Last month I hosted a screening of the documentary, Unrest, at my local theatre, the Eastgate Theatre and Arts Centre in Peebles. If you’re new to my blog and/or are not familiar with the film you can check out the trailer Unrest Official Trailer, and you can read my previous post Post Nineteen. Time For Unrest..
When I first heard about Unrest I knew that I wanted to arrange a screening locally. This wasn’t just a film. It was the beginning of a movement. A documentary created by Jennifer Brea, that the rest of us (people with ME) could use as a tool to create change, and cure the ignorance. Unfortunately, and somewhat ironically, I realised early on that my own ME was going to prevent me from following through, and I planned to abandon the idea. But then my mum and my friend Heather stepped in and took over for me. I kind of coordinated it via email and made sure to guide them, but really they took on most of the organisation. Heather in particular took on pretty much all of the promotion, which, given most people won’t choose to see a documentary about an illness they’ve never heard of, know nothing about, or don’t think is real, was crucial. She did an incredible amount of work, and I can’t thank her enough.
It was very lucky that I felt well enough on the day to attend, especially given I was in a major crash having returned from a few days in Iceland only two and a half weeks beforehand, but the screening went really well and it was a really lovely evening. It was wonderful to see so many people there, and I was especially touched that so many of my friends attended, especially those who travelled down from Edinburgh on a work night. There had been weather warnings in place and the evening before the screening I was pretty sure none of the Edinburgh lot would make it. I felt disappointed, but of course their safety had to come first, given the risk of snow and ice on the roads. But thankfully on the day of the screening the weather cleared, the roads were black and they almost all made it. There wasn’t enough time to catch up with everyone properly, but there were lots of greetings and hugs in the foyer of the theatre in the twenty minutes before the film. Having so many friends there was really amazing. It sounds sickeningly schmaltzy, but I could feel the warmth of all the people who were there, to support me. I think that evening was genuinely the happiest I’ve felt in a really long time. For a short while I really felt like Phoebe again, and for a moment, with the buzz of the activity in the foyer, I almost forgot why we were all there. It was only when I sat down in the auditorium, and the film began to roll, that I remembered, we were all there to watch Unrest together. For the first time, my friends are going to see a glimpse of my life. It was a big deal.
Since having ME, my friends and family only see me on my better days. Only my mum has seen me at my worst, although, saying that, she hasn’t seen me when I’ve been reduced to crawling, so even she hasn’t seen me at my very worst. Having company when I’m having bad days, or even on normal days (depending on my individual symptoms), just isn’t an option. Partly because I don’t have the energy to interact with people, but mainly, I simply cannot stand to have anyone else in the same room when I’m suffering that badly. The sounds, the movement, just feeling the energy of another person there, is unbearable, and painful, in ways I just don’t know how to describe. It’s a really weird symptom of ME.
Anyway, when the film began, the enormity of the evening, and what my friends were about to see, in my presence, really hit me, and I had a bit of an emotional reaction. I had to work really hard to hold in the tears, and I’m not just talking watery eyes, I could feel my whole body starting to shake, it felt like I was beginning to hyperventilate. I closed my eyes and concentrated on my breathing. Once I gained control of myself, and had acknowledged to myself what a significant occasion the evening was, but it was all good, I was able to watch the film without any further emotional breakdowns.
After the film we had a short break and then the scary bit began, I took part in an informal Q&A session, along with Vicky, a new friend who lives locally, and mother to a teenage daughter who has severe ME. My mum had the job of running around with the microphone.
I had months to think about what I wanted to gain from the evening. There were certain topics that I really wanted to share with the audience. I just had to hope that they would ask the right questions. Luckily I managed to work these into the discussion. Mainly, I wanted to give the audience an understanding of the politics and the controversy surrounding ME research and treatment in the UK, the PACE Trial, and the upcoming review of the treatment guidelines for ME by NICE (the National Institute for Health and Care Excellence), whose guidelines are used by the NHS.
