M.E. patient's family and friends letter. This letter is designed to be given to the friends or family members of M.E. patients. It explains why the person with M.E. may often have to cancel or modify planned get-togethers and that this is not something done lightly and has nothing to do with mere 'fatigue.'
(Patients may choose to download the Word format version if they wish to make changes to the text in order to describe their own worst M.E. symptoms more accurately.)
I'm giving you this letter to let you know that due to illness I am going to have to cancel/delay/modify our planned get-together.
It is important to me that you understand that the problem is not fatigue. That is a normal part of life. Tiredness wouldn't stop me seeing you any more than it would stop you seeing me!
The relapse of M.E. symptoms caused by physical or mental overexertion is another kettle of fish entirely and quite a long way from anything healthy people would experience
Problem one: When I overdo things I experience problems such as inconsistent CNS (neurological) function, cardiac insufficiency and an inability to maintain homeostasis.
These problems can cause symptoms such as:
These symptoms can be very scary and unpleasant to live through particularly as often many of them occur all at once and often in unpredictable patterns.
Problem two: These worsened symptoms are also always accompanied by:
Most of these symptoms and disabilities really hit hard around 48 hours after overexertion, rather than during the actual visit. These problems can last for days, a week or two or more after a visit. Sometimes the reaction can last months.
Which activities will cause me to overexert varies a lot from day to day and week to week depending on how much I have been doing lately, as well as my overall health.
Problem three: Repeated overexertion leads to disease progression in M.E. So this means that however I may be tempted to do more than is wise for me to do, I should not, because the long term consequences can be so dreadful for me.
I am so glad that you continue to make time for me in your life, as I do very much value our friendship. I am sorry that I can sometimes be unreliable. Believe me, I find all this far more frustrating than you do, as I live with it all the time.
If you'd like more information on M.E. please check out the HFME website, videos or books. Thank you so much for taking the time to read this.