1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
Discuss the article on the Forums.

Let's coordinate our current advocacy projects

Discussion in 'Action Alerts and Advocacy' started by fresh_eyes, Dec 28, 2009.

  1. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    (per discussion on another thread)

    There are all sorts of great advocacy ideas & projects sprouting up on this forum and I think we don't have to just wait for the CAA, we can move forward effectively on our own as well. Web 2.0 (social media etc) makes it well within our reach. Seems like a good time to do some coordinating. These are the projects I'm aware of off the top of my head:

    * XMRV Global Action (Frickly and parvofighter)
    * Levi's draft Joint Resolution
    * Kim's educational program for pre-med students
    * Katie's Phoenix Rising YouTube video
    * the Brochure thread

    * Others I've forgotten? Anyone?

    One other I would add. If someone who really understands the science is willing to take on drafting a general statement on bad v good replication studies, that would be great. (The sort of statement people have been requesting from the CAA) Just something very brief from my pov, or perhaps a very brief summary + something more comprehensive?

    * (Almost forgot!) My CFS OUT site, with images & slogans from the Re-Brand thread and "Superheroes of CFS" awards for the people on our Roll of Honour. I'm putting this together now, should be up in a week or two. I'm hoping it can serve as a conceptual umbrella/platform/aggregator for a bunch of these cool grassroots advocacy projects.
     
  2. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    447
    Likes:
    471
    Illinois, USA
    My strongest suggestion would be to keep the projects independent of any one organization. That way would make it possible to work with any or all organizations.
     
  3. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    Hi Roy. Interesting point. How do you envision that working in practice, say, with the Draft Joint Resolution? That we would draw it up and then shop it around to organizations and see who is willing to give it their support, say by distributing it to members or posting it on their web stie?
     
  4. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    447
    Likes:
    471
    Illinois, USA
    Sorry, I don't have any experience with congressional resolutions, but I'll give it some thought when my brain fog is better. At first glance it seems that it might be like trying to herd cats on a lame horse with a burr under its saddle.
    The XMRV research may change many things and influence this as well.
     
  5. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    Thanks, Roy. FYI I just threw that out as an example - I mainly meant, how do you propose moving forward on projects without being associated with an organization? (And I see the Joint Resolution idea more as a way to make a statement than as actual legislation, at least for now.)

    ETA And believe me I hear ya on the cat herding thing...
     
  6. PANDORA

    PANDORA PANDORA

    Messages:
    32
    Likes:
    2
    suggestion- check out PANDORA's youtube.com page feature video

    Hi There,
    Check out P.A.N.D.O.R.A.'s youtube.com . With the support of some amazing advocates we are going to have some wonderful news to share next week. While there view Dr. Friedman's courageous testimony to the CFSAC (he is a HERO to me and to many in our community) Also check my video testimony too on our web site at www.pandoranet.info.
    Happy New Year!
    Marly Silverman




     
  7. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    Hi Marly! :) Wonderful to see you here, have heard lots of good things about your organization. Will take a look at your YouTube channel & look forward to hearing your big news. If you're interested, you might consider starting a new thread about PANDORA - I've been wanting to learn more.
    Thanks,
    Fresh Eyes
     
  8. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    447
    Likes:
    471
    Illinois, USA
  9. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    Hey Roy, it just so happens I read those same blog posts last night! I think you're really onto something. You know, that's Marly, above. :)

    @ everyone: I've been thinking that it would be really great if people (or teams of people) were willing to take on particular areas of expertise. I see what Suzy/MEAgenda is able to achieve by narrowing her focus, and I think we could be so much more effective if we had more such specialists, who thoroughly understand one aspect of the situation and can focus their advocacy efforts there. Possible specialties that come to mind:

    * the science of CFS (understanding the research, writing up critiques or position papers on it...),

    * the politics (in the US, lobbying the WHO re DSM-V...understanding the workings of the CDC...keeping tabs on the HHS Blood Safety Task Force...),

    * networking with other diseases (which they're already doing with XMRV Global Action - but would be great to have individual specialists in Autism, Gulf War Illness, etc.),

    * pr, marketing, media, social media (that's my field),

    * direct action a la Act Up (does anyone have thoughts on how to do this when we're all sick? Some form of virtual protest?)...

