A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Demonization of Patients continues: Nature Blog

Discussion in 'General ME/CFS News' started by Ecoclimber, Jan 25, 2016.

  1. Ecoclimber

    Ecoclimber Senior Member


    Research integrity: Don't let transparency damage science

    Transparency has hit the headlines. In the wake of evidence that many research findings are not reproducible1, the scientific community has launched initiatives to increase data sharing, transparency and open critique. As with any new development, there are unintended consequences. Many measures that can improve science2 — shared data, post-publication peer review and public engagement on social media — can be turned against scientists.

    Endless information requests, complaints to researchers' universities, online harassment, distortion of scientific findings and even threats of violence: these were all recurring experiences shared by researchers from a broad range of disciplines at a Royal Society-sponsored meeting last year that we organized to explore this topic. Orchestrated and well-funded harassment campaigns against researchers working in climate change and tobacco control are well documented3, 4. Some hard-line opponents to other research, such as that on nuclear fallout, vaccination, chronic fatigue syndrome or genetically modified organisms, although less resourced, have employed identical strategies.

    I noticed three observation:
    1. Most of the articles demonizing patinets are generated from the U.K. researchers and the news media.
    2. Under previous Candanian PM Harper Tory Government, researchers and scientists were stifled, careers were threatened if they spoke out against any scientific research that was in opposition to the Tory govt 's policy.This leads to the assumption that UK Tory govt. policy is stifling anyone that speaks out against govt. policy and rewards those that speak in favor of govt. policy especially involving the UK. austerity program.

    Does anyone want to comment on this?

    Last edited: Jan 27, 2016
  2. snowathlete


    I think ppl and charities both need to think about how we can tackle this demonizing of patients. Accusations are being made about us but apparently evidence is not required.
    Bob, MeSci, Ecoclimber and 13 others like this.
  3. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA
    We have long been easy scapegoats. Fortunately, we now have Coyne.
    alex3619, Bob, Ecoclimber and 10 others like this.
  4. Old Bones

    Old Bones Senior Member

    I guess time will tell if the long-neglected needs of Canadian ME/CFS patients will be better addressed by our new Liberal government under "Young Justin". I'm not holding my breath.
    joeblow604, Ecoclimber, Effi and 2 others like this.
  5. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA

  6. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA
    We also now have Tuller. This tweet was from a few days ago.
    Ecoclimber, Asa, moosie and 4 others like this.
  7. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Notice in the perpetual harrassment of the disabled (ME patients) we have not British, but Americans defending the British patients on Twitter, ironically, an expert in Psychology (Coyne).

    As ever we have silence from the British psychologists, far too much bother standing up for ME patients as they're 'militant armed wing' (what they call ME patients so just repeating their phrase) is far too busy slagging the ME patients off and claiming they are victims themselves. Crazy but true.

    Coyne is correct of course. Alter the word 'ME' in the press for a racial, or religious minority and people would be up in arms demanding resignations left right and centre.

    I guess the lure of £100,000 a year income when employed by the NHS, and to be adored as a genius outweighs countless doctors victims forced to live in sheltered housing, who never will live to see the day they can have their first day at work as they too disabled to even dress themselves. Ultimately, it is their fault the patients have no treatment and no one believes the patients are deserving of treatment, or face a potential fatal disease. Due to this, no appropriate level of biomedical research funding is ever given.

    What a corrupt country the UK appears to be, and God Bless America for having intellectuals like J Coyne to stand up for what he can see is wrong, and others only pretend is 'the problem' (the patients as the problem!). Imagine that, a world, in which the patients are the problem, not the infection and ensuing autoimmunity that keeps them crippled.

    Rule Britannia!
    Last edited: Jan 28, 2016
  8. *GG*

    *GG* senior member

    Concord, NH
    Climate change deniers, of course the Climate changes, just like what they call it, because lots of predictions made by them do not come true! Otherwise, ok and thanks. I remember there was consensus that the world was flat, how did that work out?

    Ecoclimber and Art Vandelay like this.
  9. Esther12

    Esther12 Senior Member

    Interesting to watch these things unfold.

    The US vs UK dynamic is interesting, and I think shows how important prejudices spread between social contacts are for PACE/CFS, and the unhealthy closeness of a lot of senior UK medical research bods.
  10. L'engle

    L'engle moogle

    I would think the BPS school is more comparable to climate change deniers while critics of PACE are more in line with those using rigorous measures to prove climate change is in fact a physical problem.
    Roseblossom, ahimsa, PennyIA and 10 others like this.
  11. Art Vandelay

    Art Vandelay Senior Member

    Adelaide, Australia
    Ahh, I had to laugh when I saw that the article was co-authored by Stephan Lewandowsky. He's so incompetent that he makes Wessley, White, Crawley et al look like Nobel Prize winners.

