10th October, was World Mental Health Day. To mark the day, I decided to write about depression in M.E. and other physical long term conditions.
The theme for this year’s World Mental Health Day is dignity in mental health. The World Health Organisation (WHO), mental health charities, and individuals, will be raising awareness of mental health and what can be done to ensure that people with mental health conditions can continue to live with dignity. Human rights oriented policy and law, training of health professionals, respect for informed consent to treatment, inclusion in decision-making processes, and public information campaigns will hopefully all help to reduce the stigma and poor treatment of people with mental health problems.
I’ve taken part in mental health anti-stigma campaigns for around 15 years because originally my diagnosis was depression and anxiety. Unfortunately, this turned out not to be my primary diagnosis and with this current relapse to severe M.E., it became obvious to my health professionals I have M.E. When looking back through my history with them, the symptoms of M.E. started when I was 15 years old.
Although myalgic encephalomyelitis (M.E.) is a chronic neurological condition, it’s understandable that people with long term physical conditions are prone to depression and other mental health problems. In Out of sight, out of mind, I wrote about how we lose everything that makes us a person. The onset of the condition, or a sudden relapse, causes a complete change in personal circumstances. Our sense of self and our place in the world can be challenged by no longer being able to do all the things that define us, such as work, socialising, hobbies and interests. I have also felt that my personality has been changed by having the illness, with a lack of confidence and no energy to be the strong, assertive, bubbly, fun-to-be-around person I was before this big relapse.
In addition to this, there’s also a possibility that M.E., or the immunological effects of it, can cause depression biologically. There has been a study suggesting that inflammation and general dysfunction of the immune system which occurs in M.E. could be responsible for mood disorders in people with the condition. The study indicates that having an infection or an autoimmune disorder increases the risk of being diagnosed later with a mood disorder by about 50%. There is a good explanation of this research on Cort Johnson’s Health Rising website.
Depression is so commonplace amongst those with physical health problems, regardless of the condition. Many chronic physical illnesses are associated with an increased risk of both self-harm and suicide, and latest research has shown that people with M.E. are six times more likely to die of suicide than the general population.
It’s not about psychologising M.E., as this happens with other physical conditions such as fibromyalgia, arthritis, diabetes, cancer, and the list goes on. The leaflet on the right is one I picked up at the physical health psychology service to show how well recognised the emotional difficulties of living with a physical illness are.
During my training as a pharmacist, many of the repeat prescriptions for physical health problems also contained an item for depression. In fact I’d say it was so common, that roughly 1 in 3 of the prescriptions for physical health problems I dispensed also contained an item for depression.
It struck me, as I was doing some background reading about mental health stigma and dignity, that although it’s a physical condition, the stigma experienced by people with M.E. can be very similar. There’s the stigma of our condition and how it is often disbelieved, or how we are supposed to just snap out of it and get on with things. Within our online community, I often see an additional stigma (along with self-stigma) about the depression, post traumatic stress disorder due to our previous experiences, or other mental health problems, which we face as a result of our M.E. I think this additional stigma comes about because of our determination to make sure that people see M.E. as being the physical condition it is.
Since starting my work as a Volunteer Pharmacist & Research Officer for Action for M.E., many people have come to me to talk about their depression, which they feel unable to talk about openly in case their M.E. is mistaken as being “all in their head”, or that they’ll even be told by others in the community that their M.E. isn’t real. Having a mental health problem is nothing to be ashamed of. We all have mental health just as we all have physical health, and it can go wrong in the same way. I think we need to support each other rather than making people feel they can’t talk, and look out for friends who may be going through a hard time with their mental health.
So have a good world mental health day and maybe you could reach out to someone you think might be struggling. If you’re struggling yourself, please seek help either by seeing your GP or talking to another health professional you’re in contact with, or family and friends. If you don’t feel comfortable with doing that, or you’re worried about a friend and are unsure how to help them, the Mind website has emergency contacts, helplines and information. NHS Choices also has a list of helplines and websites of support organisations.
