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Article: Time to Make a Difference Together by Marly Silverman

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 10, 2011.

  1. asleep

    asleep Senior Member

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    I already addressed this. Holding the WPI to this standard is illogical (there doesn't exist a positive control before one is found) and scientifically unnecessary (one only needs controls on the "opposite" side of their finding to show that their finding is not false...hence positive findings don't need positive controls).

    My understanding is that both of these statements are not as true as they were at publication time, in that greater sequence variety has subsequently been found in both cohorts.

    That aside, I'm not sure what point you're trying to make. Are both of these groups guilty of not knowing every last detail of a new discovery prior to making it? If so, that is an impossibly high standard for any researcher.
     
  2. dannybex

    dannybex Senior Member

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    You're joking right?

    If not, please post a link to a thread from this forum where these negative studies have been "continuously propped up w/o any discussion of their glaring flaws".
     
  3. Cort

    Cort Phoenix Rising Founder

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    Good point...I should have reread your post. My apologies. I often get referred to incorrectly as well - so I should have checked more carefully.

    I do want to point out that Antoni authored the study and she participated in it. He was awarded the grant.

    We are forgetting the fact as well that the study was successful. These patients did get better and they are presumably happy to have participated in it. She does find that this stuff works to some degree. What is she to do? Should she ignore it because it's not politically correct? Increases in health do not come easily for people with CFS.....

    I agree that its not answer and what we want it is the answer and so this type of study will always be secondary. This study.though, did not cure patients or suggest that it cured patients. It was not a Wessely/White study in that sense.......and it's findings should, in an odd way, calm patients, I think - because they did not suggest the stress reduction techniques were a cure. (The study also documented high levels of pro-inflammatory cytokines ....:eek:)

    Can you argue that this study will lead to more stress reduction studies and fewer biomedical studies? I would hope not - because it clearly presented both the benefits and limitations of these practices. If I was a researcher I would not, based on the results of this study - say don't study CFS pathophysiology - I would say - this study, for whatever its benefits, indicates there are some problems to be addressed that we are obviously not addressing with these practices.

    As you know Nancy Klimas does not have a pool of cash to spend on whatever study she wishes. It's all up to the grant review boards....They get their biomedical grant proposals....The best thing for us, maybe, is to continue to protest when we don't see those studies get funded. As you rightfully point out that is what we really need.
     
  4. WillowJ

    WillowJ Senior Member

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    I think it's both/and. We need to stick together and not be divisive unnecessarily. And we also need to be able to correct misstatements and mistaken focuses.

    I think our problem is more in tone and defensiveness, than it is in having people who are just divisive by nature. Our problem is out there... not in here... and that includes "patient bullies" and noisy wheel advocacy persons and groups.

    We can't say no one is allowed to make suggestions or criticisms (or will be automatically ignored when they do). That would just be more tyranny.

    If you're going to give CAA a free pass for any and all perceived transgressions, you have to give Mindy and other squeaky wheels a free pass for any and all perceived transgressions, too. That's basic fairness. No sweetheart deals.

    Ultimately, to work together, we have to find a way to create a give-and-take environment, where we can trade ideas and make suggestions and constructive criticisms in a respectful manner. We have to do this in order to win the war for proper medical care.

    So how do we get there, from here?

    respectfully,
    Willow
     
  5. PANDORA

    PANDORA PANDORA

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    need to stick together

    Willow,
    I agree that we need to stick together.
    Marly

     
  6. asleep

    asleep Senior Member

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    I am certainly not joking. As for a recent example, see: http://forums.aboutmecfs.org/showthread.php?9948-XMRV-not-found-in-Fibromyalgia-Patients-in-Spain.

    I probably should have worded my statement more carefully. It's not that there is no discussion of flaws, but rather that whenever there is, certain individuals rush to scene to subtly undermine the WPI's findings by effectively propping up the negative studies beyond their scientific grounding. This is not done through sound scientific reasoning, but through the creation of confusion and doubt and by the weaving of fanciful narratives. "Misremembered" facts, "misunderstandings," and insidiously unscientific reasoning are among the methods employed.

