Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Upcoming Screenings of "Unrest" in Los Angeles

Discussion in 'General ME/CFS News' started by Gingergrrl, Aug 29, 2017.

  1. fingers

    fingers Senior Member

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    Thanks to all of you for your replies. Hutan's response above is just one subjective assessment, but it is what I am fearing. If the objective is to make pwme feel that they are not alone, then that's fine. However my main agenda if I host a screening will be to engage medics, social workers, teachers etc. In my humble opinion, illness is not really something to be dramatised. We all know what the media makes of folk with ME, and that's why I think we need to be careful. I've not seen it, but I suspect it's very different to any film I might produce myself about ME. For starters, the main pic would be one of me looking perfectly normal and active - sorry to all of you who can't do that, but it's my own reality, and that of many other sufferers too I think. I watched a video of Dr.Charles Shepherd on the NHS Choices website the other day - you wouldn't know he was ill unless he said so.

    OK, maybe the film is intended to raise awareness of severe ME only. Are the objectives stated anywhere in any precise detail?
     
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  2. Binkie4

    Binkie4 Senior Member

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  3. Gingergrrl

    Gingergrrl Senior Member

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    I have not seen the film yet, so this is a more general comment, but if the main pic showed someone looking perfectly normal and active, how would this convey how disabling the illness can be to people who are not aware of it? If the goal is to make people aware that this illness can lead to cases of people using a wheelchair 24/7, not being able to bathe or feed themselves, being housebound or bed-bound, how would pics of normal & active people convey this? I am confused and just want to understand (and can comment on the actual film after I see it in 3 wks).
     
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  4. fingers

    fingers Senior Member

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    Good point.
    As I think I posted earlier, the film may be exclusively about severe ME. I don't know.
    It would be useful to know what the numbers are. I know that sounds a bit mechanical and possibly lacks sensitivity. However, I think it is important to get an accurate message across. I have personally never met anyone with severe ME, probably because folk aren't out and about when severe. All the people I know or have seen with ME appear to be 'normal and active', myself included.
    Apologies if I have offended anyone with this, not my intention.
     
  5. Joh

    Joh Inactivist

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    My post about not feeling alone etc was just focusing on one narrow aspect. It was a direct response to points Hutan raised and I tried to figure out what might prompt different perceptions. So the points I made were not at all the complete picture. I'll try to post a full review in the next days, but writing in English takes time for me. Of course my main goal and the goal of the campaign is "to engage medics, social workers, teachers etc.", too. That I and other pwme feel validated and understood is a nice byproduct, but we know what ME is. So yes, absolutely, I'm convinced the movie will engage doctors, researchers, policy makers, the public etc and that is the officially stated goal of the campaign (see e.g. kickstarter text for what's planned to achieve this goal).

    I think it's important to get across that different severity levels exist and that people can look completely normal. You can see in the movie how Jen looks completely normal and then collapses afterwards at home. But it's also important to show what the severe end of the spectrum looks like. I'm still writing on a post to you in another thread re: the severity levels in the movie (have a lot of saved drafts because I need breaks).

    The movie and the pwme shown don't dramatise, but show their everyday reality.

    I think organizing a screening is a perfect opportunity to emphasize the points we personally feel are most important. We can give an introduction, make Q and A afterwards and hand out info sheet. For example your introduction could make very clear what being mildly affected looks like and that it doesn't feel mild at all and is very far from being healthy.

    I think this is a chance for a worldwide, professionally organized campaign, that will not come back. But if you have such concerns, maybe another movie (or your movie about mild ME) and another campaign is for you. Nobody has to be involved and Unrest doesn't take other advocacy efforts away, it's just an addition, a catalyzt offered to us.
     
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  6. Joh

    Joh Inactivist

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    Hi @fingers, The official numbers for pwme are that 25% are housebound or bedbound and up to 85% can't work. ME costs the US up to 24 billion dollar per year in lost income, medical costs etc (even higher numbers exist when it's taken in account that often one family member also has to stop working). There are also numbers for prognosis, disability, poverty and adequate funding (188 million) out there. Studies show that pwme have the lowest quality of life of all chronic diseases.

