Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Article about ME/PACE for British newspaper - what do you want included?

Discussion in 'General ME/CFS News' started by harveythecat, Jun 13, 2016.

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Should the article discuss the PACE trial?

  1. Yes - in depth

    9 vote(s)
    20.0%
  2. Yes - briefly

    20 vote(s)
    44.4%
  3. No

    16 vote(s)
    35.6%
  1. harveythecat

    harveythecat

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    Hello,

    I've got an opportunity to write an article for a big British paper about whatever I want basically, to do with ME etc. There's no guarantee at this stage that they'll publish it and it'll probably be limited to 700 words.

    What one thing/statistic/fact/story etc. would you want included in an article about ME? I'm very happy to take suggestions (but please keep suggestions v short - maybe limited to one sentence, as I'm low on spoons and want to be able to get this done.)

    It will be in the society/opinion section so it doesn't have to read like a news story.

    Also - can I just double check with all the knowledgeable people on here about the latest with the ICO and QMUL? As far as I can tell, we are still waiting for the verdict? Please can someone confirm that for me.

    Thanks
     
  2. user9876

    user9876 Senior Member

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    Yes we are still waiting for the verdict.
     
  3. Esther12

    Esther12 Senior Member

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    I think that the fight against the release of information could be a good hook? Patients leading the charge against bad science? The spin of the recovery claims & problems with relying on self-report outcomes in an unblinded trial?

    Hard to do anything concise on PACE.
     
  4. harveythecat

    harveythecat

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    yes @Esther12 - that's exactly it - hard to write something concise and easily understandable to public! I would like to use the fight for data release as a hook.
     
  5. Comet

    Comet I'm Not Imaginary

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    Do you have to include PACE? Why give them any sort of press at all?

    Is it possible to focus on all of the wonderful reasearch/conferences/protests going on now? :woot: :woot:

    IMO focusing on scientific reasearch makes our disease seem real.

    Why even bring PACE into the mix?
     
    Last edited: Jun 13, 2016
  6. Comet

    Comet I'm Not Imaginary

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    We must have cross posted. Didn't see this when I wrote my above post. Never mind! :oops:
     
  7. A.B.

    A.B. Senior Member

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    Why not both the recent positive developments and the story about patients fighting against bad science?

    Something like this

    Hope for ME/CFS patients
    - IOM report vindicates patients who always said this was a debilitating physical illness, calls for more research.
    - Academics agree with patiens, PACE trial (representing psychosocial paradigmn to ME/CFS) fatally flawed. This approach is a failure.
    - NIH answers the call, aims for $250 million funding (41 fold increase) and centers of excellence.
    - ME/CFS on the way to become main stream research, researchers presented findings during IIME conference. Rituximab results are particularly promising.
    - Patients finally have realistic hope.
     
    Last edited: Jun 13, 2016
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  8. Jonathan Edwards

    Jonathan Edwards Senior Member

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    @harveythecat

    I am thinking something like this - just as a quick thought.

    Whatever its cause, ME/CFS is a devastating illness and we have no clue what it is due to. Psychiatrists have claimed they have a theory that it is supported by effective treatment, but it has become clear that there is no coherent theory and the evidence on treatment is poor. The five year follow up report suggests the treatment has no noticeable effect. Fortunately, physicians in other specialities are beginning to see ME/CFS as the big new challenge in understanding mechanisms of chronic disease, whether in the brain or the immune system.
     
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  9. AndyPR

    AndyPR Tired Sam ate all the cookies!

    How about focusing on Whitney Defoe and Ron Davis initially, so you can include the biomedical research being done, then, if you wanted, link to the PACE trial via the letter that was sent requesting the data being released that was signed by a number of scientists including Ron.

    In my opinion, if we want our message to get across, we need to highlight those of us who suffer the most from ME, as one of the things that holds us back is the pwME that most people see will tend to look no different to average 'healthy' members of the population.
     
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  10. worldbackwards

    worldbackwards A unique snowflake

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    Unless you know something I don't, I suspect you mean the two and a half year follow up?
     
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  11. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I agree that the fact that it is the patients that have exposed the bad science is an important part of the story. But one could add to that that some psychiatrists actually very much agree and are asking if any of their research is up to scratch, and physicians are beginning to see just how much the patients have been duped. So you can end up with good biomedical science chasing the psychiatric moneylenders out of the Temple - so to speak.
     
