things I wish someone told me

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I was diagnosed with ME/CFS after a summer of sore throats that were later diagnosed as glandular fever.  I found this out two years later as I had the antibodies.  I had the blood tests that were negative at onset so I always do my research and dont trust a stressed, time and money poor dr.

I have found drs have very little to offer as to treating the ME but the symptoms.  Therefore if you have pain, insomnia, anxiety etc and this causes you problems get these treated rather than going with false hope that the illness can be cured at this stage.

I have found people with ME/CFS have type A personality.  This means delegation is difficult but essential.  If you can get someone to do something and save energy do it.  It is better for everyone including you in the long run.  Always keep something for yourself.  If you need energy to do something, to bring some joy in your life, you need to to keep going.