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ACTION ALERT: ME/CFS on "Last Week Tonight with John Oliver"

Discussion in 'Action Alerts and Advocacy' started by SB_1108, Aug 8, 2015.

  1. SB_1108

    SB_1108 Senior Member

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    ACTION ALERT:
    Please sign up/login to HBO's "Last Week with John Oliver" page to "like" and comment on the topic idea of funding for ME/CFS: http://talk.hbo.com/t5/Last-Week-To...nding-for-CFS-down-to-zero/m-p/496181#U496181

    For those of you not familiar with "Last Week Tonight with John Oliver" - it has become a huge hit! It is seen as the replacement for "The Daily Show with Jon Stewart". Last Week Tonight is a weekly news comedy show but it is very respected and influential. Just to have him do a piece on the lack of ME/CFS funding in general would be huge in terms of raising awareness for our disease!
     
  2. sarah darwins

    sarah darwins I told you I was ill

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    Done.

    Brilliant idea. I love the show, which to my mind is better than the Daily Show — more serious in many ways — and with its long format features it's a perfect platform to get the word out about how underfunded and neglected are both this condition and those who suffer with it. John O would be a handy ally, to say the least.

    In case anyone's wondering, you don't have to be in the USA to register with HBO and 'like' the idea or/and reply to it.
     
  3. SB_1108

    SB_1108 Senior Member

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    BTW - I forgot to thank @Neunistiva for this idea! You are brilliant Neunistiva!!!
     
  4. ahmo

    ahmo Senior Member

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    Only 5 Likes so far:(
     
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  5. Sasha

    Sasha Fine, thank you

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    For what? The OP?

    It's a Saturday in August - I think the forum is just a bit slow at the moment.

    How about changing the title to "Action Alert: Get ME/CFS on..." to make it clear that it isn't already on? Might pull in a few more punters. :cool:
     
    alkt likes this.
  6. Neunistiva

    Neunistiva Senior Member

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    Exactly, I started the whole thing and I'm Croatian (that's in Europe). I like John Oliver's stance on everything of his I've seen so far and on top of that his shows seems to make a real difference for topics he tackles.

    I checked the other threads and most of them have 0 likes, so 5 is not so bad. I wonder if there is another way to contact the John Oliver Last Week Tonight team. They might not even read the forums...

    But long story short,

    just follow the link to HBO page, sign up using any e-mail and password from anywhere in the world, and like the posts and comment if you have the energy to do so. The more likes we have the more chance of them noticing us.
     
  7. SB_1108

    SB_1108 Senior Member

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    I am wondering the same thing... I tried to Facebook message them but that isn't an option. I wish I knew another means of contacting them. Anyone use Twitter? Can you tweet John Oliver? I must admit, I have no clue how Twitter works.
     
    Neunistiva likes this.
  8. Neunistiva

    Neunistiva Senior Member

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    That would help too, if anyone has twitter or facebook account please contact them, and then link back here so others can retweet and like
    Twitter: Last Week Tonight
    Facebook: Last Week Tonight
     
    sarah darwins likes this.
  9. beaker

    beaker ME/cfs 1986

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    liked and quick post.
    who knows ? Nothing ventured nothing gained .
     
  10. anciendaze

    anciendaze Senior Member

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    I've liked that blog entry, but I'm conflicted about the CDC funding. Look what they did with millions of dollars earmarked for this illness in the past. When they couldn't simply use the funds as a grab bag for other things they wanted to do -- as admitted in congressional testimony concerning a misspent million dollars -- they put the late W.C. Reeves in charge of spending it. He spent substantial money on looking for the disease in Wichita, Kansas and Bibb County, Georgia. As far as I know there had never been a significant number of cases reported in either place. Random telephone calls asking people if they were tired played a big role in these estimates of incidence.

    He "operationalized" the Fukuda definition in such a way that doctors using this definition identified about 38% of carefully diagnosed mental patients with major depressive disorders as having "CFS" in a study run by Leonard Jason to test this definition. This means the "operational" criteria have no value for differential diagnosis. Since the incidence of major depressive disorders is much higher than the estimates of "CFS" this meant any research cohort put together by the Reeves "operational" criteria will be dominated by depressed patients who may not have ME/CFS. Doing this without turning research over to NIMH was quite a bureaucratic maneuver, particularly since the people in charge lacked any special training in that field.

    Normally, I do not speak ill about the deceased, and whatever mistakes Reeves made are now history. What I want to emphasize is that he did not reach that position by accident, nor stay there and conduct research seeking to show that we were abused as children, without the approval of the CDC hierarchy. Simply handing funds to the same organization will not solve this problem without substantial changes to that organization.

    I also want to take a shot at SEID's new definition from the IOM committee. They were careful to avoid making this operational or committing any federal agency to any course of action. They said many things which might be interpreted in many ways. Basically, all we got from them were words. It is up to the agency which funded the committee to implement whatever results from these recommendations, or not. We have had previous bad experience in this regard, as described above.

    So, the IOM committee did not produce an operational definition. What do they suggest in their diagnostic flowchart? Sole entry criteria for diagnosis remains unexplained fatigue. There is a test for whether or not this lasts six months, which guarantees any case who comes in the door will go on the back burner (lower priority). There are decisions concerning post-exertional malaise (PEM) or post-exertional neuro-immune exhaustion (PENE). There are now some objective tests for this possible in research, if not in common practice, which are not indicated in the diagnostic flowchart. There is concern about disturbed sleep and cognitive impairment, which are also features of a number of mental illnesses. The best indication of serious impairment I can think of is orthostatic intolerance, for which there are objective tests. These are not on the flowchart either.

