6. What is it like to have ME? (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome CFS)

Some thoughts about having this debilitating neurological illness, which is thought to affect up to 250,000 people in the UK.

You can read a transcript of what I've said, at http://www.getwellfromme.com

http://www.foggyfriends.org
http://www.cfstheresistance.com
http://youtube.com/plzsupportme

Category:

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[KungZoo]

Thank you for posting. Your list does sound like the most depressing list in the whole wide world, but it really is all soooo accurate. Why are there still so many people/health establishments who just don't acknowledge the illness when there's so much evidence for its presence. Employers in the main also don't have any awareness of this condition, either, thinking it's just associated with a bit of tiredness. It's so frustrating when we're as far ahead as 2012.

[GetWellFromME]

@KungZoo Thank you. Yes, it's awful that very few people take ME seriously as the devastating neurological illness that it is. I just hope that with more awareness, things might be just starting to change with more understanding, and even research!

[TheFletch827]

I think overall this illness convinces you that you're dying, and often I feel like my brain is rotting. Not all patients can sleep, I am one of them. There is some malfunction in the brain when it comes to sleep and some can sleep other patients cannot, lying in bed for hours on end and the brain won't shut off although experiencing severe sleepiness and fatigue. Thank-you for bringing awareness. We need a answers, we need help. Our dreams, hopes, accomplishments, passions, all stripped away.

[GetWellFromME]

@TheFletch827 Yes not being able to sleep, even when you're desperately exhausted - or not sleeping at the right times for the body - is very common with ME and very difficult. There are some treatments for sleep disturbances with ME which can help some people sometimes, check out Dr Sarah Myhill's website and search for "sleep" in case you can find any useful info to help you there. Yes, years vanish, it's horrible.

[thewoopwoop1000]

WOW this is the MOST touching thing i have ever heard in my life...I actually feel lucky i don't have ME but to all the people who do. Stay Strong! You are cared about.

[GetWellFromME]

@thewoopwoop1000 Thank you so much, appreciate your support! :)

[telemetry9]

great to see this.

[Nekochan093]

@GetWellFromME Thank you :) I shall try my best to rest more often and take better care of myself. Thank you for all your support and your helpful videos ^^

[GetWellFromME]

@39rebecca Thank you, and I'm sure he must appreciate all of your support and care.

[GetWellFromME]

@Nekochan093 Sorry to hear you have had such bad "support" (or lack of it), by the sound of it. It really is important not to push yourself, but to find the rest your body is crying out for, and hopefully find some treatments (or just time) that might help you to recover at least a little better. Hope you do start to feel better again, and hopefully soon.