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NIH rejection of Lipkin funding request

Discussion in 'General ME/CFS Discussion' started by Ren, Apr 2, 2014.

  1. Claudia Goodell

    Claudia Goodell

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    Hi @JayS

    I understand your concerns about the use of the number of ME vs CFS patients, and the myriad of problems associated with the source of those statistics, and I understand that we don't want/need any more damaging psychosomatic studies published on ME/CFS, BUT when a member of congress sends a letter to the director of NIH requesting a $7 to 10 million Request For Applications (RFA) specifically for ME/CFS WE NEED TO join the bandwagon, and IF there is fallout we should deal with it if/when it occurs.

    If granted, this request would earmark a lot of money for requests for applications specifically for ME/CFS, and that would open the door to all our GOOD researchers who are begging for funding. We can NOT afford to stop taking every opportunity that floats by, even if it isn't packaged the way we would prefer.

    No, the person or people who wrote the letter likely would NOT think that government funding for physical illnesses can be and is sometimes spent on psychosomatic studies. Why would they if they are not in this chronic illness community?

    Additionally, anyone who is not personally involved in this illness or any other chronic condition would assume they should get accurate information from the CDC website, and wouldn't question the CDC reported numbers or information.

    These are things we have learned from our experience. Maybe there is a hidden opportunity here for you to write to Congresswoman Zoe Lofgren and/or her aide (Dr. Ben Gutman - ben.gutman@mail.house.gov.). It seems he was instrumental in getting this letter out. Perhaps he has a personal connection, but doesn’t understand all the politics involved in our disease.

    Maybe you can request that they write an addendum to the letter explaining your concerns. Do whatever you can, but please don't do nothing. Your voice is far too important and your knowledge and experience must be shared with anyone willing to listen. Thanks JayS!
    Last edited: Apr 9, 2014
    Izola, beaker, xrayspex and 3 others like this.
  2. Claudia Goodell

    Claudia Goodell

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    As a patient community we must stop relying solely on our emotion based responses to information, and try to be more aware when we are experiencing an emotional response to information. That is precisely the time when we need to step back and examine where that is coming from, whether the response is based in fact, or whether it is stemming from fear based or harmful actions of the past, and only then should we react.

    Everything doesn't have to be us against them, or me against you.

    I am not only speaking about our patient-to-patient interactions, but also patient-to-patient advocate, as well as patient-to-government agency representatives. We will only be respected and then heard by those in power when we present as unbiased and fact based information as we can.

    I am not suggesting that we remove emotion from our messages - personalizing our messages makes them more powerful, but we can NOT attack the agency representatives tasked to this illness, nor should we attack one another based on assumptions, especially one who has taken her time and energy to do the hard work required. We absolutely NEED the work that Jennie is doing. No one else is doing it, and criticizing her is not supportive.

    I am sorry if this is harsh, but this patient population is made up of those who are so sick they are understandably unable to contribute to advocacy work, those who are well enough to push through and advocate as well as they can, and many who are well enough but choose rather to complain on forums and websites, criticize the work of advocates, or present argumentatively to government agencies or national organizations. I am not saying it's all rosy and that these entities know how to fix this mess, but I do believe we all want to, and those in power will respond to our level-headed and well researched input. The FDA has demonstrated this.

    When Jennie reports that there is a positive upward trend in NIH funding for our illness that is not a statement of emotion, and she is certainly not suggesting that we FEEL positive about this status. It is a fact based statement in accounting terms that the trend of their spending on our disease has moved upward over the past year, no matter how small it still went upward. Period. No emotion attached - just fact.

    This is just one example of how patients can and need to take a breath and try to remove preconceived biases from our responses. To NOT do so is to fuel the fire of the psychosomatic association of our illness simply based on our reactive nature.

    I hope this is taken with the good intention with which it is written, and I think it would be well received if patients would take a moment to appreciate the efforts of other patients and thank those who are working to advocate for this community.
    Last edited by a moderator: Apr 10, 2014
    August59, Kati, beaker and 7 others like this.
  3. Soccermanjb

    Soccermanjb

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    @vli Did you have a bad response to ampligen? I'm going to get blood work done Monday from Dr. Lapp to see if I'm accepted for treatment.
    vli likes this.
  4. Hope123

    Hope123 Senior Member

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    1) The "1 million" figure is a CONSERVATIVE estimate and is much lower than what has been quoted before; it is also used by Dr. Leonard Jason, the chief critic of the CDC Fukuda criteria.

    2) Do you seriously think that getting stuff done on a national level takes only 2 contacts? Although it would be great if it did, the reality is, CFS-related or not, most issues require time, energy, and multiple contacts with multiple people to get it through. Now, I understand that people are sick and may not be able to follow through in the way a healthy person can but let's not live in a fantasy world here.

