"A Time to Every Purpose Under the Heaven" By Cort Johnson (Read!)

Discussion in 'Fibromyalgia Main Forum' started by puggles, Sep 13, 2010.

  1. puggles

    puggles New Member


    A Time To Act!
    by Cort
    Published on September 9th, 2010 11:14 AM

    "A Time to Every Purpose Under the Heaven"

    Ecclesiates says there is a "A time to every purpose under the heaven". I suggest that our time is now.

    ME/CFS has been ignored and kicked to the side of the road for decades. Twenty-five years later - long after it has been shown to afflict at least a million people in the US and inflict billions and billions of economic losses annually in the US - it still receives amongst the lowest amount of funding of any disorder. Chronic illnesses that effect fewer people and cause less damage get hundreds of millions of dollars a year in funding while we get a few million a year...droppings from the NIH's table.

    The message we should all deeply get is that they don't care about us! The fact that there a million sick people out who are not getting treatment matters little to them. Other things matter much more. The cavalry is not coming to the rescue!

    The Possibility and Danger - As a community we may be too confident in the ability of XMRV to transform the field. The uncomfortable question we should be asking ourselves is what if, god forbid, XMRV does not work out? And if it doesn't how can it still serve us? Has it provided us a possibility that we have not fully taken advantage of? Are we missing an opportunity that we will mightily regret later on? I think it has and we are in danger of missing it.

    Men at some time are masters of their fate
    -- Shakespeare, Julius Caesar

    Leverage = Opportunity. For the first time in decades we have some leverage. XMRV has thrust us into the news. ME/CFS is being talked about. NIH officials are actually meeting with patients. We have an opportunity we have not had in decades.

    It could be that we are masters of our fate right now - that there is a tipping point we have available to us. It could be that right now we can use the attention XMRV has provided to display the almost criminal disregard the federal government has shown this disorder and force them to change.

    Make no mistake. If XMRV does not work it we may very well go right back to being the same criminally ignored disorder we were before. Twenty-five years of downplaying ME/CFS at federal level will not disappear of itself. The same bureacrats that have held their noses at us and laughed at our requests for even a semi-decent level of funding will still be there. They may be able to thumb their noses even more if XMRV does not work out.

    This is why I am supporting the ME/CFS Worldwide Patient Alliance's Campaign to put an ad in the Washington Post to take advantage of the situation now. Hopefully XMRV will work out. I am confident, in fact, that it will. But if doesn't then we could miss an opportunity of historic proportions to enlist people in our cause. Can you imagine seeing this splashed across a page of this newspaper?

    "Has ignoring this group of patients allowed an incurable retrovirus to contaminate the blood supply and infect up to 7% of the American population?"

    I would love to find out what effect this would have Many people have given over the last 10 months but I say

    Once more unto the breach, dear friends, once more,
    Shakespeare, Henry V

    Let's give the ME/CFS Worldwide Patient Alliance a little bit more and give them the chance to splash their ad over Washington. They are over half way to their goal, they need about $2,000 more dollars to go. Let's get that ad up there now and see what happens!

    o Check out and Donate to the ME/CFS Worldwide Patient Alliance here http://www.causes.com/causes/511536
  2. spacee

    spacee Member

    My son is helping with grammar, etc.

    Wanted to tell you this: A book edited by Stephen E. Strass titled

    Chronic Fatigue Syndrome

    It has a ton of stuff published about CFS. This is the end of the chapter
    on Retroviruses

    "As new laboratory technologies are developed and new epidemiological
    information is accumulated, the final chapter may be written concerning
    the potential role of retroviruses in this debilitating syndrome."

    Then the last sentence "In the meantime, health care providers should not indicate
    to their patients that convincing evidence associates CFS with a retroviral infection."

    This published article (in Straus's book) was written by Walid Heneiene and
    Thomas M Folks at the CDC.

  3. mbofov

    mbofov Active Member

    thank you for posting this! I will send them some money today. I would love to see that ad run.

    I don't know where Cort gets his energy but am so grateful to him for all he does. I love the Shakespeare quote.

    Also, it's very helpful that it's a small amount they need to raise so I know that the $10 I can send, though a drop in the bucket, is an important drop.

