I haven't seen the film. I will try to make a point of watching it eventually. I remember at the time not connecting to Jen's ME. I'm not saying she doesn't have ME, it just seemed different to my ME. I will have to refresh my memory about why it seemed different to my experience. So I wasn't interested in the film. I hope she is doing better these days. But I have to add I don't like how she has encouraged ME's to go through the neck surgery. I can't bear to think about it.
It is interesting that almost nobody came back to the thread and expressed enthusiasm about Unrest as an educational tool. I see that I said nothing. I saw an excerpt at the Houses of Parliament and then joined a panel at a full screening a few days later. I left that very uncertain that Unrest would be helpful. But, if I remember rightly, the film includes a sequence of Jessica Taylor-Bearman trying to stand. For me that was what struck home. I think if medical students and junior doctors see the film they may come away pretty confused, partly because the science coverage was poor, but also what to make of miraculous cures and relapses. Nevertheless, if they are anything like me I think J T-B might have had a lasting impact.
I also am not enthusiastic about using Unrest as a medical education tool. Without discussing the details of Jen Brea's illness, I'd just say her case seemed atypical in some ways, and therefore gives a confusing picture of ME/CFS. The few friends and family who watched it said they saw it more as a personal story than an educational film. It was a terrific achievement making the film when so ill, but there are other films that I think are better for teaching about ME/CFS.
I went to a screening in Crowborough, E Sussex, which is where I first met the group started by the amazing and lovely Graham McPhee. There was a very good Q and A afterwards. There was a community paediatric nurse from the Brighton area there, who had never heard about ME and was keen to find out more afterwards. I think it's too long to be used for medical education, possibly more use for friends/family, followed with discussions etc
She did fit the criteria for M.E when she was diagnosed. I didn't watch her film, but when she said she stopped breathing when she turned her head was when she lost me. Back in 1999/2000 I met a woman who was given an M.E diagnosis for 10 years, her symptoms were similar to mine, but looking back it seemed that vertigo/fatigue was our common symptom. The term PEM was not recognized or referred to back then and I had never heard of POTS/MCAS/EDS etc. These terms seem to have been tagged on to the M.E diagnosed via Twitter in the last few years. Anyways, my friend was later diagnosed with Chiari malformation and had surgery. She completely recovered and acknowledged she never had M.E.
Moderator note: A reminder of Rule 2: Privacy a) Careful disclosure and discussion of others' personal information Personal information of identifiable individuals (including information about contact details, health and family) may only be posted if it is either in the public domain, or the member has permission to share it, and if it is posted with care. Posts from other social media that contain personal information may be linked, but should not be screenshot or copied, so the author retains control of the information. Discussion of such personal information must be justified by wider implications relevant to the forum's purpose and should avoid speculation.