    Feel free to peruse my comment history for many specific instances where I have pointed this out.

    I want to know the truth above all else, but I don't suffer from delusions that XMRV will be given a fair scientific hearing. The events of the past 15 months, as well as the last 30 years of CFS "science," have dissuaded me from this notion.
     
  7. PANDORA

    PANDORA PANDORA

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    t-shirts and banners at the CFSAC meeting answer

    the t-shirts was printed and created by Time for Action organizers. The banner/cards Act Now printed and created by PANDORA.

     
  8. PANDORA

    PANDORA PANDORA

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    You make a good point. We actually are often on the same page. I had a conversation once on my facebook with an individual who blasted me for not donating or raising money for WPI as well as not working on issues that the patients considered important. When I cross referenced her issues with mine, we had complete agreement on 7 out of 10. Not bad heh? meaning that she and I could comfortably work and collaborating in getting 7 issues out 10 in the forefront.

    The issue of donations to WPI was resolved because I shared that I donate every month to them sometimes several times in a month in honor of my friends Birthdays when they raise money for WPI.

    Putting on thinking caps... we should.
    Marly

     
  9. Cort

    Cort Phoenix Rising Founder

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    :) :) Nobody said this was easy!

    I'm not suggesting this....

    I
    I have laid out my critiques of the CAA many times. Maybe the problem is the focus on transgressions rather than possibilities. Are we getting tied up too much and focused too much on 'transgressions'? instead of working towards possibilities? Do we have a vision of success - are we working out of that? Or are we more focused on what's wrong and proving that 'we're right'.

    The most important question to ask may be 'what works". What outcome am I moving towards when I do 'X'. For what am I doing 'X'? Am I creating 'sides' by doing that or I am empowering the community as a whole in its goals of getting more research and more funding?
     
  10. eric_s

    eric_s Senior Member

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    I think there should be some sort of forum (i mean forum in a general sense, not an internet forum) where the exponents of the different organisations can connect and discuss their points of view, try to come up with a common strategy etc.
    There are conferences for the scientists, why aren't there such for advocates, advocacy organisations? Or are there?
    This should happen on a regular basis, so everybody knows each other and what they are doing at the moment and so that some routine in working together can develop.

    Of course, many of those people have ME/CFS themselves, so they may not be able to travel, but technology could help solve this problem.

    And i think in the USA there are several state organisations, like the one from Massachusetts. Is there some sort of umbrella organisation that unites them? If not, wouldn't that be a good thing? So they could also do some joint actions more easily.
     
  11. PANDORA

    PANDORA PANDORA

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    Thank you for your kind words in reference to our role on the Baldwin Case. It was a difficult case it took months to get it resolved. It was such a frustrating time for all concerned. But I am glad Ryan is home now safe and sound. Yet their plight continues. How do you make a family, who has suffered so much whole? It will take a long time before their healing process is done.

    You pose a very good question about how do we gather financial resources to move the overall cause forward. I can tell you that PANDORA does not engage in large fundraising within our community. We have never charged membership fees. The programs we have sponsored we have always provided either free as a community service or such a modest fee to cover per example a lunch or a snack. We have done this because we know how difficult their financial situation is for the individuals we serve.

    We need to support WPI in their efforts and the support can come in many different ways, not just money. Obviously money is best. It would be the best way for them to fulfill their mission. A $10 donation a month to WPI multiplied by 100 donors is a $1,000 a month. If we have 1,000 patients doing the same is $10,000 a month. Could we keep up with this kind of donations efforts, in a year period, I bet you we could. Meaning that in 12 months we would have raised $120,000 for WPI. I can tell you that this type of effort would make Annette happy and would assist WPI in their mission. Even if we were to do $5 a month, it would then be half $5,000 totaling $60,000 a year.

    I am sure there are many individuals already doing this and I am sure they are grateful for this support.

