Jamison Hill's Fall: Former Weightlifter Now Has Most Severe Kind of ME/CFS

Cort

Founder of Health Rising and Phoenix Rising
Staff member
[fright]
Jamison-pre-ME-CFS-II-200x300.jpg
[/fright]Two years ago Jamison Hill was featured in a blog "Carrying that Weight: A Weightlifter's Chronic Fatigue Syndrome Story" on Health Rising. He was also featured in the film "The Forgotten Plague"

I loved that blog because it debunked any myths someone might have about this disease not happening to the fittest among us. Jamison was a bodybuilder and fitness coach. He regularly subjected his body to extreme stresses and grew stronger when he did so.

He was young and supremely healthy and it didn't make a bit of a difference when ME/CFS came calling.

When it went wrong for Jamison it all went wrong at once. No infection needed by the way; one day in 2010, something in him just broke. He described what happened:
Then finally, the Sunday after Thanksgiving, I went for one of my marathon-like workouts and the walls started closing in. I was dizzy, with chills and intense heart palpitations. I thought I was dying, or at least having a stroke. It was a scary mess. I was eventually diagnosed with mononucleosis, and later, when I didn’t recover, ME/CFS.
[fleft]
Breaking-point.jpg
[/fleft]In his blog Jamison described his frustration at not being able to do the things he used to do:
I was shocked and frustrated with the thought that I might never be a fitness model, a competitive bodybuilder or even a personal trainer again. Not being able to squat twice my body weight, or flip that giant tracker tire in my backyard again seemed unimaginable. In the midst of overwhelming frustration I find myself using what little energy I have to let out my anger, or any other emotion I am dealing with at the time.
Jamison was frustrated but not embittered by his illness. He was actively seeking out ways to make his present life as fruitful as possible. He was not allowing himself to lapse into depression. He was focused on moving forward; that's was who he was. He always moved forward.

"I’ve found that finding new dreams and aspirations are pivotal to healthy mental activity. In fact, I’ve found no aspiration is too small to have an influence on my happiness. Getting out of bed and stretching, or standing up while I do the dishes—even if only for a minute—is certainly better than nothing."
Jamison was also seeing good doctors and, yes, he was pacing and being careful. In short, he was doing all the right things and it was all for naught. Just as with Whitney Dafoe, no matter what he did, no matter which doctors he saw, his health kept slipping, slipping away. In January of last year his health declined dramatically.

Five years ago Jamison slammed weights for hours. Today, he is in a state much like Whitney. He can hardly move his body. The slightest stimulus tears him apart. He is in a state of almost unfathomable distress and in a state of debilitation that few people, except at the very end of their life, experience. He's 27 years old. According to Jamison's family's GoFundMe page,
[fright]
fading.jpg
[/fright]
"All day he lies in a darkened bedroom, unable to tolerate light or sound, able to make only the smallest movements of his body, unable to speak, eating only pureed foods through a straw, and fighting despair and loneliness."
Low levels of light and sound hurt. Laughing is exhausting, looking at a computer is unthinkable. Speaking hurts. The entire body hurts...

Having a purpose Jamison said was always key for him. Jamison always had a purpose in his life. I say that he still has one and that he's fulfilling it. He's showing the world just how bad this disease can get. He's demonstrating how anyone can get this disease. He's showing how you can do everything right and have it still sweep everything away.

Jamison came to Health Rising two years because he wanted to tell his story. He's still telling his story. He's showing the world how serious ME/CFS can be.That's his gift to us.

So I say spread Jamison's story around. Help make the torture he's going through worth it. Support ME/CFS research, and advocate for Jamison and for all of us.


If you can help him out please consider that as well. His family is raising funds for his treatment. Visit their GoFundMe page to help them pay for medical care at the Open Medicine Institute in Mountain View, CA!
 
