LindsayIn this post, I’m actually going to talk about an illness I don’t have: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Prior to my postural orthostatic tachycardia syndrome (POTS) diagnosis, I was diagnosed with ME/CFS because many of my symptoms were the same: extreme fatigue, muscle pain, post-exertional malaise (worsening of symptoms after activity), sleep difficulties, autonomic symptoms, headaches, sensitivity to light, etc. When you compare the symptoms of POTS and ME/CFS, they’re actually very similar. However, POTS can be diagnosed with a tilt table test, and there is still no single definitive test for ME/CFS. Once I failed the tilt table, it became obvious that my symptoms were caused by POTS.
Recently, I watched a documentary called Unrest. It’s the story of (and directed and produced by) a young woman, Jennifer Brea, who has/had severe ME/CFS. The documentary is composed of Jennifer’s early video diaries, interviews with specialists and other ME/CFS patients, and information about the history and current status of ME/CFS. I should probably disclose that I contributed to the film’s Kickstarter fund and received a free copy of the movie as part of my support, but I do not receive any benefit for reviewing the film, or if you decide to watch it.
I finished the movie 3 days ago, and haven’t been able to stop thinking about it since, because it was that impactful. It’s beautifully shot, and it’s raw and existential and poignant. It does an amazing job of highlighting the problem with the prevalence of illnesses like ME/CFS and POTS, and the meager funding allocated to such illnesses. ME/CFS affects over one million people in the US, POTS is estimated to affect between 1-3 million. They’re not rare.
And I can honestly tell you after watching this movie, I had no idea. Even living with one, I had no idea how severe and isolating chronic illness can be, or how tragic. That people are still able to find reasons for living is truly humbling.
The film premiered at the Sundance Film Festival and won the Special Jury Award. It is one of the most honest and intimate accounts of illness that I have ever seen. Friends, this movie is worth an hour and a half of your time. You’ll shed a few tears and you’ll fall in love with Jennifer’s husband, Omar. If you have an invisible illness, the movie will make you feel less alone. If you don’t, watching a woman put her feet on the ground for the first time in 6 years (not even stand up, just sit up in bed with her feet touching the ground) will make you grateful for your life.
I believe that illness is genetic and environmental, but it’s also random and unforgiving, and there’s no rhyme or reason to who it captures. I believe there’s a cure for everything, we just haven’t found most of them. And I believe that those of us who can put our feet flat on the ground, who can leave our beds, must bear witness to those who can’t. Because if we’re not certain that a falling tree in an empty wood produces a sound, how can we expect patients to live if they’re never seen?
Friends, please consider watching Unrest. The movie is available for download via iTunes, Amazon video, Google Play and other platforms. It will be available for purchase on dvd in December. And, on January 13th, 2018, a theater in San Diego will host a screening (click here to check for screenings in your city). Read about ME/CFS here, or check out my blogger friend’s site about ME/CFS here and here. Search for severe ME/CFS on YouTube and watch a few stories. Part of understanding our world better, is understanding its suffering.
“This illness destroyed my life, but what it showed me, I could never give that back. I want to be well, I want to wake up tomorrow and be well, and yet I am grateful for every inch of my life. I am still here. I am still here.” – Jennifer Brea
Smell ya later.
– Linds
I have heard so many amazing things about this film and really need to watch it. I was also originally diagnosed with ME. xxx
i think the film does a great job of showing the side of illness that the public doesn’t see – that we might be able to go out to a party for a couple of hours, but we’ll pay for it later.
That’s so true. People only see the one side and not the actual reality of it. I’ll have to watch it! xxx
Just bought it on XFINITY, watching it now with Andrew… Talk to you after… I thank you!!!
i’ll be eager to hear what you think!
Amazing film!! All the emotions… Understanding, anger! (Denmark!!!), fear… I’ve gotten worse, am I going to get more disabled?? I’m missing out on so much of life… and now I’m getting older, will I just get weaker? So much I want to do! Does my family care? I’ve lost my friends, almost all, only have one that lives near. Should be in the hospital many times, but they don’t do anything! So cry and tough it out at home. So much like the movie… Was told I had CFS at 16 from Epstein Barr virus. Have never been normal, HR 200 was normal for me. Found out it was POTS when I was 49 after a long struggle. I want everyone to see this film!!!
Looked for your name at the end… Couldn’t find it…????
right??! so emotional.
i didn’t watch through all the credits, so i’m not sure if my name was displayed. that may have been a higher donation level – i got a copy of the film and my name on the website wall of appreciation.
I’m so thankful Unrest was made, and you are sharing more info about it. It’s important ppl see what chronic illness can mean. When someone hears Chronic Fatigue Syndrome, it sounds like “tired” to them. If this can be that bad, then they can begin a compassion stream for other illnesses- all of them I hope.
