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ME Analysis - the 3 PACE videos - factsheet.

Discussion in 'Advocacy Projects and Campaigns' started by Graham, Oct 9, 2018.

  1. Graham

    Graham Senior Member (Voting Rights)

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    The four videos in the PACE "Trilogy" are now ready! (I underestimated how much had to be put into the third video!)

    The PACE study was a flagship trial, aimed at demonstrating that cognitive behaviour therapy and graded exercise therapy could treat and even cure ME/CFS.

    These are four short videos that explain the basic faults with that, and discuss developments. They are aimed at anyone who wants a simple but accurate summary of the situation: family, friends, MPs, medical professionals, journalists: anyone really.

    Feel free to use them as you see fit.

    There are a few glitches in them: I'm going to argue that they just add to the basic charm. Either that, or the geriatric old fool who recorded them didn't notice until too late.

    The links are here:
    1. youtu.be/RqpHc_Y7awQ
    2. youtu.be/YpReMPpZhVQ
    3. youtu.be/7wu97dwVdic
    4. youtu.be/fIt6LbbwLfA

    There are subtitles to each video in English and in German (thanks to Inara), and there is a factsheet in English (https://www.s4me.info/docs/VideoFactSheet.pdf) and in German (https://www.s4me.info/docs/VideoFactsheet-german.pdf) to accompany the videos.

    If anyone wants to contact me directly, either to ask questions, or to offer me a lucrative film deal, my email address for this is me.cfs.analysis@gmail.com

    Obviously these just skim the surface of what is a complex and tangled story. In the second posting in this thread, I have added some further links that could take you further.
     
    Last edited: Nov 3, 2018
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  2. Graham

    Graham Senior Member (Voting Rights)

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  3. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Well done Graham
     
  4. Graham

    Graham Senior Member (Voting Rights)

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    The credit lies with a lot of people: some of our local ME group, and many folk here on S4ME. They have been very patient with me!
     
  5. Trish

    Trish Moderator Staff Member

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    I have just watched all 4 videos in a row. They are clear and tell a compelling story of what should have been picked up as key fatal flaws in PACE before it reached publication.

    I really like the way you demonstrate in the first video what a flawed measure the SF-36 physical functioning questionnaire is, and how easily people can be influenced to change their score.

    And I think it was a good idea to split it into 4 short videos, each taking a different aspect of the problems with PACE from the measures used, the analysis of the data to its effect on patients' lives.

    I think these videos are ideal for helping anyone who is new to ME or who misunderstands it, whether as a patient, carer, health professional or politician, to understand why the CBT/GET approach is ineffective and the treatment model is causing so much harm.

    Bravo.

    (And thanks for linking to my blog article. I hope people find it helpful.)
     
    Last edited: Nov 4, 2018
  6. Inara

    Inara Senior Member (Voting Rights)

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    Yes, that was especially impressive and vivid. It's one thing to read about it, it's another to experience and thus understand the problem.

    There's also another problem with questionnaires, and that's that the questions and answers can be interpreted, and thus also "falsey" interpreted (i.e. not in the meaning the authors meant). For me that's often a problem, I realized in the past, because I regularly take things literally (maybe the mathematician in me), especially in such "formal" settings, and in the past I didn't read such qestions with the "depression and anxiety setting" and thus misinterpreted them. But the therapist took the answers as full value, even after it was clear I misunderstood.

    Psychological questionnaires are just no good.
     
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  7. rvallee

    rvallee Senior Member (Voting Rights)

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    And wildly misleading in a fluctuating disease. The same questionnaire will lead to very different answers when taken at different times. That makes it fundamentally useless.

    I don't understand why that problem isn't raised more often. It's akin to measuring the speed of a vehicle at a random time during a trip and extrapolating for the whole duration, regardless of whether the measurement was made at a red light or on a highway.

    Especially since we know some of the "missing" data from PACE was actually patients who dropped out and that their last SF-36 was used, deliberately burying deterioration. Completely dishonest.
     
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  8. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Thanks for the videos Graham.

    I do have one question: in the fourth video you say: "worldwide, over the last 40 years the total amount of money spent on research into ME is of the order of one month of current spending into research on HIV/AIDS."

    Could you give more background on those numbers? I suspect they simply refer to NIH funding? Would probably be a very hard calculation otherwise...
     
