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NIH rejection of Lipkin funding request

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

  1. Ambrosia_angel

    Ambrosia_angel Senior Member

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    That's even worse. They don't even acknowledge us at all. At least if they hate us they are partially noticing us.
     
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  2. vli

    vli

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    They can afford to ignore us, unfortunately, because we're physically unable to cause a racket by protesting at Washington, or Parliament, or march on the streets. Dr Lipkin specifically said in his interview that this was what he felt got the NIH to take AIDS seriously, and we are unable to do precisely that because of how fatigued we are (I'm saying the second part of this, not Dr Lipkin).

    Sometimes it really looks like the only way to show them we mean it is if we get all our beds and mattresses out and start sleeping in front of these institutions.
     
  3. aimossy

    aimossy Senior Member

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    Sit ins around hospitals and institutions with placards on mass in different settings across globe coordinated...
    but it could be done and a date planned so people like us have time to make that happen....to protest lack of research funding..
    I dunno...but any efforts need to be seen by lots of busy public!

    Are we brave enough! Are we organised enough! Are we mad enough now!
    USA advocates told that no research funding studies because no researchers want to research us....

    OH OH that's not true!!!

    Thankyou Dr Lipkin for handing advocates and activists this on a plate....

    I hope America is starting to think about being up in arms, or doing very public sit ins in future.

    Just about every general practitioner in the western world and wider knows who Ian Lipkin is and respects the mans work.
    They also respect research from Stanford and Columbia.

    Its my opinion we have a few things being handed to us on a plate right now.

    Sorry if my wee rant offends anyone but this is how I feel and Im trying to do my bit with what's been happening in our world.
     
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  4. vli

    vli

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    Anyone who's offended by what you say is a bit loopy in my books.

    I'm up for it, as long as it doesn't turn violent ("PWMEs? Violent?" I hear you cry). Anyone who's seen "How to Survive a Plague" (or saw it when it happened) knows what we're talking about.
     
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  5. aimossy

    aimossy Senior Member

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    I would like to see one very united cry for research funding and research.
     
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  6. vli

    vli

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    I'm beginning to think that such sit-ins aren't nearly as impossible as they might seem to PWME brains.

    Like you say we can coordinate it (like Earth Hour) around the world to get the media to cover us. It's cold and damp at Westminster or Washington, sure (not to mention we can't stand for long), but it's possible inside hospitals, even if we can't get into government buildings. AIDS sufferers sat inside hospitals. Many of us can report numerous visits to A&E/to the ER when we were maltreated, dismissed or made to sit in a plastic chair for HOURS. So it's not unreasonable to sit inside hospitals.

    If we need to emphasise our point, all we need do is bring a dozen of cheap pillows and refuse to get up--"we're too fatigued to"--until they have to lift us off by stretcher or whatever. AIDS victims actually lay on the floor.
     

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  7. aimossy

    aimossy Senior Member

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    You could surround hospitals by passers see. It does look a little silly if fatigued people are jumping around the public wont get that.
    I guess my main thing about all that has been happening is that there is very good evidence now that this is a physical illness and top institutions are involved. We have the ammunition.
    Lipkin is providing attention to the fact that researchers need money not just him, he is getting that fact out there for all of them. Its not about one researcher versus another.
    I would like to see all the doctors and researchers involved get on the bandwagon with him and support him over it because it will benefit all of them. I cant say that enough.

    I think its a good idea to print off Komarof's (spelling sorry) final summary from IACFS/ME conference and Lipkin crowd fund www.microbediscovery.org website page that's appropriate and get it to your doctors. They may read the conference summary its a double hit of promotion and information that will make them think this is very interesting. It worked for me and my doctor said this is quite big.

    The more doctors get this stuff and believe the more they pressure their own support systems to help them with it. Extra govt pressure eventually.

    I think the timing is right, and we can wake this all up now.
     
    Last edited: Apr 5, 2014
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  8. Wally

    Wally Senior Member

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    In case you did not see the posting that went up last night, there is a demonstration scheduled in S.F. for May 12th. Here is a link to this thread.
    http://forums.phoenixrising.me/inde...y-12-2014-in-san-francisco.29438/#post-449603

    A demonstration is also currently being planned for Washington D.C. When details about the D.C. demonstration are available this information will be posted on the Forum. If you would like to plan a demonstration in another location in the U.S. or elsewhere and you have questions about how to organize one, I would be happy to provide you with information I have learned from participating in a few of them. :) I can be contacted at mecfsneid@gmail.com.

    Questions about the S.F. May 12th demonstration can be sent to Erica Verrillo at everrillo@yahoo.com. Erica is a writer and a longtime ME/CFS patient advocate. Here is a link to her blog at http://cfstreatment.blogspot.com/

    Wally
     
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  9. goodellcl

    goodellcl

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    Hi all,

    First I will say that the investigative and reporting work that Jennifer Spotilla is doing (Occupy CFS) is outstanding, and at the least patients should try to read, understand and share that information as much as possible.

