ME/CFS is an extremely frustrating condition and it can feel very lonely. However, there is a large community of people in the same boat- whether they have ME/CFS themselves, think they might, or know someone that does, and they all know how you are feeling.
I think I have ME/CFS- what do I do?
If you’ve read up on the symptoms for ME/CFS and think it may define the illness you have, then it’s a good idea to make an appointment with your GP. Do as much research as you can before going in, as unfortunately many medical professionals can be dismissal of the condition and won’t like to diagnose you. If they won’t- try and get a referral for a specialist ME/CFS clinic, who are much more prepared to deal with the condition. A referral may take up to 6 months if you have mild symptoms, but faster if they are moderate or severe.
The most important thing to do if you think you have ME/CFS is to pace yourself. Many cases of the condition have become more severe because the individual has been advised to increase the amount of exercise or activities they do daily in an attempt to build up stamina. This can be extremely damaging in the long-term, and remember if you overexert yourself on a good day, you’ll likely find yourself paying for it on another day.
I’ve been diagnosed- now what?
If you’ve managed to get a diagnosis- that’s a good first step to getting support. Being diagnosed with ME/CFS is notoriously difficult, largely because as there is no medical test for the condition, doctors will first rule out every other illness.
As above, the most important step now is to pace yourself. It’s possible that you’ve been offered a suggested treatment alongside your diagnosis, however be warned that many of these can be more harmful than good.
Someone I know has ME/CFS- how can I help?
Firstly, it’s great that you’re taking the time to research and learn about your loved ones condition. ME/CFS can be extremely isolating for the individual affected, so rallying around them will make the time easier for you all. Here are our top tips if you know someone that has ME/CFS:
- Research Although you may not be able to understand exactly how it feels internally to have ME/CFS, doing research into the condition and its symptoms will allow you to sympathise with the individual and understand its limits.
- Practical help Lots of individuals with ME/CFS say that while they appreciate the thought in gifts such as flowers, what is really more helpful is practical aid: such as offering to cook a meal, do a food shop, or mow the lawn. These tasks can be incredibly difficult to manage with the condition and so helping out your loved one in this way will be infinitely more appreciated than a card.
“What advice would you give to friends and family?”
- Be sensitive Someone with ME/CFS is likely to be frustrated with the loss of their old life- they may have given up work and school, struggle to make a meal, and even have trouble finishing a conversation. Comments such as “I wish I could stay in bed all day too” and “But you don’t look sick” are hurtful and dismissive.
- Be understanding Many with ME/CFS say that while their friends and family are supportive, other well-meaning comments aren’t appreciated. These include things like “Are you better yet?” “Have you tried this?” “Why don’t you just get more sleep?”. Watch our video with Fiona below.
“What are annoying comments to hear as someone with M.E.?”
Organisations and Charities
There are many wonderful ME/CFS organisations and charities out there which we are proud to support.
#MEAction – the organisation behind the #MillionsMissing campaign who are fighting for better health equality for ME/CFS patients.
ME Association – an organisation with lots of useful information, research, and latest news within the world of ME/CFS.
Action for ME – a charity campaiging for better awareness and research for ME/CFS with lots of useful services and advice.
ME Research – a charity aiming to comission and fund high-quality scientific research into ME/CFS and its causes.
Local Support Groups – organised by the ME Association, joining a local ME/CFS support group can help make the condition less isolating by linking you with others going through the same experience.