    I personally find it overwhelming to consider the situation as a whole - taking on one manageable chunk seems much more approachable. But it will take some organizing to make that happen. Does this strike a chord with anyone else?
     
  10. Tom

    Tom windows exterminator

    Messages:
    94
    Likes:
    0
    Aspire slow/quick

    Right well it says in the title, i'd be playing a game everything would be fine then my FPs (Frames per second) drops to about 5 making it impossible to play and super annoying, it starts off fine and smooth goes slow takes 5-10minutes to go fast again stays like it for 10-20mins and then it's slow again.

    I've tried multiple thing's to try and stop the lag i turned everything to performance so it could run faster. I dno if this is normal or what all i know is that i can't find any website with a solution for this , ive scanned for virus's, defragmented, cleaned it, the memory isn't full, i have nothing else running in the background help would be appreciated .

    Well Dude, this is a common symptom of M.E . Lots of the experts would blame this on you.
    On the other hand it could be caused by the xmrv virus , the anti virus people are working round the clock for a solution. In the meantime things will only get worse. Bin your machine.

    System Support
     
  11. PANDORA

    PANDORA PANDORA

    Messages:
    32
    Likes:
    2
    Hi Fresh Eyes,
    We are going to have an educational program in Buncombe County, North Carolina by a leading CFS physician. Would you be interested in helping Lisa Baldwin (Ryan's mother and I) with some local logistical efforts? We are going to invite everyone from both sides that were involved in the fiasco of the Ryan Baldwin Case to learn about XMRV virus and how their lack of education on "invisible illnesses" are causing nationwide family situations as the one the Baldwins and specially Ryan had to endure. Please respond to me at msilverman@pandoranet.info. This is also an open invitation for anyone else who would like to participate in this too and who live in the area.


     
  12. PANDORA

    PANDORA PANDORA

    Messages:
    32
    Likes:
    2
    How do we start a new thread here? I am still trying to learn how to navigate this wonderful forum.


     
  13. _Kim_

    _Kim_ Guest

    Hi Marly :hug:

    You can click on this link . Then click [Post New Thread]

    I can help you with any of the technical stuff. Just send me a private message if you can't figure something out.

    Thanks for stopping by again.
     
  14. Emma-Kate

    Emma-Kate Guest

    I did a brief post about what a replication study requires, etc etc - cfsandxmrv.blogspot.com - just copy and paste it and use it wherever.

    I also occasionally lecture med students year two at our local med school - am happy to share a bit of info.

    cfsandxmrv.blogspot.com - If you have anything you want added, or would like to contribute to, please so - and if anyone knows how to get an RSS feed to other pages ... feel free to use it - Im not precious about it.
     
  15. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    Marly - Pandora's Box - Please POST HERE Also on Ryan Baldwin

    I will get to your site and see what's up there with Ryan Baldwin but could you also copy/paste your plans for this kid? This is a massive travesty and the UK people would understand. Actually, it is not unusual, as Dr. Bell etc would know, that the Department of Social Services ( DSS )Asheville, NC 28802-7408 and other departments in charge of "protecting" children do take kids with CFIDS and place them in foster homes because the parents "won't" make the kids go to school ("Medical Neglect" - parents can't make sick kids go to school, they are too sick) OR, the Departments KNOW that these kids have SSA and other government money so they grab the kid and get that money. And that is what they have done to Ryan Baldwin. His mother was in Social Services and knew they might play this game, and they have. There are also articles in newspapers with outrageous data on the counties that take children with benefits simplly because they have those Federal benefits and it amounts to a rather large amount of money. Have to go find the article done on Massachusetts on the money that certain counties make on taking kids, but I was shocked. (SEE NEXT POST ON THE ARTICLE CITED) And also shocked about Ryan.

    So, post what you feel safe posting here about the Ryan Baldwin case. His parents HAD a website with all the information on what has gone on with this poor kid and the huge amount of money they have spent on lawyers and how the Judge slammed them yet again from getting their sick son out of dingy basement in a foster home where he is NOT getting the medical or educational basics he must have. More current and accurate info from YOU, including the parent's website, would be best. I mess things up so terribly.