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  12. Jonathan Edwards

    Jonathan Edwards Senior Member

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    You may be right but the first paper was 2011 and now we have one in 2016 - isn't it five years? No problem if not - it proves the point even more clearly.
     
  13. A.B.

    A.B. Senior Member

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    Regarding the ICO and QMUL, If you decide to write mainly about PACE, then this needs to be mentioned. If the article is just about recent developments in ME/CFS then it's a largely irrelevant, boring detail.
     
    Comet likes this.
  14. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Hi @harveythecat

    I think one important challenge with PACE is that the BPS crowd has been very successful in portraying objections as an outsider or minority opinion - they love to compare any objections to climate-change denial etc.
    So I think it would be very useful to really stress that the bulk of research and expert opinion is actually on our side at this point, for example could reference the letter from 40 experts challenging the PACE trial.

    Perhaps a quote or two from a doctor or respected researcher on what is wrong with PACE and/or the challenges of pervasive misperceptions of the illness - maybe @Jonathan Edwards would be willing?

    Thanks for doing this @harveythecat , I look forward to reading whatever you end up writing !
     
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  15. user9876

    user9876 Senior Member

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    The long term follow up that was published last year was for around 2.5 years. I believe they are collecting data (or should have collected) for a 5 year follow up. They finished collecting data for the main paper (12 month follow up in March 2010) so they should have finished collecting the 5 year follow up data some time ago.
     
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  16. user9876

    user9876 Senior Member

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    I think an important issue is that institutions like QMUL are spending public money on lawyers to suppress the data. It is not just the PACE team but I think the whole institution is acting unethically. Also Oxford University Press office was happy to spin the results of the long term follow up. And the MRC and ethics committees have failed to tackle bad scientific practices such as outcome switching.

    In other words it reflects badly not just on those involved in the PACE trial but the institutions who are supporting bad scientific practices.
     
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  17. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I think it should be emphasised that those of us suffering from the illness are mostly STUFFED because very few doctors will even take our illness seriously.

    I am feeling this particularly myself at the moment...since about a month away from (early) retirement. Now I can't even do my accounts - or anything much at all. I've struggled for so long...for what?
     
    Last edited: Jun 13, 2016
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  18. BurnA

    BurnA Senior Member

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    I know you said keep it short, sorry :)

    There have been quite a few very good articles written recently by patients and advocates.
    I'm thinking about @RivkaRivka 's article, Maureen Hansons article and just about any article about Whitney Dafoe and Ron Davis. ( amongst many others )

    If it was me, I would take a different approach, especially because this is going to be in a British publication.
    This is what I would do but I do have a controversial streak at times :

    I would mention as many names as possible who are up to their neck in this : The Lancet, Richard Horton, Oxford University, QMUL etc. Maybe even wonder why Ben Goldacre has been so silent......
    These people / institutions live by their reputation, the only way to rattle them is to go after it with gusto. My idea would be to ask enough questions that will leave readers wondering what is going on. The idea being to stimulate discussion.


    Data release is a side story, I wouldn't even go there, the general public who will be reading this have no appreciation for things like data release. ( Especially if its a society/ opinion piece ) They could interpret it to be a scientific quibble. I wouldn't even think about it. It would take too many words to explain why its important.

    Go after the easy targets and simplify it as much as possible:

    The unanswered letter to the lancet from the worlds top academics would be worthy of a mention.
    The complete lack of funding and the cost of the PACE trial might be worth a mention.

    If you are talking about PACE it can get complicated so I would avoid too many details :
    The main items would be changing the recovery definition, and undeclared conflicts of interest, although take your pick from the long list of questions by David Tuller.

    @MeSci rasies a good point - why are doctors influenced by newspaper headlines and pseudoscience when their first priority should be to speak up for their patients.

    Ultimately, this article represents you so if you are happy with it that's the main thing. ( Hopefully I'll get my chance someday ! )
     
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  19. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    People are naturally attracted to other people's narrative. Share your own.

    In doing so, you can hit all the salient points (my fav: we are healthcare system victims).
     
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  20. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I don't think they have much choice. They are spun lies at medical school, to follow on from lies and a lack of revision in the medical guidelines.
     

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