10 Things Everyone Should Know About ME/CFS

May 12th is International ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome) Awareness Day. Here are 10 things that I think everyone should know about ME/CFS.

  1. ME/CFS is a complex disease that affects cellular energy production, the immune system, the neuroendocrine system and sometimes the gastrointestinal system.
  2. There is an awful lot of scientific evidence indicating abnormalities in these systems however the scientific community hasn’t yet unravelled its full complexities so there is still no general understanding, treatment or cure.
  3. Trying to use more energy than is easily available will make the illness a lot worse. We often refer to this as a crash. Pushing too hard for too long can cause irreversible damage.
  4. It is very hard not to do too much because energy limits change from day to day. When you have a better than average day your body wants to celebrate and it’s so hard to hold back. Sometimes you don’t recognise your energy is low until you’ve already used too much.
  5. ME/CFS dramatically changes our ability to live our lives in the way that we were used to. This can be very difficult to adapt to and can sometimes affect our mental health. (Just like losing a limb could).
  6. There are some so called ‘experts’ who have observed these psychological effects and have decided that there is no underlying physical nature to the illness. Some of the treatments that they recommend such as Cognitive Behavioural Therapy and Graded Exercise Therapy have been extremely damaging because they have pushed people beyond their energy limits.
  7. ME/CFS is an invisible illness. You can’t normally tell by looking at us that we have a painful and debilitating illness. Most sufferers have good and bad days and you are likely to only see us on a good day, or we save all our energy for the part of the day we are with people and have to rest for the rest of it.
  8. Most of us have to severely cut back on our social lives because we just can’t do the things we used to do with our friends or sometimes because we need all our energy just to survive. This doesn’t always mean we need to be left alone.  Most of us would really appreciate short, low-energy contact with our friends, such as a short phone call, or a brief visit. When we do plan other social activities, we often find we’re just not well enough on the day and have to cancel. We’re very grateful when our friends are understanding and can learn to adapt to our illness too.
  9. ME/CFS can be severe and fatal. About 20-25% of ME/CFS of sufferers spend their lives in a darkened room in constant pain, most unable even to feed themselves, some unable even to swallow. Many of these people never improve and their lives are often cut short by this illness.
  10. We desperately need more research into this illness. We need effective treatments and a cure. In the meantime though, we need your understanding and support.

International ME/CFS Awareness Day: 10 things everyone should know.

Please help spread awareness and share this with as many people as possible!

This post has been written to participate in a #May12BlogBomb. You can see links to other posts written for the blog bomb on this page.

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