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Hi,

I really feel for Jamison and while I tmy suffering while I think it is terrible is nothing like that. What I would like to offer are suggestions. I have often feared the possibility of ending up like Jamison. So, I have a 2 therapies that I would want tried if I ever got into that state, Ozone therapy and ketamine therapy (ie a ketamine coma). I am currently looking at Ozone and other oxygenating therapies already. Here is story on one woman and how ozone therapy helped her.

http://www.hhs.gov/advcomcfs/meetings/presentations/waroff_1009.pdf

In the meantime, I have posted the story on my facebook page as I agree with Cort, that the world needs to know how devestating this condition can be.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Hi,

I really feel for Jamison and while I tmy suffering while I think it is terrible is nothing like that. What I would like to offer are suggestions. I have often feared the possibility of ending up like Jamison. So, I have a 2 therapies that I would want tried if I ever got into that state, Ozone therapy and ketamine therapy (ie a ketamine coma). I am currently looking at Ozone and other oxygenating therapies already. Here is story on one woman and how ozone therapy helped her.

http://www.hhs.gov/advcomcfs/meetings/presentations/waroff_1009.pdf

In the meantime, I have posted the story on my facebook page as I agree with Cort, that the world needs to know how devestating this condition can be.
Great Idea Chris!

Did you see Loki's response to Ketamine? http://www.cortjohnson.org/forums/threads/omg-ketamine.3625/

Amazing!
 

Bon Marie

Member
I just received & watched my copy of Forgotten Plague. I knew of Jamison before seeing him in the documentary, & related to his story.
Although I had several health issues leading up to ME/CFS, I was also actively taking care of my body. In my early thirties, working as a professional dancer, teacher, choreographer & owner of multiple performing arts studios, I taught & trained five, sometimes six days a week, had three young boys &
a six pack! After exposure to black mold, my world unraveled. I thought I was dying, living with so much pain & confusion, almost welcomed the idea.
After months of suffering; diagnosis~ME/CFS. I have also developed Mast Cell Activation Disease, am living on SSDisability, mostly housebound & bedridden. This retched disease does NOT belong to the lazy unconditioned couch potatoes of the world~it's up for grabs to anyone.
I am heartbroken with every patient story I hear, & reminded to be grateful for those few hours a week that I am able to "function".
My pointe shoes are now a decoration on the piano with a picture to remind me of what I once worked so hard for & loved so much.
I am one of the "lucky" ones, but the reality of this disease & what it has done to Jamison, Whitney, & so many others, looms in the back of my mind. Will I be struck down completely as well? This is s serious, scary, ever-morphing disease.
 

fdotx

Well-Known Member
Hi,

I really feel for Jamison and while I tmy suffering while I think it is terrible is nothing like that. What I would like to offer are suggestions. I have often feared the possibility of ending up like Jamison. So, I have a 2 therapies that I would want tried if I ever got into that state, Ozone therapy and ketamine therapy (ie a ketamine coma). I am currently looking at Ozone and other oxygenating therapies already. Here is story on one woman and how ozone therapy helped her.

http://www.hhs.gov/advcomcfs/meetings/presentations/waroff_1009.pdf

In the meantime, I have posted the story on my facebook page as I agree with Cort, that the world needs to know how devestating this condition can be.
Thanks for posting the ozone link Chris - very good to know about, and that she needed to get a line to be constantly infused. Is it legal in all states do you know? Cort, the link you posted in your first sentence isn't working - that looks interesting too!
 

fdotx

Well-Known Member
Two years ago Jamison Hill was featured in a blog "Carrying that Weight: A Weightlifter's Chronic Fatigue Syndrome Story" on Health Rising. He was also featured in the film "The Forgotten Plague"

I loved that blog because it debunked any myths someone might have about this disease not happening to the fittest among us. Jamison was a bodybuilder and fitness coach. He regularly subjected his body to extreme stresses and grew stronger when he did so.

[bimg=fright|no-lightbox]http://www.cortjohnson.org/wp-content/uploads/2014/02/Jamison-pre-ME-CFS-II-200x300.jpg[/bimg]He was young and supremely healthy and it didn't make a bit of a difference when ME/CFS came calling.

When it went wrong for Jamison it all went wrong at once. No infection needed by the way; one day in 2010, something in him just broke. He described what happened:

In his blog Jamison described his frustration at not being able to do the things he used to do:

[fleft]View attachment 929 [/fleft]Jamison was frustrated but not embittered by his illness. He was actively seeking out ways to make his present life as fruitful as possible. He was not allowing himself to lapse into depression. He was focused on moving forward; that's was who he was. He always moved forward.