    That flowchart contains no recommendations for tests to rule out known physiological diseases. It is entirely dependent on the interpretation a clinician places on the terms: fatigue, PEM, disturbed sleep, cognitive impairment and orthostatic intolerance. (A quick survey of clinicians will show that the vast majority misinterpret most of these terms.) It makes no attempt to exclude primary depressive disorders. An organization with the CDC's track record on this subject could easily interpret that in a way that simply makes this disease a category of mental illness alone with no need to look for physiological abnormalities.

    The last time we went through this exercise we had 30 years of delay, obfuscation, neglect and abuse.
     
  11. sarah darwins

    sarah darwins I told you I was ill

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    I think you make some really fair points, but in the end I believe the exposure alone would be a good thing. Probably.

    Sort of in the same vein, although I love John Oliver’s show I don’t reflexively agree with all its standpoints, any more than I did with the Daily Show. I thought they were particularly one-eyed (and strangely pro-establishment/ pro-corporate intererests) when they covered the Dr Oz thing earlier in the year: http://forums.phoenixrising.me/inde...rs-call-on-columbia-univ-to-oust-dr-oz.36908/

    On that occasion I did blow the cobwebs off my Twitter account to tweet Last Week Tonight that I thought it was a case of right issue, wrong target. No response, unsurprisingly. But that one brought to mind fish, barrels and shotguns, while a much more interesting angle was being ignored.

    If they should decide to run a feature on me/cfs at any point, I hope to heaven they talk to someone like Mady Hornig for a briefing, rather than going straight to official sources.
     
  12. Neunistiva

    Neunistiva Senior Member

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    You are right that there is always the risk CDC may misspend the funds. But you know what guarantees it that they won't spend them right? Not giving them any.

    Yes, we have been neglected, abused, and basically stolen from for 30 years, and yet we are still further away now than we were 30 years ago in understanding ME/CFS.

    Cutting budget to zero is a clear message to anyone that there is NOTHING to be gained from researching ME/CFS. Nothing can be more detrimental than that.
     
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  13. Neunistiva

    Neunistiva Senior Member

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    I disagree. They were anti-Dr.Oz and in this case Dr. Oz is THE establishment. His net worth is at millions of dollars. He's not some lone poor man fighting for justice, he is a celebrity doing everything for his show to stay popular and an army of people working with him for that same cause with no care how it effects the health of his viewers. 51% of things he says are not scientifically backed up, and 15% goes AGAINST scientific evidence.

    I know we were all happy, and thus a bit biased towards hi,m when he made the show about CFS and said it's a real illness caused by XMRV virus. Yeah, except it's not. It was based on one scientific research that we all know now was contaminated.

    So ask yourself, why is it that when you know what he's talking about, you can see that he is wrong?
     
    alkt likes this.
  14. sarah darwins

    sarah darwins I told you I was ill

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    I don't really understand that comment. And I feel you rather missed the point I made (and expanded on in that other thread). But I don't want to re-run that argument here so let's move on.
     
  15. geraldt52

    geraldt52 Senior Member

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    While I can see that the politics of allowing the CDC's budget for CFS to be cut to zero is dangerous, I'd be all in favor of cutting the CDC's entire budget to zero. The thought of the entire staff of useless, freeloading, government employees looking for real work would more than offset the loss of any possible good that they might do for CFS. They haven't done anything positive in 30 years, and it's unlikely in my mind that they'll do anything positive in 30 more...no matter how much money they're given.
     
    halcyon likes this.
  16. meadowlark

    meadowlark Senior Member

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    One of the cognitive challenges I have due to ME/CFS is registering for anything on the net. (Heck, I can't even handle the quote function on Phoenix Rising.) Whatever grey cells are needed to follow instructions and correctly interpret icons are confused by it now.

    But I found registering for HBO pretty simple. (a) It's very basic, compared to some other sites and (b) I was highly motivated. Getting this subject on Last Week Tonight is an inspired idea. Really, I was thunderstruck the first time I read it. The fact that the CDC's budget fiddling and Brian Vastag's letter are recent events make the subject even hotter, from a journalist's standpoint. (I was a journalist and editor, back in the day.) Many, many thanks to Neunistiva and SB 1108 for starting this action.
     
    Last edited: Aug 9, 2015
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  17. anciendaze

    anciendaze Senior Member

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    Why not propose that congress cut out the middleman, and earmark funds for the Chronic Fatigue Initiative at Stanford? Their original private funding is close to an end, and they have accomplished quite a bit more than the CDC.
     
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  18. SB_1108

    SB_1108 Senior Member

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  19. meadowlark

    meadowlark Senior Member

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    I'm still am not able to use the quote function, but I'm replying to SB 1106 (hi!).

    I sure wish Last Week Tonight hadn't put us on that list, but the montage that contains it is a very fast and short segment of clips from the news. Oliver and his writers did not do any actual writing to diss us, and the mention of us lasts less than two seconds. I'm willing to bet that Oliver and his staff might not even recall who they put into their national holidays list unless asked to sit down and remake it. So I'm sure they can be educated on this--and easily too, as they clearly did it out of ignorance. The posts about it on the HBO site are strong and moving, and clearly show that government malfeasance is going on. If there's one thing they love on that show, it's when the government does things that are cruelly inane.
     
  20. Neunistiva

    Neunistiva Senior Member

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    It's very unfortunate that they were misinformed, but I'm not sure how it follows from that that the chances of them doing a segment on ME/CFS are lower.

    I admit chances were low to start with, but I don't see how this changes anything. For them to decide if it's worth it or not they need to look into it. If they look into it they have been supplied with links to real solid scientific evidence how horrible it is. If they don't even look into it then there's no chance no matter what their initial opinion was.

    The whole point of informing people IS to change their opinion.
     
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