When things start moving, help shows up in the most unlikely places. Take a recent blog from a University of Michigan sports blogger – Ace. Ace has been sick since high school but only in the last couple of years has he been diagnosed as having chronic fatigue syndrome (ME/CFS).
Inspired by the film Unrest, Ace told his ME/CFS story to his college sports followers.
Ace has been sports blogging from bed for the last five years or so on Univ. of Michigan sports matters – a school that is rabid about its sports. The MGOBlog Ace writes for is committed to cover U of Michigan football – in “exhaustive, extreme, and debilitating detail.” He has 60,000 followers.
On the 9th of December, Ace made a decision to really spill the beans about his health – on his sports blog. He had done this before but not in quite the same way or maybe people were just ready for it this time.
In his “Dispatch From A Frigid Basement On Monday Afternoon, I’m Pretty Sure“, he didn’t tip-toe his way around his illness – he plunged in full bore. Ace is in a relapse right now. He has no idea how long he will be in it – and he’s not asking for pity. He wants to explain his absences and even more, he just wants people to know…
In one of the more dramatic moments in the film Unrest, Jen tears up not over the possibility of dying or even of being sick – she’d come to grips with both – but of the very likely possibility that she, with her once bright future, could just fade away, unseen and unheard.
With the toll ME/CFS takes on a person’s functioning it’s so hard NOT to fade away. Ace may never get well but he made the decision that he was going to be heard. Reporting on the extraordinary ups and downs people with ME/CFS deal with he stated:
I may feel this way for several more weeks, perhaps months. I may get worse, lose some of the 25 pounds I worked so hard to put back on, fall into an extended depression or I may start improving tomorrow. This is my reality. It has been, in some form, the entire time I’ve worked here. While these last two weeks have been particularly rough, these symptoms, and so many more, are ever present.
There’s more on the difficulty of keeping things clean (read the maggot story…), his very limited ability to work, the help he needs at age 30 to do the most basic things … not stuff that any guy would like to fess up to – particularly to a bunch of rabid, college-age sports junkies.
Could a college sports blogger actually inspire people to support ME/CFS?
Not stuff that you would think a sports blog would even allow to be printed either. Why would they? This has nothing to do with Michigan sports. But Ace’s managers and co-workers have bent over backward to support him. Add them to his room-mates who help him keep his room clean, his girlfriend, and finally his parents – one of whom had ME/CFS. As Ace noted – having an ME/CFS patient in the house is not an easy gig.
“It’s not easy to live with someone with CFS; we don’t go out, we’re often hyper-sensitive, we’re definitely not helpful around the house, and there’s usually frustration and depression and even rage bubbling just below the surface.”
Not exactly sport geek material but they “got” ME/CFS in spades. The 200-plus comments have been uniformly positive and supportive. They got it like most people who come to this disease with an open mind do. They got it like the people at the screening of Unrest in Sedona I was at yesterday got it. They were alarmed that things could get so bad and they showed compassion. Some of them even learned that they or somebody they know has it.
Another act of rawness and courage – Jen Brea’s filming of Unrest – inspired Ace to write his blog. His writing, in turn, will inspire others. This is how the true story of ME/CFS gets spread – person by person – by people authentically telling their stories.
Ace’s father Ken had ME/CFS. This is one of his conceptions of it. From Eye-Music – http://eye-music.com/
Ace didn’t stop there. Encouraged by the response which he called “overwhelming and uplifting and freeing”, two days later he wrote “Same Chair, New Day, Let’s Fire The Money Cannon” asking his sports buddies (80% younger males?) to financially support ME/CFS research by giving money to The Solve ME/CFS Initiative. Telling your story takes one kind of courage. Asking the readers of a sports blog to give money for a mysterious disease that makes you fatigued takes an entirely different kind of guts.
