Help! I think I have ME. What should I do?
First stop has to be the doctors. Unfortunately, there's no test for ME/CFS, it's an elimination diagnosis, so they will run lots of test to rule out other things and if they can't find a cause they will often give a diagnosis of ME.
If there's an ME specialist or an OT service near you, see if you can get a referral. They will be able to offer you some great advice.
While you wait...
Currently, the only thing that seems to help people with ME is resting and pacing.
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Listen to your body, don't push yourself, or try to keep up with what you think is "normal".
Rest. A lot. Way more than you think you need to.
Sleep if you need to - I'm currently sleeping for two sessions of two hours every day. It sucks but I trust it's what my body needs.
Resting isn't watching TV or reading, that takes energy and is an activity for me which I've had to cut back on.
I meditate - there are lots of great apps or free videos on YouTube. My favourite app is Calm.
Do less than you think you can.
Intersperse activities with rest breaks, it's like banking energy, saving extra so your body can heal itself. Sadly, it's not a quick fix, but it does help.
Get emotional support. Your emotions will probably be all over the place. I recommend talking to a counsellor as I've found that even though my condition is a physical illness there's often a lot going on in my life I'm not dealing with emotionally when I relapse.
If there's an ME specialist or an OT service near you, see if you can get a referral. They will be able to offer you some great advice.
While you wait...
Currently, the only thing that seems to help people with ME is resting and pacing.
Read more
Listen to your body, don't push yourself, or try to keep up with what you think is "normal".
Rest. A lot. Way more than you think you need to.
Sleep if you need to - I'm currently sleeping for two sessions of two hours every day. It sucks but I trust it's what my body needs.
Resting isn't watching TV or reading, that takes energy and is an activity for me which I've had to cut back on.
I meditate - there are lots of great apps or free videos on YouTube. My favourite app is Calm.
Do less than you think you can.
Intersperse activities with rest breaks, it's like banking energy, saving extra so your body can heal itself. Sadly, it's not a quick fix, but it does help.
Get emotional support. Your emotions will probably be all over the place. I recommend talking to a counsellor as I've found that even though my condition is a physical illness there's often a lot going on in my life I'm not dealing with emotionally when I relapse.
Useful Information
Claire Wade. Studio 17659, PO Box 6945, London, W1A 6US
This site is written by someone who is severely affect with ME and is compiled as a result of personal experience and research of other people with ME and their families. It is intended for information and guidance only. It is not intended to replace medical advice. Readers are strongly urged to consult a professional medical practitioner for a proper diagnosis or assessment before trying any of the treatments or medications outlined. As with all medications, always consult your GP, specialist or pharmacist and tell them about other medications or herbal preparations you are already taking; always read the label and patient information leaflet.
The contributors to this website are not medically trained but all live with or have significant experience of ME. The tips may not be suitable for everyone. No responsibility for loss occasioned to any person acting or refraining from action as a result of any statement in this work can be accepted by the author.
No part of this work may be reproduced or transmitted in any form or by any means (photocopying, electronic, recording or otherwise), except for personal or non-commercial use without the permission of the author.
Claire Wade has asserted her right under the Copyright, Designs and Patents Act of 1988 to be identified as the author of this work.
The contributors to this website are not medically trained but all live with or have significant experience of ME. The tips may not be suitable for everyone. No responsibility for loss occasioned to any person acting or refraining from action as a result of any statement in this work can be accepted by the author.
No part of this work may be reproduced or transmitted in any form or by any means (photocopying, electronic, recording or otherwise), except for personal or non-commercial use without the permission of the author.
Claire Wade has asserted her right under the Copyright, Designs and Patents Act of 1988 to be identified as the author of this work.