I wanted people to understand what the main, and cardinal symptom of ME is, Post Exertional Malaise. It’s not fatigue, as many people think. PEM is THE defining symptom, it’s what sets ME apart from every other fatiguing illness, without it, you don’t have ME. But the word ‘Malaise’ is awful. When I hear it, I a picture a swooning Victorian lady, lying on a day bed being fanned by her maid. Whereas the reality is brutal. I wrote about this in my last post so I won’t go on, apart from this, someone I follow on Twitter recently described PEM as meaning, ‘all systems go’, when each and every symptom flares up in a violent attack on the body. That, I can relate to.
I also wanted to challenge people’s perceptions that they have about chronic illness, especially in terms of the invisibility of ME. This is something that bothers me. People often comment on how well I look, and I get that the sentiment is coming from a kind place, and I expect they mean it as a compliment. But I find it a bit odd, and tiresome. While I know that there’s no malice behind it, it’s not something I take as a compliment. You can tell that me I look nice, if you think I do, but there’s no need to tell me that I look well, when you know that I’m not. I have an invisible illness. Phoebe with ME looks just the same as Phoebe without ME. Telling me I look well, it really doesn’t mean anything, but it does ignore the very real internal battle going on inside my malfunctioning body, and this kind of invalidates the very real everyday struggle of living with ME. It also plays into the fear (reality) that everyone with ME shares, that people don’t believe us. The fact that we, on the whole, look well, is one of the reasons why doctors dismiss us, it’s why we don’t get disability benefits, it’s why we get abuse for using a Blue Badge, it’s why we get reported to the DWP for benefit fraud, it’s why the general public believe we are either lazy, or faking it. I’ve had close friends, on seeing me wearing make-up, with freshly washed hair being chatty and smiling, insist that I must be doing better. I tell them that I’m actually not, it’s just the make-up etc. But they still insist that there must be more to it, and none of my insisting that there is in fact, not more to it, changes their minds.
I only tend to look ‘unwell’ on the bad days, when in a crash. And when I’m in a crash, you don’t see me. So on the occasions that you do see me, it’s when I’m having a better day. But don’t be mistaken, on these days I am still seriously and chronically ill. It does not mean I am recovering, it only means I am having a better day, or a better few hours. I am still, overall, just as unwell as I was during my last crash. Some people however, just don’t get it. Sometimes I feel that I should make an effort to look less well, so that I’ll meet other people’s expectations of what a chronically ill person looks like. It does frustrate me, big time. The fact that some people don’t get it, I guess it means I’m not doing as good a job of educating people as I had thought.
So one of my goals of the evening was to let people see, via Unrest, what we tend to look like during a crash. And how quickly we can go from looking well and happy, to lying on the ground in a fetal position screaming and crying out in pain. I can’t help but wonder how many people at the screening struggled to rationalise the story they saw on film, and the story I tell them, with the Phoebe they saw in front of them that evening. I had made an effort with my make-up and I wore a pretty dress (it got compliments, as did I actually). And because I was excited to be out, and to see so many friends, I’m sure I came across as happy and animated. Which I was, but I also felt unwell, because I have ME, and ME is chronic, which means I always feel unwell.
Another goal of mine, not just with the screening of Unrest but with my blog too, is to help people see ME for what it is. I dream of a world when we can tell someone we have ME, and they would immediately ‘get’ it. They would understand the gravity of what they were being told, in the same way as they would a Cancer, Alzheimer’s or Parkinson’s diagnosis. I wish that one day we will have the ‘luxury’ of just being ill, without the stigma, the disbelief, or the need to tirelessly educate everyone around us. As an example, my dad was the first person I knew who had (early onset) Alzheimer’s. Before his diagnosis I had little knowledge about Alzheimer’s, what I knew was only what I had learned in passing, I guess mainly from TV, and news articles. But, when he was diagnosed, I did know it was bad, I knew it was the worst outcome given the other possible options. I knew his life was effectively over, I knew he would never be the same, I knew he would stop being ‘dad’, I knew it meant he’d have it forever, and I knew he would die because of it, and this was before I’d done any active research on the disease.
