDORA project has yet said anything about it there. You are therefore missing out on reaching a large, and VERY intelligent and dynamic group of PWME over there (many of whom will not come here) by not posting there. I mention this because this thread was originally about Project ENOUGH!!! which is being organized there. In the meantime, we also hope that people involved with the PANDORA project will help out with Project ENOUGH!!! in whatever small ways they can manage.
Sasha: Yes, I will start a thread on this since it is just so critical and will finally get the job done that should have been done by all of our health orgs 25 years ago;
All activities that bring ME/CFS and XMRV to the front, out into the public are important. But at this time, this particular campaign is super super critical. Surely you can see WHY it would be so important and able to really target those people that we MUST target?
I support any sort of advocacy for ME/CFS and XMRV. My money (what little my spouse and I have) goes to ME/CFS and WPI.
But for now, THIS is what I and over 600 people believe will work - and work to our greatest advantage.
I know this type of thing works. What has stopped us is that we lacked money and we did not have a very deadly and potentially contagious Retrovirus that is KNOWN to cause at least one cancer and maybe many more cancers and diseases. This is the difference now and this new virus is what will hook many people as it affects EVERY SINGLE PERSON IN THE WORLD.
muffin, I believe you that it will work and I support this project. What we have going on with Project ENOUGH!!! is quite different and complementary.
- An advertizing campaign can not write scientific rebuttals. We can, and already have. You saw our Retrovirology letter.
- An advertizing campaign can not provide concise history of the CFS saga to newspapers to ensure appropriate coverage. We can and have started.
- An advertizing campaign can not counter disinformation whenever and wherever it appears. We can and the more people we have doing it, the better we will be at it.
- An advertizing campaign CAN raise awareness and sympathy to set the ground for alliances and better funding, but it can not actually build those alliances. We can, and aim to, if more people will volunteer for this role.
Project ENOUGH!!! Supports "Our Voice, Our Message, Our Lives". The way to help with that is mainly financial.
We would appreciate it if "Our Voice, Our Message, Our Lives" would also support us. The way to help us is mainly very small commitments of time.
These are complementary projects.
Do you want me to (again) list all the ways the CFIDS Association has critiqued the CDC? Honestly I feel like I've done it several times and I don't want to go to the trouble of doing if you are just going to ignore it - if it would suit you more to persist in your strongly held belief that the CAA is a CDC enabler. If take the trouble to do that I would like you to publicly state whether the evidence indicates that the CAA is a CDC enabler. Obviously I think I can prove that they are not
I'm not asking you to agree with everything the CAA does - I don't agree with everything they do. I just think that words like ' CDC enabler' are way too strong. There are points to disagree with the CAA (as with any organization) but I don't think you'll ever get anything across by attacks like that...Maybe you want them to be more aggressive...that's different from being a "CDC enabler".
If I do that I would also like you to point out any other organization that has critiqued the CDC more effectively or frequently. Agreed?
Is this a serious attempt to look at Dr. Vernon's record with CFS or is this a joke? I tend to think it must be a joke. Are you actually saying that we should trash Dr. Vernon and the work she is doing because that one of the 130 references in her paper was linked to this article? (Talk about cherry-picking. Is that how you measure how effective someone is? By checking the references in the research overviews she writes? Is this crazy or what? I could give you a 125 references that CFS patients would just love but that wouldn't make any sense either. Let's look at what she's actually doing
Six studies all exploring the pathophysiological aspects of CFS. One of them, just published, suggests mitochondrial problems in the brain could be causing CFS - but hey, if that reference is more important to you that a study suggesting oxidative stress and mitochondrial problems are causing it - hey go for it. http://www.cfids.org/about/acceleratecfsresearch.asp
There was also the study suggesting the endogenous retroviruses could be causing CFS - but then again there was that reference to that paper.....
She has created two 3 day Banbury Conferences in which the prominent CFS researchers brainstormed or will brainstorm whats causing CFS - and none of them are doing psychiatriic work. When was the last time something like that happened?
She has created the BioBank in order to greatly accelerate CFS research
She is creating an international Research Network to spur collaboration amongst out far-flung research community
She received an award for 'Research Excellence' at the IACFS/ME Conference, just a year and a half after she took over the CFIDS Research Director position
The CAA created an excellent XMRV study with Glaxo Smith Kline.
By the way pejorative comments like 'former CDC mistress' will not be allowed. This forum tolerates alot but not that. She's obviously doing alot of good work.
Cort,, we've never spoken. Your points are always well spoken, well thought-out. The enmity directed at the CAA is neither arbitrary or without merit. Still, you may be right. So. On those points where the CAA can correct its image without jeapordising relationships -as you have I believe alluded to - let them speak now. Directly. No parsing of words. Let's see them take a stand where their stand is in question. Now. What is wrong with that? They are supposed to represent me. Us. Let them demonstrate that they do. Not in terms of ambiguous histories; rather, in responses that correspond to and resonate with today's concerns with them.
So is this thread open again? Cort it seems many who do not share your beliefs on the CAA feel the same way about engaging in the dialogue with you. And you very well know there are MANY.
Secondly is there any point putting questions to you that you will not answer and when it suits your admin they just close down discussions without any warning, justifiable reason, or rules being broken taking away the members right to reply. Why is the CAA such a protected species here especially as you have stated that you don't agree with everything they do. This is the very reason suspicion is raised about the touchy nature of the admin here towards criticism of the CAA and on many other issues usually to do with perceived treatment issues like the LP etc.
