The Real ME: A Stock Photography Resource for the Media
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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More participants still needed for Jason mortality survey - can you help?

Discussion in 'Active Clinical Studies' started by Sasha, Mar 18, 2015.

  1. Sasha

    Sasha Fine, thank you

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    This important study is getting near the minimum number of people needed but isn't there yet.

    It's a crucially important study. Can you help?

     
    Last edited: Mar 18, 2015
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  2. Bob

    Bob

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    Last edited: Mar 18, 2015
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  3. Sasha

    Sasha Fine, thank you

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    Weird - turns out that I just had to move the closing quote tag. I've tested it and it works.

    Does it work for you?

    Gotta go now - back later!
     
  4. Antares in NYC

    Antares in NYC Senior Member

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    This is a very important study. I understand it can be extremely painful for relatives of those who lost the battle to this nightmarish illness to revive those memories, but it can help tremendously with the research and steering public opinion about this disease.
     
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  5. Antares in NYC

    Antares in NYC Senior Member

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  6. Sasha

    Sasha Fine, thank you

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    Apparently there was a problem with my link earlier (I put the 'close quote' html tag right next to it and that stuffed it up - sorry).

    The one in my post works now (for me, anyway!)
     
  7. Antares in NYC

    Antares in NYC Senior Member

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    Link still not working, Sasha. I get an error.
     
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  8. Sasha

    Sasha Fine, thank you

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    Now?
     
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  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    I'm not wanting to start an argument but I have an honest question. Why would this study be important?
    I understand the considerable tragedy in having people suffering with this disease ending their life.
    I don't mean any disrespect in asking and I don't want to add to any burden that survivors may have.

    It seems to me that there are better places to put any and all research funds that come our way.
    Into microbiome studies, mitochondrial studies (we know they don't work but why, what is happening), even studies that might help determine what subset are good candidates for Rituximab and other promising treatments.

    I'm honestly asking, what will this study accomplish? Will it help to stop mortality? The only type of intervention that can be offered from the results of this kind of study would be what?

    It's quite possible I am missing something here. I'd like to know how it will help us. Biomedical research will put to bed the nasty implication that we are confused and perpetuating illness beliefs if it is about perception.

    Can a study like this be tight enough to deliver good data for it's purpose? Is it worth putting family and friends through all this?
     
  10. Bob

    Bob

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    These are the potential benefits of the research that I can think of...

    1. Raises awareness of the issues that ME/CFS patients face, including issues re medical neglect and government support.
    2. Raises awareness of the severity of the illness.
    3. Could potentially be used to leverage greater funding for ME/CFS e.g. if the research highlights the severity of the illness and the difficulty of living with it.
    4. This study isn't looking purely at deaths as a result of suicide - it's looking at deaths from all causes in ME/CFS patient. So this might provide insights into how severely affected patients are affected by the illness.

    Sure, it could be argued that this research money would be better spent in biomedical research. But I think that's probably a matter of opinion and perspective. In any case, it seems that they already have the funding for this study, so we might as well support it.

    I don't know the answer to this. I think only the friends and families can answer this. Participation is voluntary, and some families and friends may very much appreciate having somewhere to report and record their experiences. Especially, perhaps, if they've had nowhere else to record their story. And Lenny Jason has proved himself to be a good and reliable friend of the community, so the participants' information will be in safe hands.
     
    Last edited: Mar 18, 2015
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  11. Snowdrop

    Snowdrop Rebel without a biscuit

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    @Bob

    thank you for your response and I hear you on the point that the study already has funding. Although it doesn't stop me from opining how easy it is to get such funding for non-biomedical type research.

    And you may be right about the families having no where else to go for someone who will listen. That's a big issue for people not to be over looked. The reason for the deaths (from whatever reason) will be seen as stemming from mistaken beliefs about the illness attributed to something else leaving the families and friends without understanding from those who might give comfort.

    But at the end of the day I see all the other points and feel that real solid biological research would give us the same leverage and credibility that we so need and are looking for.
     
  12. Antares in NYC

    Antares in NYC Senior Member

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    To me it's very simple: this illness can kill and has killed scores of people.
    In the meantime it got labeled "the yuppie flu," denied funding, and ridiculed to this day. The mortality factor in ME/CFS has not been properly studied and needs to be looked into, imho.
     
    Last edited: Mar 18, 2015
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  13. Bob

    Bob

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    That's a perfectly legitimate perspective. I'm not a fan of most non-biomedical research but, in my own opinion, I think this particular study is exceptional. And I think that this research might be exceptionally important for some people. Also, I trust Lenny Jason's team to carry out a solid piece of research.
     
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  14. Snowdrop

    Snowdrop Rebel without a biscuit

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    @Antares in NYC

    That's certainly true. It's even possible I could be one of them one day.
    This study will do nothing to change that outcome that I can see.
    Ridicule and nasty labels will also go away with biological research. Which was my point.
    I also conceded that the study already has funding.

    And I don't have any expertise in science but here on PR we spend threads debating why questionnaire and other such like research has difficulty getting useful data that is unambiguous and 'tight' or solid in it's ability to get clean unbiased results.

    Perhaps it is different with this particular study. If it contributes something useful that helps change the attitude toward this disease I will be among the very grateful.
     
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  15. Snowdrop

    Snowdrop Rebel without a biscuit

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    @Bob

    Just cross posted with your #13 post.

    Thank you. And I hope so.
     
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  16. Iquitos

    Iquitos Senior Member

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    It would be a study to point those denigraters to, those who say this disease doesn't kill anyone.

    It seems to me that those who have lost someone to this disease have suffered partly because of the lack of recognition that this disease kills. I'm thinking of Sophi Mizra and her mother's youtube video(s) on the subject.
     
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  17. Snowdrop

    Snowdrop Rebel without a biscuit

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    OK, that would be great. I was wondering how that would be accomplished with this study.

    From my post #11
     
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  18. jimells

    jimells Senior Member

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    My neurologist told me nobody dies from this illness. I pointed out about 20% die from suicide, but I don't know if he believed me.

    Maybe he'll believe Dr Jason?
     
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  19. Sasha

    Sasha Fine, thank you

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    20% of patients don't die from suicide - that's a misconception based on using only patients who die early as the denominator. We don't know what % of all patients die from suicide.
     
  20. Snowdrop

    Snowdrop Rebel without a biscuit

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    while providing a platform for families t be heard and acknowledged is most worthwhile. I would think that funnelling money into biological research would be seen as worthwhile even by the families so that we don't have to be concerned about what % die from suicide because money was directed at effective treatment and finding a cure.

    I certainly don't wish to ignore that this is happening or that families and friends might need the support of people who understand the nature of their loved ones suffering. I just hope that when this study concludes that there isn't a steady stream of non-bio research that continues to get easy access to funds while desperately necessary research continues to look for scraps.
     

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