    This is the kind of support that Patients can build up- One patient at a time.

    I will clarify again that the word "punished" meant as an admonishment of the behavior of someone who is attacking another individual publicly through the internet or is posting misinformation or inaccuracies about another. If civility, courtesy and respect is not emphasized in our interaction. Then there is no boundaries and the conversation and the dialogue is broken.

    Personal responsibility is important no question about it. I do understand the frustration that at times comes to the surface. It is not a good day. The illness gets in the way of seeing things clear. We all have those bad days and usually someone apologizes and the conversation is back in place. This is not what I am talking about.

    I am talking about a deliberate approach to strike against others to the point that is harmful and bring emotional turmoil to all. This is why I asked that for every act as such let's respond with a act of kindness towards one another or of appreciation for organizations which are doing the best they can to help us.

    I don't understand why MCClure was appointed to the NIH SEP either. I think the government eagerness to get this SEP going did not realize the depth of the situation. Another issue of the SEP which many in our community have not realized is that the SEP as it is, is not only for CFS, but also for FM and other chronic polysystemic disorders like TMJ, therefore there is why you see rheumatologists and dentists. My issue with dentists is that because dentists are not required to have dentistry school or CME training on CFS, they are not qualified to review CFS-ME papers and probably not FM either, even though there is an overlapping of TMJ in CFS and in FM.

    Potential solution: We need to ask for a SEP specifically for CFS-ME.

    Current issues: It has been a setback because it will be a while before they can have another SEP in place and need to keep an eye on this too. Since the SEP reviewers are VOLUNTEERS, we might have a hard time finding another researcher to participate. Also, once a researcher participates in one SEP round, my understanding is that we have to wait an entire year to be able to recycle back. Many researcher within our community are overworked and overwhelmed already. I am praying that this gets fixed soon.



    I would like to take this opportunity to address the issue below too:
    "You should read both Heidi and Khaly's take on the matter of manufactured, inauthentic unity. Characterizing their views as minutia displays short sightedness. Complaining about abusive, dissenting voices lacking credibility but refusing to engage with those who are civil and willing to be in dialogue with you is a mistake.[/QUOTE]"

    We are/I am in fact cooperating with Heidi Bauer (she has signed off on the Petition letter to the CDC) and I have often included Khaly's on e-mails with topics/concern of the CDC and the NIH. So, it is important that you know this fact. In fact I have often promoted on Facebook Khaly's Craig List efforts and have great respect for both. They are amazing individuals. So I supposed in some level I need to walk way from all of this for a while, to be able to stay focused on working on fund-raising project for PANDORA,which is important too. Cooler head always prevail, don't you agree? Thank you for your time.

    Marly


     
  12. PANDORA

    PANDORA PANDORA

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    Eric, I like your ideas/suggestions for a coalition of organizations. There is why I am mentioning over and over the sense and the urgent need to unite to do joint efforts. More and more I hear this from patients across the U.S. and overseas.
    Marly

     
  13. WillowJ

    WillowJ Senior Member

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    Cort, I wasn't specifically addressing you here, but several of the posts on page 1.

    I don't think most of us are intentionally trying to create sides for the most part... most pertinently, there are some things CAA itself has said it doesn't have the time or desire to do... and so in some cases we need to find someone other than CAA to do whatever advocacy becasue that particular thing just isn't CAA's strong point for whatever reason. This isn't saying CAA is all bad, simply that CAA cannot effectively do certain things.

    Maybe part of the solution is to figure out what the strengths and interets are of various organizations and advocates, and know who to ask when you want x done, and then there aren't hard feelings when organization a doesn't do x.
     
  14. WillowJ

    WillowJ Senior Member

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    we also have to think of, is any funding and research going to help, or are there certain kinds (even particular kinds of biomedical research) which are going to help more? Especially in a situation of low or very low funding?

    If there are certain kinds of reserach which are more helpful--and it's my firm and educated position that this is so--than what message we have is essential.

