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Discussion in 'General ME/CFS News' started by Cheshire, Oct 31, 2017.

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  1. erin

    erin Senior Member (Voting Rights)

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    I felt the film would have an impact on ordinary, average people about ME. It is slightly glamorous; both Jen and Omar very good looking, highly educated and intelligent people who are very much in love. They are the not average, Jen could definitely be a hugely successful at her job but she's stuck with this terrible condition which is not just a bit of tiredness. They can't have children and "normal" life again because of this illness. Thank god they are well off. Because, financial problem is the last thing that the average, mainstream people want to see. It maybe is not our everyday reality but it catches the hearts of ordinary westerners heart. This is what we need.

    I don't mean at all it is not real, this really is Jen Brea's situation; she's put all of she's got into this. She's done a great job.
     
  2. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    @Graham @MEMarge

    It was good to meet you this afternoon in Crowborough. I recognised Graham immediately, and MeMarge almost as quickly. I was sorry not to have a chance to speak to you afterwards: would have liked to stay for the Q and A, and tea and cakes, but I was crashed. It was a fair distance to come and I had almost forgotten how tiring sitting up is. Very glad to put my feet up on a chair but I had to get home.

    Just to say how well organised and friendly the event was too. The venue was full and Jen Brea had given us a good film. Would have liked to discuss afterwards. Hope to bump into you both while around here.
     
  3. Graham

    Graham Senior Member (Voting Rights)

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    Hi @Binkie4 and @MEMarge

    I'm glad you both made it, and I'm sorry we didn't get much of a chance to chat. Strange how you recognised me so easily. Was it the glasses? Was it the accent? Or was it the gleaming, radiating red and shiny dome?

    I must admit I was running on fumes, so if I was a bit incoherent, please accept my apologies.

    Our group is a very friendly one, and the audience were very supportive and friendly.

    The response in the Q&A session was very good: a friend recorded it, and I'm either going to work on the sound quality or produce a transcript for those that want it. There was a nurse (children's ward) there who was really annoyed that her training had taught her nothing about such a major illness, and she was going to go back and try to get everyone to look at the shortened version when it comes out.

    It's a shame though that so few GPs and medical folk made it. We had sent out an offer of free tickets to all the GP surgeries for miles around, but there were no takers.

    The film does leave many aspects untouched, but then, it isn't really aimed at us. What it does, very effectively, is really ram home to people who know nothing about it just how terrible this illness is, and there was a real sense of anger afterwards in the audience that so little has been done. It does show very clearly that we can operate in short bursts, and look utterly normal, then it shows the terrible price to pay if we do too much.

    When you say "while around here" do you mean that you are still in the area? If so it would be nice to meet up.
     
  4. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    @Graham

    I meant on the forum because I don't live in Sussex. We came quite a way to see the film. For some reason I wanted to be part of a group at a screening. Thank you for organising the event. Must have taken a lot of energy. We so wished to stay longer for the Q and A- if you have the energy, would be glad to read a transcript.

    I am now in bed and crashed.

    There was a part in the film where this was addressed. Omar said something to the effect that everything that made Jen 'Jen' had to be paid for. That is so true. In many ways it might be easier to never leave the house, but I am lucky enough to have a driver and wheelchair pusher aka husband and the world still beckons so I take advantage like yesterday but there is a terrible price to pay. Cancelled a friend's visit tomorrow.
    Hope I have not offended anyone who is totally housebound. Just trying to explore the costs of this illness, the totally invisible cost, because if I am seen while out, there is nothing to see, apart now from the wheelchair. Yet life is getting smaller and smaller.

    Whizzy heads are invisible; I had to move seats to sit where I could use a spare seat to put my legs up which made it easier. Sound becoming overwhelming.

    After 10 years I am still grappling with what is it worthwhile to undertake knowing the risks. And my mood goes down when crashed. I think I need to reduce the amount I do. Recently I have felt I get over one crash only to enter another.
     
  5. MEMarge

    MEMarge Established Member (Voting Rights)

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    Hi @Binkie4 , it was great to meet you in person. I appreciate your posts to our "local" FB page. I do hope your recovery does not take too long.

    I agree that it was great to view it in a group setting.
     
    ahimsa and Binkie4 like this.
  6. MEMarge

    MEMarge Established Member (Voting Rights)

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    Hi @Graham It was great to meet you. I recognised you from your Avatar, plus you seemed to be the only man in the organising group, and I asked Lisa at the desk!

    Thanks to you and other group members, so much, for organising this sell-out viewing.

    It was great to have the Q&A. You and Karen's answers were clear and to the point. It was good to see Dr Worthley and hear his views as well.

    I passed on a Tymes Trust flyer (left over from #MillionsMissing) to the Children's Nurse and said that they were an excellent resource re children/access to education etc.

    I hope to join the group for one of their regular meetings soon, as I am less than an hour away.
     
    Last edited: Nov 13, 2017
    Graham, Sly Saint, ahimsa and 3 others like this.
  7. MEMarge

    MEMarge Established Member (Voting Rights)

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    It was an excellent film, portraying the reality of life for people with severe ME. Those who are rarely if ever seen in daily life. It was balanced with comments from US clinicians/researchers who have been involved for decades.

    My husband was very moved. (I knew far more about the film/the people involved and the stark reality of their lives.) It is our daughter who has the disease.

    I think it could be quite distressing for those who are newly diagnosed, maybe mildly affected and their families.

    The immediate response was disbelief that there was so little UK research, clinical trials etc.
    Graham was able to outline the Wessely/PACE tragedy that is the basis for the current medical narrative in the UK. This was accompanied by a few pantomime hisses from the audience.

    The 30 min version will be an excellent resource for professional education of GPs and all medical professionals and students.
     
  8. Graham

    Graham Senior Member (Voting Rights)

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    That would be great, @MEMarge

    Karen reminded me of when I was younger: ah the sad old passage of time slows us all down.

    I often say to people that Ian had ME ten years before me, and I knew he was a genuine case. He's bright and articulate, so I really thought I understood how bad it was. Then I went down with it, and it was like hitting a brick wall. Suddenly my life shattered and I only had bits to work with. I had always admired my son, but now my admiration for those people who fall ill in their youth and manage to remain sane, considerate, strong - it just went through the roof.
     
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  9. MEMarge

    MEMarge Established Member (Voting Rights)

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    I think I'll probably aim for the Dec meeting as Weds are more tricky. Hope to see you then.
    Hope you and others are recovering from organising the event. It was great.
     

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