    In addition, don't be like a 5-year old (grow up!) and assume every action taken will be perfect or will be successful. We will make mistakes along the way and things will not be optimal but some action is better than merely complaining on the Internet. The key is to learn from mistakes and keep improving.

    3) Congressional staff may not know much about CFS (and it is our job to educate them) but they know better than us what may or may not work when addressing people like Dr Collins or other Congressional members. If you go back to the 1998 IOM report on public input into NIH, you will see that NIH staff absolutely hate politicians interfering with their work. Some interference is needed to assure that taxpayer dollars are spent wisely but as a scientist, I an also see the other side, there is a long history of politics interfering with science and leading to false conclusions.

    So, and I did not write the letter nor knew it was in the works until later, that is probably why the phrased things the way they did.
  5. Hope123

    Hope123 Senior Member

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    Yes, great thoughts!

    I'm one of those people who believe how we represent the community is very important. Like Jennie, I believe in accurate representation as much as possible. There are some pieces of ME/CFS history like outbreaks that need to be spoken about more but at the same time, we need to be careful that our other information is correct. For example, I have seen the figure of 17 million people worldwide affected thrown about without much proof. (if you have it, share it with me) That number was extrapolated from XMRV studies. If we used the lower prevalence rate of 0.4%, assume a world population of 7 billion, and that CFS affects every country uniformly, then the figure is closer to 24 million actually BUT that's with the above assumptions.

    Another thing people might want to think about and an exercise I do myself whenever I interact with anyone is to put myself in that person's shoes. Suppose you are a young legislative aide with a background in history/ political science and in your enthusiasm/ idealism/ ambition, you decide to work for long hours, relatively low wages, and far from home at your Congressman's office in DC. You have no background in biology/ medicine. Now an angry upset constituent comes in accusing the federal government of decades of neglect, cover-up, etc. regarding their illness and they want you to do something NOW. How do you react?

    The above scenario is fictional but I can see it happening. So I try to think about that aide and carefully slowly and gently teach them about ME/CFS -- the science and the politics. It's said by some "Show, don't tell." so sometimes I just give them the facts straight and let them draw the conclusions. People are more likely to believe in something strongly when they think they've come up with the conclusion themselves. I also try to learn about people's backgrounds -- someone with a PhD in biology will require less explanation for example -- and whether/ what they've heard about CFS. This allow me to reinforce the right things and correct the wrong things.

    I'm not naturally a "touchy-feely" person but learned these techniques for working with people over years in my other field. I've also done some teaching in the past and learned some techniques there. I'm still learning.
    Snow Leopard, rosie26 and SOC like this.
  6. JayS

    JayS

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    Oh, dear me. I haven't had this many people so angry at me since I flushed the family toothbrush down the toilet. I honestly have no idea about some of these posts, or the perceptions of what I've said. Two things for now.

    I'm going to reiterate: we've seen the NIH turn down even Ian Lipkin (among many other scientists who would seem quite capable of putting together a rather credible and promising grant proposal at various times over the past 25+ years), the great virus hunter...turned down his grant proposal to study ME/CFS, and so badly want him doing anything else, to the tune of $30 million. So the idea is to have Congress hand those very same people several million dollars to dole out for the study of ME/CFS as they see fit. This is not an idea I can support. Sorry. I'm not going to lobby against it; you can do whatever you want. I won't be joining you in this.

    On the idea of 1 million patients, which I dispute: yeah, let's turn this into me vs. Lenny Jason instead of actually thinking about it for a minute. His 0.4% based on Fukuda is from when, 1999? During which there were 281 million people in the U.S. Now there's about 36 million more, which ups that number, if it's real. Of course, I am not a scientist. I'm just a guy who thinks things would be quite different for us if there were an ME patient for every 300 or so healthy people.

    On the other hand, a more recent study in the UK found the prevalence of CCC to be at 0.11%.

    http://www.biomedcentral.com/content/pdf/1741-7015-9-91.pdf

    Can that be taken as accurate? And then extrapolated to anywhere else? Who knows. I suspect it's quite possible. Which would work out to somewhere around 350,000 patients in the U.S., a number that makes a lot more sense to me. Does anyone know if Lenny ever said he believes there are 1 million Ramsay/CCC patients in the US? If not, then there is no reason to think I have any disagreement with probably the preeminent expert in the field.

    If so, I will stand corrected, and will look upon that number as valid. Until then, it makes no sense to me, and does us more harm than good so far as I'm concerned.
  7. Hope123

    Hope123 Senior Member

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    I trust Lenny Jason's figures over that of the UK -- not so much because researchers Pheby and Nacul on the study you cited are at fault (I've read their papers and communicated with them; they're great) -- but rather that those are clinic-based studies. That is, people who showed up in a clinic, were diagnosed by UK MDs, and then were drawn by the researchers from interviewing the MDs or from administrative databases. Given the degree of underdiagnosis of ME/CFS, which was almost 90% in a past Jason study, it's possible that a fair number of people were never diagnosed.

