1. Click here Guest, to read the 'News In Brief' from w/c 10th Dec.
    Dismiss Notice

Michael Sharpe skewered by @JohntheJack on Twitter

Discussion in 'General ME/CFS News' started by Indigophoton, Apr 9, 2018.

  1. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

    Messages:
    1,590
    Likes Received:
    11,208
    I agree that there is blurring of lines when it comes to quality of research vs corruption.

    However If we are to win in terms of communication and winning popular opinion we need to be more focussed. The debates are complex. That is why depending upon audience we need to break it down to simple messages that can be rammed home at very opportunity. Having endless twitter debates and picking off individuals one by one has its place, granted but these little wins won’t change the tide on their own.

    A large part of why these so called policies win ais that they tap into established prejudices (bed blockers, lazy people sponging off the state, hypochondriacs wasting NHS time etc etc).

    We need to focus on ME as a real disease and campaign for biological markers and research equality. We also need to learn from the AIDS campaigns where they broke down stereotypes and made it clear it wasn’t just drug users and homosexuals that were at risk. Even ‘normal’ people could get it.

    We need to pick the battles and bed in for a long battle of words.

    I’m not particularly picking on your comments @Robert 1973 im sorry if you felt that way, it’s just something I’ve been picking up from debates over the last couple of years. We are easily side tracked ..the whole name debate is just a good example of how if we are unfocused, our opponents in this debate can quite easily send us off down a blind alley. So regrettably some of the harder to win battles will have to be shelved. That is not being naive it’s being practical and focusing on your objectives.

    My objectives whenever I talk to anyone about my illness is to avoid the name debate (I call it a mitochondrial disease...nobody cares enough to contradict). I also avoid the scandal of psychiatric hijacking (sounds too paranoid/ conspiracy theorist when explained quickly) and just focus on the real issues of living with this illness/condition and the fact that there is no cure and it could happen to anyone.

    I think when things are complicated people turn off ...just look at the `brexit bus’ comparison ...simple numbers and messages that appealed directly to what people cared about won the day...even if in this instance they weren’t particularly truthful

    https://www.google.co.uk/search?q=v...AUIESgB&biw=1366&bih=922#imgrc=CioV5XsAA4JmTM:

    https://www.google.co.uk/search?q=v...AUIESgB&biw=1366&bih=922#imgrc=PNW3yyayj7gjFM:
     
    Sean, Pechius, alktipping and 5 others like this.
  2. Diluted-biscuit

    Diluted-biscuit Senior Member (Voting Rights)

    Messages:
    192
    Likes Received:
    1,205
    I agree completely. All that matters to me is finding out what causes this disease and then developing a treatment.
     
    Sean, alktipping, petrichor and 3 others like this.
  3. Dr Carrot

    Dr Carrot Senior Member (Voting Rights)

    Messages:
    194
    Likes Received:
    1,869

    I think you’re right. I know I’ll probably get heat for this but I find the obsession with picking apart a trial that happened 7 years ago as a poor advocacy tool to onlookers. All of that is important but what matters is where we are now - treatment is inadequate, patients are not being listened to, and research is not being done.
     
  4. Keela Too

    Keela Too Senior Member (Voting Rights)

    Messages:
    643
    Likes Received:
    5,785
    Location:
    Sally Burch - Northern Ireland
    The PACE trial must be contested or it will continue to be used to inform NICE recommendations. Thus it is important that it becomes recognised as unreliable evidence.

    Edit to reword a bit
     
    Last edited: Jul 8, 2018
    sea, Sean, Simone and 15 others like this.
  5. Dr Carrot

    Dr Carrot Senior Member (Voting Rights)

    Messages:
    194
    Likes Received:
    1,869
    I wasn't disputing that. I was just saying that I don't think it works particularly well as an advocacy tool for those outside our little bubble.
     
  6. Keela Too

    Keela Too Senior Member (Voting Rights)

    Messages:
    643
    Likes Received:
    5,785
    Location:
    Sally Burch - Northern Ireland
    It is interesting, yet onlookers may think we have treatments, they’ll have heard all the media hype on exercise and have absorbed it as common sense. So in my view it’s still important to spell out the problems. Agree there are other things we can talk about to further our cause, but I still think picking apart bad research is vital - even when explaining our situation to those who know little.
     
    sea, Chezboo, Robert 1973 and 12 others like this.
  7. Indigophoton

    Indigophoton Senior Member (Voting Rights)

    Messages:
    848
    Likes Received:
    9,608
    Location:
    UK
  8. TiredSam

    TiredSam Moderator Staff Member

    Messages:
    4,619
    Likes Received:
    21,365
    So after banning himself from twitter for a week MS can't resist having a little peek on Sunday afternoon. Continues to struggle with the English language, as "stastician" isn't a word. Something must have annoyed him.
     
  9. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

    Messages:
    1,652
    Likes Received:
    12,601
    Stastician - the numerical study of things that do not move? E.g. Michael Sharpe's brain showed no signs of working. This was recorded by a Stastician observing his tweets.
     
    chrisb, 2kidswithME, Woolie and 6 others like this.
  10. alex3619

    alex3619 Senior Member (Voting Rights)

    Messages:
    780
    Likes Received:
    6,163
    On advocacy there are three goals I like to think about most. The first is how to accelerate research. We need to increase the rate of good research, not just any research. The second is to apply the brakes to bad research. Its being used to treat patients, and advise government and insurance companies. The third is to support patients. In this complex mess there are lots of people in need. I think these goals are all important.

