My son has ME.
My 29 year old son has been exposed to stressful situations in his work. They were restructuring and didn't tell him if he was keeping his job for 3 months. He became lacking in energy but always going to the gym to work out or running for miles. When things were sorted at work he found it hard to work a full day. He then went on reduced days. He decided, after looking at the internet, that he had ME. The doctor referred him to an ME consultant who agreed. One visit was all it took. He now thinks he's cured. It's hard talking to him about it as he gets defensive. I don't feel his situation has been handled very well. I don't believe self diagnosis is the right approach. I also don't know how this consultant can be so sure with only one consultation. I am worried that this could be other things like stress for instance. And if it is it would be very important for my son to get help in dealing with this for life. He has been made redundant but has been glad to take time out for a few months and now is looking for a job. I want to help him if I can but feel a bit helpless.
It must be very difficult for you as a mother to want to help but not to know what to do for the best. ME, or Myalgic Encephalomyelitis (sometimes called Chronic Fatigue Syndrome), is a condition that causes long-term, often extremely disabling, tiredness. The tiredness is much more extreme than most people experience – it’s often described as both a physical and a mental overwhelming exhaustion. It isn’t made significantly better by resting and it’s not the same as the lack of motivation felt by some people who are depressed. ME can also give rise to other symptoms including poor concentration, lapses in memory and attention span, disrupted sleep, muscle and joint pains and headaches. ME should officially only be diagnosed if the symptoms are new for you and if you have had them for at least four months.
One of the problems with ME is that unlike other conditions such as, say, underactive thyroid or diabetes, there is no single test to confirm you have it. However, most specialists would want to do tests to make quite sure that there is no other condition causing the symptoms – this is because some of the symptoms are quite vague and occur in a variety of diseases. If he was able to go to the gym or run for miles I would certainly be considering other causes. Even in people with mild symptoms of ME, this level of exercise would either be impossible or cause a ‘rebound’ worsening of tiredness over the next few days.
Obviously your son is an adult and his doctor would have to respect his confidentiality. Try to keep lines of communication open with him and make him aware that you’re there to support him. Try explaining your concerns gently, while making it clear that your only concern is for his wellbeing. If this works, you might be able to see his GP together to discuss the diagnosis and options for treatment.
Answered by Dr Sarah Jarvis