Health TED Fellows

Illuminating an illness without end: Fellows Friday with Jennifer Brea

Posted by: Karen Eng

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Three years ago, Jennifer Brea, then a PhD student in political science, was struck down by what appeared to be a severe flu. It turned out to be the beginning of a long illness — including neurological dysfunction and extreme exhaustion — that she has yet to recover from. Discovering that the medical community did not recognize her illness and worse, dismissed it as hysteria, Brea did her own research and discovered that there is a name for what she was experiencing: myalgic encephalomyelitis (ME), a devastating, misunderstood and ignored disease affecting millions.

To call attention to the plight of those suffering from ME, Brea is making a film, titled Canary in a Coal Mine, to offer firsthand insight into what it feels like to live with this debilitating disease. Its Kickstarter campaign, launched just days ago, has already almost met its target, a clear indication that the time for this film has come. Here, Brea tells the TED Blog her story.

When you did you become ill?

I first became ill in 2010. I had 104.7-degree fever that lasted for 10 days. A year later, in 2011, I was at a restaurant with some friends. The check came, and I couldn’t sign my name. I would look at the paper, and I couldn’t move my hand. I found I could no longer draw curves or circles. Over the course of the next day, I went in and out of periods where I would be totally lucid, I could understand everything anyone was saying to me, but became completely unable to think in any language. It was a little like being a dog. I could understand speech, and I could conceive of things in general impressions, and pictures, but there was no monologue in my head.

That sounds terrifying.

I think in some ways it was actually a blessing, because I could not be afraid of what was happening to me. Something I’ve learned is that in order to experience fear, you have to be able to project the future, and for that you need language. You need the future tense. You might even need the past tense. I was living in the present, and that was all that there was.

My neurologist told me I was suffering from conversion disorder: my illness was caused by stress or a psychological trauma that I might not even recall. Although my physical symptoms were real, there was no organic basis of my illness. It was all very Freud.

This doesn’t speak very well for doctors.

Since starting the film, I’ve become much more sympathetic to doctors, because it’s really not their fault. It’s a product of the training they have received. They’re taught to cure the world’s known diseases, and my disease is not taught in medical school. So if they can’t put me in a box, they can’t treat me.

That said, I was shocked. It was the first time I had ever been not taken at my word, had ever been condescended to like that. I started to wonder, well, if I — with my personality and education and privilege — am being treated that way by all of these doctors, what the hell is happening to people all around the country? What would happen if I were walking into a public clinic, or if I’m in a rural area? And what if I’d been someone who hadn’t had the education to feel like I can challenge people who are in positions of authority? This is one of the reasons I wanted to make this film.

Brea and her husband Omar. Still image from Canary in a Coal Mine.

Brea and her husband Omar. Still image from Canary in a Coal Mine.

What were you doing while all this was happening?

Throughout this experience, I was doing tons of research. I was getting my PhD in political science, but I was also doing a master’s in statistics, and so had some training to know how to read and understand research. My husband and I were just constantly reading. We’d go to the doctors with stacks of journal articles, and they would say, “Where did you find that, on the internet?” I’d say, “Yes I did. Here’s an article from Nature, here’s an article from Science, here’s an article from the New England Journal of Medicine.” I had one doctor actually make a guttural sound when he tossed the articles on the floor. I mean, I was really naïve — I didn’t realize that most doctors don’t read medical journals. It’s just not the way that system works. Even one researcher — who was a fantastic doctor — was not reading anything on my illness that was being done by people in other fields. She was an infectious disease doctor, but she wasn’t reading what’s happening in immunology, or people who were looking at gastrointestinal stuff.

What’s the difference between chronic fatigue syndrome and ME?

Chronic fatigue syndrome was a name created by a CDC committee in 1988 in response to a series of outbreaks, most notably the Incline Village, Nevada, outbreak of 1984. It was really unfortunate, not just because the name sucks, but because one, there was already an internationally recognized name for the disease — myalgic encephalomyelitis — and two, the definition they came up with said nothing about some of the most severe neurological and autonomic dysfunction many of us experience. So some of our most devastating symptoms are said to be impossible because they are not in the definition.

The horrid name and the exclusion of those symptoms means that many people diagnosed with CFS probably don’t have ME. A lot of people want to lump chronic fatigue syndrome, fibromyalgia and so on into one group. I think we need to study people who are patently self-similar in terms of their histories and symptoms and stop saying “It’s all very murky” when the murkiness is man-made.

