Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
Discuss the article on the Forums.

Brave Sir Prof Wessely discusses death threats 29th March 2017

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Mar 1, 2017.

  1. Barry53

    Barry53 Senior Member

    Messages:
    2,275
    Likes:
    13,671
    UK
    The Nazis also used plates, cups, etc. Not all psychiatry or psychiatrists are bad; many are very professional and effective. It is the charlatans that are the problem, and they seem to be in the ascendancy at the moment unfortunately. But I will not decry them all for the sake of the vile few.
     
  2. Barry53

    Barry53 Senior Member

    Messages:
    2,275
    Likes:
    13,671
    UK
    I can't wait ... even though I must!
     
  3. Mohawk1995

    Mohawk1995 Senior Member

    Messages:
    239
    Likes:
    483
    There are two sides of this issue. One: we really do need science to help us move forward and make discoveries that will help us in the future. Two: science even at its best is not as exact as many would believe and it rarely tells "the whole story".

    So we pursue science in medicine with a good deal of skepticism because studying the human body is infinitely complex. Far more complex than studying weather patterns/climate change and if the scientists were truly honest on that subject alone they would say "we're not completely sure that global warming isn't a natural phenomenon or that man is the root cause of it or that this is not a pattern that may turn some day to the opposite extreme/ice age".

    So what if science is not that exact? Do we give up? By no means. Do we make death threats against those who either knowingly are close minded or maybe have of good intentions? Only if we want to slow the progress!

    Having been in science and medicine for well over 30 years, I can tell that things come and go. What we once thought was the golden standard is now "so old school and obsolete". I think it is always better to allow the arrogant to hang themselves and yet at the same time fight for what is best especially for the patients.

    There has been a whole lot of "protesting" lately here in the US. What bothers me the most about it, is the aggressiveness with which people are acting (name calling, disrespect, vandalism, physical violence and criminal behavior). Not that all of the Civil Rights protests of the 50s and 60s were passive, but the great majority of them were and they not only got their point across, they allowed for a much larger group of people to support it.

    If we want more people of all walks to be on board with us in the "fight" for ME/CFS eradication, I think we would be better served by not generalizing, feeling what we feel but not always venting it in public(venting itself isn't wrong), making sure we stick to the actual points of contention like openly discussing the strengths and weaknesses of the research in detail and allowing those who are not truly on board to hang themselves. If we do that we will reserve more time and energy to focus on helping people get out of this invisible prison that is ME/CFS!
     
  4. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,677
    Likes:
    21,526
    Germany
    I recommend reading the "criticism" and "legal state" sections of the wikepedia entry for repressed memory :

    https://en.wikipedia.org/wiki/Repressed_memory

    A few excerpts:

    It's just the kind of psychobabble where you can forge a career by making up shit and not caring how many lives you ruin (innocent people falsely accused and punished, families torn apart, patients who have had memories induced by quacks suffering PTSD). Sound familiar? Just up Sir Well-sly's street, in fact he's even published on the subject:

    https://www.ncbi.nlm.nih.gov/pubmed/17327215

    Loftus looks like a jolly good egg to me for taking down such pseudo-scientific crap. I wonder how she feels about sharing a stage with Wessely? Is she aware of the extent to which he has abused ME sufferers with just the kind of pseudo-science and manipulation that the repressed memory brigade used?

    And on another point:

    After reading the above I was expecting to see Dr Nigel Speight named as a speaker. Guess they must have forgotten to invite him.
     
  5. Mohawk1995

    Mohawk1995 Senior Member

    Messages:
    239
    Likes:
    483
    There is a lot of use of the word Nazi out there. I think just as @Barry53 mentioned we need to be careful especially when comparing to a group of people who systematically intended to wipe out an entire race. That being said, what some have done in the name of science and ME/CFS has been reprehensible. Still, I prefer to spend my time supporting the positive and the people like Dr Davis at Stanford that are hard at work for the right reasons.
     
