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

[Tammy]

Very well done.........the way you put it together made it very easy for me to watch........it flowed very nicely. I think this is going to spread very quickly. Bravo

 

[SOnset]

No offense taken, PhoenixBurger. You raised a valid concern.

SickOfSickness: I was very fortunate that the psychiatrist I saw immediately suspected that it was not "all in my head." Most of the lab tests were within the "normal range" or just outside of normal. The most significant seems to have been the spinal protein, which was higher than normal but not nearly as high as what you'd see in full blown encephalitis (so I'm told). The hospital tests were conducted nearly two months after I got the "flu," so it's possible that the spinal protein had peaked well before that date.

 

[Sparrow]

The most significant seems to have been the spinal protein, which was higher than normal but not nearly as high as what you'd see in full blown encephalitis (so I'm told). The hospital tests were conducted nearly two months after I got the "flu," so it's possible that the spinal protein had peaked well before that date.

I often wonder what abnormalities might show up if we were able to be thoroughly tested as soon as we became ill. It seems to take everyone some time to make the rounds to doctors, or for doctors to see a serious enough problem to test beyond the usual things. Maybe nothing would come up anyway, but it would be interesting to know.

 

[elbosque]

That is an excellent video. I did have to watch it in pieces as the visual effects in some parts had my head spinning. I posted it up on my Facebook with that one word of warning. It is a great video to share with friends and family.

 

[Hell...Hath...No...Fury..]

Superb video, well done! It makes me deeply regret not getting any tests done for the first 6-8 months. Even to this day i cant figure out how me and my family literally thought we were watching me dying and yet didn't go to a doctor for help. I think it was so so severe and terrifying and horrifically bad, we were just waiting for a month where i would be able to see another human ie doctor and the months just rolled on and on... Its like things were so bad that no one in the house was actually comprehending what was happening. Like it wasn't real, me and my parents were just praying for death rather than a doctor and now we'll never know if anything may have showed in tests the early days. Excellent video, really brought things back. Thanks for taking the time to make it.

 

[Sparrow]

Even to this day i cant figure out how me and my family literally thought we were watching me dying and yet didn't go to a doctor for help. . . . and now we'll never know if anything may have showed in tests the early days.

It may not have made much difference anyway. It took me forever to get my doctor to understand even a shred of how bad things really were, and I know that many other people have experienced the same thing. Even feeling like we're dying, many doctors assume we must be exaggerating and it can't really be that bad, so don't end up testing anyway. And when they do start to test, it's usually with the basic set of measurements, which generally don't show much at all. I got a copy of my test results taken when I was at my absolute lowest, and they were all normal.

 

[Hell...Hath...No...Fury..]

Yeah thats true. My first test was 8 months after onset, and it showed traces of a virus that they thought was epstein barr. Thankfully my doctor was great, she could see i was near dead and we both learned together what was going on over the years, and she looked into any new information i found etc. i moved house and lost her though. I really miss her!!!!

 

[Hell...Hath...No...Fury..]

My mam has just watched it, she says its the best video she's ever watched about ME, very professionally done.

 

[Dreambirdie]

Great video! Thanks for doing this. I have made videos before, so I can imagine how much time and energy this one took to put together. Very dramatic effect with the planets and the music.

It made me laugh in places, because my experiences were so similar to yours. Keep up the good work. I look forward to more.

 

[LiveAgain]

This is amazing! Thank you for making this.

 

[Mouse girl]

Oh, I likey likey! There was even one thing that gave me a good dark laugh, you know that gallows humor you get after long suffering. I love how it's so familiar except I didn't get all that testing done as I didn't have health insurance. The symptoms are all the same except I didn't have constant headaches (I have headaches and migraines still to this day but never constant that i can remember, but I might be forgetting what it was like in the beginning too). I didn't get sick with the flu though, my catalyst was mold exposure. I've been sick for 19 years now.

 

[cph13]

I could only think of one word
B R I L L I A N T !!!!!!!!! The tweaks will come. Thank you for sharing.

 

[EMilo]

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.
​

SuddenOnset​

TRAILER

PART 1 - "PRODROME"

I have watched this many times since I posted it on my blog almost a year ago. It still moves me and amazes me with the similarities to my experience. I'm worse than ever, two years after onset. I hope your life is moving in the right direction. Thank you for this video.

 

[SOnset]

Thanks for the kind words EMilo and thanks to everyone for the positive response to "Mind the Abyss - Part 1."

I am continuing to work on Part 2 and hope to have it ready in a few months. Unfortunately, in the last year I have been dealing with the unexpected death of my brother and the aftermath of that. Also, during this time, I developed a nasty form of eyelid inflammation (blepheritis leading to giant papillary conjunctivitis) which severely limited my ability to work on my computer for any length of time. Anyway, I'm getting back to work on Part 2 now and I'm hoping it will also turn out well.

I'm sorry to hear that you are feeling so bad now, EMilo. The two year mark was probably when I was at my worst as well. At about the 3.5 year mark, I started to see some very gradual improvement. I wonder if this was related to the shift that Dr. Lipkin has reported seeing at the 3 year mark. Anyway, I wish you well and encourage you to remain hopeful.

P.S. Youtube has attached a lot of advertising to "Mind the Abyss," which I've had nothing to do with. I have no desire to make any money off of it and when I have time I will try to see what can be done to remove the current advertising.

SuddenOnset.

 

[James_B]

I really like this first part. So strong.

Many speak of this sudden onset phenomenon. And I want to ask you if anyone have heard of a "Sudden Offset"?
From a full Canadian criteria state (without medication).