Yet it worked. His readers blew through his $5K ask in three hours and doubled it three hours later. After he promised he’d get the Wild Thing haircut they’ve added almost 10K more. In just a couple of days, the sports college community at the University of Michigan has contributed over $19K(!) to an organization and a disease they’d probably never heard of a few days before.
That’s the power of a story and it illustrates an important thing about ME/CFS. We have allies out there we’ve never heard of; allies who will show up when we share our stories. It’s not easy to share your story. My family has been supportive since day 1, yet it was only last month that I shared with them, for the first time in decades, some of what ME/CFS is like. It was good for them to hear it and it was good for me to share it.
We literally have no idea the impact that sharing our story – however we choose to do it – will ultimately have; whose life it will touch, whose life it might change, what actions it might prompt. Our stories come at great cost and they should be proudly and openly shared. People should know…
Ace’s decision to share his story and what came out of it reminded me of this quote from a Scottish mountaineer:
“Concerning all acts of initiative (and creation), there is one elementary truth, the ignorance of which kills countless ideas and splendid plans: that the moment one definitely commits oneself, then Providence moves too. All sorts of things occur to help one that would never otherwise have occurred. A whole stream of events issues from the decision, raising in one’s favour all manner of unforeseen incidents and meetings and material assistance, which no man could have dreamt would have come his way. I have learned a deep respect for one of Goethe’s couplets:
- Whatever you can do, or dream you can, begin it.
- Boldness has genius, power, and magic in it!”
Ace was inspired by the film Unrest to tell his story. He called it “a remarkable, raw, unfiltered look into the lives of those with CFS and those closest to them“. Now is a great time to share Unrest – it’s airing on PBS (check your local listings) and is free to stream for the next couple of weeks. (If you have access – check out the latest review of Unrest on the Wall Street Journal no less.)
It’s great that this man got such a positive reaction! I do have to say that my reactions have been almost the polar opposite. My husband of 10 years left me for someone else, and the only time I get help is when I pay for it. Rather than speak up I’m learning to shut up for fear of driving others away. ME-CFS is so often a very solitary illness – certainly not by choice. I’m thankful for the courage and efforts of people out there who are making a difference for all of us. We desperately need people like that. I also want to honour those who are living painfully forgotten lives, who don’t feel like they can make a difference. But I want to say that their courage to do every day life as best they can and not give up is truly inspiring.
Ace had a dedicated following – people who knew him and would listen to him – and that surely helped a lot. Other situations are more difficult. We’re at a strange juncture – we need to speak out and tell our stories to get help but we risk getting shut down when we do so as well. I think everyone is in a different situation and has to assess what works for them – when it works to share and when it doesn’t.
In the meantime it’s good to see this group respond so well to Ace’s message.
Ace is an absolute fraud. I donated money to his gofundme, in which he duped 6 figures out of the fanbase so he could basically take a year long “vacation” while taking money we donated thinking it was for medical expenses, uncovered FMLA time off, etc to buy expensive podcasting equipment bc he was planning to launch his own blog type of business. He then refused to even acknowledge the people who found all this out and wanted their money back. He was in a dispute just tonight with a media member on twitter about what a liar Ace is and I saw it and shared my story and the pos tried accusing me of lying until I had screenshots and he blocked me.
This has been my experience. Only the details are different.
It’s hard to be objective or detached when lives are ruined by this illness. My heart goes out to you, Kristina, and I hope you will not always be or feel alone. I’m more blessed than many in that my family accepts the reality of ME/CFS. But help has been limited at best. And I get that; they have their own demanding lives to lead. They have never so much as called or written a legislator much less marched or traveled to Washington to lobby on our behalf. I am on my own to manage my life…from cleaning / laundry / shopping to handling roof and plumbing leaks and car problems. So even if you received more compassion from family and friends, you would probably still be left to care for yourself. That plight is nearly universal for PWCs–Jen Brea’s husband Omar and the families shown in UNREST notwithstanding. You are not alone, however; far from it. It is cold comfort, of course, but you are part of a worldwide community of fellow sufferers.