  6. Forbin

    Forbin Senior Member

    Messages:
    929
    Likes:
    3,906
    As I understand it, they will be charging £8 to get into the lecture, but the criteria for the lecture's success will be changed midway through the proceedings such that attendance will be calculated by dividing the total receipts by £5.

    :rolleyes:
     
  7. Chrisb

    Chrisb Senior Member

    Messages:
    1,049
    Likes:
    5,346
    Will the appearance of Simon Wessely and Elizabeth Loftus on a single stage under the umbrella of Sense about Science be evidence for the proposition that "there's no such thing as science"?
     
    Last edited: Mar 3, 2017
    trishrhymes likes this.
  8. Valentijn

    Valentijn WE ARE KINA

    Messages:
    14,280
    Likes:
    45,781
    If the methodology is fundamentally flawed, then it isn't science and we don't need it. These quacks should not be getting funded, or employed, or rewarded for spewing out massive quantities of ludicrously low-quality work.

    Of course we don't make death threats. We never have. Which is why Sir Wessely's pity-party at our expense is particularly egregious. His quack friends recently tried to use their narrative of threats and harassment as an excuse to not share anonymized trial data, and couldn't produce anything of substance for the court - just a newspaper article recounting their own claims. No police reports, no arrests, no trials, no convictions. And the patient comments on the relevant article rather contradicted their narrative.

    Those things happen rarely in demonstrations. But much like in the 1950's and 1960's, protestors are being characterized as violent and criminal. The general opinion of those demonizing protestors seems to be that protest should never be disruptive or even audible. It's become a matter of "take your signs, go sit down (but not in the street or even blocking sidewalk), and keep quiet."

    I'm also not sure how you think violent and criminal protesting is even vaguely relevant to ME/CFS patients objecting to bad science.
     
  9. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,677
    Likes:
    21,526
    Germany
    With recovered memories there are no abuse victims. Just patients who have had false memories induced by therapists. If your only evidence of abuse that not even the alleged victim is aware of is a "recovered memory" then look at the scientific evidence for recovered memories and decide if it's ok to ruin a family based on the word of a therapist who just likes making shit up.
     
    Last edited by a moderator: Mar 3, 2017
  10. Barry53

    Barry53 Senior Member

    Messages:
    2,275
    Likes:
    13,671
    UK
    There will always be a few who go too far, no matter what the good cause, outside of these forums very possibly.
     
  11. lilpink

    lilpink Senior Member

    Messages:
    856
    Likes:
    5,419
    UK
    I'd like to hear you ..
     
  12. Barry53

    Barry53 Senior Member

    Messages:
    2,275
    Likes:
    13,671
    UK
    Me too. The 'debate' is just a siding, the real debate is still on the main line.
     
  13. A.B.

    A.B. Senior Member

    Messages:
    3,732
    Likes:
    23,088
    I woke up at 8:20, thank you.
     
  14. Joh

    Joh Inactivist

    Messages:
    677
    Likes:
    4,283
    Germany
    @keenly, I'm too ill to read anything about repressed memories right now and can't have an opinion on that.

    @slysaint, Would really like to hear about what you wanted to tell us about the talk. :)
     
    Last edited by a moderator: Mar 3, 2017
  15. Countrygirl

    Countrygirl I'm with Cheesus

    Messages:
    2,844
    Likes:
    14,531
    UK
    Me too! @slysaint
     
    Last edited by a moderator: Mar 3, 2017
    Barry53 and Joh like this.
  16. Chrisb

    Chrisb Senior Member

    Messages:
    1,049
    Likes:
    5,346
    DESCRIPTION
    At times, talking honestly about science can be a perilous task, particularly on topics that are entangled in public dialogue and societal debate. There are countless examples of those whom, simply as a result of stating what the evidence is, have been the target of personal abuse and smear campaigns. Some have lost their jobs and a few have even received death threats.


