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Request for help with possible TV documentary on ME

Discussion in 'Advocacy Projects and Campaigns' started by Lidia Thompson, May 14, 2019.

  1. Lidia Thompson

    Lidia Thompson Established Member

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    I have a personal friend who has been making films for over 20 years. (She has both won and been nominated for many awards including numerous BAFTAS and RTS Journalism.)

    I've watched all her films and documentaries over the years. What has struck me is how respectfully and empathetically she manages to portray both the people in her films and the subjects she reports on.

    She approached me a few days ago to say that she is interested in making a film about ME.

    Unfortunately, I'm away until 24th May. But I'll be meeting up with her for a couple of hours soon after my return for a detailed discussion on the salient information.

    In the meantime, please would (some of) you be willing to provide suggestions on the way forward regarding, for example, possible content, a title, people to interview, people to feature, problems to raise, relevant statistical information etc.

    Please keep it succinct!

    I'm pretty sure her main interest will be in portraying the human angle: the suffering, the lack of medical support, problems with child protection etc.

    I will send my friend a link to this thread, so that she will be able to follow it during my absence.
     
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  2. strategist

    strategist Senior Member (Voting Rights)

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    That's a great opportunity to explain problems with the cognitive-behavioural approach to ME/CFS, the PACE trial, and how this affects patients (lack of research, patients dying from neglect, mothers being terrorized). The people to interview for this would be Keith Geragthy, @Tom Kindlon, @Jonathan Edwards, @Carolyn Wilshire, Carol Monaghan.

    You can find statistics in this report http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx

    For a researcher maybe Karl Morten or Chris Ponting or Michael van Elzakker (they all seem to be willing to get involved in this sort of thing)

    For a patient, try Emma Shorter. https://me-pedia.org/wiki/Emma_Shorter
     
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  3. Andy

    Andy Committee Member & Outreach

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    The CureME/UK ME/CFS Biobank team have been involved in documentaries before so might be worth approaching, https://cureme.lshtm.ac.uk/
     
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  4. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    What a great opportunity!

    Have you seen the library of videos on this forum? Further along the list are the "human interest" films such as "Forgotten Plague M.E. and the Future of Medicine", "Unrest", and "Voices from the Shadows". https://www.s4me.info/threads/me-videos.1030/

    I like @strategist's suggestions: include scientists, some patients, the debunking of the PACE trial; the ramifications of GET/CBT.

    I would suggest including impactful statements like Carol Monaghan's "biggest medical scandal..." and Nancy Kline's "I'ld choose HIV/AIDS over ME...."

    I wish your friend much success with this project!
     
  5. Skycloud

    Skycloud Senior Member (Voting Rights)

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    I suggest approach charity Tymes Trust for children and young people with ME and their families for issues re children and ME including education and the child protection problem.

    Tymes Trust https://www.tymestrust.org/
     
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  6. Tilly

    Tilly Senior Member (Voting Rights)

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    For me with the mum's I speak to and the children who are put through so much gaslighting, it is the recognition of PEM that we need to address.

    The silent slide from our reality to being told it is our children's behavior or our in-print of anxiety onto them. It is like slipping down the rabbit hole to a world that is so bizarre that Alice in Wonderland is normal.

    You are gagged by the closed courts of this land and demonised as a mother. I must know the procedures even though the authorities do not.

    I must understand the words and terminology but if I start the conversation with those words I am viewed with suspicion.

    I must know my place.

    I must know how to treat my child and know when he will be ready for school even thought the medical fraternity do not.

    They can infringe on my social media and twist everything I say but if I point this out I am being obstructive.

    I must not come across too anxious but if I show a lack of concern that is a problem too.

    If I look for information on my child's illness I must be trying to manipulate the medical fraternity.

    If I don't look up the illness then I am not showing enough concern.

    This all goes on in front of my son as though he is an object of no importance.

    We have to learn to play the game they have set out and it is our children learn before us in many ways.
     
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  7. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Last edited: May 14, 2019
  8. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Your friend might want to include the fact, pwME in Canada, (and maybe elsewhere with assisted dying programs), have been discussing this issue with the National ME/FM Action Network volunteers. Please see their article which includes a note about this on their Facebook page, on April 23, 2019.

    Their website is: https://www.facebook.com/MEFMActionNetwork/
     
    Last edited: May 14, 2019
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  9. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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  10. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    I would recommend interviewing @JohnTheJack, @Robert 1973, @Graham @Tom Kindlon, if they would be willing to do such an interview.

