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Major Public Media Campaign Launched - This WILL Get the Attention of MILLIONS!

Discussion in 'Action Alerts and Advocacy' started by muffin, Aug 12, 2010.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

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  2. muffin

    muffin Senior Member

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    Hope Tina is NOT mad about me putting her great press release out here so you all do not have to hit the facebook page. She and another PR professional did the press release and it is good. Please email this to your local newspapers and TV stations along with your own story. Also, it would be great if you signed your name, etc. so that they could contact you and ask you questions. Remember, these people DO NOT understand us or our bedbound/housebound symptoms. WE must tell them what our lives are like since the reporters just don't know and the public doesn't know or understand.

    Everything that has been done by this Campaign has been very professional. Why? Because CFIDS sick people who were real heavy-hitter public relations, journalists, graphics, lawyers, website builders, and so on are doing the work. These people are also listening to the patients are going by what the patients want. That's important since it is OUR disease and we know best how it has affected and destroyed our lives.

    Please, copy the press release below, add your own story, and email it to your local papers, Tv and anyone and everyone that you think needs to see this.
    Also, it's money again. We need donations to get this major issue into the Washington Post soon. The PNAS study is out and does show strongly that we are physically sick and not nuts. It also shows that there is a family of viruses (the Mouse virus) and it does mutate within the sick person. Finally, when you see 7% of healthy, blood-donating controls with this Mouse Virus and the numbers work out to 20 million (per Mindy's estimates) you KNOW that the blood supply is infected and has been infected for a very long time.
    Please use Tina's press release and also hit the cause site, join and DONATE now! Thanks!


    IMMEDIATE RELEASE

    August 24, 2010

    ME/CFS Worldwide Patient Alliance
    Patient-driven Public Awareness Group
    http://apps.facebook.com/causes/?m=ed6ae9f3&ref=bookmarks

    Tina Tidmore
    205--680-6890
    editor@claynews.net

    Protect from Infectious Virus, Act Now

    Clay, AL—No one would wish a debilitating neuroimmune disease on their worst enemy. Chronic fatigue syndrome patients are therefore concerned that a recently-published study suggests murine leukemia viruses are in the nation’s blood supply at a rate of 7%. Reference Proceedings of the National Academy of Sciences, August 24, 2010.

    We applaud the National Institutes of Health and FDA for their responsible study that confirms the strong association between a family of XMRV-related viruses and chronic fatigue syndrome, also known as myalgic encephalomyelitis, at a rate of 87%. This, though, serves as a pivotal time that calls for a change from paltry research in the last 25 years of an illness that now disables millions worldwide.

    “My H.I.V. patients for the most part are hale and hearty, thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.” Dr. Nancy Klimas, Director of Research for the Clinical AIDS/HIV Research at the Miami Veterans Affairs Medical Center, New York Times, October 15, 2009

    As each day passes, more Americans lose their jobs, their social activities and their health. A large majority of them will not recover based on the current lack of effective treatments.

    Therefore,

    We call for government-funded clinical trials now.

    We call for aggressive scientific studies to protect the nation’s blood supply.

    In the words of University of Alberta professor, Andrew Mason, “If the patients improve, after a certain point you stop debating whether it causes the disease and say, the treatment works and we’re going to use it.” Washington Post, August 24, 2010

    The possible threat to the public health in this case is as real as the disability with the illness. This is the time to be proactive.

    ME/CFS Worldwide Patient Alliance is a group of patients who have launched an ME/CFS public awareness campaign from the patient perspective.

    # # #

    For more information, contact ___________________________ at ____________________.
  3. Sasha

    Sasha Fine, thank you

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    Hi Muffin - I'm afraid I can't make sense of this sentence in the second para of the press release:

    "We applaud the National Institutes of Health and FDA for their responsible study that confirms the strong association between a family of XMRV-related viruses and chronic fatigue syndrome, also known as myalgic encephalomyelitis, at a rate of 87%."

    "An association at a rate of 87%" doesn't mean anything (a number representing an association would need to be a correlation coefficient or similar; a percentage simply can't do it). I would suggest, "We applaud... encephalomyeltis. The viruses were found in 87% of patients but only 7% of controls".