That said, I do, at the end of the day, think that strict diagnostic criteria are useful for clinical trials but harmful for treatment. Our bodies don’t obey medicine’s boundaries, and I don’t think many diseases do either. For example, I’ve learned through my own research that what is probably happening to me right now, physiologically, has a lot in common with certain features of multiple sclerosis, HIV, diabetes and certain genetic mitochondrial diseases. Now, who would ever think those literatures should be speaking to each other? But they should be.

When did ME actually get named ME?

There have been hundreds of cases of ME outbreaks documented in the medical literature going back to the 1930s in places as disparate as Los Angeles, South Florida, Iceland, London and Durban. In the 1930s, doctors first thought that it was a new kind of polio, and in fact, you would often see ME outbreaks happening alongside outbreaks of polio. They even wrote journal articles about how one might distinguish between the “typical polio” and this new disease.

In 1955, there was an outbreak in London, at the Royal Free Hospital. Nurses and doctors — but mainly nurses — came down with the illness, and a doctor who was treating patients there started doing more research and writing up reports. At around the same time there was an outbreak in Iceland, one in Scotland and one in Durban. So researchers were writing about this, and sharing the information in their medical journals, and they were citing each other. People knew it was happening.

Often the disease was named for the place of the hospital: Royal Free Hospital disease, or Iceland disease. In 1956, Melvin Ramsay coined the term myalgic encephalomyelitis. Myalgic, meaning muscle pain, encephalo, meaning brain, myelitis, meaning the peripheral nervous system, the spinal cord and so on. ME was ultimately recognized by the World Health Organization and got its own diagnostic code in its International Classification of Diseases. So there is technically a diagnostic code in the US that one can use, but no one ever does.

In the mid-1980s, there was an outbreak of ME at Incline Village, Nevada, a small community near Lake Tahoe, where several hundred people over the course of just a few years came down with a severe, flu-like illness, which then progressed into these strange neurological symptoms that we know are typical of ME. It affected their cognitive ability, their ability to add and subtract, to write and to speak. The town doctors called the CDC, and said please come down, something really crazy’s going on here. When the CDC experts came, they did not actually see any patients. They looked at a few charts, skied and made up their minds that it was a case of mass hysteria.

Do we know yet what causes it? If it’s an outbreak, that implies that it’s either an infectious disease or an environmental disease.

Possibly both. First, the infectious component. There are many anecdotes that suggest a temporal and spatial commonality: five teachers in a lunchroom, or four kids who go out sledding trip, come back, and are never the same. When you see that you think: contagion.

No one really knows what the virus is. I can tell you that from the researchers I’ve been talking to, it seems that it’s possible the trigger could be one of several viruses within a family of viruses. It might be triggered by an enterovirus or a herpesvirus, of which there are several. The tricky part is, you look at someone with ME, and they often have high concentration of a number of viruses which can cause some very nasty neurological effects. These are common viruses that most people will all have once they reach a certain age, but our immune systems can’t suppress them. The question then becomes, did these viruses cause this illness? Or are they opportunistic infections arising as a result of an acquired immunodeficiency?

Some say that you need not just the presence of a virus, but an individual who is susceptible. There may be genetic factors: there are several people who contacted me where multiple family members are sick. There is certainly a huge gender dimension: 70–80% are women. There may also be an environmental factor. We know that environmental toxins can alter immune systems and make certain individuals more vulnerable to infection.

It’s really complicated, in part because patients often go years before they’re diagnosed. Doctors and scientists are in essence trying to reconstruct the Big Bang: no one was there for it, causation is really hard to tease out, and so all you really have are your theories.

This idea of the importance of individual factors is not so strange when we look at some other infectious diseases. Prior to the vaccine, many people who became infected with the poliomyelitis virus were asymptomatic, others became ill and recovered with no lasting damage, while others were severely paralyzed for life. Diseases are always multifactorial, so saying ME is “complex” is true but a nonstarter.

What’s the state of research on ME?

There’s a body of literature, but very little funding for research. There’s more funding for male pattern baldness in America than for ME. The research that has been done clearly shows: 1) we have things wrong with our immune system, 2) there’s clear evidence of neurological damage, 3) there is severe mitochondrial dysfunction and 4) there are some very interesting things happening in our microbiomes.

So there are around 20 different ways that you can triangulate this disease with specific tests, if you knew which tests to run, but there’s no biomarker. That really confused me at first. What do you mean there’s no biomarker? By doing a more sophisticated analysis of EEG data, we can, with a very high rate of accuracy, identify this disease; we can look at things like cytokine markers, or natural killer cell function. We can look at cerebrospinal fluid and mitochondrial function. Some of the abnormalities you’d find are not unique to this disease, but the joint probability of X, Y and Z all falling into a pattern in a single person and that person not having ME is basically zero.