Idk if I’ll be able, emotionally, to watch it as it sounds so very close to home. But I’m certainly sharing it!
There’s also a new doc being made called Becoming Incurable that covers 3 different people/conditions.
Have a nice weekend. I hope you’re feeling vertical today xo
thanks for sharing about Becoming Incurable, i hadn’t heard of it. i’ll have to check it out!
Well thank you!! I was hoping for more interest from my family, but you know how that goes 😞
Hi guys! Thank you so much for this!
I have ME, POTS and mast cell activation disorder, which along with EDS appear to be genetically related. Some people have one of four. Those who are worst off frequently have four of four.
I suppose I wonder – for folks who are diagnosed with POTS, why would that mean that you don’t have ME? 20-30% of patients with ME have POTS (I actually think it’s more than that). It’s so common, orthostatic intolerance is actually part of the Institute of Medicine’s proposed diagnostic criteria for ME (https://www.ncbi.nlm.nih.gov/books/NBK284910/box/box_7_1/?report=objectonly). But not all patients with POTS have ME.
I know people with POTS who *don’t* have ME – that is, they are not exercise intolerant and don’t have muscle fatiguability or cognitive dysfunction. And I know many people with ME who will fail a tilt table test.
Thanks for visiting my blog and commenting! When I was diagnosed with POTS, part of the ME/CFS criteria at that time was that the substantial impairment in the ability to do pre-illness activities, fatigue, exertional malaise, etc. occurred without any other attributable cause. In my case, POTS explained all those symptoms, so with my POTS diagnosis, they abandoned the ME/CFS diagnosis.
Now that both POTS and ME/CFS are being studied more, we know it’s not that simple, and there are common comorbidities, like you mentioned. In many ways POTS and ME/CFS are so similar. Exercise intolerance and cognitive impairment are also common symptoms of POTS, although typically not to the same extent as portrayed in Unrest. Although POTS patients have difficulty with exercise, in the long run it can result in an improvement in symptoms by increasing blood volume and promoting venous return.
I have a few POTS friends who I suspect also have ME/CFS, but because the diagnostic criteria for ME/CFS with exercise intolerance is so similar to POTS, I wonder how they will ever get an ME/CFS diagnosis. I can’t speak about ME/CFS specialists, as I have never seen one, but I suspect a POTS specialist would tell a patient presenting with exertional malaise, substantial impairment in activity, extreme fatigue, cognitive impairment, etc., that it’s part of their POTS.
https://link.springer.com/article/10.1007/s11910-015-0583-8/fulltext.html
I’ll never forget reading your and POTSgrrl’s descriptions of POTS and sending links to all my family members: “I’ve found the answer!” But my HR doesn’t go up high enough for that Rx. My doctor thinks OI might be a lot of my symptoms, though. And MCAD. I was dealing with anaphylaxis and syncope years before ME and when ME devastated my life, I had no idea that these conditions had anything to do with one another.
I’m very hopeful that Unrest will get the word out to more able-bodied, healthy allies. Thanks for this post, Linds. OH! And thank you for linking to my blog!!! That’s it, I have to start writing again (my cognitive symptoms this year have really made it difficult — can I just keep reblogging your posts? 😌).
You can just copy and paste all your brilliant FB posts into a blog post!
Even if your HR doesn’t rise enough for POTS, it sounds like you still have some kind of generalized dysautonomia. It’s interesting how all these illnesses intersect.
And by Rx, I meant Dx.
I didn’t even notice 🙂
This is all very interesting. I’ve seen some interviews with Jen Brea where she talks about also having POTS, which is obvious to me because I notice that she sits with her feet crossed and not on the floor.
I have POTS and have been diagnosed with ME by two ME specialists, even though I wouldn’t say I have the kind of post exertional malaise that most with ME get. Exercise really flares my POTSsymotoms, but for the most part, being up and around helps me feel better, and I don’t seem to really pay for overexertion even though I feel terrible while I’m doing it. I’ve got the recurring fever and swollen lymph node aspect, but I still feel all of my fatigue and everything is due to dysautonomia.
I understand that this film was trying to show that ME is a real disease. In my opinion, in practice, the ME diagnosis remains a wastebasket, but I believe that within that wastebasket there is a real disease that involves the mitochondria and an actual issue with making enough energy on the metobic level, as explained in the film. Some people who have the ME diagnosis probably have this illness that involves making enough energy to meet demands, others may just have dysautonomia, others may have both, and others may have god only knows what. But until there’s a biomarker, and until they can start splitting people up into subgroups, it’s really just a wastebasket, and I believe that unfortunately research will be unsuccessful in terms of finding cause and treatment because of this issue.