Jamison was also seeing good doctors and, yes, he was pacing and being careful. In short, he was doing all the right things and it was all for naught. Just as with Whitney Dafoe, no matter what he did, no matter which doctors he saw, his health kept slipping, slipping away. In January of last year his health declined dramatically.


Five years ago Jamison slammed weights for hours. Today, he is in a state much like Whitney. He can hardly move his body. The slightest stimulus tears him apart. He is in a state of almost unfathomable distress and in a state of debilitation that few people, except at the very end of their life, experience. He's 27 years old. According to Jamison's family's GoFundMe page,

Low levels of light and sound hurt. Laughing is exhausting, looking at a computer is unthinkable. Speaking hurts. The entire body hurts...


[fright]View attachment 930 [/fright]Having a purpose Jamison said was always key for him. Jamison always had a purpose in his life. I say that he still has one and that he's fulfilling it. He's showing the world just how bad this disease can get. He's demonstrating how anyone can get this disease. He's showing how you can do everything right and have it still sweep everything away.

Jamison came to Health Rising two years because he wanted to tell his story. He's still telling his story. He's showing the world how serious ME/CFS can be.That's his gift to us.

So I say spread Jamison's story around. Help make the torture he's going through worth it. Support ME/CFS research, and advocate for Jamison and for all of us.

If you can help him out please consider that as well. His family is raising funds for his treatment. Visit their GoFundMe page to help them pay for medical care at the Open Medicine Institute in Mountain View, CA!
This is so sad - I can't believe the government hasn't been more interested in this. Thanks for the GoFund Me link.
 

fdotx

Well-Known Member
I just received & watched my copy of Forgotten Plague. I knew of Jamison before seeing him in the documentary, & related to his story.
Although I had several health issues leading up to ME/CFS, I was also actively taking care of my body. In my early thirties, working as a professional dancer, teacher, choreographer & owner of multiple performing arts studios, I taught & trained five, sometimes six days a week, had three young boys &
a six pack! After exposure to black mold, my world unraveled. I thought I was dying, living with so much pain & confusion, almost welcomed the idea.
After months of suffering; diagnosis~ME/CFS. I have also developed Mast Cell Activation Disease, am living on SSDisability, mostly housebound & bedridden. This retched disease does NOT belong to the lazy unconditioned couch potatoes of the world~it's up for grabs to anyone.
I am heartbroken with every patient story I hear, & reminded to be grateful for those few hours a week that I am able to "function".
My pointe shoes are now a decoration on the piano with a picture to remind me of what I once worked so hard for & loved so much.
I am one of the "lucky" ones, but the reality of this disease & what it has done to Jamison, Whitney, & so many others, looms in the back of my mind. Will I be struck down completely as well? This is s serious, scary, ever-morphing disease.
Bon Marie your story is also heartbreaking - hang in there. At 62, especially with the past 2 years seeing a decline, I too have begun to be slightly concerned as to where it might go. In my 40's and into my 50's I remember thinking I would "grow out of it." Silly but I suppose it was a coping mechanism at the time....
 
Hi,

I really feel for Jamison and while I tmy suffering while I think it is terrible is nothing like that. What I would like to offer are suggestions. I have often feared the possibility of ending up like Jamison. So, I have a 2 therapies that I would want tried if I ever got into that state, Ozone therapy and ketamine therapy (ie a ketamine coma). I am currently looking at Ozone and other oxygenating therapies already. Here is story on one woman and how ozone therapy helped her.

http://www.hhs.gov/advcomcfs/meetings/presentations/waroff_1009.pdf

In the meantime, I have posted the story on my facebook page as I agree with Cort, that the world needs to know how devestating this condition can be.[/QUOTE