Kristina,
I am sorry and I feel for you. Although my experience has been different is it no less painful and lonely. Hope you can feel the love and understanding from all who read your comment.
Great story. And there are so many. When I look back over the accomplishments I made over the years I do wonder what else I may have achieved if not for ME
Isn’t that true. I keep thinking if we as a group could just get 30% better we could do soo much….
Right?! :-/
Ace – a friend of mine from U of M shared your blog with me just yesterday. This was a friend from high school who I haven’t seen much since then (I’m 49, so that was a while ago!). My point being, your post about your experience with ME/CFS allowed my friend to learn more about this horrible illness. So I am inclined to think that Cort is right in saying that a college sports blogger could play a big role in spreading awareness! It is so important that the world hear about our struggles and we especially need more men’s voices. I really enjoyed reading your blog – thank you. Sending best thoughts and hope for improvement in the year ahead. Go Blue!
Ha! Isn’t that something. You never know who your story might touch….
“…we especially need more men’s voices”… I agree. Yet this fact angers me deeply. When men speak out the illness receives more legitimacy and that is critical if cure or treatments are to be found. But why aren’t women deemed credible on our own?? Why must it be psychosomatic when it’s considered to be just women, but suddenly it’s a gravely serious disease when male sufferers’ plight is made known?
“Why” indeed
Good to read this article.
I personally have to filter my remarks when discussing my illness. So very sad.
Cort, would it be possible to get information regarding the physician In Alabama???
The physician is none other that Dr. Skip Pridgen in Tuscaloosa, Alabama who was recently featured in recovery story blog – https://www.healthrising.org/blog/2017/12/18/26-years-chronic-fatigue-fibromyalgia-recovery-story/
Thank you Ace for being brave enough to share your story and then asking for donations for ME. ❤️
I am a long term severe me/cfs patient and lost over the many many years almost all my friends. 2 connections I still have. Bur I may not say to much. And hardly see them. 1 who had a girlfriend with anouther terruble desease who understands a little bit of what severely ill means, 1 me/fm patient who is still better than me, my brouther who even don’t want to understand it/can not understand it/does not want to hear it. The one who understood the most was my father who took care for me many many years untill he died. But even he, with all his compasion, could not understand that I was unable to sit untill he (with tears in my eyes) got severe untreatable cancer and was not able to sit anymore himself. But he loved me and accepted me and took care of me as I was.Now I live for many many years in total isolation that makes me nuts.
And also the worse I got, the more “friends” got away and the least understanding I got.
Also with docters. the docter who comes at my home even does not believe in me/cfs. I once printed something about it from the NIH, he even did not want to read it.
U have had it all, the psychiatrists, the psychosimatic revaludation, the learb to live with it and you do not have to come back, the gasuell excercise, and so on,…
this is not in the US where they are at least 50 years in front of us and then it is still bad. U mean with bad, the money for research, how many specialist treating me/cfs, no residence for the severelly ill patients,…
We have a long way to go!
It’s rough…. We’re like the old pioneers – trudging through the desert, looking for waterholes, getting attacked, getting beaten (some of us fall by the wayside) but as a whole we as a community keep moving on, gathering allies and getting support. We will get there!
Did everyone hear the latest? A Bitcoin philanthropy called the Pineapple Fund, out of the blue, just donated $1 million to the Open Medicine Foundation….
https://www.healthrising.org/forums/threads/open-medicine-foundation-gets-1-000-000-bitcoin-donation.5800/#post-33076
The word about ME/CFS is getting out more and more. This group has no connection that I can tell to ME/CFS – they’re giving money to the charities all over the world and they chose to give a $1 million to a small ME/CFS charity. That’s special!
Anne Ortegren would have loved to have seen that.
Pioneers! What an apt analogy — a rough path that requires great courage to survive and a community (in our case – patients, family, friends, doctors, researchers, government) that has each others’ backs.