    Hope this helps - congratulations on your initiative and hard work on this project!
  4. muffin

    muffin Senior Member

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    I will show this to Tina, if she hasn't already read it. That girl is fast on her feet! I guess if you think that is the correct way to say it when you send the press release out, then make that change.
    There will be other Press Releases coming with more and different informaton. This is ongoing and the messages have to keep going out to the media and public.
    I have done nothing. Tina, Marly, and the others are killing themselves to do it all. I just make comments. That's it. Tina is the one that needs a major pat on the back for doing so much and really doing a great job. I stand in amazement of her and what she has done - all of it perfectly or nearly perfect. Amazing for a sick woman. Thank Tina and the others. Without them there would not be this initiative - and we see that over 800 people also agree. That's just Facebook 800, not the others who are not on Facebook. Website will be going up soon to capture the other thousands of sick.
  5. Sasha

    Sasha Fine, thank you

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    thanks muffin - and yes, well done to Tina and the others - it's a tremendous achievement, especially considering that they are sick.
  6. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Sasha, will you e-mail me please? We missed your suggestion in time and maybe you can help us by advising us, along with the others, on the front end. Please e-mail me at editor@claynews.net.

    We did get one of our advisors, who was sick for a couple of days, give us more input, which refined it a little. See the current link:
    http://www.facebook.com/topic.php?a...g=41f162a2d7924873a62a8e6fc6270030&topic=1539

    Here it is:

    FOR IMMEDIATE RELEASE

    August 24, 2010

    ME/CFS Worldwide Patient Alliance
    Patient-driven Public Awareness Group
    http://apps.facebook.com/causes/?m=ed6ae9f3&ref=bookmarks

    Tina Tidmore
    205-680-6890
    editor@claynews.net

    Protect from Infectious Virus, Act Now

    Clay, AL—No one would wish a debilitating neuroimmune disease on their worst enemy. Chronic fatigue syndrome patients are concerned that a recently-published study suggests a family of retroviruses, murine leukemia virus-related viruses, are in the nation’s blood supply at a rate of 7%. Reference Proceedings of the National Academy of Sciences, August 24, 2010.

    The ME/CFS Worldwide Patient Alliance applauds the National Institutes of Health and FDA for their responsible study that confirms the strong association between a family of XMRV-related viruses and chronic fatigue syndrome, also known as myalgic encephalomyelitis, at a rate of 87%. This serves as a pivotal time that calls for a change from paltry research in the last twenty-five years of an illness that now disables millions worldwide.

    “My H.I.V. patients for the most part are hale and hearty, thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.” Dr. Nancy Klimas, Director of Research for the Clinical AIDS/HIV Research at the Miami Veterans Affairs Medical Center, New York Times, October 15, 2009

    As each day passes, more Americans with ME/CFS lose their jobs, their social activities and their health. A large majority of them will not recover based on the current lack of effective treatments.

    We call for government-funded anti-retroviral treatment clinical trials now.

    We call for aggressive scientific studies to protect the nation’s blood supply.

    In the words of University of Alberta professor, Andrew Mason, “If the patients improve, after a certain point you stop debating whether it causes the disease and say, the treatment works and we’re going to use it.” Washington Post, August 24, 2010

    The possible threat to the public health in this case is as real as the disability with the illness. This is the time to be proactive.

    ME/CFS Worldwide Patient Alliance is a group of patients who have launched an ME/CFS public awareness campaign from the patient perspective.

    # # #

    For more information, contact ___________________________ at ____________________.
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I want to explain the process

    I want to take the opportunity to explain our process, this is patient-driven. This is the patients' voice. There may be times when we have to react quickly, which is the case with this press release. And so a public relations professional, a person person who worked at advertising agency, and advocate and me, the news person who also designed ads for a living, collaborated to put together this press release. In this case, because of time sensitivity, we put it out with recommendation to use it as is.

    Whenever time allows, the group of advisors, depending on their expertise, will narrow down selections and then allow patients to choose from the final recommendations. Of course, there may be times that illness prevents an advisor from responding in time. But we are not dropping them because we value their input. So they can help on the next action that needs to be taken. This way, we are treating the patients as though they are a board who, by majority vote, determine their message.

    This is very 21st century. In the American Idol days where people vote where Chase gives their charity money, etc. democracy and personal empowerment is what is expected. We feel this is an opportunity for patients to have direct influence over actions taken relating to their disease, which has been very minimal in the past.