    Given Lewandowsky's problems with people debunking his 'studies' and having them retracted, I'm surprised that he supports (albeit limited) data sharing.

    I'm ill and am a bit busy this afternoon, so I can only provide a few examples for the moment:

    Stephan Lewandowsky ‘flees’ Australia in wake of investigations
    ... at least two, possibly more, professional complaints that are in progress against Lewdandowsy (and his sidekick, Skeptical Science’ s John Cook) at the University of Western Australia for his data fabrication and his questionable science

    Update: Lewandowsky et al paper on conspiracist ideation “provisionally removed” due to complaints
    He may talk the talk, but he doesn't walk the walk when it comes to data sharing:

    Ask Stephan Lewandowsky anything, except “please can I have that data”.
    Richard Tol asked Stephan Lewandowsky how he felt about data. Stephan Lewandowsky replied with exactly the right answer, saying it’s crucial, and “I release all relevant data immediately”. Then Barry Woods quoted the Vice Chancellor of UWA refusing to provide Lewandowsky’s data (after many requests). Apparently it is UWA practice not to release data, no matter how many times researchers politely enquire. How unfortunate for Stephan to have worked at such a backward institution?​

    and my favourite:

    I'm happy for anyone to pass this information onto James Coyne if you think he might be interested.

  12. Woolie

    Woolie Senior Member

    @Art Vandelay, thanks for posting. Just wanted to point out that these controversies you mention are all in relation to papers Lewandowsy has written on the Psychology of climate change denial. Those who are sceptical of the evidence for climate change feel his work portrays them as deficient in some way, and are very angry.

    I just want to point that out. Whatever your views on climate change, associating ourselves with the issue in any way could do us untold harm. Best to stay away from this, I think.
  13. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA

    Roseblossom, Bob, BurnA and 13 others like this.
  14. lansbergen

    lansbergen Senior Member

  15. adreno

    adreno PR activist

    Coyne coming along is really the best thing that has happened to the ME community, since as long as I can remember. It is simply amazing the way he stands up for patients, and makes himself the target instead of them. A true hero.
  16. jimells

    jimells Senior Member

    northern Maine
    Yes, it's a funny thing about the Global Warming story - if one actually looks at the evidence for Global Warming, it looks a lot like the evidence from the psychobabblers...
    Ecoclimber, *GG* and Art Vandelay like this.
  17. SilverbladeTE

    SilverbladeTE Senior Member

    Somewhere near Glasgow, Scotland
    uh, no
    it comes down to rather basic science and easily demonstrable in the home.
    The question is though: how big and how fast are we altering the climate?
    Not *IF* we are changing it.

    My entire country was once covered in forest and swamps
    Removing those, and doing so *across much of the globe* as our ancestors changed from hunter gatherers, to farmers, damn well would have changed the world's climate as the scope is so vast.
    But, they were not also burning incredible amounts of fossil fuel at the same time

    nowadays were clearing much of the remaining great forests/rainforests

    we have dammed colossal quantities of fresh water, more than flows in ALL the great rivers actually (which means that many rivers now debouche less or not at all to the ocean, look at the Colorado!)
    lakes, natural or artificial have big effect on local climate, so enough of them worldwide have global effect.

    the run offs of our sewers and farming are creating are creating enormous algal blooms (and very worryingly, many millions of tons of floating plastic garbage are acting as bases for such)

    we now know permafrost is melting and methane is escaping from it
    clathrate deposits are destabilizing

    so it is NOT the same as the "psychs"
    sure there are corrupt gits who want to make profit off "Global Warming" and they need stopped (Carbon credits, pfft! another big scam!)
    but the basic reality of it is unavoidable.
    L'engle, skipskip30 and justy like this.
  18. Gijs

    Gijs Senior Member

    PsychoQuaker scientists like Wessely, White and Chalder don't want their data shared because they have a lot to hide. They are trying red herring with climate changers but they really look like a totalitair CBT regime. They are dictators.
  19. Asa

    Asa Senior Member

    "Drapetomania was a supposed mental illness described by American physician Samuel A. Cartwright in 1851 that caused black slaves to flee captivity. Today, drapetomania is considered an example of pseudoscience... Cartwright prescribed a remedy. His feeling was that with 'proper medical advice, strictly followed, this troublesome practice that many Negroes have of running away can be almost entirely prevented.'" - Wiki


    "The book [The Protest Psychosis] focuses on exposing the trend of this hospital [1960s Ionia State Hospital] to diagnose African Americans with schizophrenia because of their civil rights ideas." -- Wiki


    (Sarcasm) Obviously through mass hysteria, such false equality beliefs have spread to peoples "with ME" as well.
    Last edited: Jan 27, 2016
    justy, Woolie, SilverbladeTE and 2 others like this.
  20. eastcoast12

    eastcoast12 Senior Member

    Long Island ny
    Actually the science is pretty strat forward. It's more like the psychobabblers who are the deniers.

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