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Lightning Process study underway in Norway

Discussion in 'PsychoSocial ME/CFS Research' started by Kalliope, Apr 28, 2020.

  1. strategist

    strategist Senior Member (Voting Rights)

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    You read it right.

    One ACT UP protest shut down the FDA for a day. The protesters chanted "Hey, hey, FDA, how many people have you killed today?". This resulted in at least 120 arrests.

    They also did other even worse things. It's an interesting read. When one's life depends on a competent response by health authorities to a crisis, people are willing to do transgressions they would otherwise not do. https://en.wikipedia.org/wiki/ACT_UP
     
    Last edited: Jun 30, 2020
  2. rvallee

    rvallee Senior Member (Voting Rights)

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    A good comparison is being beat up by a police officer and being charged with destruction of property... for bleeding on their uniform. It's a very specific example but it also happens to be something that happened, absurd as it sounds.

    We are perfectly in our right to complain, our lives are at stake, and people who argue that we have no right to complain at all are completely in the wrong. In fact we would complain 10x as much if we could, but we are too sick to actually do anything like that. Which makes those vile lies about us being damaging all that much worse. There is no right to hurt people, for ideology or any other reason. It is only because it has been absurdly accepted that we be deprived of the right to testify to our own life experience that this is tolerated.

    It's clear they think we are stupid and basically losers. I don't know how they will react when we recover some health, that some of us are able to wield political and legal power, against which they will be completely out of their depth, these people are not exactly the straightest tools in the shed.

    In the end it's inevitable that these people will be recognized in the same vein and as damaging as HIV deniers. They are essentially the same. It's only a matter of time, but the judgment of history will be extremely harsh. It's amazing that they can't see that but then again, if they could see anything beyond their little selves, they wouldn't be doing any of this here.
     
    alktipping, StefanE and MEMarge like this.
  3. strategist

    strategist Senior Member (Voting Rights)

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    Under normal circumstances, inappropriate behaviour would not be acceptable. The circumstances are however extraordinary. I would happily support ACT UP style protests, if we had the capacity to organize them.

    And PACE authors need accept that they can't harm patients with lies and be loved by patients at the same time. I'm honestly not sure what else they were expecting besides being called a fraud and similar things.

    In every country where the situation of patients has been described to me, the problem is more or less the same. This is a relatively common illness that destroys lives and is in the same category as other major diseases like multiple sclerosis and it is being totally mismanaged despite patients trying to communicate and improve the situation. If ordinary ways to communicate do not work, you must somehow get heard in other ways. The situation is unlikely to fix itself after several decades of malfunctioning.

    If we had proper protests, we could make much progress in a short amount of time. But we are too sick, so this remains a fantasy. Maybe there are enough patients to create the needed pressure in other ways.
     
    Last edited: Jun 30, 2020
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  4. dave30th

    dave30th Senior Member (Voting Rights)

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    As an early member of ACT-UP, I didn't consider these actions to be harassment. They were legitimate non-violent tactics, even if shocking to the establishment. As someone who has been accused of harassment in this case, I find that researchers in this field, and perhaps people in the UK overall, have defined harassment way, way down.
     
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  5. Trish

    Trish Moderator Staff Member

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    ACT-UP wasn't harassment, it was legitimate, necessary, and effective protest. And beautiful to see.
    The UK BPS researchers are way out of order describing critique of their published work as harassment.
     
    rainy, alktipping, chrisb and 13 others like this.
  6. Sean

    Sean Senior Member (Voting Rights)

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    History will show that patients have been remarkably restrained under decades of extraordinary provocation.

    We are not the ones who have anything to answer for.

    I think the most appropriate response to these claims is to demand an independent, high-level, and public formal inquiry into the real facts about those lurid, endlessly recycled, and very convenient claims.
     
    Last edited: Jul 1, 2020
    alktipping, Kalliope, Andy and 13 others like this.
  7. TiredSam

    TiredSam Moderator Staff Member

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    Surely it is us who have been harassed by psychs with no understanding of our illness advancing their careers without a thought for our well-being? They are using our illness for their own self-aggrandisement without regard to the cost which we are bearing. Having no medical answers is bad enough, but to have harm forced upon us? Surely that qualifies as harassment? If they just stood outside our houses throwing red paint and chanting "no research, no treatment" that would be one thing, but to force additional harm upon us is downright cruelty.
     
  8. Peter

    Peter Senior Member (Voting Rights)

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    Harassment? Where are the context of years and decades of quackery that patients have had to put up with? That’s just silenced. How thin skinned can you be, and should patients that have gone through much much worse year after year not speak up? There certainly are no limits when it comes to pushing pseudoscience. Done with blindfolds to the rest of the world, especially patients, and harming immensely. To portray themself as sufferers...? Actually looking at the facts, I agree that patients overall have acted in a stunningly behaved manner.
     
  9. TiredSam

    TiredSam Moderator Staff Member

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    It's not just the quackery, they have an organised and coordinated PR campaign against patients which is still ongoing. I'm sure that meets the definition of harassment.
     
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  10. Trish

    Trish Moderator Staff Member

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    It's also incitement to others to harass pwME, either by calling us malingerers or by harassing us to use harmful treatments.
     
  11. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    In addition to actively encouraging and giving governments and insurance companies excuses to use to deny much needed financial and practical assistance.
     
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  12. Kalliope

    Kalliope Senior Member (Voting Rights)

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  13. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    It looks like someone built a firewall around the information so that NAV could claim innocence.

    The above link and all the imbedded links have been saved on the internet archive. I admit I'm placing some hope there that all the information will not be lost and will be accessible for future forensic analysis.
     
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  14. Kalliope

    Kalliope Senior Member (Voting Rights)

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  15. Kalliope

    Kalliope Senior Member (Voting Rights)

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  16. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Last edited: Aug 22, 2020
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  17. Marky

    Marky Senior Member (Voting Rights)

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    Moved post
    It will be interesting to see how REK (regional ethics committee) in Norway judges the mess of an application they have received for an LP-study. I believe they did it last week, but verdict is not out yet.

    They have gotten a lot of thorough background and methodological feedback from me and other patients, so I will only totally lose hope in the system if the study goes through :facepalm: At least in its suggested form.
     
    Last edited by a moderator: Aug 28, 2020
  18. Kalliope

    Kalliope Senior Member (Voting Rights)

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  19. chrisb

    chrisb Senior Member (Voting Rights)

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    It seems they must have learned something from the UK. David Owen, an English politician, has been giving evidence to the Contaminated Blood Enquiry. He said that when he was a Minister in what was then the Department of Health ans Social Security, it was known internally as The Department of Stealth and Total Obscurity.
     
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  20. rvallee

    rvallee Senior Member (Voting Rights)

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    I am shocked, SHOCKED, that gambling is going on in here. Shocked!

    [​IMG]
     
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