    There are aspects of this quote from the original posting which I do not understand. Why should people have lost their jobs because of alleged personal abuse and smear campaigns? Termination of employment is in the hands of the employer and may be fair or unfair. Perhaps Sense about Science should be taking a stance against employer organisations which they think have unreasonably terminated research contracts or other employment on the basis of alleged actions by third parties. But, as they say, don't bite the hand that feeds you.

    "Countless examples"? Countless because of the high numbers ?(Go on. Try. I'm sure one of those computery things could manage it.) Or countless because specific examples have not been adequately identified for enumeration? (Tricky things are words - say one thing, imply another.)

    "Simply as a result of stating what the evidence is...." This seems to indicate a belief that evidence exists in some "vacuum" wholly separate from the hypothesis or proposition which it is intended to support or refute. It seems strange that Sense about Science should be honouring one person whose belief in "false illness beliefs" is unsupportable by evidence, and another who points out the lack of evidence to support recovered memories .But. hey, who needs consistency when you can talk about death threats?

    Sorry, the pedant in me cannot help itself. "...examples of those whom.....have been the target of...." Really!
     
    rosa, trishrhymes, Jan and 5 others like this.
  17. arewenearlythereyet

    arewenearlythereyet

    Messages:
    1,478
    Likes:
    7,561
    The thing I wonder with this increase in PR'ing Simon Wessely is ...whos paying for it? I doubt that he is running this particular propaganda campaign single handed. It seems every week this year there has been some opportunity for him to promote his point of view. Are there public funds at his disposal? Its a shame there is no right to reply on some of the accusations to challenge some of the points he's making ref death threats etc. or a vehicle to get a balance to his views.

    It just seems imbalanced when we don't have a unified voice?
     
  18. lilpink

    lilpink Senior Member

    Messages:
    856
    Likes:
    5,419
    UK
    To get back on point.. the reality is that the suggestions by SW that he had made complaints to the police have already been officially refuted, the evidence for which resides in the recent correspondence between the CoM and Hall of the BBC:

    "Correspondence between The Countess of Mar and the Director General of the BBC:

    Lady Mar:.. ''The 2016 [FOIA] Tribunal judgement highlighted that [Professor] Trudie Chalder accepted that ‘no threats had been made to either researchers or participants.”
    And - '' In the past I have enquired about threats and harassment reported to the press by eminent researchers in the CFS/ME field and have found that no such reports were made to the police.''

    http://www.meassociation.org.uk/201...r-about-the-fitnet-nhs-trial-9-december-2016/

    http://informationrights.decisions.tribunals.gov.uk//DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF"

    Unless SW can provide good evidence to the contrary then that lack of evidence rather undermines the thrust of the whole Sense about Science talk.
     
  19. lilpink

    lilpink Senior Member

    Messages:
    856
    Likes:
    5,419
    UK
    It really is up to SW to prove that he is telling the truth here.
     
  20. Mohawk1995

    Mohawk1995 Senior Member

    Messages:
    239
    Likes:
    483
    I agree completely with you on research whose methodology is flawed. What I feel I disagree with you on is that you make it sound like science with strong methodology is inerrant. Even as such it is not perfect and cannot be applied as such in all cases. That does not negate it. It simply means it takes the expertise and clinical experience to apply it in a way that is relevant to the patient. This is thinking particularly true in medicine because we are dealing with such a complex multi-system that is the human body. So even if I as a clinician apply sound and very well proven science to a patient to which it does little good I as a scientist myself need to assess potential reasons as to why that might not have worked and then apply that experience in the treatment of future patients.

    "Good doctors use both individual clinical expertise and the best available external evidence, and neither alone is enough. Without clinical expertise, practice risks becoming tyrannised by evidence, for even excellent external evidence may be inapplicable to or inappropriate for an individual patient. Without current best evidence, practice risks becoming rapidly out of date, to the detriment of patients." Sackett 1996
     
    Invisible Woman likes this.

See more popular forum discussions.

Share This Page