But what we really need, I am told, is a commercially deployable test, a single thing that we can measure that makes it simple and scalable. And I don’t know if we’re ever going to find that, but even with our current technology, if doctors ordered the right tests and knew the symptoms to look for, I think that they could be diagnosing this now. That’s not happening, and doctors don’t know about the science. So in the doctor’s office, I have “hysteria,” and then when I talk to scientists, I have a really mysterious, fascinating disease. And they tell me, here’s how your disease is like AIDS. And here’s how your disease is like multiple sclerosis.

It’s a really tragic thing — there are a lot of people who are severely mistreated because of this. There are people who are getting locked up in psych wards. There are people who are encouraged to exercise and, as a consequence, are permanently harmed. There are parents whose children are taken away from them. There are people who become homeless. It’s just really hard for me to fathom the waste of life that this tragedy has created. This happened with multiple sclerosis before we had MRI machines, and we used to put people with epilepsy in psychiatric wards. So this is nothing new. I’m convinced this will happen again with another disease, even when this one is solved, unless our entire approach to medicine changes.

How hard is it for a patient to get diagnosed? And once you suspect you have ME, what does one do?

There are a few doctors who are knowledgeable, and it’s really good to find one of those if you can, but you’ll probably have to pay out of pocket, so it can be quite expensive. Many tests require a research lab; they’re not something most people would have access to. There’s a woman we interviewed who was taking an experimental drug that can cause amazing remission in some, but it costs $40K a year.

There’s really no clear treatment. Patients try different things — antivirals, immunomodulators, or Ampligen, which is an experimental drug that works extremely well in a subset of patients. There’s no magic bullet. You have to try different things until you find what does. So much of the information we are working from is anecdotal. There are definitely people who are able to find some improvement from the off-label use of drugs, or through nutritional and dietary interventions, but many never return to the health they had before.

The most important thing when you get this is complete bedrest. I so wish I had known and been advised to do that, but I was a PhD student in the middle of a hectic semester. And culturally, taking care of our bodies really comes way below a strong work ethic and measurable success in our ranking of priorities. With this disease, you do not exert yourself, you do not exercise, or you will pay. Unfortunately, that is exactly what most doctors will tell you to do — exercise and you will get better — even though that can lead to a permanent worsening of symptoms.

What prompted you to make the film?

Before I became ill, I had never had the experience before of being so voiceless and so powerless. I was frustrated, and I needed a some place to put that. At that point, I had almost completely lost the ability to write. Ordinarily I would journal, but I was unable to do that, and so I started doing these video diaries on my iPhone, really more of a personal thing, to just try to process what was happening. As time went on, I became more and more enmeshed in the community, and I realized there was a broader community.

I was also reading Osler’s Web by Hillary Johnson, about the outbreak in Incline Village that happened in 1984 — when I was two years old. I thought, it’s been 20 years since this big outbreak of my disease happened, and the social space around it, the interaction between the medical community and people with my illness, has barely changed. I also watched a film made in the late ’90s called I Remember ME, and throughout, there’s this really hopeful kind of message of, “Change is just around the corner.” I was in high school then.

I had this sense that the clock had been ticking away my whole life. Everyone living in their moment always feels like they are on the cusp of change, yet little has changed. And if I just sit here and do nothing, there’s a good chance that 30 more years will go by, and we’ll be in exactly the same place. I felt I had to put all my chips on this and make a film that would break through the bubble of the way people perceive us. And so I thought, I’m not a Hollywood celebrity, but I have some resources, and I’m sick but I’m not nearly as ill as some people are. I can move my hands, I can go to the bathroom. That’s enough for me!

I also hope to convince more scientists that this is not only a really serious illness worthy of their attention — it can cause death in severe cases — but it’s also a fascinating puzzle. Doctors find mysterious illnesses annoying and hard to deal with, but scientists want to go to the frontier. And I think that’s where we are with ME. All the exciting stuff happening in science is where our disease lives. It’s about the non-human components of our body — our microbiomes — and the smallest parts — our DNA, and everything that’s intracellular: organelles, protein coding, epigenetics and mitochondria. Not only do you have these systemic biochemical changes that can affect what’s happening inside cells, but different systems speak to each other across systems in ways that we didn’t previously understand. It’s extremely fascinating. So I want to say to all those scientists: “Pack your wagon! Come out West.”

Brea and Kiran Chitanvis filming Canary in a Coal Mine.