    I'm a little confused that all the people you know or have seen with ME appear to be 'normal and active'. You're on this forum and most people here don't seem this way. I'm homebound for example. But you wouldn't see me because for the last 15 months being driven to the GP were my only outings. But even when I was mild, I couldn't lead anything resembling a normal life for someone in her 20ies. A diagnosis of ME requires that your ability is cut by 50%. Living with only 50% of your former energy makes a huge difference.
     
    Last edited: Sep 12, 2017
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  7. Joh

    Joh Inactivist

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    By the way, I always forget that this is a public forum and we're not having a cozy chat with 5 people. I'm not on twitter and just recently found out that even without having an account I can check hashtags like #mecfs for news on ME. So I was very surprised to see my answer to @Hutan. ;) It doesn't even make too much sense without the context (I think), so I was confused that people were interested and shared it, but still thought it's funny and mainly very nice to learn that there are people out there who care about the struggles of every single one of us.
     
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  8. fingers

    fingers Senior Member

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    Thanks for that, Joh. Those numbers could have a high degree of error, especially with diagnosis so problematic.
    How much energy is cut by is one measure, others might include how well/ill you feel. Also, 50% of not much is hardly anything, whilst 50% of a lot is still quite a bit. As a comparison, I'd say I'm at about 15-20% of pre-ME levels, but I'm still more active than most healthy people (lots of 'healthy' people seemingly choose to be inactive). I wonder if the film would bring out things like that. I guess the ideal would be that it makes the point about the large variations over time and between individuals.
     
  9. Joh

    Joh Inactivist

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    @Yep, I agree with all of your points!

    Bear in mind that the movie is only 90 minutes. :) And it's not like a lecture where you can fit endless information in. I see the movie rather as a support to generate interest in ME. The details about everything else like diagnostic criteria, history, numbers, politics, PBS, PACE, studies, biomedical research have then to be provided by advocacy work worldwide (that's also part of the campaign). I think the movie will help to make people listen to what we have to say, not that the movie itself will provide all the information.

    In my opinion Unrest gets across the main points: There's an organic disease that can get very severe, a high number of people all over the world have it, it's not new, it has been known for a long time (70 mass outbreaks over the last 100 years), this disease is highly stigmatized and neglected, patients are often psychologized, research and funding are desperately needed, patients are left to fend on their own and to do their own research/experiments and advocacy work.
    The details have then to be provided by advocacy. Hopefully Unrest might make it a little easier to be heard.
     
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  10. fingers

    fingers Senior Member

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    I liked that...shame there isn't a 'severe like' button :thumbsup::thumbsup::thumbsup:
     
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  11. Jesse2233

    Jesse2233 Senior Member

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    I'm the film Dr Dan Peterson confirms Jen is severe, and she later mentions than it's a spectrum illness with some mild patients functioning at a relatively high level
     
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  12. fingers

    fingers Senior Member

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    The problem with this 'mild, moderate, severe' classification is that it is based on physical performance.
    The 'load' of the illness is not measured, and probably can't be...unless we measure some detailed immuno-neurological activity (not an expert, so guessing here).
    If someone dies of ME, then I guess we would use Spike Milligan's epitaph 'I told you I was ill', but most of us don't, something else gets us eventually, possibly or probably some preventable disease because we find it difficult to be physically active.
    Is there a definition of 'mild, moderate, severe'? I think I've seen various scales, all based on physical performance I think, not load.
     
  13. Binkie4

    Binkie4 Senior Member

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    @fingers

    Jenny Spotila has published an account of her view of 'Unrest'. Will try and get you the link. It's quite a detailed review. I like her posts

    http://occupyme.net/
     
  14. Joh

    Joh Inactivist

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    Thanks for posting the link @Binkie4. Great review!

