CENSSAS: Exploring Associations Between CENtral Sensitivity Syndromes and the Autism Spectrum

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Andy, Apr 4, 2019.

Tags:
  1. Andy

    Andy Committee Member

    Messages:
    22,305
    Location:
    Hampshire, UK
    Not a recommendation.
    http://www.censsas.co.uk/

    https://twitter.com/user/status/1113003135700779008

    This FM charity has 13k followers, which explains why this central sensitisation rubbish is spreading if they are willing to share it.
     
    JaneL, andypants, rvallee and 10 others like this.
  2. Milo

    Milo Senior Member (Voting Rights)

    Messages:
    2,128
    Can I be annoyed? Because i am. :banghead::mad:
    How much more bs must we be submitted to?
     
    JaneL, andypants, MEMarge and 6 others like this.
  3. Trish

    Trish Moderator Staff Member

    Messages:
    53,396
    Location:
    UK
    This makes no sense. The description of what they are trying to find out - ie the prevalence of overlap between the two categories, is an epidemiological question, so they should do a population based epidemiology study to discover population prevalence of each, and whether the overlap is higher than expected.

    Instead they ask the very people who might have diagnoses from both categories to fill in the questionnaires and tell them it's about people who fit both categories. So of course it will look like there's a high prevalence of overlap.
     
    TiredSam, JaneL, andypants and 13 others like this.
  4. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    6,734
    Location:
    UK
    'Related' how?

    The most direct relationship I see is that they don't understand them, so the relationship is 'things we don't have a clue about'.

    ...and now they are trying to add ASC (WTF is ASC, call it by the same name as everyone else does FFS) to this collection of things they don't understand, as if that will make them easier to study, to help people.

    All it would do is make them more difficult to study IMO, whilst having the unfortunate side effects of both growing their 'field' and discouraging serious people from entering it.
     
    JaneL, andypants, ukxmrv and 5 others like this.
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,964
    Location:
    London, UK
    Just when you thought nothing worse than PACE could come out of King 's.

    Why don't ethical committees stop this sort of thong from being inflicted on the public?
     
    JaneL, andypants, MEMarge and 9 others like this.
  6. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    Some mistake surely. It is not the well known autism researcher who is infamous for the thong, but his brother Sacha.
     
    JaneL, andypants, MEMarge and 6 others like this.
  7. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,515
    That,s the desired outcome.
    Gets research funded
    By promoting the bastardisation of CSS , it morphs into something else . This is a veneer of applied " biomedical". Watch it play out.

    There is a ship being steered

    Eta last sentence
     
    JaneL, andypants, MEMarge and 7 others like this.
  8. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,773
    Location:
    UK West Midlands
    It’s a terrible website not easy to use and the content doesn’t look too good couldn’t see anything about the need for research into the illness. Makes ME charities look very effective in comparison.
     
    JaneL, andypants, MEMarge and 2 others like this.
  9. Snowdrop

    Snowdrop Senior Member (Voting Rights)

    Messages:
    2,134
    Location:
    Canada
    Funded through Economic and social research council.

    This is a link to their research ethics:

    https://esrc.ukri.org/funding/guidance-for-applicants/research-ethics/

    I have no idea if this is useful. I don't have the wherewithal to look. And as it seems that ethics actually steer clear of useful guidance with regards to whether the research in question will truly be able to deliver any useful data I expect it's all above board. I suppose quality of research is not considered an issue of ethics.

    I'm so disheartened by seeing endless (admittedly often small) amounts of money dripping into an ocean of nonsense research. I wish someone on the inside of all this would get smart and get a conscience to speak up.
    It's also people's careers wasted where real contributions could have been made.
     
    JaneL, andypants, MEMarge and 3 others like this.
  10. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,919
    Location:
    Canada
    Is that the sciencey way of saying they pulled it out of their ass? Sorry, I mean derrière, if we're going with fancy language and stuff.
     
    JaneL, andypants, MEMarge and 3 others like this.
  11. large donner

    large donner Guest

    Messages:
    1,214
    This is bad both ways because they will just say that people with autism are obviously mentally ill so "CSS" symptoms aren't real. It also give them licence to ignore any of those biological issues that people with autism do get and then they'll be able to also downgrade the CSS thing to "anyone who suffers those symptoms is delusional". Bad for the biological health of autistic people and bad for everyone else. Also potentially they'll be able to get hold of the children with any so-called CSS symptoms and hide them under the banner of autistic spectrum disorder.
     
    Last edited: Apr 4, 2019
    JaneL, andypants and Wonko like this.
  12. Lisa108

    Lisa108 Senior Member (Voting Rights)

    Messages:
    739
    Location:
    Germany
    My hope is that while the BPS-crew tries to load more and more cargo onto their ship, this will only help to sink it sooner.
     
    Willow, JaneL, andypants and 5 others like this.
  13. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

    Messages:
    921
    @Andy - Health Warning ”Not a recommendation” is much appreciated!!
     
    Lisa108, JaneL, Snowdrop and 2 others like this.
  14. Andy

    Andy Committee Member

    Messages:
    22,305
    Location:
    Hampshire, UK
    I thought that wording had more decorum than "I think this is a load of b*llocks" ;)
     
    Lisa108, JaneL, andypants and 3 others like this.
  15. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

    Messages:
    921
    Whichever you pronounce.......it is due warning for me to quickly “Walk on by” instead of :banghead:
     
    JaneL, Trish, Wonko and 1 other person like this.

Share This Page