People don’t get that about ME. Until they actively research the illness, they don’t know that it’s incurable, they don’t know that not everyone recovers, they don’t know how disabling it is, they don’t know how dangerous over-exertion is, they don’t know that we have no treatment options. They don’t know that people with ME have been found to have a lower quality of life when compared with other major illness, they don’t know that people die from it. They don’t know how common it is, there are an estimated 250,000 sufferers in the UK, in comparison, there are 100,000 people with MS, and 145,000 people with Parkinson’s. Everything they think they know, is wrong. They think we’re ‘just tired’, they think it’s psychological rather than physiological and they think we can cure it with lifestyle changes. Now I include myself in this, I wasn’t as ignorant as some/many people I’ve come across, but I had no idea when I was diagnosed how serious and life-altering it was. This needs to change. And to do this we need to help the general public gain a basic, but accurate knowledge of ME, and I think Unrest has taken us one step forward in achieving this.
Unrest has had a huge impact, for which I’m very grateful. But there’s something that has been bothering me. I’m in a few ME social media support groups and am a fairly active member of the ME Twitter community. I have heard many accounts from people with ME, all over the world, whose family and friends were sceptical of the severity, or even the existence, of their illness. It was only after watching Unrest, that they came around and believed them. This has happened with me too. I’ve had a handful of people who have basically been silent since my diagnosis three years ago, who thought that I was ‘just tired’. But then they watched Unrest, they broke their silence, and they now believe me. It’s wonderful that Unrest is having this impact. But, it does bother me that these people had to hear it from someone else (Jennifer Brea) before they would believe me. Why was I, the person who is in their life, who has ME, not a credible enough source? I cannot wrap my head around this. When someone tells me about one of their traumatic experiences, something that I’ve never been through, whether an illness, a divorce, an abusive relationship, a miscarriage, or whatever, I believe them. I don’t need proof. I don’t need to see evidence in the form of a polished, critically-acclaimed, well edited, beautifully scored award winning film. I think this points to a few things; the level of stigma that exists when it comes to ME (the whole lying, lazy, work-shy, benefit scrounging, hypochondriac, malingerer thing), the fact that this illness is so much more disabling than a healthy person could possibly conceive of, and maybe there’s some fear in there too, these people don’t want to admit that such an illness exists, because if they do, then they have to acknowledge that it could happen to them. I guess, like Jen’s doctors, some people do need to see it on video, with their own eyes, before they’ll believe it.
Anyway, the Q&A went well I thought. I was able to mention the flawed and now thoroughly debunked (but not yet retracted) PACE Trial. The only clinical trial in the UK to be funded by the DWP (Department for Work and Pensions), the people who decide if we get disability benefits or not. The reported results of the trial stated that we could be cured by CBT (Cognitive Behavioural Therapy), which would cure us of our ‘false illness beliefs’ and our ‘fear’ of exercise. Once cured of those pesky false beliefs then we should take part in GET (Graded Exercise Therapy) and hey presto we’re cured. Except we’re not, we get worse, or in some cases, we die. GET has been proven to be harmful to people with ME. The authors of the trial inflated their statistics, which was only brought to light after they were made, by court order, to release their raw data for reanalysis. They changed their definition of what constituted as ‘recovered’ midway through the trial. Participants could finish the trial worse than before they started, and were still counted as recovered. This trial is now widely known as a very good example of how not to run a clinical trial. But, and this is an absolute atrocity, the results of this trial are still used as the basis of the current treatment guidelines, not just in the UK, but worldwide. The results of this trial also influence our access to disability benefits. Claimants are often told they won’t get anything if they don’t first undertake CBT and GET. Now isn’t it interesting that this trial was funded by the DWP…
For more information about the PACE Trial you can read my previous post Post Seventeen. The PACE Trial Scandal. and Post Twenty Two. Reblog. An Interview with Dr David Tuller. .
Thankfully, although I’m not feeling optimistic about it, NICE have agreed to review their guidelines for the treatment of ME. It’s in the early stages and won’t be complete until 2020, and in the meantime they still recommend CBT and GET as treatments, which is unfortunate, and I think, criminal. After the first stakeholder meeting last month I was feeling optimistic, and I shared this at the Q&A. Professor Mark Baker, the Director of the Centre for Guidelines at NICE had said during the meeting “We are going to tear it up and start again. We won’t allow it to look the same.”, he also apparently (I read in an account by someone who was there, you can read it here) reiterated several times that the guideline was to be replaced in full. I found this reassuring. But not long after this, he pretty much backtracked on what he said at this meeting. So my optimism is now thoroughly out the window. You can find a link to the most recent update by NICE in the news section below. I have also shared a link to the communication between the UK charity, Invest in ME Research and Professor Baker.
