What I want you to understand about ME/CFS for May 12th International Awareness day

The average person is lucky enough to believe that if something goes wrong with their health there are people out there who will care for them and try to make them better. Until we know otherwise that faith makes the world a safer place for us. But what happens when you get an illness that is only partially understood and then only by the medics and scientists who have a particular interest, often because of personal experience? In the case of ME/CFS not only are you faced with the devastating loss of life as you know it due to exhaustion, pain and an inability to think or concentrate, but you are often also faced with betrayal and disbelief.

No professional likes to feel impotent, so if you don’t fit with that profession’s area of knowledge it can be comforting for them to fit you into a box that passes their responsibility on to somebody else. This is what has happened with the physical illness ME/CFS. As science is slowly discovering, it’s a ridiculously complex illness affecting many of the bodies systems. Any scientist will tell you that the more variables involved in something, the more difficult it is to identify patterns. Most studies into ME/CFS started by looking for straight forward cause and effect, so of course, the patterns weren’t perceived, or when they were, they weren’t replicated with reliability. So it was easy for the professionals that were supposed to be taking care of us to say this isn’t a medical problem it must be in your head!

Just imagine that you had a broken leg, but everyone around you refused to recognise it. Everyone except perhaps (if you were lucky) your nearest and dearest told you that you were imagining it. There was nothing that they could do for you; you should just try walking on it a little bit more every day whilst seeing a psychologist to help you stop imagining things. Wouldn’t you feel powerless? Betrayed? Beyond frustrated? And all this on top of having to deal with the pain of the leg and the loss of all the things that used to make life worthwhile that you can’t do with a broken leg. And there’s little hope that anybody is going to help you fix your leg, little hope that you’ll ever be able to return to your normal life.

This is what hundreds of thousands of people in the UK have had to deal with (an estimated 17 million worldwide).

Coming to terms with an illness that has a devastating effect on your ability to live your live is hard even when you are believed, respected and cared for. There is an emotional and psychological impact to loss and psychological help can help you deal with things better, manage the illness better and can lead to a better quality of life. Psychologists jumped on these successes with ME/CFS even though they were in no way providing a cure. The fact that people could get a little better with psychological help lead to the assumption that this illness resulted from maladaptive thoughts and behaviours in response to a previous infection or trauma that was no longer exerting a physical effect.

The biggest publically funded study in the history of British ME/CFS research aimed to prove this point and did so by moving the goal posts, manipulating data and then when questioned, refusing to publish the raw data for independent conclusions to be drawn. It may be hard to believe, but their twisted conclusions were accepted by the mainstream medical profession (I guess psychologists understand human behaviour well enough to know how to convince?).

So now a person with ME/CFS who recognises the need to deal better with their loss and find a way to come to terms with the rest of their life being difficulty different, might seek the help of a psychologist only to be overtly bullied into believing that they are not ill at all.

A young woman who is receiving helpful support in dealing with her illness is all of a sudden accused of being anorexic, accused of lying about the fact that she throws up her food(when she doesn’t) because her psychologists does not believe that she has an illness that prevents her from absorbing the nutrition from her food.

Even worse a young woman is removed from her family and locked away in an institution. Her family who love her and believe hers are refused visitation because the psychologists are convinced that the young person needs to recognise the psychological nature of her condition.

As a psychology graduate, counsellor and holistic life coach, I believe in psychology. I believe in its ability to help people to adapt to illness. I also believe in the mind body connection and that our mind has a power to help us to heal. But a psychology that is based on the assumption that no physical illness exists when it most clearly does, is not only unhelpful, it is an abuse! This abuse is what many people with a devastating illness are having to regularly deal with.

The biggest thing that you can do to help somebody with ME/CFS is believe them. We are not only worthy of belief and respect but a great deal of admiration. We face these challenges on a daily basis; we try to overcome them despite the lack of support that is taken for granted by anyone with a well-recognised illness. We support each other, campaign for more medical research and experiment with every kind of potential help that we can possibly afford. We learn how to look after ourselves and manage our energy levels; we try difficult diets, mindfulness, meditation. We learn how to deal with loss, and find new ways of being happy despite limited energy and ability. And we do all this with a fraction of the physical resources of a healthy person. We are pretty amazing on the whole!