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  9. Graham

    Graham Senior Member (Voting Rights)

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    This is an estimation, so I have had to make a lot of basic assumptions.

    I started with the money spent on HIV/AIDS by the NIH in 2017 – $3,000 million (https://report.nih.gov/categorical_spending.aspx). That comes to $250 million per month, or $58 million per week.

    The NIH have been allocating about $6 million per year on ME recently, but a chunk of that has gone missing, another chunk has been spirited away to other research areas, and it certainly doesn't stretch back over 40 years. (Even if it did, it would come to #240 million.) So what should we say to be generous? Half that? In honesty I suspect it is much less.

    Then you have to add the amount spent in the UK, both to HIV and to ME, although there isn't really much point, as the amount is relatively small, so the relationship is pretty much the same. I didn't bother with other countries.

    Again, you can add on the amount raised by patients to research ME, but it takes them ages to raise just $1 million, so again the effect on the total is small, and we also would have to add on the amount raised to research HIV, which will certainly be very much bigger.

    Overall, my estimation is that only a quarter of state-funded research is biomedical, which is why I specified a week.

    Obviously these are just rough calculations, and unreliable. But there is one aspect that I haven't mentioned - research by big pharma. Now would you like to estimate how much to add on for research around the world on HIV by big pharma? That's going to be big.

    How much research is going on in big pharma on ME? Would you need a magnifying glass?

    So, to be honest, I reckon my statement is, if anything, a large understatement, but being a mathematician, I tend to play safe.

    (This is all a bit of a glib summary. I do have spreadsheets of UK spending, and I have pored over the NIH statements. I haven't been able to find out anything about big pharma. There are two big charities that fund medical research - the Gates Foundation and Wellcome. The latter has funded a couple of small ME studies.)

    In the image below, the spending on ME/CFS had increased since 2011, and on HIV/AIDS had decreased, but you wouldn't have noticed the difference.

    The area of each bubble represents spending.

    In mathematical terms, the number of patients with MS, ME, or HIV are of the same order (they aren't the same, but comparable). Lupus is much rarer (say 24,000): diabetes much more common.

    2017.png

    That's about it, unless you want more details, or unless you can think of something I have missed. I wouldn't be surprised to discover that if we had access to the spending by big pharma, the comparison would drop to a couple of days or so.
     
  10. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Thanks for the info.

    Even though its mostly based on NIH-funding, it's indeed more likely to be an understatement than an exaggeration.

    I’m going to use that statement in advocacy, if I may…
     
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  11. Skycloud

    Skycloud Senior Member (Voting Rights)

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    Thank you Graham and all those that helped. Time to change the thread title now there are 4 videos?
     
  12. Graham

    Graham Senior Member (Voting Rights)

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    Or just leave it there as a testimony to my muddles?
     
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  13. Barry

    Barry Senior Member (Voting Rights)

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    The 3+1 PACE Videos ... just to prove you can count ;).
     
  14. Joel

    Joel Senior Member (Voting Rights)

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    Great videos Graham, [edit: and everyone else involved] they are well thought out and simple to take in. Perfect for people to discover what the issues really are.
     
    Last edited: Nov 5, 2018
  15. Graham

    Graham Senior Member (Voting Rights)

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    Thanks, but just to repeat, I had LOTS of help. It was a real effort to focus in on the key parts, and to pare everything else away. That's something I really struggle with.
     
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  16. Sean

    Sean Senior Member (Voting Rights)

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    Buy three PACE videos, and get one extra for free!
     
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  17. Skycloud

    Skycloud Senior Member (Voting Rights)

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    I don't see evidenc e of muddles :)
     
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  18. Graham

    Graham Senior Member (Voting Rights)

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    "Evidence"? You want evidence? How about I fill in a subjective questionnaire?
     
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  19. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Great work @Graham. Am pleased to see they are being tweeted.

    ETA: I ended that with a smiley face which disappeared. Just imagine a grin.
     
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  20. Andy

    Andy Committee Member & Outreach

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    https://www.facebook.com/SolveMECFSInitiative/posts/10155841696327108


    And we all know who else was mild-mannered, don't we? Yes, Hong Kong Phooey!
    raw-1350033938.gif
    Therefore, Graham must be Hong Kong Phooey?
     

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