1. This site uses cookies. By continuing to use this site, you are agreeing to our use of cookies. Learn More.

Dare to hope... what amazingly great thing might happen in S4ME's first year?

Discussion in 'General ME/CFS News' started by Esther12, Nov 9, 2017.

  1. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    551
    Likes Received:
    3,546
    Nope, you don't get to hope for a universal cure... lets keep it plausible people!

    As someone with a mild PACE obsession, I spend much more time hoping that junk-science gets picked apart rather than that good science will lead to real progress anyway.

    I dare to hope that we will see the CFS/PACE story keep growing and growing, becoming a mainstream embarrassment for the UK science Establishment, and for significant chunks of the UK science media (although the fact the failings of the science media is a part of the story does make coverage rather more difficult). I want it more widely discussed than Wakefield/MMR!

    This is an important story, so bringing it to light would be good not just for us, but for all sorts of patients, for science, and just for people generally. That things were allowed to get so bad is a reflection of some really worrying and widespread problems that needed to be challenged.

    It was fun to be part of a few of the discussions which have helped spread some awareness of #PACEgate... but also, I'd quite like those discussions to come to a conclusion at some point soon-ish!
     
    Last edited: Nov 9, 2017
    Sid, Allele, Justy and 31 others like this.
  2. Woolie

    Woolie Senior Member (Voting Rights)

    Messages:
    557
    Likes Received:
    3,992
    Yes, by challenging psycho-BS, we help many, not just ourselves. I would like to see:

    1. An increase in the number of doctors who hesitate before suggesting some difficult symptom must be 'psychological'.

    2. An increase in scepticism about "power of mind over body" claims in general

    3. Increasing marginalisation of those who make unfalsifiable claims about psyche and illness (I'd like to see these be treated as 'alternative medicine', which is what they technically are)

    4. Tightening of standards for behavioural and psychological clinical trials

    5. And of course, greater recognition of the seriousness of ME.
     
    Sid, Justy, Andy and 33 others like this.
  3. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    349
    Likes Received:
    1,713
    Unrest seems to be raising the profile of this condition, that will hopefully continue to rise

    Research funding will hopefully continue to increase

    People will pay less attention and respect for CBT/GET

    Results from the new Rituximab study

    A possible disease mechanism?
     
    Justy, Andy, Inara and 24 others like this.
  4. Diwi9

    Diwi9 Established Member (Voting Rights)

    Messages:
    39
    Likes Received:
    297
    Hmm...I'd love for ME/CFS to get a Liz Taylor-status celebrity to make fundraising for this disease their personal mission.
     
    Justy, Andy, Inara and 7 others like this.
  5. strategist

    strategist Established Member (Voting Rights)

    Messages:
    73
    Likes Received:
    807
    I think what we can look forward to is more people in position of authority feeling safe to speak up about ME/CFS or questioning the idea of psychogenic illness. Social change in other words. The MUS/PACE forces seem to be disorganized and ineffective at the moment after being dealt such a heavy blow by successful PACE criticism, and now again by Unrest.

    This might be incremental steady change rather than some singular amazingly great event but it's still nice.

    The RituxME trial could be a major turning point, and several other lines of research could also produce a breakthrough but it's hard to predict when it will happen.
     
    Sid, Justy, Andy and 18 others like this.
  6. strategist

    strategist Established Member (Voting Rights)

    Messages:
    73
    Likes Received:
    807
    We are sadly immersed in a culture of credulousness towards psychogenic illness, and it's essentially the major medical superstition in this modern age.
     
    Sid, erin, Andy and 12 others like this.
  7. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

    Messages:
    637
    Likes Received:
    3,505
    Location:
    UK
    I would hope to see

    • NICE remove GET from the guidelines before the formal review
    • ME/CFS removed from MUS in the UK
    • The science media centre discredited in the media and called out for the sham it is
    • those that squandered public funds via the PACE trial called out for the frauds they are
    • Positive results from the ritixumab trial leading to more biologically based UK research into the disease and a subsequent drop off in funding for psychiatrists
     
    Justy, Andy, NelliePledge and 21 others like this.
  8. Valentijn

    Valentijn Moderator Staff Member

    Messages:
    1,521
    Likes Received:
    7,141
    Location:
    Netherlands
    I hope to see the relevant BPS "researchers" face professional consequences for their active campaign against ME patients. They've said some awful things about us, and implied a lot more, and I'd like to see them held accountable, preferably unable to get a job at any reputable institution, and denied funding for their quackery at every turn.
     