Included in the film Unrest, is the story of Karina Hansen, a young Danish woman with ME who was forcibly removed from her home, and her parents, and institutionalised. The authorities in Denmark believe that ME is a psychological illness, and that her parents were indulging her false beliefs that she was ill, so she was removed, for ‘her own protection’. She was kept from her family for three years, when she was allowed to return home, her ME had deteriorated. You can read the full story here. What Vicky and I also wanted to convey during the Q&A was that this was not one isolated case, this also happens in the UK, to children. There are also hundreds of cases in the UK of parents being reported to social services for the mistreatment of their children, because they have refused to force them into CBT and GET, knowing it would harm them. Tymes Trust is the only national UK ME charity dedicated to children and young people with ME and their families. You can find their website here, for more information.
So those were the main things that I wanted to share during the Q&A, which I was able to. I feel it’s important that people know about the abuse, neglect and mistreatment that we, the people with ME face. I don’t think anything will change until the general public are angry enough to help us fight this. Unfortunately, because it was almost a month ago, I don’t remember all the questions that were asked, if anyone who was there would like more information about anything please do contact me. You can contact me in the comments below, or using the Contact page, or via Facebook or Twitter. I’d also really like to hear what people thought of the film, what was going through your mind on the way home, not just after this screening, but wherever you saw it. Please share in the comments! For me, the goal of the screening was to educate people, and I left the theatre that evening feeling happy and proud. But what was more valuable for me, was that moment of feeling ‘normal’, even though it was just a few minutes, I felt like pre-ME Phoebe. I was out, dressed up, in a theatre, surrounded by people, in my natural habitat. I genuinely forgot for a little bit that I had ME, and that’s never happened to me before. ME dominates every single moment of every single day, there’s usually no forgetting. Another good thing that came out of this screening was, after the fees were paid for the venue hire and the film licence etc, it turns out we made a profit! £342! We are, or already have, donated this to the UK charity, Invest In ME Research. 😀
Again I’d like to thank my mum and Heather for organising this screening. I do think it’s probably one my biggest accomplishments since having ME, that and this blog. I’m really proud that we pulled it off, and it just wouldn’t have happened without my mum or Heather. I would like to thank Vicky for joining me on the panel for the Q&A. I would also like to thank everyone at the Eastgate for their help in making this happen, the audience who came along for the film and/or the Q&A and everyone who took part in the discussion. And of course all the people who have ME who came along, you’ll all have suffered for it, I certainly have (that’s why this post is a month late), thank you so much for joining us, and well done!
One last thing. Thank you everyone who commented on and contacted me after I published my last post. As I’m sure you realised it was a tremendously difficult thing to share, to expose myself like that (if you read it you’ll know what I’m referring to). I expected silence, or maybe even judgement, so the kind and supportive comments really meant a great deal to me. Thank you.
NICE announces next steps in updating its guideline on ME/CFS.
Invest in ME Research. Communication with Professor Mark Baker, Director, Centre for Guidelines, National Institute for Health and Care Excellence (NICE), in regards to the upcoming review of the current NICE guidelines for the treatment of ME.
Invest In ME Research. Statement Following Preliminary Phase III Rituximab Clinical trial Results from Norway.
Health Rising. The Cortene Way: New Drug to Be Trialed in Chronic Fatigue Syndrome (ME/CFS) Soon.
The ME Association. A recent study from a research group at Newcastle University has found elevated BNP levels in ME/CFS associated with cardiac dysfunction.
The ME Association. Two research studies recently reported similar findings relating to the autonomic nervous system in people with ME/CFS.
The ME Association. A new study suggests that a blood test following exercise may be a very good way to differentiate between people who have ME/CFS and people who don’t.
Article about ME in the current issue of Family Doctor – a publication produced by the New York State Academy of Family Physicians. Starts on page 23.
BuzzFeed News. A senior Judge has suggested charging the government for every “no-brainer” benefits case it loses in court. Sir Ernest Ryder, senior president of tribunals, said the quality of evidence provided by the Department for Work and Pensions is so poor it would be “wholly inadmissible” in any other court.