Managing your symptoms
While there is no single medicine that cures M.E., there are a number of approaches that might help you to manage your symptoms. If you want to talk through any of the information on this page, or find our more details, please do get in touch. Though our team are not medically trained, they can help you consider the options available.
Because M.E. is different for everyone, what works for one person with M.E. might not work for another. So we do not recommend one treatment over another, or tell you what we think you should do. Instead, we are going to give you some information about different approaches that you might be offered.
To decide what treatment is right for you, you and your parent or carer should look at the evidence and information available, and make sure you fully understand what the management involves. If there's something you don't understand, or need more information on, it's really important to ask more question, until you feel confident you understand the options.
The balancing out of activity and rest is called activity management.
Activity management helps some young people. This approach aims to help you get back in control of your life by gently and slowly improving your levels in all areas of activity (physically, intellectually and emotionally), without worsening your symptoms. It's an approach that is often used by specialist M.E. services.
Activity management is about finding out what you can already manage without making your symptoms worse, then setting and small achieving goals that encourage you to make very small increases to your activity. It's tailored to you, and like other approaches, should be carried out in partnership with a health professional who is qualified and experienced in M.E.
Activity management should be an approach you own, in partnership with your therapist and feel comfortable with. Many young people who have tried activity management say they feel as if they are back in control instead of their lives being dictated by M.E.
You might also hear about an approach called pacing. Pacing is very similar to activity management, but does not necessarily involve the same level of goal setting. Activity management is about taking a carefully managed approach to actually increasing your capabilities.
Graded exercise therapy (GET)
GET is the use of regular, supervised and structured physical exercise aimed at aiding improvement and recovery from M.E. As with all symptom management approaches, GET is not effective for everyone with M.E., nor is it a cure.
It's really important to note that GET is not simply exercise as your friends or family might define it (like playing football, or going to the gym), but a special approach to exercise that ensures you don't try and do too much, too quickly. Official guidelines for doctors say that people with M.E. must not be told to undertake "unsupervised, or unstructured, vigorous exercise" because this might make their symptoms worse.
Physical exercise, even when supervised, may seem like a strange thing to do for someone who has M.E., especially if you are struggling to carry out activities like dressing yourself. But if getting dressed also makes you feel a bit breathless, then that could be classed as exercise; so could having a shower, walking to a shop, or helping out at home.
An effective GET programme should always be overseen by an experienced M.E. physiotherapist or occupational therapist, working with you to decide how best to move forward. The therapist should take into account what you can do now, whether you spend most of your time in bed or whether you are more active, along with sleep and potential setbacks.
Cognitive behavioural therapy (CBT)
CBT is a talking therapy offered to people with all kinds of long-term conditions. The NICE guideline for M.E. says that the aim of CBT is to "reduce the levels of symptoms, disability and distress associated with the condition. A course of CBT is usually 12–16 sessions. The use of CBT does not assume or imply that symptoms are psychological or ‘made up’."
As with all symptom management approaches, CBT is not effective for everyone with M.E., nor is it a cure.
To be most effective, CBT should be delivered by a qualified therapist who has experience of working with young people affected by M.E. The therapist should take into account what you are and are not able to do, and you should be respected as a partner in your treatment.