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Thank you for all the links. I've never heard about ME/CFS and I'm glad I could learn something about it. This issue definitely needs attention.
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It's unfortunate that such an informative website about this condition is in such disrepair, so many broken links even in their donation section :(
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True that. There's a brief explanation of why this is happening on their main website. Quite unfortunate.
In any case they're updating the whole website, so hopefully it'll not only be back but better shortly :)
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Bump and Thx for the Information about this disease
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BUMP!
this needs more attention! My ex gf had CFS (CVS in dutch: chronisch vermoeidheidssyndroom).
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This is the first time I've heard about ME/CFS. Thanks for sharing and have a bump for awareness.
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This is such a great way of doing a giveaway. I never knew ME/CFS existed.
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Thanks :)
I had been planning it for a couple of weeks but finally got the final bit of energy to do it! I had only hoped I could include a few more games in the train but oh well, I can only do what I can do :)
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Just bumping because I agree, the illness is serious and a lot of people might think the patients are just 'lazy' at the early stadium of it. "Hey, get some sleep and you will feel better!" " Come on, you just got back from holidays, you can't be tired" etc... just to make people smile
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So true!
Not to mention those who say: "Oh, I probably have CFS too then. I also feel pretty tired some times"...
They don't know how much it hurts -- both the disease and their words...
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My friend's mom has this. She went to the doctor a lot for symptom management and my friend had to drive her around sometimes.
Fact: Fibromyalgia may be coexistent with M.E.
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Some people get the myalgia worse (formerly sporty types, or people who were very physically active), and some get the encephalomyelitis worse (people who used their brains). As a former software developer, I'm in the latter camp - symptoms can be similar to (but not the same as) early-onset Alzheimers.
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This disease is so terrible because outsiders think the people suffering from it are hypochondriacs or just making it sound worse than it is.
There are several severities, some people are able to function but have to change a lot of things about their daily life. Others are unable to do anything at all.
Biggest problem? The search for hope, for a cure, and the sharks along the way.
Many sufferers try everything and anything. Special diets, medications, workouts, meditation, miracle foods.
The internet is full of people with fancy websites that have found the cure and offer you the chance to share that cure....for 2000$ for a 2 day seminar with one free beverage and 200$ follow-up phone calls.
Those people...I can honestly say I hate them, I hope there is a special place in hell just for them.
Thanks for posting this to create a bit of awareness :)
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Biggest problem? The search for hope, for a cure, and the sharks along the way.
Many sufferers try everything and anything. Special diets, medications, workouts, meditation, miracle foods.
The internet is full of people with fancy websites that have found the cure and offer you the chance to share that cure....for 2000$ for a 2 day seminar with one free beverage and 200$ follow-up phone calls.
Those people...I can honestly say I hate them, I hope there is a special place in hell just for them.
I can attest to that.
We'll try every exercise routine, every energy supplement, every health food.. every single change to our circumstances we can come up with, until the desperation and hopelessness gets thick enough that enough that you choke on it, and you no longer can imagine a future where you're able to function. And then slowly, it eats away at you, and you'll no longer feel that drive to push yourself, and you'll start forgetting what it was like to actually be capable, self-assured, and possessed of endless potential- and only be able to recall the endless haze that your life has become.
:X
Thanks for your post :)
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Thanks for doing this, my wife suffers from ME/CFS for the past 8 years
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If you post an interesting fact about ME/CFS on this thread, I'll add you to my whitelist!
My best friend has CFS, and I was initially diagnosed with it, before they determined me to have Fibromyalgia, instead.
"Some doctors treat fibromyalgia (FMS) and chronic fatigue syndrome (CFS) separately, while others think they are the same thing – or at least, variations of the same condition. According to the Arthritis Foundation, research shows that 50 to 70 percent of people with one diagnosis also fit the criteria for the other."
I wish the poll had had more questions about the nature of the disease and how it affects people (to give a better impression of why it's so troubling), rather than basic 'yes this is bad' and 'people in the UK' things, not directly associated with the effects of the ailment.. :X
But, that's my take on it :)
Thanks for promoting awareness, either way.
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You're absolutely right, but I didn't quite find the way to do it given how itstoohard works (i.e., no multiple-choice answers). The answers need to be text and somewhat exact, hence I had to rely on a source. In this case, the website -- which isn't too bad as it's cool people can visit it and get acquainted to it.
For more (and a better) info on how it affect people's lives and how it looks like I've linked three youtube videos of different lengths. I thought I could ask something from the videos but I also thought that could end up being a bit much to ask. I didn't want the whole thing to be a chore, but rather something quick and easy that might get some people looking for further info on their own.
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(My initial phrasing was off from my actual intentions, I think I may have updated that after you started on your comment.)
No, that's fair- just seemed a bit disappointing.
Perhaps next time a factoid followed by a related question that can be searched using a site. :D
Or, ask questions from these stories, forcing people to read them: http://www.actionforme.org.uk/get-informed/about-me/who-does-it-affect/
:)
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Ah, questions about the stories is a pretty neat idea!
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Bump for help you with information on ME/CFS.
Good Luck!
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Hi there. It's my first train so excuse if it's a bumpy ride :)
It's a very humble train but I hope you can excuse that. My main goal is to have people a bit more aware and informed about Myalgic Encephalomyelitis, also known as chronic fatigue syndrome or ME/CFS. There's just too many people suffering too much with this disease, and only very few know much about it. There's also a dire need for support and research to find the causes and possible cure of this debilitating, mostly life-long illness.
So please consider answering the questionnaire even if you're not interested in the giveaways at all. The questionnaire is easy and just a way to get some information "out there".
I apologize because I wanted to make a longer train yet I can only create 4 giveaways at once. So I'm saying that upfront not to disappoint you. All 4 are bundled games, sorry I can't do more: 2 level 0+ from current humble bundle; 1 level 1+ and 1 level 2+ from previous bundles.
I wanted to create more so here's what I'll do: If you post an interesting fact about ME/CFS on this thread, I'll add you to my whitelist! I'll create a couple more (whitelist only) giveaways soon and I'll reply the link to your post so you get them.
I'd recommend the following videos to get a bit more informed about ME/CFS:
You can find the questionnaire that lead to the giveaways here.
Disclaimers:
Best of luck!
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