Discussion in 'Action Alerts and Advocacy' started by awol, Aug 11, 2010.
Jenny has always acted in a classy manner. As have you.
Cort. They dont check our forum? Is that your position? Jenny aside? If they don't, FIRE THEM!!
I admit I did word that a little strangely. I don't work for them. I don't communicate with them much. I don't answer to them. I answer to myself - which, I tell you, has not been easy!
Who do you think the CAA is? Some huge organization? They are, what, seven or eight employees that work in some battered rental unit in Charlotte. Some of those work in an administrative capacity. How many could for answer for CAA policy? Four or five???? That's it, Judy.
THey are not members of this Forum nor do I expect them to be. If you have questions I suggest that you list them here so we can all hash them out like we do with any problem and/or go to the CFIDS Association website and look there.
If you're worried whether the they are on 'our side' then go to t heir website, check out their programs, check out their stances on the issues, go to their Facebook site, check out what they are saying there and then report back...Like I said they have posted their positions on many issues. You might start on their FAQ's.
We are not here to win over the CAA. They are supposedly advocates for us. That's why they receive funding and donations in the name of CFS patients, I would assume.
I'm not saying they don't check out - they do check it out - and they have responded to Forum complaints - they changed several things on their website for instance - the Forum members made an impact!
I just don't expect the few staff members there to be a part of it. Is Judy Mikovits or Annette Whittemore or VIncent Lombardi a part of this forum? No. I don;t think one leader of any of the bigger patient groups (PANDORA, Wisconsin, New Jersey, Mass) in the US or MERUK or IIME or whoever, contributes regularly to this Forum. The only one that I know that is registered is Marly Silverman.
For sure they keep on eye on it but contributing...its all mostly us patients here..that's the way its always been .
Are you kidding me? My boss who runs a major US public health program makes half of Kim McCleary's annual salary.
Cort..that's the point I'm making isn't it? You don't let people hash things out here..you speak for the CAA instead of yourself...we don't need a cheerleader for the CAA we need people who are willing and able to discuss the issues fully and completely....
without interference from anyone who thinks they know better than we do...we have our opinions and we just want to express them without being told we don't know what we're talking about!
I'm turning Phoenix Rising into non-profit; this is what I learned about salaries. The Board of Directors sets the CEO's salary. In order to do that they have to show that it is in the range of similar non-profits of similar sizes in the region. The government is apparently quite strict about this because they do not want someone to create a non-profit in order to enrich themselves. So, while Kim's salary seems quite large it is apparently in the mean of what officials at non-profits with similar responsibilities earn. There's just no way around that.
We can only keep bringing up the same points if we feel they are not addressed. This is not just about the CAA its about this forum and where the admin stand on many advocacy, treatment and xmrv issues. This is a large forum and has some ability to influence. Many of us do contact the CAA Hope as well as engaging here and on other forums. It is crucial that we as patients and advocates believe we are all singing from the same hymn sheet. I really don't see why asking jspotila questions about the CAA is described by you as poor treatment. She is involved with them and we have a right to question people from the most influential CFS organisation in the world. Infact if you read one of my earlier posts you will see me saying that she appears to be working hard as a volunteer at the CAA. I will not stop asking taxing questions of members of advocacy groups who are there to represent us the patients.
I think what you want is to be able to 'hash things out' without getting opposite opinions. I mean we all kind of think we know better, right? Everyone is presenting what they is right...so we work it out...what is right - where the facts fall.....that's what this is supposed to be about really. I don't think I'm stopping that process.
It's not all about the money. My boss worked for major hospitals before this and they compensate very well. Some people actually work to serve the most vulnerable people and don't expect to get rich off it. I believe non-profits are currently being looked at do to the inflated wages they've been receiving over the years. By the way we live comfortable off the wages we make. Even our governor makes under 100,000 a year.
I do not believe that I, personally, have said anything the least bit offensive to Jspotila? I have no idea whatsover why I was included in this comment, and I have no idea whatsoever why you are trying to undermine an entire forum by calling if negative and anti-CAA, when clealry all that is going on is that there, unlike here, threads don't get locked if the CAA happens to be criticized. Being a member there does not mean being against the CAA, it simply means tolerating those who have legitimate issues with the CAA. Being a participant in Project ENOUGH!!! has absolutely NOTHING to do with attacking the CAA and I resent the implication.