    We hope people see that what we are doing is grass-roots. It is not as efficient as a top-down. It is not as fast as a top-down approach. I can not guarantee it will always turn out to be the perfect solutions, either. Certainly, ultimate decisions will not be liked by all.

    I have full confidence that overall, this democratic experiment will end up with better decisions. I believe in the intelligence and the abilities of the patients.

    As Thomas Jefferson said, "I know of no safe depository of the ultimate powers of the society but the people themselves; and if we think them not enlightened enough to exercise their control with a wholesome discretion, the remedy is not to take it from them but to inform their discretion."
  8. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Just to keep you guys informed.

    We will be getting website soon. (possibly three days)

    We will be putting up sample logos to choose from soon. (possibly three days)

    We have someone who is collecting photos of patients to use. I will be putting out a bulletin on that soon. (possibly three days)

    Letter is going out to other patient organizations. (possibly two days)

    Another press release will be coming that is not time sensitive. (possibly a week)

    We have posted a press release for those who are not in the US to use.

    Of course, we have different groups working on different things based on their expertise, interest and experience. And when it is practical, we are asking the patients to make the final decision.

    We have one person who has been working on fund raising. I was, but I got involved with the more pressing things. And now I am not doing as well physically. So I am about to ask someone else to help with that.

    We still welcome any help. If you would like to help, email me at editor@claynews.net. And we ask for at least $10 donation. Which, by the way, we are well on our way with $3,020.

    We also received a personal note of thanks from Annette Whittemore for our letter of congratulations.

    Tina
  9. awol

    awol *****

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    I have donated. This is a good project.
  10. taniaaust1

    taniaaust1 Senior Member

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    I had exactly the same issue as Sasha had on reading that same part and completely missed what it was saying there due to the way it was worded. I understand everything else except that part (i actualy ended up having to read that paragraph 3 times to understand it), so i think it needs to be worded in a lot clearer way there.

    but you girls/guys are doing a great job!
  11. taniaaust1

    taniaaust1 Senior Member

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    When i read that.. its soo confusing.. I think its trying to say that ME is at a rate of 87% for something???? and it leaves me wondering for what???? What is ME at the rate of 87% for?? The whole paragraph needs to be redo in a clearer way so people can understand what is being said

    That part too saying that CFS is also known as ME.. I'd have an issue with, LOTS of those with ME may have an issue with as all CFS isnt ME and even the CDC says that too!! Instead of helping to clarify the differences.. the ad is fueling what the CDC has put out and wants patients to keep thinking about them being the same thing. What it says there is completely false!

    It just ads to the CFS and the whole ME confusion thing even more by playing on that confusion already out there between the two things esp since this ad is saying its being supported by the patient group. It would be great if either this ad helps people distinguish them as sometimes being different or doesnt add to the confusion further by keeping the wording free of that debate entirely eg use terms like CFS/ME or jsut say it is being found in both chronic fatigue syndrome and in Myalgic encephalomyelitis patients.

    I think more thought has to be put into the wording of such a costly ad before it goes out. To iron out those confusing areas and not further deepen the CFS/ME confusion. Any ad which ads to the CFS/ME confusion, i'd rather not see out there at all. I put a lot of advocacy work in trying to get people to realise this are separate!! its a game the CDC plays with everyones heads.

    " The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS." the following is from CDC site http://www.cdc.gov/cfs/education/wb3151/chapter1-1.html

    So please please please change that part.

    Thirdly.. this part is just a personal prefence thing so the following doesnt really matter.. but i think the whole spill on applauding the FDA and making a thing about that part that they supported us.. makes it sound like we are only applauding them just cause its a positive study which backs what we think. I think it makes us sound over the top. It is our every right to be supported and something the government should of been doing in first place.

    best luck

    ps the rest of the ad is great but i really hope something can be done about that paragraph so all the community thinks it is great.
  12. taniaaust1

    taniaaust1 Senior Member

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    i hate to feel like im critazing but not offer any suggestions so here goes. To stay away from all the CFS/ME politics and different views.. I suggest to just focus on to the facts in a very clear way.
    eg

    "The National Institutes of Health and FDA study confirms the strong association between a family of XMRV-related viruses and chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME). These viruses were found at a rate of 87%. in CFS/ME. "

    Also be aware that big words which people dont quite know what they mean may throw the average person. I myself did do some collage.. but kind of get hitched on words like paltry and pivotal so they take my mind away from the message a little as i then having to think about what those words mean (right now im still not sure what they mean, i can only guess at their meanings.

