The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

M.E. patient's family and friends letter

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.'

Click on the links to download this letter in Word or PDF format.

(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.)

M.E. patient's family and friends letter

Hello,

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:

  • Moderate to severe low blood pressure.
  • Heart problems such as a very high heart rate, chest pressure, heart pain and a fluttering and straining heart.
  • Feet burning painfully and turning blue/purple on standing.
  • Breathlessness and air hunger.
  • Feeling very nauseous and as if 'poisoned.'
  • Poor sleep, and difficulty getting to sleep.
  • Poor digestion.
  • Vertigo, minor seizures, blurred vision and/or muscle pain and weakness.
  • Severe pain at the back of the head, where the head meets the neck.

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:

  • A further reduction in the time able to be spent upright or being mentally or physically active in a day - which means difficulty with the many small tasks that make up my usual routines of daily living.

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.

Acknowlegments

Thank you to Bea Fawcett for editing this letter.

Subscribe to the HFME newsletter!

To subscribe just click here

Live Support

Exciting book news!

Click here to purchase the first HFME book!


The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

Paperback $18.95
Hardcover $22.95