    And if what message we have is essential, then we do have to be able to hash out the details and correct mistakes in the message without people getting defensive and accusing us of picking sides or being bullies or nitpicking or putting people in boxes labeled "pure evil".

    Like has been said, we have to have grace and know that we're a community of sick people, we have bad days, we don't express ourselves clearly or necessarily say what we meant, we may have mood swings or medicines that make us grumpy.... so we do our best to be nice in the first place, but when we make a mistake we apologize, we forgive, and we go on.
     
  15. Kati

    Kati Patient in training

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    I am thankful for this safe and calm discussion. Thank you Marly and others for spending the time dispelling the myths.

    Nancy K is my doctor. She is an immunologist first and foremost. She is a human being too (I almost forget this because to me she is a saint!) She gave me her resume to pass on to the disability insurance people, in case they question her credentials. It's 30 pages long!!!!! She's authored a book on disability and MECFS. If you listened to CFSAC and the latest blood meeting you will know that she is one of our heroes and fierce advocate for our cause. She certainly didn't deserve the severe critics she got. These doctors, researchers dedicated to our cause, Nancy, Judy, Bell, Peterson, Cheney, De Merleir, they are already fighting the adversity of their peers and governments.Bell came out of retirement! They each have something to contribute in their own unique ways. Some sacrifice or have in the past sacrificed their own private life for us. The best gift to thank them for their work is to support them for what they do. and welcome new researchers trying to get in the fields... Imagine a hostile cohort of patients... If I was the researcher, I'd turn around and run...

    again thanks for the civil and respectful choice of words.
     
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    This is made my day. Didn't know the buzz (at least) was that good. Hopefully we will be out of this darkest 25 year period shortly!

    Cort- It sounds from what i've heard Dr. Mikovits say, that their tests have gotten much better. This is one strong reason they should get funding. What if these rumors don't pan out as well as we had hoped and/or the usual criminals send out 10 press releases "XMRV proved to not cause chronic fatigue" like the one they did recently and 30 anti-science propaganda papers in BMJ and PLoS and the mainstream scientists then say they 'need more time to sort thru the science and more studies need to be done to see if there is an association between fatigue and a mouse virus." Who is going to come to the defense of science and us? CAA? We'll have years more of a living hell.
     
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Klimas' gaffs like saying 'chronic fatigue' are like nails on the chalk board to me. Overall, though I think Klimas is great. She could have stayed on the AIDS research gravy train, but she helps us a heck of a lot instead.

    re the contention that CDC isn't bad: F*** CDC's "CFS" program! It's an evil POS. I hope Reeves, Unger and the other criminals get more than their fair share of papercuts and traffic jams!

    This Phoenix will be Rising from the ashes of CDC's "CFS" program after it burns to the ground (metaphorically speaking of course :innocent1:).
     
  18. WillowJ

    WillowJ Senior Member

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    I don't think anyone is saying CDC isn't bad. CDC is bad, evil, deranged. CDC is malfeasant. CDC is part and parcel of the "them" who is "out there" identified as "the enemy." CDC and the rest of the Wessely school who have made themselves our mortal enemies, who hate our guts (figuratively and literally both) and our encephalitis.
     
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Cort is in the post I quoted above:
     
  20. eric_s

    eric_s Senior Member

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    I'm not a US citizen or resident and don't have much experience with the CDC, so i'm probably not really qualified to judge them, but i think we might want to be careful in how we are dealing with them.
    I don't know what the best approach is, but since the CDC is an agency where 15'000 people work (according to Wikipedia) and is probably a pillar of the US health system and only a small part of it is dealing with ME/CFS, i think we should not call for the dissolution of the CDC or something like that.
    I think we should try to be as precise as possible and pinpoint what's wrong or what has been done wrong by whom and only try to change that or hold those people responsible. The CDC is probably there to stay and i think our end goal should be a good relation with the CDC and getting the maximum possible help from them. Of course they and their actions need to change.
     

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