    I dont know if i get a little caught up on those words as they are rarely used in my culture (im Australian).. maybe they are used more where you are so much more well known?? If so then they would then be fine.. but in my culture words like that would come from possibly from the very well learned ... and not average words commoner people understand or use.
  13. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Thank you. Yes, we already have some of those points already, but you made some additional points.

    Tina
  14. muffin

    muffin Senior Member

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    Guys: Much work is being done by the team and advisors but we seem to have slowed down in the donation department. We can't get the Advert in the Washington Post without those donations.
    So, if you can give, please do so. If you have ideas on fundraising that we can implement very quickly and in the long run, PLEASE send them to me or Tina or post here.
    So much has been done and many top notch people are still working very hard to get this out into the public but we can't do that without donations.
    So, ideas of any sort would be greatly appreciated. Just PM me and I will look into every idea and give them a shot.

    I am really not one to join groups, etc but this campaign is critical and I know that it is having lived in the Washington DC area for 25 years (about). This is the way to go right now and it really must get done. So, donations are great. Ideas are great. Action is needed now! Thanks.
  15. jimbob

    jimbob ME/CFS84-XMRV+

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    I was about to send another $50 to the WPI, or are you saying it should be used elsewhere? I gave $25 to Mindy and have donated twice before to WPI. let me know where?
  16. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Jimbob, donate according to the causes you believe in.

    WPI is doing fine research.
    Mindy is doing fine reporting.
    We are going to do public advocacy through ads.

    I would not encourage anyone to take their money from other important pursuits. But we also believe this one is important also. So if you do believe in this cause, please donate for it.
  17. muffin

    muffin Senior Member

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    Tina is very right about donating to what you believe in. But in my very humble opinion, giving money to the Ad campaign will get the attention on this disease, the sick who need so much now, and funding for research and clinical trials. The public, researchers, doctors, policy makers, journalists and others do not fully understand what this disease is really about. Many don't know about the WPI/CC/NCI and NIH/FDA studies on this virus and the damage it probably causes - which is probably enormous and far-reaching. And even if someone were to read the articles on the PNAS paper and the findings they still would not understand the HUGE consequences of it all. And that is why this Ad campaign is super critical.

    I too have given money to WPI for more research. But like everyone else I only have just so much money to donate. That means that my usual dog/cat charities aren't geting money this year. But WPI and this campaign in particular, are and have gotten my charity dollars. I do believe this campaign will generate far more bang for the buck at this particular point in time. There is so much going on and we need to hit hard and hit soon to capture and present all that is going on. Just my opinion.
  18. jimbob

    jimbob ME/CFS84-XMRV+

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    Allright Muffin, you convinced me, even though you did dump me for someone else!
  19. BEG

    BEG Senior Member

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    No worries, jimbob. I'm still here.

    Anyone, where can we donate?
  20. muffin

    muffin Senior Member

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    Go to the Facebook page: http://www.causes.com/causes/511536?m=f042604e

    There are directions on donating even if you do not have a Facebook account. Look for Marly Silverman's extensive instructions on the page to donate via other means. Remember, this is a tax write off as well.

    Thank you both for donating to this cause. I think everyone will see that once this hits there will be far more "real" reporting on this disease, the virus(es) implicated, the research being done (by WPI big time), the history of the disease, symptoms, etc. And it will help usher in more government and public funding in addition to getting the attention of the very senior policy makers who will ask, "What the hell is going on with this?" - I am sure that many senior types in Washington have no idea about CFS/ME because funding for it is so low and under the radar. Washington pays attention to the huge amounts of funding and the issues behind them, not the tiny amounts that CFS/ME gets (Under $5Million is peanuts in DC).

    Jimbob: I will always love you. There was no one else, I was just too sick and knew that what you and the Browneyedgirl had was a true "soul mate" thing. I saw this and stepped aside and as you can see, Browneyedgirl is STILL there for you. True love.

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