A review of Unrest by

Clare Norton

I saw Unrest with equal measures of hope and trepidation - would it re- flect our journey with Very Severe ME? This is what I hoped for more than anything. The film is good in many ways, as well as raising aware- ness and educating it’s a call to action and has helped many M.E. patients feel heard for perhaps the 1st time ever but my feeling on leaving the screening was one of aloneness and isolation. The reason for this was that most peo- ple seem to think that this is a film that features the most severe. I had voiced my concerns prior to seeing the film in an M.E. group and been assured by someone that had viewed it that the film showed all levels of ME but focused on the Severe and Very Severe patients with ME. This raised my hopes but also added to the sense of isolation I felt on leaving the screening. Whilst I understand the film cannot represent ev- eryone and every symptom, it represents Severe ME not Very Severe ME. So my fear is that people even within the ME community will think this is as bad as it can be (and I really don’t mean to scare anyone) but this leaves the most vulner- able, most invisible Very Severe patients unheard and unseen. The film showed people with glasses on some of the time, curtains drawn some- times but mostly open, ear plugs in some of the time, noise was loud both in the room and outside the room. There were often lots of people in a room too. I was looking forward to seeing Whit- ney in the film as I am aware he is Very Severe but in my opinion the film failed to convey this. I have read from items his father has wrote that he has move- ment hypersensitivity and the number of people in his room has to be limited but in the film there were 5 other peo- ple in the room, maybe there was a specific reason for filming it this way but I felt it lost the impact of this very severe symptom. There was also no explanation of what TPN feeding is so the general viewer would not understand how serious this is and that it is not the same as tube feeding. TPN is intravenous feeding and a last resort. Tube feeding via an NG or PEG(J) would be used for someone with swallowing problems , TPN feeding is necessary when the gastro intestinal tract is not working, it requires prepara- tion in a surgically sterile environment making a hospital out of your home, it is high risk via a vein to the heart and at risk of serious infection and sepsis. There were also a lot of details left out about Karina Hansen so if you didn’t already know her story it wouldn’t have the impact it should. Again I do under- stand time constraints and the limits to including everything. The information Nancy Klimas gives is brilliant as was all the medical informa- tion, history and the feminism aspect that has never really been covered be- fore and is so important. But overall I didn’t think it had the impact of Voices from the Shadows or Jens Ted Talk which I thought was fantastic. Heartbreakingly it also appeared to put all deaths down to suicide with a list of names but no explanation given as to how they died. There was no mention of Sophia Mirza on the list or the fact that ME was cited as cause of death on her death certificate following her post mortem.  I’m trying to focus on the positive I can take from it and there are many posi- tives in that it is making a massive impact, raising awareness and doing it all at a time that seems to be just right. I get it’s Jens personal story and the love between her and Omar shines brightly and is beautiful. The scene where Omar tries to lift Jen from her wheelchair and she is in such pain was very moving and reflected how a crash can happen and the helplessness felt by carers and loved ones. I get that the film cannot cover everything but it really hit home to me that most people have no idea about Very Severe ME even sadly when they think they do.  It is a world away from Severe ME and surely the danger here is that if we think this film shows the Very Severe then the Very Severe will continue to be even more vulnerable, neglected and disbelieved. The Very Severely affected are the invisible amongst the hidden.

So please if I may I would like to

show a snapshot of what it is

like to be Very Severely

affected.

  My beautiful daughter Merryn died on 23rd May 2017 aged 21. Prior to becom- ing ill aged 15 with the Epstein Barr virus she was an outgoing, laughing, hugging bundle of energy and fun. She did not commit suicide and the irony is she wouldn’t have been physically able to even if she had wanted to which thankfully and amazingly she didn’t. She was totally bed bound and had to lie flat at all times, even a slight incline in her bed was impossible. She lay in a dark room always - light caused her ex- treme pain and worsening of symptoms. She had hyperacusis (noise hypersensi- tivity) and noise had to be controlled in her room, within our house and outside the house - if this was beyond our con- trol ear plugs and industrial strength  ear-defenders had to be worn however these caused their own problems. Noise would cause her extreme pain and myoclonic seizures. Her skin was hypersensitive to touch and even the gentlest touch could cause agony. I could stroke her cheek and head and sometimes hold her hand. We had a special sign for a cuddle as I was unable to cuddle her anymore.  A scene in the film show- ing a family member drum- ming on a patient’s stomach made us all gasp and cringe. She could only tolerate one person in her room at a time due to movement hypersensitivity which would cause confusion and increased pain. Even pic- tures on her wall and items in her room could cause confusion so had to be kept to a minimum. When the district nurses came to change her syringe drivers she had to have an eye mask on. She was in severe pain always despite being under the care of our local hos- pice at home and on 3 syringe drivers delivering extremely high doses of pain relief anti sickness and neuropathic medication 24hrs a day. Her hospice doctor said she had never witnessed such suffering and felt so helpless. She could not swallow and had Intesti- nal Failure necessitating intravenous feeding via TPN 24hrs per day. This in- volves having a Hickman line inserted through the chest to the heart to deliver nutrition intravenously. As detailed pre- viously this type of feeding is high risk with complications of severe infection, sepsis and if used in the long term liver failure. It is an absolute last resort to prevent death by malnutrition for pa- tients who cannot take food orally or via their digestive system. And pain, pain and more pain, paralysis and isola- tion, never the simple joy of food, drink or conversa- tion, never being able to give or receive a cuddle, never seeing the sun or feeling a gentle breeze on your skin just pain and darkness and repeat. Yet still hope, hope that one day there will be change and I do believe this film is part of that change. I hope I don’t sound negative or critical as we need this film out there and Jennifer Brea has been amazing in doing it but please, please remember the most vulnerable, most invisible, the Very Severe, I know they represent the smallest group within the ME population but what other illness gives the least attention to the worst affected?