New Video on ME/CFS: "MIND THE ABYSS"

[SOnset]

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This is the trailer and "Part 1" of a video series I am working on called "Mind the Abyss."​

This initial segment is based on my personal experience, but I think it will be familiar to many.​

"Mind the Abyss - Prodrome" is my attempt to convey through text, animation and music​

something about the character of the first six months of the disease.​

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SuddenOnset​

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TRAILER​

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PART 1 - "PRODROME"​

 

[Persimmon]

This is EXTRAORDINARILY good.

Yep, lots of this stuff is very reminiscent of my own sudden onset - it's so close to home that I'm astonished. Your video will do what I haven't managed: to convey to other people what this disease is like.

If/when your health permits, you have a career waiting for you as a film maker.

 

[tyson oberle]

I can definitely relate to this video

 

[Undisclosed]

Excellent!

 

[Enid]

Very descriptive of a particular stage - brain not mind scrambled. Royal Free outbreak reported vivid and awful dreams too, like falling into a black hole. Takes courage to get through that and glad we can talk about it.

 

[shannah]

Amazing - speaks volumes!

Our anniversary dates are less than two weeks apart SOnset!

 

[Sparrow]

Thank you for making this.

 

[Jarod]

Good one.

If the film had a section on my diagnosis attempts, a good image would show about 100 of those revolving doors where it each door takes me in, spins me around, then spits me out to another revolving door. Only to get spun around again, and actually end up at square one again.

Granted when one finally finds a CFS doctor and gets tested, he/she at least gets out of the revolving door(psychiatrist/family doctor) maze

 

[Jarod]

 

[barbc56]

This video is absolutely stunning!! Congratulations !!!!! Could we make this a sticky?
Barb

 

[SickOfSickness]

I cried at the end. The end of this part is powerful.

I'm very glad I watched, even though it hurts a bit.

I clicked onto youtube to subscribe and give both videos a thumbs up. I hope others do the same.

Thanks for this, and I hope you do well with the making of part 2.

(Wow that you had many abnormal labs, so they didn't think it was psychosomatic. And that the neuro knew it could last 2-3 years or longer. Not the best answers but maybe a little better than being sent to 10 more psychiatrists.)

 

[PhoenixBurger]

SOnset - i just finished a discussion with my doctor telling me everything is in my head again. This video is outstanding. I would like to request a version without the 2-4 minutes of intro graphics. Videos like this go viral and get sent to doctors after patients like myself are tired of trying to present my case. No doctor will make it through the Saturn / space / etc stuff to watch the video. I know how they think. If you made a version that gets right into it, I don't think it would lose any emphasis, and would make it very forwardable. I wish we could have a template for this video and just pop in our info and numbers.

Feel free to add about 40 more screen shots of "Are you imagining things?" because we all know you heard that about 700 times.

 

[SickOfSickness]

Yes, to be honest, I was considering bailing because the first minutes weren't getting to the point. Once you get into it, things are moving at a good pace. I can see that it should have the intro when it's part of a bigger work, but a short version would be nice too.

I still think docs won't understand at all Worth a try.

 

[Sparrow]

I agree. The first part is good for framing it and I can see why you wanted it there, but I could see the length of it being harder to get through when you're watching in the context of passing interest in a quick video clip rather than sitting down to watch something you have a vested interest in seeing.

Though I don't want you to take the critique and think it isn't fantastic. You did a superb job. That's why we all want to make it easier to get more people to watch long enough to get to the meat of it. We want to share it with everyone we know. You did great.

And of course, it's your artistic license to do whatever you want with our unsolicited feedback. What do we know.

 

[SickOfSickness]

Sparrow said it very well.

 

[Marg]

You nailed it! It brought back a lot of memories It could be he story of me. Thanks for doing it, I can see how far I have come.

 

[SOnset]

Thanks for all the comments!

I think, at the moment, that the quickest way to jump past the introduction would be to use one of the two links below. You may have to put http:// at the start of the line.

The introduction (and the ending) were originally intended as being part of a much longer piece (which I continue to work on), so that's why they seem out of proportion to the length of the video.

youtu.be/GyxUVkfZ1Hk?t=2m15s
youtu.be/GyxUVkfZ1Hk?t=3m29s

Thanks again for the feedback!

SuddenOnset

 

[Shell]

Brilliantly done. I think good info videos are sorely needed even if only to try and get friends and family to better understand what this is like.
I had a rather weird excange with my second oldest a few months ago. He was shocked by how much pain I was in. "I'm always in pain," I said, "This isn't much worse than usual"
"But mum! You should tell me!" he cried
"But I can't because it would mean constantly telling you it hurts. Just accept it does and we can get on with life."
I don't like telling people how I feel or when I feel it - but a video is a way of giving the info at arms length.
So thank you.

 

[anna8]

Thank you!
Everything I've wanted to say to family friends and doctors! In a way that they would understand!
I went through every emotion while watching it, sometimes it was unbearable sad! But it finally left me with a feeling understanding and
Hope!

 

[PhoenixBurger]

SonSet I hope my post didn't come off wrong - I just have so many doctors I want to stick your video on their computer screens with, and tell them to "get a clue". Thank you for being willing to hear feedback. Your video is incredible, without a doubt. I have posted it on another web site called AboutBFS.com .... its a community where I fit in best for people with a very mild form of CFS/ME .... yet none of them realize it just yet. I hope your video opens their eyes. BFS (Benign Fasciculation Syndrome) has the same onset, the same pattern of symptoms, but with a significantly decreased intensity. Some call it the "little sister" of CFS and fibro. there's a heavy focus on fasciculations, but sensory, fatigue, myopathy, pain, etc are all part of it. Thank you again. I hope your video goes Viral.