Photography: August 2019 + taken by Floirin Chapling.
Three years have now passed since my neurologist diagnosed me with Chronic Fatigue Syndrome. Three years have passed since I took not being tired for granted and three years since I only got pins and needles when positioned uncomfortably. In those three years, I have flared, relapsed and found ways of managing the condition via a good family and friends support network. I’m currently experiencing my worst relapse since my original diagnosis yet my GP cannot support in a way he wants to be able to; I do not blame my GP because over the last three years I have found there to be little support or medical evidence to support or develop treatment for the condition. So expecting him to be able to treat it would be like expecting Kylie Minogue to say hey without a hey first. However, perhaps the tide is turning; this week marked an incredible breakthrough in changing the ME/CFS community which coincides with the investigations into LONG-COVID. A topic I discussed only last month, and you can read that article here.
This week, (09/11/2020) the National Institute for Health & Social Care Excellence (NICE) confirmed what ME patients have longed for. This is the removal of Gradual Exercise Therapy (GET) to be at last removed from the treatment plan for newly diagnosed patients. For those who do not have experience in chronic illness or the ignorance in treating them- you might not be familiar with what GET is. GET is the incremental increase in physical activity to gradually build up tolerance. For me and the 250,00 patients in the UK this is a breakthrough and a possible win for the community following years of believing this does more harm than good. It comes after a survey found that only 1/10 patients found it effective in treating the overwhelming symptoms of the condition. For me, I’ve always found the GET treatment plan to be insulting to someone in pain and who has a long term real condition. I’ve had experience of exposure therapy for treating my OCD like thinking patterns and the two work very almost identically. It implies that if you expose yourself to exercise gradually, you’ll eventually be able to do what you used to be able to do. In the same way, we treat someone with a phobia. A person scared of birds in my case would be gradually exposed to the bird whether that be starting at a distance to then being put into the centre of the bird enclosure. The treatment suggests that it’s something that you need to overcome, almost like your mind is holding you back. I do believe, that this once thought effective treatment was created to support the thinking in medical land that the condition is a mental health condition in favour of a long term physical invisible illness- supporting the medias description of the condition being yuppy flu.
In my early months of coming to terms with the condition I tried Cognitive Behavioural Therapy (CBT) and GET both of which are not suitable for treating the condition. In fact, everyone said that exercise would help to ease my fatigue. Once you’ve read these words, type in another tab of your browser, ‘fatigue’ and I betcha you’ll be confirmed that exercise will help. Take Joe Wicks who claims exercise fixes everything. He might be grey to look at but he’s not correct, sorry to break his curls there. Most patients were in fact athletic, busy and active people but this illness ruined the mojo so to speak. An ignorant statement for those who suffer and for those who are not able to walk, run or exercise in the way they once did. In my original treatment plan, the neurologist gave me a pack that outlined how I should build up my exercise regime. It said things like ‘if you can manage going up the stairs, then go for a walk outside. Then, try walking on a treadmill.‘ Yet this has never been an effective way of treating ME, and it actually made my symptoms worse. My outcome reflecting most of the community who thought this might be able to help or ‘cure them’. I’m sure, if It had worked, I’d be running up my road shouting to the world I’m cured. Prior to my diagnosis, I would be in the gym several times a week and I regularly went to an aerobics class. You might remember, my fitness posts this was at a time of peak fitness and at a time when my life resembled some form of normality. When I followed my neurologist’s advice and tried to go back to the class, I nearly passed out in the changing room. On another occasion, I tried power walking 15-minutes from the office to the train station, as I had been told it might make me feel better. I had always been told that exercise can reduce fatigue; again I direct you to Google and treatment for fatigue. Instead, I ended up fainting on the train due to the activity level was too much for my body.
ME can be described as having a mobile phone that only ever charges up to 80% every time. Or this is how I describe it. You then look at your phone at 3pm and wonder why it failed to last until you got home. That’s what it’s like living with ME: your energy levels are constantly depleted. Your body therefore works in overtime to try and find you a way of coping with the condition.
CBT is also an ineffective and ignorant treatment for the condition. Disclaimer, I’ve had CBT and for mental health it’s a superb treatment and effective way for dealing with unhelpful thinking patterns. I will however, discredit and continue to argue and express my distaste at recommending the tool for ME. This is because medical professionals, institutions and society fail to realise that ME has no life span and a lot of people never recover. 1/4 of patients remain severely bed or house bound. CBT bases itself on changing your thinking style and finding ways of confronting your unhelpful thoughts. For example, if you say ‘I’m ugly’ this is a thought not a fact. You have no evidence to support this thought. So, tell me how is this supposed to treat a physical condition? It’s doesn’t and fails too. It supports to the non-believers of the condition that it’s fake, not true and all in the mind of the sufferer. Perhaps, medicine want us to change our thinking styles to eventually be able to go back to running 5K without fear. Sorry to burst the bubble doc, it doesn’t work. CBT should not be recommended as a treatment but way of dealing with the mental implications of accepting a long term and life changing diagnosis. I do believe, that CBT and in the same way as GET, fail to deal with the symptoms and the sufferer. It’s unfortunately, a one size fits all approach. Like many other chronic conditions, not all sufferers are the same and most have very different symptoms which is why the charities often show the condition as an umbrella of symptoms. My symptoms are not the same as another sufferer; perhaps they suffer with light and sound sensitivity whilst I don’t but I suffer with damage to my nervous system. The one similarity and one thread that holds us together is the exhausting fatigue where sometimes talking and just being awake is too much.
This breakthrough the institute have made is only a stepping stone into the complex nature of the condition. I do hope the current and ongoing research into long covid and post viral fatigue will perhaps give medical professionals some foundations into understanding the complexity of ME. Understanding why some sufferers will pick up the condition following another bout of illness and why a minority have post viral fatigue and make a full recovery and can be in the minority who can say they ‘had Chronic fatigue‘. The ME club is still a club I’d like better support and treatment for; perhaps the failures in treating and supporting sufferers is our badge of honour or our initiation into the worst club ever.
To anyone suffering with ME/CFS flares and relapses like me; life is tough but you’re tougher.
On a final note, GET out. *Insert winky here*.