Most importantly, don’t suffer in silence – ask for help and support.
 Classified by the World Health Organisation, International Classification of Diseases 10 – G93.3
 Benros ME, Waltoft BL, Nordentoft M et al. Autoimmune diseases and severe infections as risk factors for mood disorders: a nationwide study. JAMA Psychiatry 2013;70(8):812-20. doi: 10.1001/jamapsychiatry.2013.1111
 Singhal A, Ross J, Seminog O et al. Risk of self-harm and suicide in people with specific psychiatric and physical disorders: comparisons between disorders using English national record linkage. Journal of the Royal Society of Medicine 2014;107:194-204. doi:10.1177/0141076814522033
 Roberts E, Wessley S, Chalder T et al. Mortality of people with chronic fatigue syndrome: a retrospective cohort study in England and Wales from the South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLaM BRC) Clinical Record Interactive Search (CRIS) Register. The Lancet 2016; E-pub ahead of print. doi:10.1016/S0140-6736(15)01223-4
6 thoughts on “Mental health and M.E.”
A timely, wise and compassionate piece. I’ve seen for myself how the pain of the physical illness of ME can be accompanied by the psychological distress of losing the life you once had – and perhaps being disbelieved or even neglected by those who could reasonably be expected to willingly provide care & support. All this compounded by social isolation, as work becomes impossible, and quality of life ebbs away.
It makes me desperately sad.
And coping strategies suddenly become thin on the ground with ME in the picture. How can you tell someone severely affected with ME to get the benefit of a nice long walk in the fresh air, or distract themselves with a film or a good book, when they are lying in darkness? How can they get the comfort of talking with a therapist when leaving the house and concentrating for a standard 50 minute session is out of the question? Even the friendly gesture of a bunch of flowers needs extra thought when scent may make someone even more ill.
I commend you for writing this piece.
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Thank you so much for this, Cathy. It is indeed an enormous challenge to look after our mental health when the recommended activities would cause more physical pain and illness. I have often found myself torn between looking after one aspect of my health to the detriment of the other. Things like mindfulness and crafts have helped but even these activities are impossible with the worst M.E. It becomes so complex when trying to impress upon health professionals, family and friends that M.E. isn’t “just” depression, which is certainly no walk in the park, even without other health problems to deal with. I very much see my calling as trying to do something about stigma, both of mental health and of M.E. There’s still a long way to go, of course, I’ve seen mental health become more easily talked about and less judged, in my time experiencing it over the last 25 years and surely M.E. will get to this point too. Thank you again, Cathy, your comment has really moved me and encouraged me to keep going with campaigns x
Well done for being so open about this Emily. I was hospitalised for depression several times after bad relapses earlier on in my M.E. As you note, M.E is a chronic neurological condition – given the severity and duration of the symptoms it’s not surprising people get depressed. In the past I’ve hesitated in talking about it for fear it would confuse those physicians who believe the disease should primarily be managed with (inadequate) mental health treatments. I think you’ve done a brilliant job writing about your experience as a patient and a pharmacist. Thank you for writing about these issues for World Menta Health Day!
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Thank you so much, and I also appreciate your openness. In the study which is number 3 in the references list, the paper mentioned that men with physical conditions are even more at risk, so thank you for sharing your history with us. I’m sure this will help other men to see they aren’t alone, especially if they find it difficult to talk and ask for help. Best wishes and thanks again, Emily
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Great post Emily, beautifully explains the complicated issues of physical illness often impacting on mental health, especially because of the loss of the life we all once had.
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Thank you, Ysabelle, I’m bowled over by the response I’ve had to this on social media in just a couple of hours. It must really strike a chord with people and if writing this has helped people feel less alone and more able to talk then I feel it’s so worth it to be honest and open. It’s as if we get double the illness and double the stigma with chronic illness. I feel so relieved to talk about these things and I’m so pleased that what I’ve been through and talking about it honestly helps other people. We can beat stigma by supporting each other. Best wishes and thanks again for your comment x