I am happy for Ace. Younger, especially male sufferers sometimes get a more sympathetic response and that is good for all of us. Unrest got a write up and review in the Wall St Journal this weekend and while that was great, there were only 36 comments as of this morning, most from other patients or family. Then there were the well meaning suggestions and finally many that were just plain mean. So discouraging to still see how strong the stigma of CFS still is today.
Still lots of work to do…We will prevail!
Pioneers is good. There have always been pioneers. When 1st diagnosed, I was told to expect no one to understand and to be considered much like the lepers.
It is largely true but worse so now than in the 80s due to the positive thinking movement.
Pioneers forward for change.
CAN’T THANK YOU ENOUGH ACE!!!!!!
Incredibly Ace’s post has now brought in almost $31,000 (!)….
https://www.crowdrise.com/o/en/campaign/in-honor-of-the-anbenders-lets-find-a-cure-for-cfs
Awareness is so critical, without it there can never be understanding. My immediate family (three people) are really the only support system I have. My parents and my husband. My mom has CFS, as do I. I have lost most if not all of my friends, as has she. My small extended family doesn’t really understand it either, many don’t want to and just put their own spin on what might be wrong with me without making the effort to know more. I can’t even get family to watch Unrest. It’s deeply hurtful to me, but life goes on. At least I have the small support system that I have. Three people is better than none, and I know some have exactly no more than that.
My husband, as a Christmas gift to me, started a CrowdRise fund for SolveMECFS. In about 3 weeks we raised $2700+ from mostly people who have never met me. Barely any friends contributed, but a handful of family members did. The majority of donators were all strangers to me — which was astounding in a way. $2700 is small potatoes but, but it’s something and we were proud of that considering our small circle of support. My husband then contacted Ace after hearing about his recent blogpost. After learning about my husbands fundraiser, Ace became inspired to launch his pheonominally successful fundraiser in response — and MAN did it take off!
Point is, my husband and I didn’t get an overwhelming response (although we did surpass our goal of $2000 which was GREAT!), but our actions to come out in the open about ME/CFS (inspired by Unrest) touched off a chain reaction of events that resulted in a huge fundraising success. It was the proverbial domino effect.
One voice, one person, can truly affect the world. Someone just has to take the first step. In our case it was Jen Brea and the film Unrest that motivated us, as it did Ace to write about it on his blog. And our fundraiser inspired others to do the same and blow it out of the park.
ME/CFS is having a moment of sorts, and it’s because of people like you and I and Jen and Ace, etc. I only wish I could get the same overwhelming support in my personal life, but I’m so thrilled his fundraiser has taken off like fireworks. It was an amazing thing to watch taking off. Purely inspirational.
Isn’t it something how it starts and spreads – one person opening the door for the other. $2700 is great by the way…That’s how we beat ME/CFS – one donation at a time. Thanks for telling how this all came about. I love feeling the connections.
Promoting the idea that ME has no research nor treatments “because men hate women” is a very bad strategy that creates unnecessary animosity. It is wrong and wrong-headed.
Divide-and-conquer is the favored strategy of corporate masters and Dear Leaders everywhere and serves to distract us from looking at the parties who are actually responsible for our suffering.
Don’t fall for it!
There is absolutely nothing to be gained by fighting over who are the biggest victims. One-half of the population did not create and enforce the Policy of No Research for ME. Rather, it was created by disability insurers to protect profits, and enforced by psycho-babblers to enhance their fiefdoms.
Nathalie Wright’s article titled “Time for Unrest: Why patients with ME are demanding justice” [1] lays out the sordid story in a major UK publication. Anyone who doubts the role of the insurers needs to read the article, and then read it again.
We have been kicked to the curb for corporate profits. That is the real scandal behind our suffering, and it is also a story that the general public can understand and get behind.
We need to promote that narrative and use it to push for proper investigations and litigation. Only then will the Policy of No Research be replaced with an effective research program and a policy of treatment and social support.