    MErmaid, Helen, Andy and 22 others like this.
  9. Woolie

    Woolie Senior Member (Voting Rights)

    Messages:
    557
    Likes Received:
    3,992
    Wow, now's there's a pipe dream!
     
    Andy, Luther Blissett, Barry and 9 others like this.
  10. Sean

    Sean Senior Member (Voting Rights)

    Messages:
    220
    Likes Received:
    1,533
    Year 1: Conquer the known universe.

    Years 2-Eternity: Enjoy omnipotence.

    What? Too modest?
     
    Justy, Andy, Luther Blissett and 10 others like this.
  11. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    240
    Likes Received:
    1,915
    Is it not a rule breach to question a member's smoking practices?
     
    Andy, Luther Blissett, Barry and 9 others like this.
  12. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Moderator Staff Member

    Messages:
    715
    Likes Received:
    4,667
    Critical debate of smoking practices is allowed as long as no personal attacks are made ;)
     
    Andy, Luther Blissett, Barry and 7 others like this.
  13. Trish

    Trish Senior Member (Voting Rights)

    Messages:
    856
    Likes Received:
    6,802
    Location:
    UK
    I'd like to see:

    the Rituximab trial published with clear positive outcomes

    A cheap, readily available biomedical test developed that shows up as clearly positive for everyone who has ME with PEM and not for anyone else, so we can be clearly distinguished from general fatigue.

    More drug trials of drugs using preexisting drugs that can be easily re-purposed for ME.

    Public worldwide recognition in the media and medical world that we have been gaslighted, maligned, ignored and harmed by the medical profession.

    All directive psychological 'treatments' and exercise based 'treatments' banned and the main proponents sacked and more junior practitioners re-trained.

    This last paragraph to apply to all MUS 'services' not just ME.

    ME services led instead by consultants with up to date knowledge and willingness to act as detectives in differential diagnosis of confusing cases.
     
    Helen, Trails, Justy and 19 others like this.
  14. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    694
    Likes Received:
    4,627
    Location:
    UK
    Not ME specific but the complete overhaul of all background rules/guidelines/practices with regards to welfare assessment and payments to be fair and honest, as understood by normal people.

    The research into introducing avian characteristics into the porcine group to be better funded.
     
    Allele, erin, Justy and 18 others like this.
  15. Trish

    Trish Senior Member (Voting Rights)

    Messages:
    856
    Likes Received:
    6,802
    Location:
    UK
    I love your posts, @Wonko. This one took me a while but I got there in the end.
     
    Allele, erin, Andy and 11 others like this.
  16. Samuel

    Samuel Established Member (Voting Rights)

    Messages:
    34
    Likes Received:
    156
    as science in m.e. becomes popular, there will need to be places where scientists, including graduate students, can informally talk about m.e. biomedicine and bounce ideas off us. maybe this forum will be inviting to those who want to learn deeply.

    i doubt the sum total of our relevant hxes/comorbidities, historical knowledge, and insights is captured in the published literature. [understatement.]

    dunno if this fits the forum's objectives, but it might be something to think about.
     
    Joel, Allele, Justy and 11 others like this.
  17. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    551
    Likes Received:
    3,546
    Yeah, I guess I hadn't focussed so much on what I hoped from the forum.

    re S4ME: I'd like it become a place where patients and researchers could come to test their ideas against people happy to be critical and pick apart the views of others as robustly as they can. I know I've learnt a lot from discussions with other patients, so would like to continuing that learning, keep drawing new people in, keep trying to raise the standard for patients' discussions and advocacy... until we eventually take over the world!
     
    Last edited: Nov 9, 2017
    MErmaid, markiemark, Andy and 13 others like this.
  18. Daisybell

    Daisybell Senior Member (Voting Rights)

    Messages:
    250
    Likes Received:
    1,934
    Location:
    New Zealand
    Positive results from the rituximab study and the cyclophosphamide study...
    Easier access to benefits for pwME
    Global acknowledgement of this as a physical disease

    And then I would like to win the lotto this Saturday!
     
    markiemark, Justy, Andy and 17 others like this.
  19. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    349
    Likes Received:
    1,713
    +1
    In some cases i would like to see criminal charges, in others medical licenses revoked at the very least
     
    MErmaid, Andy, Solstice and 7 others like this.
  20. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    784
    Likes Received:
    4,014
    I would like to see a world where PwME could openly discuss their ME, rather than have to consider it wiser to maybe just stay quiet about it.
     
    Joel, MErmaid, Helen and 20 others like this.

Share This Page