    They have had ME for a very long time and have a lot of wisdom to share about living with such an incapacitating illness with dignity. They could explain the stigma and misconceptions about ME and the many ways in which they as patients are trying to correct these.
     
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  11. Alvin

    Alvin Senior Member (Voting Rights)

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    @dave30th would also be on my recommendation list.
    I have no idea if @JenB would be interested but perhaps?
     
  12. Graham

    Graham Senior Member (Voting Rights)

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    To be honest, it's a massive task. Really she would need to get a broad overview, then decide what to build it around - patients, children, research, poor-treatment, medical attitudes, education, portrayal by the media, benefits, severe ME, etc. Any one of them could be a full video. I'm always happy to chat about options: I've chatted like that to a number of people on Skype just to get the ball rolling and point them in various directions.
     
  13. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    I think portraying the level of disability and restriction to lives...maybe start off following one persons story since diagnosis..showing the difficulties feeding yourself, washing yourself, doing anything ...showing how normal activities become impossible. The effect on relationships how it isn’t just the individual. Cut through all levels of severity show bed bound ...how difficult it is to work for the less severe , etc. Focus on dispelling the myth of fatigue explaining the symptoms show simple things like sleeping eating walking, reading...things people take for granted. Explain how disabling it is. Show the dignity of patients in the face of their loss.

    Then show how little is known but there is hope but funding is needed. Show the unfairness vs other disabling conditions.


    Or you could spend all the film on PACE and what a scandal it is and make it political.

    I agree with whoever said pick a subject ..you can’t do all of it justice.
     
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  14. ladycatlover

    ladycatlover Moderator Staff Member

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    @Tilly, your testimony reads like a very powerful poem. Incredibly powerful.

    Put together with some carefully thought out animation it would make a wonderful film.

    I'm sorry that your and your son's lives are so difficult. Such a nightmare. Sending you both my best wishes from Liverpool.
     
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  15. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Yes, pick a specific issue in this whole situation e.g. disease burden vs. Long-standing lack of funding.

    Or perhaps compare the situation with HIV/AIDS to ME - how long it took to find the cause of AIDS, and get a lot of research funding, vs. How long it has taken for the same thing with ME. Kenneth Friedman's article in Frontiers of Pediatrics (I believe). I can post the link to this later. It's on this forum in another thread.
     
    Last edited: May 15, 2019
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  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  17. Dr Carrot

    Dr Carrot Senior Member (Voting Rights)

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    I think making it about insufficient healthcare provision would work best for television, in my opinion. There are plenty of severe illnesses but it’s the medical mistreatment and lack of funding that’s the real story, for me. I also think that this is more likely to engender public action or sympathy off the back of it rather than 60-90 minutes of patients being ill, etc.
     
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  18. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Maybe worth throwing in the shopping bag study under Jo Daniels as an example of the ridiculous “research” that goes on
     
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  19. Trish

    Trish Moderator Staff Member

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    Personally I think if anyone wants to do a different kind of documentary on ME it should focus on the poor quality of the research leading to pushing of treatments that are ineffective and many find harmful, with a dig into the roots of the problem using people like Tuller, Geraghty, Wilshire, J Edwards, as sources and interviewees.

    And bringing in the gaslighting side with someone like Simon Duffy who has written about it from a social justice perspective.

    And bringing in people like Prof Ponting and Karl Morton to talk about working with patients and making nonsense of the stuff about patients being anti science.

    That could be interspersed with short clips with patients talking about their experiences, like Jessica Taylor Bearman and Tom Kindlon.

    I don't think another documentary focused entirely on sick patients will have the cut through with the public and the medical establishment - there are already a plethora of personal stories of health disasters and personal struggles with disability relating to all sorts of horrible illnesses in the media.

    We need to find a way to show ME is different because of the way it has been wrongly categorised and treated.
     
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  20. Lidia Thompson

    Lidia Thompson Established Member

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    Thank you everyone for your wonderful suggestions. It's much appreciated.
    There are indeed a lot of things to ponder.

    The two short films by Adam (links above), just blew me away! So much information in such a short space of time. Wow. I sent those to my film-maker friend straight away.

    Interestingly, my friend approached me shortly after she heard I had attended and spoke at the local Millions Missing campaign last Saturday. How do you all feel about starting things off with showing some footage from some of these events around the world and then going into more details afterwards?

    Yes/No?

    And then there's the, "Can you hear me" song, written by a patient, which might be good as the backdrop theme tune.

    I'm just brainstorming by the way. The film-maker will ultimately make these kinds of decisions! But I think it would be helpful to give some initial ideas.
     
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