    I also suspect a tendency to focus on our major issue is a function of ME. We do not multitask well, we tend to work in whatever area we know most about, and care most about. Over time advocates can broaden their scope, but to start with we do much better taking a narrow focus. That is the ME brain at work ... its not like our cognition typically has the full range of most healthy people. A corollary of this is that we tend not to see the big picture, but most healthy people struggle with the big picture anyway. However a community easily makes up for that, with many divergent considerations coming into discussion.
     
    Sean, Simone, Amw66 and 9 others like this.
  11. dave30th

    dave30th Senior Member (Voting Rights)

    Messages:
    326
    Likes Received:
    5,728
    Wow, Michael Sharpe has blocked me but is still tweeting at me. I haven't blocked him because I don't want to bother--he's free to see my tweets and I'll probably tweet my response anyway. I thought he had learned his lesson about tweeting. Poor guy. The intervention has failed.
     
    Sean, Simone, AR68 and 25 others like this.
  12. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    2,371
    Likes Received:
    19,791
    Sounds very Sharpe. Posing questions to people after having made it impossible for them to reply.
     
    Sean, Simone, Chezboo and 11 others like this.
  13. Graham

    Graham Senior Member (Voting Rights)

    Messages:
    1,624
    Likes Received:
    14,788
    Well I've done more than my fair share of that, but I do agree with you. Can I offer a perspective?

    We need the public on our side, and banging on about the PACE trial isn't going to do that at all. In that sense I totally agree with you. Most of the MPs fall into that camp as well. They need to recognize how bad the situation is for people with ME, and how little research has been carried out. This is an area that we haven't done well at: probably "Unrest" is the first major step forward, despite all the tragedies.

    But we are also treated according to NICE guidelines, public money into research is funded through the MRC and NIHR, employment benefits are difficult to get, and insurance companies try hard not to pay out. All of those either are affected by the PACE trial (and similar ones), or use the PACE trial authors as "experts". So we do need to hammer home the truth on that to those institutions, and to do so publicly.

    One of the problems we have with ME still is similar to that of HIV/AIDS in the early days: those in positions of influence or power, and those in the medical or research world, are reluctant to admit when they have been hit by it. PACE and its supporters made that so, and we have not really done much to change that. I think with HIV, getting celebrities on side, and getting big "Hollywood" films portraying it sympathetically, helped a lot with that. Megan Markle to become president of the ME 25% group????
     
  14. alex3619

    alex3619 Senior Member (Voting Rights)

    Messages:
    780
    Likes Received:
    6,163
    Sharpe? Blunte?
     
    Sean, Luther Blissett, Woolie and 4 others like this.
  15. Dr Carrot

    Dr Carrot Senior Member (Voting Rights)

    Messages:
    194
    Likes Received:
    1,869
    Great perspective, thanks for articulating that Graham! Yes I would agree with that.
     
  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    2,150
    Likes Received:
    17,820
    Just a thought, but a basic list of so called RCT's (Randomised Controlled Trial) done on ME/CFS in the last x number of years by the PACE trial authors (and other major supporters) that are based on the same 'deconditioning hypothesis' showing simply
    1) No Control Group
    2) No blinding
    3) No objective primary outcome measures
    4) Percentage of participants classed as 'recovered'.

    [Maybe a simple sentence to start to say 'there have been approximately x number of RCTs done on ME/CFS in the last x number of years' x percent on GET/CBT and only x percent on ...... (have there been any trials on anything else?)]

    might give a better idea to those who think it's only one trial (PACE) that is considered a problem.
     
    Sean, Amw66, Hutan and 7 others like this.
  17. Pechius

    Pechius Senior Member (Voting Rights)

    Messages:
    159
    Likes Received:
    930
    (bolding mine)

    Hm..

    Let's see.

    When searching for "ME/CFS" on Pubmed I get 7874 hits
    Only 231 hits for "CFS/ME".

    7967 for "myalgic encephalomyelitis"
    7868 for "chronic fatigue syndrome"
    5615 for "CFS"

    And as far as my personal experience goes, I have seen WAY more articles using ME/CFS, than I have CFS/ME. But that may be because unlike Wessely, I don't read psychosomatic nonsense.
     
    Last edited: Jul 9, 2018
    Lidia, Skycloud, Sly Saint and 14 others like this.
  18. Indigophoton

    Indigophoton Senior Member (Voting Rights)

    Messages:
    848
    Likes Received:
    9,608
    Location:
    UK
  19. large donner

    large donner Senior Member (Voting Rights)

    Messages:
    700
    Likes Received:
    6,113
    The PACE trial design and the changing of the protocols halfway through would fail a year 5 science test. Where does the expertise come into it, its laughable.

    This sounds like a defence of the Volkswagen emissions test scandal by claiming expertise inside Volkswagen.
     
    Solstice, Woolie, Amw66 and 11 others like this.
  20. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

    Messages:
    275
    Likes Received:
    3,549
    Location:
    UK
    I don't think you can see the Tweets of someone you've blocked. This suggests that MS is periodically unblocking people to read and reply to their Tweets and then blocking them again so that they can't read what he's written or reply. I'm starting to wonder if it may be a parody account.
     
    SallyC, Woolie, Chezboo and 8 others like this.

Share This Page