    The only point I had interpreted differently was the gratitude.
    I felt Jen made it clear that she wants nothing more than to be well, but that she learnt to appreciate very small things (because she had to) and is grateful for her life despite ME. There's a powerful scene when she sees nature on TV and cries because she can't be out there but then smiles because she's at least able to watch and appreciate the beautiful scenery on screen and feels grateful for that.
     
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  15. Binkie4

    Binkie4 Senior Member

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    @Joh

    Haven't yet seen the film so shouldn't comment.

    But while It's almost a cliche, I do appreciate the small things more than I ever did when I was fit and healthy.
     
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  16. Joh

    Joh Inactivist

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    So true!

    I remember now that Jen said also something like this experience of living with ME made her into the person she is and that for some parts she is grateful, like getting to know this amazing community, becoming a filmmaker etc. Maybe this is what Jenny meant.
    And I should add that as English is not my native language, it's possible that I didn't get some nuances that Jenny got. Also my memory on details of the movie is starting to fade, can't wait to watch the movie again on iTunes and this time with German subtitles. :)
     
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  17. fingers

    fingers Senior Member

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    Thanks Binkie, I've just read that.
    I was hoping for an interesting review, something that might change my mind. It hasn't.
    I'm trying to put myself in the shoes of a healthworker, a doctor, a psychiatrist who thinks I'm afraid to be active etc., what will they think?
    They'll think....oh, here we go again....ME...yuppie flu, nothing wrong with me but I can't get out of bed.
    I'm sorry, but this is the reality.

    What about a different approach?
    What about this person who is still fit and active? Why are they banging on about ME? What is in it for them? Why would they want to tell the world that they feel crap when actually they seem to be pretty happy and successful?

    OK, at risk of sounding a bit smug, I've never been disbelieved. My employer when I was first ill allowed me to work half-time on full pay for a whole year until I was able to get back to full time. I've had 5 or 6 experienced doctors confirm my diagnosis...only one (the second I saw I think, and who did extensive tests, with only toxoplasmosis coming out positive) thought that my physical and mental function was just too good for me to have ME. Well, thanks for the compliment, doc.

    I'm just not convinced that this marketing effort is going to achieve the results we want.
    I suppose it's over to me then to do my thing and do it better...

    PS downtime today, bad sore throat, feeling really crap, have had to back off. Nothing like severe still, counting blessings every day. Maybe folk who suffer and understand, but are not severe, are in a good place to advocate?
     
  18. fingers

    fingers Senior Member

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    Absoluckingfutely!
     
  19. Binkie4

    Binkie4 Senior Member

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    @fingers
    "OK, at risk of sounding a bit smug, I've never been disbelieved. My employer when I was first ill allowed me to work half-time on full pay for a whole year until I was able to get back to full time. I've had 5 or 6 experienced doctors confirm my diagnosis...only one (the second I saw I think, and who did extensive tests, with only toxoplasmosis coming out positive) thought that my physical and mental function was just too good for me to have ME. Well, thanks for the compliment, doc."

    Just to go off at a tangent a bit.
    Where have you found all these 5/6/7 doctors in s.west England to confirm your diagnosis? Were you able to do this on NHS?

    I live on outskirts of London, and in my area, we get an immunologist just to confirm the diagnosis, then nurses and OTs.

    I am old so am developing comorbidities. Extremely hard to get GP to refer on to a Consultant for other things and the doctors I've seen deny the existence of ME. They are querying the existence of the condition, not whether I have it. So I think Jen Brea's film might have some impact, from what I've read.

    And yes, as you say, if you'd like a different approach, get filming!!
     
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  20. fingers

    fingers Senior Member

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    Hi Binkie
    Sorry to hear that it's so difficult for you. I can't believe that medics (near London!!!???) are still not recognising this widespread devastating illness. I'd be delighted to talk to any of them if you can put me in touch.
    Yes, two doctors privately, the rest on NHS. Cornwall is probably the best in this respect, but the ME service follows NICE unfortunately...what a waste of resources.

    Film? Now you have got me thinking...thank you.
     

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