    The Jason study was also community-based -- that is, a very large number of people were phoned randomly, asked about symptoms, and then examined by physicians to come to the diagnosis. With clinic-based studies, you have issues of people who don't think their problems warrant a visit, are too busy to visit a doc, and, esp. in the US, can't afford to see a doc, even if very sick. If you read the discussion section of the UK paper you cited, the authors wrote about these limitations and write that the population prevalence may be higher than what they came up with.

    We're also comparing UK to US figures so some difference is expected. Prevalences are commonly not the same from country to country.

    Nonetheless, the CCC are very new so I would expect new figures to come up over time. Community-based studies are better than clinic-based when you're looking at epidemiologic data but the former are more difficult to do and more expensive.

    I'm not angry with you -- I'm just explaining things as I see them. If you knew me personally, you would know I might be passionate about something but I am rarely angry because it is mostly unproductive for my purposes. (The few times I am angry in a decade, people freak out b/c they're so used to me being calm!) However, when presenting to the outside community about ME/CFS, it helps people to get an idea of what the numbers are like, even if they are imperfect. When you get a chance to talk to someone in Congress (or anyone influential for that matter), you usually don't get a lot of time -- 20 minutes for instance -- so you have to be pragmatic about what you present. It's not a time for subtleties. Once you get them interested, yes, they might give you more time and then you can go into the details.

    For me, communication with someone is not about how I feel at the end, it's how they feel and whether they got the message I intended. There's the old saying about "To be understood, seek to understand first." and that's what I try to do. I'm open to trying different methods but they must yield results - that's all that matters to me. You don't know who I am b/c I like my anonymity (and people are protective of me, thank you) but I have been able to get some things done using current methods.

    Finally, read the letter by Dr. Gutman -- it talks about the harm done to patients by those who would think it is psychosomatic and the effect on researchers and funding. It's not directly telling NIH what to fund or not fund but it's not entirely ignorant of the history/ politics of ME/CFS either.
    peggy-sue, SOC and jspotila like this.
  8. Izola

    Izola Senior Member

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    Money, Power, no indications they have souls. Your typical, every day sociopaths. Iz
    Ambrosia_angel likes this.
  9. Izola

    Izola Senior Member

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    Wally: You are still a HERO!!! You Took on D,C. by yourself!! Uhrah!!! Thanks for Info. Izola
    peggy-sue and beaker like this.
  10. Izola

    Izola Senior Member

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    Taniaaust: So right you are. Hillary Johnson set forth the pre-2000 massive effort to bury it and us. It was so shocking I think a lot of people thought she made some of it up or that it couldn't be that important. (My impression after watching reactions of many talking heads and anchors. Then the media dropped it. I think ABC hung on longest.)

    I wish we could sue every country what's done us wrong in world court. They are sending us through long agonizing deaths. What other disease has such a high suicide rate? This is a human rights crime, a crime against humanity and we need to quit being so damn nice. That's been tried and doesn't work.

    Thank You Jeannette Burmeister for taking the Feds to court and getting in their face at the IOM meet. Also to you all who also did the "in your face" at IOM. I still occasionally watch you over and again on youtube.

    And, BTW, we've already told the HHS and IOM everything they need to know. Why grovel any more? Just throw copies of the expert's letter and the CFSAC's statement at them. And I mean throw.

    I can't get to San Francisco but I can lie on the floor or ground somewhere with my pillows and blankets and dare anyone to rough up my frail body. Who else will come forth in Phoenix?

    Can we start spreading our petitions on line out to the general public by email? I don't know exactly how all that works but some weeks I sign a dozen or 2 petitions for different causes. It distracts me from pain, is not horribly difficult except at times) and I can do it lying down listening to '60's movement music.

    Grant us a couple years of Ampligen and we could take 'em. Keep up your spirit, Tania!!! Izola
  11. Izola

    Izola Senior Member

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    Last edited: Apr 24, 2014
  12. Izola

    Izola Senior Member

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    Jennie: Thanks for all you do. I am not "up" on everything you do but I know it is a hell of a lot. -- I know you feel a loss of your career, but you are still really good. I do worry what this all is taking out of all the legal advocates but am so-o-o grateful for you & their being.--

    I believe a variety of advocacy methods are necessary. Unfortunately, I was semi comatose a great part of the last few years until about when the IOM heated up, I have to bow out of hard nosed advocacy. I can't comprehend a pile of info unless I have weeks, months, to cogitate. I'm still, hopefully healing. That doesn't mean I won't or shouldn't put my 2 cents in now and then. Given odds I am occasionally spot on.