Ozone is very risky w cfs..I had an extremely bad experience
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
It reall
I just received & watched my copy of Forgotten Plague. I knew of Jamison before seeing him in the documentary, & related to his story.
Although I had several health issues leading up to ME/CFS, I was also actively taking care of my body. In my early thirties, working as a professional dancer, teacher, choreographer & owner of multiple performing arts studios, I taught & trained five, sometimes six days a week, had three young boys &
a six pack! After exposure to black mold, my world unraveled. I thought I was dying, living with so much pain & confusion, almost welcomed the idea.
After months of suffering; diagnosis~ME/CFS. I have also developed Mast Cell Activation Disease, am living on SSDisability, mostly housebound & bedridden. This retched disease does NOT belong to the lazy unconditioned couch potatoes of the world~it's up for grabs to anyone.
I am heartbroken with every patient story I hear, & reminded to be grateful for those few hours a week that I am able to "function".
My pointe shoes are now a decoration on the piano with a picture to remind me of what I once worked so hard for & loved so much.
I am one of the "lucky" ones, but the reality of this disease & what it has done to Jamison, Whitney, & so many others, looms in the back of my mind. Will I be struck down completely as well? This is s serious, scary, ever-morphing disease.
It really is scary. I've pushed myself for decades. I haven't been good at pacing yet I'm in much better shape than either of them. I am lucky as well. Health Rising will soon have a program out that dramatically demonstrates this is not a disease of couch potatoes.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Jamison, by the way, lives just about an hour away from Whitney. He got sick at Santa Cruz -same place I got sick actually - and moved to the Sierra foothills.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Fixed it..Thanks
Thanks for posting the ozone link Chris - very good to know about, and that she needed to get a line to be constantly infused. Is it legal in all states do you know? Cort, the link you posted in your first sentence isn't working - that looks interesting too!
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Cort why do you say no infection needed when he was diagnosed with mono?
Good point, he was later diagnosed with mono but he apparently wasn't sick when he was working out - since he was working out - I guess it was like a hidden case of mono..
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Jamison's god mother just posted this on another thread....he has improved a bit!

Thank you all so much for your kind and supportive words about Jamison. He's blessed to have you. My name is Mary de Rosas and I am Jamison's godmother. I started the GoFundMe page for him in August 2015 when his family had run out of funds to pay for his care at OMI (they don't take insurance) and his caregiving.

About a year ago this time Jamison began to decline precipitously and has been bedbound since, pretty much in the condition described in his GoFundMe page. But in the last 2 months or so he has seen some significant improvement! He can now use his phone to send texts and emails and to listen to podcasts. He can speak 10-15 words a day (if not more) and he is making edits to his memoir. I saw him in January and was struck by how much he'd improved since October 2015. The link to the page is: https://www.gofundme.com/z72amn3c?u...ail&utm_content=cta_button&utm_campaign=upd_n. Lots of updates there, including marking of all of his improvements. His sense of humor and determination remain intact and robust!

As someone watching from the outside I must say the weight and destruction and mercilessness of this illness can break you-as a family member or friend. To all of you who suffer with the illness-know that you are not forgotten. Your strength and determination to help each other are amazing-may you all have health. And thanks for walking with Jamison.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Over a $1,000 has been raised for Jamison's health car in the last 24 hours :)

Janet Dafoe Whitney's mother posted this:

"We are thinking of you every single day, Jamison, as we care for Whitney we include you in our thoughts of love for him. We live near OMI, so when you are here if you need a place to crash or sleep or anything we could help with, please let us know. Cort and Ryan both know how to find us. We know what you are going through, we grieve with you for what you've lost, we celebrate your amazing being, we are fighting every single day with all our might to help you and Whitney and all who suffer from this horrid disease. You are amazing, and you and Whitney are going to get better. Together with many people working on this, we WILL figure this out!!!! Ron Davis and Janet Dafoe"
 

Bon Marie

Member
Bon Marie your story is also heartbreaking - hang in there. At 62, especially with the past 2 years seeing a decline, I too have begun to be slightly concerned as to where it might go. In my 40's and into my 50's I remember thinking I would "grow out of it." Silly but I suppose it was a coping mechanism at the time....
Thanx for replying to my post. I guess we have ME/CFS & "silliness" in common, because I felt for many years I could rest/pace my way out. Now I'm counting on science. In the mean time, I'm about to embark on a "location factor" journey up higher in the Calif mountains. I plan on living a "monk" style life for the next year in hopes of calming down my nervous system etc.. I have a support system in place, an old but reliable Ford van Airstream conversion, & I'm all but ready to roll. This has been planned for over a year; just waiting for enough strength to make the move.
 

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