    The info and website from Pat Ferro is not current (http://cfs-facts.blogspot.com/2009/03/ryan-baldwin-child-in-crisis.html) BUT the background information on this poor boy is good. I too emailed the Buncombe County DSS and got nothing - as expected. DSS can NOT admit they took Ryan for his money and so it is going to take far more herculean means to get this kid out of that dingy basement and back to his very loving and supportive parents and grandparents.

    http://www.mountainx.com/news/2010/010610home_for_the_holidays This is another more current update on Ryan. But he has a battle in front of him still. This is CRIMINAL and Buncombe County, the idiot Judges, and everyone else KNOWS what games the DSS did with this kid to get his SSA money -

    I really thought with Dr. Cheney going to court and standing in front of the judge that that would pry this case open, but it didn't. Sometimes those mountain folk just won't budge no matter what fire you light under their butts - yes, I lived it there too so I can speak on this one. So NO shooting at me...and in WNC, that means literally shooting at me!

    I emailed you my request to help as best as I can. We also need to get this back into the major media - not the Asheville Times type of thing, but the big guns.

    --------------------------------------------------------------------------------------------------------------------------------------
    Hi Fresh Eyes,
    We are going to have an educational program in Buncombe County, North Carolina by a leading CFS physician. Would you be interested in helping Lisa Baldwin (Ryan's mother and I) with some local logistical efforts? We are going to invite everyone from both sides that were involved in the fiasco of the Ryan Baldwin Case to learn about XMRV virus and how their lack of education on "invisible illnesses" are causing nationwide family situations as the one the Baldwins and specially Ryan had to endure. Please respond to me at msilverman@pandoranet.info. This is also an open invitation for anyone else who would like to participate in this too and who live in the area.
     
  16. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    DSS Follows The Money, Makes An Extra $90 Million Per Year Whats Best For The Chi

    DSS Follows The Money, Makes An Extra $90 Million Per Year
    Whats Best For The Child Is Secondary To More Federal Money
    These DSS Stories Were Brilliant
    By Edward G. Oliver
    January 2002
    Expensive financial consultants are advising DSS how to maximize federal revenues.

    Some examples of children who would bring federal money with them would be those who are eligible to receive Medicaid and special needs children who receive Social Security money.

    This means that whether a particular child is seized from its parents is often a factor of whether the DSS can get more federal money by so doing. It is reported that the Department is making an extra $90 million a year by this method.
    The hiring of private consulting firms to manage child welfare is done nationwide by state governments, sometimes on a no-risk, contingency basis. This means that some of the federal money is being siphoned off by consulting firms. The children are paying the price.
    Massachusetts is a leader in the practice. A task force of accountants arrives from the consultants to re-engineer how the agencies are run, right down to training, policy, forms and other areas. They serve the overriding purpose of obtaining more money from the federal government.
    When asked by MassNews if she knew that DSS was using one of the revenue maximization firms, State Rep. Marie Parente, Chair of the Legislative Committee on Foster Care replied:
    Yes, Andersen Consulting. In fact that was one of my big complaints. When I was on the Governors Blue Ribbon Commission in 1993, Andersen Consulting volunteered their services and they kept saying it was management and maximizing revenue and they could do it; theyre in the business.
    In the end they got a $3 million contract and I think they still hold it today. I objected. I thought it was unethical and I thought there were state workers doing that work and we never needed Andersen. We have a fine revenue collection department in DSS. Andersen carved out a niche for themselves and I think they still have the contract.
    A spokesman from Andersen Consulting, Meg Travis, tells MassNews that at one point they had three contracts with DSS and the last one ended in December of 1997. DSS spokesman David Van Dam confirms they used Andersen until late 1997. When asked, he said DSS now uses another consulting firm called PCG (Public Consulting Group) but when asked what services they perform, he did not specify what they do. Attempts to get further information from PCG in time for this article were unsuccessful.
     

See more popular forum discussions.

Share This Page