    My mind could gobble up tons and my OCD arranged it perfectly. And, Dammit, I was really good. My legal writing hit hard, direct and mightily effectively. I guess my magic pen is gone.

    There are those of us who will most always be trailing behind in a lot, but still have a lot of good ideas to contribute. We mourn for what this disease has taken from us. Better for our anger to spurt out here, the forums can often act as a containment vehicle so we can direct our anger effectively. Plus, we don't always have to, we can't always be perfect. There should be a place for all levels of functioning if we are going to amass a visible presence.

    In response to a previous comment about demonstrating. To those who will only stand, many of us cannot. For those that will only sit, there are those of us who cannot. Some of us can only display our presence.

    Sorry for just throwing this out so scattered. The next few weeks I may not be available at all so I just threw it on the table.
    Last edited: Apr 24, 2014
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  13. jspotila

    jspotila Senior Member

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    Thank you, Izola!!! I understand what you are saying about feeling like you've lost the magic pen. I feel that way too sometimes, and the last year has at least taught me how to recognize when it's coming on. I believe every single one of us has something valuable to contribute. Standing, sitting, writing, speaking, venting, appearing, hoping, or even just hanging on another day - every single patient and advocate can contribute to the movement. And you are absolutely right that we need every single one of us to build something bigger.

    They can have my computer when they pry it from my cold dead hands! I don't plan on shutting up before then.
    peggy-sue, beaker, rosie26 and 2 others like this.
  14. Izola

    Izola Senior Member

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    Jennie: Yes, yes, yes, and then they should enshrine your computer as a symbol for all you are do for all of us! I have a feeling they will have a hard time prying. Thank you. Izola
    jspotila and rosie26 like this.
  15. Izola

    Izola Senior Member

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    Thank you, Rosie. Iz
    rosie26 likes this.
  16. Izola

    Izola Senior Member

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    Aimossy: :D:thumbsup::thumbsup::thumbsup::woot::thumbsup: I don't see that as a rant, just a "think about this!" Thanks for the insight! :):D:nerd::balloons::thumbsup::thumbsup::p you must see a better class of doctors than I do--I don't think they recognize Lipkin. (sad) Iz
    Last edited: Apr 24, 2014
  17. Izola

    Izola Senior Member

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    We stand on the shoulders of those who have gone before us. It is up to us to determine what new and what variations of the past will work or fail for us. We can ignore the past, but to what peril? I wish I could climb the CDC building and hang a banner, Iz
    vli likes this.
  18. alex3619

    alex3619 Senior Member

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    I do frequently disagree with what many advocates are doing. Disagreement is not disapproval. With very rare exceptions (I can name only two, but wont) I appreciate the motives and aims of those advocates, even if I disagree with them.

    Analyzing this mess needs to be coldly rational. It needs to be based on evidence, and reason.

    Designing strategy needs to be coldly rational. It needs to be based on evidence, and reason.

    Operating in the scientific world to advance the research needs to be coldly rational. It needs to be based on evidence, and reason.

    Countering bad research that is promoted through emotional and persuasive research is best done from a cold and rational perspective.

    Operating in the social world from a position of fact and reason is necessary, but if the action is cold and unemotional it will fail. People engage with powerful ideas. That is either emotion or something that will explode their understanding.

    The political perspective needs to be based on cold rational analysis, but it cannot progress based on that. Emotional rhetoric is a political tool. So is emotional action.

    Legal action often sits in both worlds, the emotional and coldly rational. Its not a simple area to work in.

    Its a mistake to think most societal and governmental systems are out to help us. These systems operate to sustain the status quo. They do help people, but change is limited and slow. It is impassioned individuals, mavericks, people who think outside the box, those who operate outside these systems, who are the driving force of social change. Only very rarely, not even once in a generation, does someone come along who can make huge changes within the system. Usually they are stopped.

    There are systems within society that might support us, assist us to create change. They include civil rights movements, anti-establishment movements, other disease or disability or advocate groups etc. Within government we need individuals who are not lemmings, who are willing to take the right risks for the right reasons.

    I am not a fan of centralized conspiracy theories. That does not mean that systems are not in place to stop us. It means that we are opposing the way things are, the inertia of society and government, and fighting inertia is hard. Things can push back. Change starts slowly. Momentum takes time and effort.

    I think there are better ways, some things I hope to write about in time, but there are no quick ways aside from groundbreaking unexpected scientific discoveries that capture the imagination.

    I do not know what Lipkin will find. Probably nothing. I do know what happens if we don't look. Nothing new is learned.
    Last edited: Apr 25, 2014
    SOC, aimossy, August59 and 3 others like this.
  19. aimossy

    aimossy Senior Member

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