There is so much sourced information on the major flaws of the CAA in every thread that has been discussed here.
The fact is that so many people do not trust Susan Vernon purely down to her track record of negative issues, poor communication on oxford criteria studies and the fact she was instrumental in shaping the CDC policy for two decades. When trust is broken it is broken. There is no point you telling us the things you perceive to be positive about the CAA whilst sweeping under the carpet all the negative issues that have been raised hundreds of times on various threads here.
Why do you think that nearly every discussion on the CAA here ends up being you against practically everyone else? Whether you like it or not the CAA has a PR (public relations) problem and PR forum is often percieved to have a CAA problem. If you do have close contact with the CAA maybe it would be a better use of your time telling them to work on building up patient trust again so that people dont think the main players are on a gravy train they are worried is coming to the end of the track.
What issues do you have? I have found that the CAA is actually 'right' on quite a few issues. I think alot of concerns linger from when a) they weren't as in touch with the patient community as they are now and b) when they were more engaged with the NIH and not as engaged with the CDC. Over the past two years they have been very strongly spoken (for them ) against the CDC.
I don't think there should be any worries at all about their stance towards the CDC or behavioral therapy research or the definitions or ?? Lets just see where they are as an organization and then judge.
They may very well not be as active advocates or as aggressive advocates as many people want - sure there are areas to improve but on the basic issues, from what I can see, they are pretty close to mainstream CFS community stands. Its pretty easy to find out - they've made public comments on virtually every issue.
Once again Flex I ask you not for more rhetoric but for facts. There are threads with 1,000's and 1,000's of posts on them on the CFIDS Association! Does that suggest to you that we don't allow discussions on the CFIDS Association. Can we consider that question answered?
The Oxford is the same darn problem. Its nit-picking stuff. So Suzanne Vernon did not go off on the Oxford Criteria in a article on XMRV! So what!!!! The CFIDS association has invited Lenny Jason to write an article on the Definition Problem and they hosted an entire webinar on the Definition problem and here, you are, still stuck on the fact that in an short article that wasn't even on the Definition, Suzanne Vernon didn't take time to blast it.... I think that's nit-;picking short-sighted,to be very blunt stupid advocacy. If you're going to go to the trouble of scrolling through the references in Suzanne Vernon's paper until you can find one by an author you don't like, go ahead - but I think its ridiculous. I think its meaningless and I think its a waste of time.
That's my personal opinion. Maybe I'm an idiot to base my opinion on her on the programs that she's developing rather than the citations in articles or other similar "missteps'...
If you are going to blame Suzanne Vernon for past CDC policy, which doesn't make sense since she was a lab chief not the Research Director, and since she and Bill Reeves would probably end up in a wrestling match on the floor if they were forced to spend any time together then do give her credit for the research program that she is in charge of....which I just showed you. Would you like to comment on her research program? That is surely what will effect you most as a CFS patient.
Oh Cort here we go again its everyone else that is wrong and only you that is right. Haven't you done this before on post after post on the CAA with countless members here? And on the LP, XMRV, and on your overt skepticism of the WPI. Vernon is on record within the last year saying "CFS is not a retrovirus" and "not a known psychiatric disorder" which left the door wide open to it being a yet to be categorised psychiatric disorder. Are these the programs you are referring to her developing in the post above when you say "maybe I am an idiot to base my opinions on her programs that she is developing"?
Cort you can show me as many things as you like that you believe eradicates all the negative aspects and issues that have flooded out of the CAA over the last few years. Why do you think they should be commended for doing their job if that's what you are saying when the countless damaging issues sourced for you and posted here on the forum time and time again about the CAA have given them a bad PR with so many patients. Its kind of like you showing me evidence of a pilot who does his job half of the time and crashes the plane the other half.
Would you want to fly with him?
Awol and Flex, I agree it is fine to criticize organizations like the CAA but do it constructively, not destructively, with the same arguments and points made over and over? In fact, I have things I think they CAA could do better but rather than criticize them on a forum, I do it through other means. Do you think this will win the CAA over? Do you think this will win your average forum participant over? If the way you treat Jspotila is any indication how people on your forum treats others, I definitely don't want to be a part of it.
Well, no. I will not specify as it has already been done in the thread banned and I cannot , well, I cannot. Way too late and tomorrow...That tide is long out to sea. Nor are you a call center from the Philliipines where you refer to a script; rote does have its place, but here, not so much. I am older than you, more experienced than you, at least in some regards. When I ask of you for answers, give me answers, not pablum. But you I don't want. Send me, send all of this forum, the answers from the CAA. This forum is their crucible, no? Cort? Just let them unveil their positions, good or bad, but they should be the ones removing the cloak, not you.
I Totally agree! Cort, why are you speaking for the CAA? Do you work for them, do you answer to them? Why can't they speak for themselves? This is a well-known forum-let them speak! The patient community needs to hear that they are on our side...once and for all--let them speak to us!
I want to point out that Jenny Spotila has always responded to often very provocative and even hurtful comments in a respectful and calm manner. Whether or not you agree or disagree with the CFIDS Association or what she says she has handled herself honorably at all times - that cannot have been easy and honestly, I'm surprised she's been able to do it.
Greggory what questions and answers are you talking about? What positions are you talking about? "they' Kim McCleary and the 6 or 7 staff members are not members of this forum. "they' will probably unveil them for you here.
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