    Also, here is a better link to the ME/CFS Worldwide Patient Alliance:

    the other one didn't work.

  4. puggles

    puggles New Member

    I believe that the Federal government will take a long time to do more studies, etc. and we will not get to the important clinical trials and onwards to those medications that may well be out there already but need to be in the right combination and researchers like Mikovits, et al will be the ones to figure that combination of meds out quickly -- with more funding. I don't believe we can wait or depend upon the Federal government to get things done for us. In 25 plus years nothing has been done for us except demeaning comments and damaging studies. So, WE must be the ones to push, get our messages out to the researchers, policy makers, and public. And we must be the ones to get funding for the private researchers like WPI, Drs. Klimas, Bell, Cheney, and others who ARE moving forward at super fast speeds.

    The XMRV Conference did not disucss funding at all. And now you see why this major Media Campaign is so crucial to getting our message out. It alerts those in the policy arena, the research community, doctors, and the public that something is quite wrong and must be fixed - NOW. We must push our message out into the public to get that funding quickly and not just wait for the foot-dragging Federal government to keep testing to a nice, safe conservative consensus. We can no longer wait. There are already millions of us sick with CFS/ME/FM and more coming in behind us. We also do not know what this Retrovirus is responsible for in terms of other diseases and cancers. We can not let Science be stuck in the political muck while millions more get sick and others die - all because the government did not do its job for 25 plus years and WE did not do our job in alerting everyone of the issues when we had the opportunity to do so.

    Thank you all for being a part of a major and rather crucial Initiative. This Campaign is far reaching and will have impacts in areas WE have not even thought of yet.

    As Cort has suggested, please spread this message out to everyone you know, to all other websites, blogs, and even articles written about CFS/ME/FM and Retrovirus research. The more we get this message out (along with the link http://www.causes.com/causes/511536 the faster our membership grows and the more donations we get in to get our messages out to the public.

    A very smart person noted that this Campaign is akin to that of the HIV/AIDS advocacy groups. They too had to fight for themselves to get attention and real funding since there was so much bias against them as well. Many of us believe that this initiative will serve that purpose of really starting the fire that gets us the major funding and attention we must have, in much the same way as the HIV/AIDS sick and advocates did. HIV/AIDS has had billions spent on their disease (which is great), but now it is our time and we too will spread our messages out far and wide and get the attention, funding and research we must have NOW.

    This campaign is NOT a one-shot deal. This is an ongoing initiative to hit every form of media out there so that the public is made very aware of the situations regarding CFS/ME and the possible terrible affects of the newly discovered Retrovirus family, as found by WPI/CC/NCI and NIH/Harvard - the heavy hitters in the research world. The immense credibility of these research organizations only helps US in getting the messages out that the public will believe and trust. And it will be the public that brings the enormous pressure on the Federal, State and even local governments to deal with this disease and this Retrovirus family. Like the HIV/AIDS advocates, we must have public pressure to get the job done. And that's why this is an ongoing patient-driven initiative.

    Please get involved. Hit the link and shortly the website and give us YOUR ideas. Even though this project is run by CFS sick people it is an amazingly well run organization with every effort made to include all of us sick people. No other group has gone the patient-driven route - it really is quite hard to get hundreds of people involved, listen to their ideas, and put everything out for a vote. But the people behind this project are making it happen and involving the almost 1,000 members in all decisions.

    As the insighful people like Cort understand, THIS campaign is what must be done NOW.

    Thank you Cort. Thank you to everyone who has joined, participated, and/or donated.


    ((Thank you Mary for the better link!))))[This Message was Edited on 09/14/2010]
  5. puggles

    puggles New Member

    We have hit 1,009 members and broke the 1,000 member mark today. We are also now up to $4,700 in donations. In the last two days alone we have made huge movements forward.

    Be a part of this hugely successful initiative. Let your voice be heard! Join, give ideas/comments, and donate if possible.

    We are moving fast and will have our Washington Post ADVERT very soon.

    Also, our LOGO is out for voting on. Join, look at the logos and vote!!!

    Be a part of your own cure. Do NOT wait for the government to do anything for you or you will be waiting another 30 years. I don't have another 30 years to live - I have already slept 16 critical years away. Hit the site and read what we are trying to accomplish - actuallly, what we ARE accomplishing!