[1] http://www.independent.co.uk/news/long_reads/why-patients-me-demanding-justice-millions-missing-chronic-fatigue-illness-disease-a8133616.html
ON the other it can rally half the population to get the medical treatment they so richly deserve. That’s a force that would not be denied.
The thing is – the pattern is clear – women dominated “invisible” diseases that cause pain and fatigue but rarely kill get hardly any funding from the NIH despite the fact that they effect tens of millions of women, cause enormous amounts of suffering and economic losses. Best not to stick our heads in the sand on this one.
ON the other it can rally half the population to get the medical treatment they so richly deserve. That’s a force that would not be denied.
The thing is – the pattern is clear – women dominated “invisible” diseases that cause pain and fatigue but rarely kill get hardly any funding from the NIH despite the fact that they effect tens of millions of women, cause enormous amounts of suffering and economic losses. Best not to stick our heads in the sand on this one.
Corporations are not stopping the NIH from funding ME/cFS or FM or migraine!
Wow, how cool!
I am very grateful for everyone who fights for us in this disease. Politics are not necessary as I have seen neglect from left and right male and female.we are all one and we need to stay as one and help each other in any and every way. We can create positive ripples by even small acts. Ace thanks for your effort it is always appreciated when one goes the extra mile.Cort as always you have been a true leader in our common cause. One of the paradoxes I find is that when we fight and stand up when we are literaly down people say see your not that sick. If you are at about 20 percent fuctionaly and it takes every positive emotion and doing everything perfect in your life to get to 20 percent people will say if your positive think positrive you can be better than that. If you force a smile and a laugh while you feel like your dying people say there is nothing wrong look hes laughing. I laughed through three cancers also literaly from this disease but no one thinks cancer is nothing even when you laugh at it. So I stress to everyone I meet the truth which is cancer is direct outcome of this disease. secondly cancer may kill me or heart failure at some point but it does not incapacitate and stop my life like this disease. I think that makes an impact on the way people see this disease. I guess what Im saying we have to use our own examples on how to reach out and help people understand the impact this disease has in a way that they can relate to. Just my two cents. Stay positive everyone and God Bless
Well done, Ace! Thank you, Cort for telling the story, I tend not to keep up with Michigan football. What a revelation! Our wealth might well be in the stories we are courageous enough to tell and the unlikely allies we find in the process.
Thank you for getting your story out…I’m so impressed with people so sick that still stand up for CFS/ME. I have found hope in H2O2 inhalation therapy. I’m going on my third week of therapy and was herxing for two weeks now I’m improving. I’m sleeping much better and have more energy. It’s on YouTube if anyone wants to give it a try. Good luck and God Bless !
Good luck Matt, and thanks for sharing 🙂 Please keep us posted
Inspiring story. Thank you for sharing it!
May we all identify our realm of agency – whatever form it may need take and whatever limited size it may be – and use it.
Reading Aces article lets me know that I’m not alone and reading every reply lets me see that there are others suffering from every corner of life. I’m one. I’m 63 and living with my 81 and 86 year old parents. I lost my job, I lost my home, I lost my boyfriend, I’m on disability and I’ve been with my parents over a year now with no end in sight. I feel that my life is over and see nothing ahead. One day I awake feeling a bit clearer, a bit less pain and not as fatigued. The next day my brain is gone, pain rages and my whole body is cacooned in weird sensations that begin in my head and cascade to the bottoms of my feet. The world is surreal and I’m swimming in wavy disorientation every day. Yes I’m out here too and have been touched by support only from my parents and children. My brother and his wife deny my illness and have disowned me and our parents. He says there is no proof and that my parents shouldn’t help because if I had made better choices in my life then this wouldn’t have happened. Nice! Just what we all needed in our house of suffering. I have no friends, I don’t get out, it’s the reality of us with this disease. I’m happy that Ace got support. It’s what we all need because our hearts are broken. Let’s hope for a cure together. Listen to our stories and send love and compassion to all that suffer with this life extinguishing illness.