All.....can we maybe eventually get back to the subject of Project ENOUGH!!! which this thread is supposed to be about?
You just did it again. I gave you a million dollars worth of research dedicated to figuring out what's wrong with you and me and you give me these couple of words that you didn't like. I could give you hundreds of sentences that you would love. (By the way I posted a link to their programs).
Whose side are you on? This is strange stuff. Could you be a mole that is trolling the CFS community trying to splinter us up into meaningless little factions with these ridiculous innuendo's? Isn't that how moles work? They whisper innuendo's into your ears until you're not sure what to believe. I'm being facetious here - I'm sure that you're not but I do think this picking at words or phrases endlessly it seems sometimes and trying to create factions based on them just weakens all of us. I say look at the big picture; the big picture is alot rosier.
Do you think Suzanne is trying to convince the research community that CFS is a psychiatric disorder by putting 'known' there? While on the other hand she is funneling a million dollars into research into gut pathogens, and brain abnormalities and endogenous retroviruses and vascular problems?
If I wanted to prove CFS was a psych disorder I would funnel money into CBT and personality studies and god knows what else. If she's trying to prove CFS is a psych disorder she's doing an awful job of it and she should be fired immediately...
Cort....back to Project ENOUGH!!! please?
I'm going to bite on this one two... Are you suggesting that this Forum does not tolerate people who have legitimate issues with the CAA? Have you looked around lately? There are thousands of posts on the CAA. I would hardly say that they are all lauding the CAA . Plus Flex is here - she/he's getting a good argument, for sure, but he/she is here and you're here....Threads are locked when they get nasty not because of the subject matter.
OK, sorry, enough with that. You're right we've missed the whole Project Enough - I don't have a clue what it is. I love new Projects! Can you explain what Project Enough is?
- Project ENOUGH!!! Involves investments of time and energy, not money.
- We fully understand that most participants are sick and may not have much energy to give. ALL contribuitions, large and microscopic are welcome and useful. Penny jars do eventually gather enough money to do something useful.
- Project ENOUGH!!! Is being coordinated by me, but is not "my" project. It is simply an umbrella project aimed at focusing the energies of PWME around the clear but general goal of ensuring that good science moves forward.
- The project is made up of teams. Currently there are 5. More could certainly be suggested if there is a hole in the outline I have proposed.
- Team 1 is concerned with making sure that the information available to patients and doctors is accurate, and is corrected if it is not.
- Team 2 is concerned with making sure the media is aware of the complete story of CFS and the need to cover it. A timeline of bullet points that can be sent with letters is already nearing completion.
- Team 3 is designing and organizing public awareness campaigns. Their current focus is the urgent need for accurate testing and screening of the blood supply, and preliminary research clarifying exactly which and how many diseases XMRV is implicated in. Peer reviewed papers now show that the prevalence of XMRV in the healthy population is somewhere between 2 and 4, possibly even 7%. People need to know about this.
- Team 4 is building alliances with other patient groups for diseases in which XMRV might be implicated, or, for diseases that have been similarly marginalized or neglected by research. There is a thread with more information on this here. http://www.forums.aboutmecfs.org/sh...-similarly-under-researched-diseases-outreach This team in particular badly needs volunteers.
- Team 5 is preparing rebuttals for scientific journals, along the lines of what they already did in Retrovirology. From now on, the hope is that ALL papers published on the topic of ME/CFS have our stamp of approval or disapproval, backed up by extremely solid scientific analysis. No more BS.
I will add again that all projects need a clear place to meet and organize and for Project ENOUGH!!! this will take place on the good science forum. http://www.mecfsforums.com/index.php
Of course, once team membership grows a bit and the projects are a bit more evolved, team members are welcome to reach out to other forums as I have done here.
Oh my! You are relentless aren't you? I'm saying that the original thread for Project Enough was fine..why was it removed? I DON'T mind if people disagree with me..but so far no one has! Put back the original thread..if one person said the "A" word and you or one of your people didn't like it then sensor that one comment not the whole thread...Geez Cort! Let's get back to the subject at hand!
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