    I can't really comment on the reason(s) why Lipkin's grant request was denied by NIH because I don't know what the denial was based on, but I can say that Congresswoman Lofgren's efforts to get an NIH RFA of $7 to 10 million for ME/CFS needs backing by patients right now. Congresswoman Zoe Lofgren's letter to the director of NIH has been signed by some members of congress but patients MUST contact their reps to request their signatures. I and other patient advocates have streamlined the process and mine can be found at https://www.facebook.com/groups/314293301959189/

    This is urgent. Please act on this and share the information to get this to go viral. Even if the NIH doesn't grant her request we will have provided some awareness about ME/CFS to many members of congress and their aides.

    Wishing you all wellness and peace.
     
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  10. JayS

    JayS

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    That Facebook page is promoting yoga products. For ME patients.

    If that's the patient population in the eyes of those in favor of this initiative...well, it's hardly surprising.
     
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  11. Firestormm

    Firestormm Guest

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    I am so exhausted, I read your post as 'promoting YOGHURT products' :rofl::rofl::rofl:
     
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  12. vli

    vli

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    I understand, @goodellcl, but unfortunately I am not American so there's no rep who represents me (not here anyway). If I were a US citizen though I would do this in a heartbeat and I urge anyone who reads this post to please do so--if I'm not American and want to do it, you should burn all the more with the desire to do it.

    ETA: I was wondering if the lawyers here--like @justinreilly--can tell me whether I actually have a right to protest and demand things in front of government buildings whilst I am here, when I hold a UK passport?
     
    Last edited: Apr 5, 2014
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  13. vli

    vli

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    Hi JayS, I'd be grateful if you could clarify which initiative you meant... while I think the letter goodellcl referred to IS very important and urgent, I can't claim credit for it and certainly have nothing to do with it (for the same reason I cited that I don't have a rep 'cause I'm not American). Thanks.
     
  14. Firestormm

    Firestormm Guest

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    Would an orchestrated email campaign work perhaps better? Having a template letter for each of the funding bodies in each of the countries, and then at an appointed time: we all hit SEND at the same time and off the letter goes to our own countries funding body/person responsible. I'd do that I think. I'm not good at getting places physically however, but a decent letter to the write person responsible, yeah I'd do that: a worldwide campaign - email and social media... or sommink. You know me. I don't have a clue about the why's and wherefores :)
     
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  15. vli

    vli

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    No, I agree. It's actually pretty darn nuts for me to suggest doing the things I'm suggesting because if we sit-in somewhere it'd have to be one of my "good" days--and as is evident from my failure to do that for Stanford, it doesn't seem to matter how much preparation I try to make in advance (although obviously attending a conference is more cognitively draining than a sit-in, albeit possibly less "physical"). I think what you said IS a good idea.

    But as you probably know @Firestormm there's no way I can do this on my own/organise this. If no one offers to help get that off, the idea stops right there (as it will for even more ambitious things like sit-ins).
     
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  16. taniaaust1

    taniaaust1

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    Why doesnt this at all surprise me, this is what we are up against behind the scenes. Those who believe that there is not a strong push out there to keep our illness in the dark are kidding themselves.. and they need ot be making sure that reviewers arent being biased towards our illness. How can we ever get far treatment when biased people get to make the decisions which lead to more baised.

    This is another example of discrimination and biased towards our illness which results in harm.. Where's the court cases?

    Our societies we support should be helping start up group legal case for discrimination! If they wont stand up for us.. we need to be working on discrimination cases and crowd funding for money to pay for this..

    When our decent studies are not funded while psychological studies seem to be easily funded, it is a case of discrimination esp since they do not know the cause of our illness. It has been greatly harmful to us that so many non psych studies over years and years dont get funded for the biased preference of the other.
     
    Last edited: Apr 5, 2014
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  17. taniaaust1

    taniaaust1

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    This money thou will be useless if most of it goes towards psychological research!! Im scared where the money will go to. Will it go towards already biased people trying to prove their psychological ME/CFS theories as funding has been wasted for the past 20 years? We need to be fighting the discrimination of non psychological views so our research there will be funded.
     
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  18. taniaaust1

    taniaaust1

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    Its great news that Jennie is working to try to solve the lack of transparency issue. Thanks for sharing that.
     
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  19. taniaaust1

    taniaaust1

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    Its a case there is a lot of biased in high places.. re insurance companies involved and other factors like that (big business runs and controls governments). I guess they dont want to risk that they may be having to pay out thousands for expensive anti virals or anything like that.. Antidepressants are far more cheap to be given us.. along with useless psycho therapy which most of us wont do.

    Hide how sick we are and then they dont have to be responsible for us.
     
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  20. taniaaust1

    taniaaust1

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    Im beyond at this point after fighting the bullshit around this illness for so many years of even thinking that a letter campaign will work. Look at the IOM stuff.. they didnt care and there certainly was doctors and patients alike protesting that. I thought we were quite coordinated with that. So what makes you think they will care about us sending a few letters, this probably will get less support then the IOM thing did.

    I personally think legal action is the only way to go at this point. If we can prove we are being discriminated against at government orgs level and prove that that discrimination has been harmful... which I believe we can. Look at the lack of studies in biomedical things with us, so many findings with no funding to be ever followed up etc etc.

    Could we prove that we are being unfairly funded due to biased for the level of our disease and for how many people have this? I personally believe we probably could. Look at all the history and things still going on now.
     
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