Brea and Kiran Chitanvis filming Canary in a Coal Mine.

You’d never made a film before, so how did you go about starting?

I partnered with a woman named Kiran Chitanvis. She’s amazing. She’s not a documentary filmmaker; she writes and directs narrative films, which was a really great fit, because I was seeking to make a creative nonfiction film.

As important as the dry facts are, before you talk about needing biomarkers, or what the policy changes are that we need to see, you have to really give people an opportunity to know what it feels like to live with this disease. I don’t think that’s ever happened before. That’s what our goal is, really. It’s not the end, but it’s a good first step.

I don’t think that most people know how serious it is, and also we just don’t really have, in our cultural imagination, a framework for getting sick and then never getting well — collapsing when you’re 25, and then still being in bed 15 years later. We understand death, but we don’t understand life in prison, where disease is concerned. I don’t think that’s an exaggeration. Some of the most severely ill haven’t sat in a chair for seven years, or haven’t left their bed without a harness.

Have you started production?

We’re still technically in pre-production. We launched our month-long Kickstarter campaign on October 22nd. We’ve raised 90% of our goal in less than three days. It’s incredible. People are talking about this like it’s our one shot, or the shot we never thought we’d have. We are now pushing forward to raise our entire budget on Kickstarter. We started filming some preliminary interviews to create video for that campaign, and also to just dive in and begin to understand the story. We are making a feature-length film, so we’ll start production early next year.

The poor man's Interrotron: using iPads and Facetime for remote interviewing.

The poor man’s Interrotron: using iPads and Facetime for remote interviewing.

How will you participate? Aren’t you usually at home?

I’m hoping for a miracle, but absent that, we’ve been experimenting with two things. One, there was a shoot we did, with a woman in Toronto, where we hired a crew to film at her home. We’d made a shot list, and through Google Hangout, we were able to be in the room with her and the film crew the whole time, having a conversation about what was happening. So there’s a lot of remote directing, which is much easier to do now with Facetime, Skype, and iPads.

We also have a poor man’s Interrotron. The Interrotron is a device that Errol Morris developed back in the day for conducting interviews with subjects where they would look at him, but in looking at him, they were actually looking directly into the camera, using a series of teleprompters and cameras. The result is direct eye contact with the director, and by extension, the audience. We’re doing the same thing here, only we’re using modern and mobile teleprompters, each comprising an iPad and mirrored one-way glass.

When we shoot in New York, I’m there in an adjacent room, but because I’m interviewing over Facetime, I could be anywhere. I could be at home in bed, and I can send Kiran to London while I conduct the interview from Princeton, NJ.

What happens physically to you if you overextend?

All my symptoms get worse. I might just collapse: I’ll be walking and then just go pfft. I might stand up and have my heart rate go up — something called postural orthostatic tachycardia. That, for me, is what the dizziness is. It also happens if I eat starchy foods, because I have severe glucose metabolism issues, so I might eat too many strawberries and then, you know, drop to the floor. Often when I overexert myself, I can’t breathe. It’s not a question, really, of getting enough oxygen in my blood, although my breathing is certainly affected by this. But rather that my cells can’t breathe, because they cannot produce energy under aerobic conditions.

A lot of the things I do for my health are about treating myself as though I’m a long-distance runner, because that’s essentially what I do when I walk to the kitchen. I’m running a marathon, so things like pacing help, electrolytes. I’m also on a high-fat, ketogenic diet that was first developed for children with epilepsy.

There’s still more doctors to see, and there’s still a lot more treatments to try, but I have no idea what’s going to work for me. And the craziest thing about this is you find these people who are sick for 15 years and then the 300th thing they try, suddenly everything changes. And so I think that it’s really important not to give up hope, and to keep trying new things.

It’s been three years of your life now. Where do you think you might go once you’re better? Have you thought about going into medicine yourself now? Has your concept of your life changed?

I don’t really think a lot about the future. I think that’s a really important part of staying sane. I think that giving up the future is necessary, and it’s something that happens, gradually, without even thinking about it. It’s not about abandoning hope: I believe I can get better. I just have no idea when or how or what better will look like. So I focus on what I can do, right now.

Still, I do fantasize about having the chance to hang out in a research lab and entertain some of the hypotheses that bubble up from patients, but have never been tested. There’s a lot that may not be on the radars of doctors treating this and scientists studying this because they don’t have the access to patients that we do. We have ourselves and we are constantly self-experimenting.

I love telling stories, and I think that I have never before in my life found anything as magical or fulfilling as making film. This is definitely not my last film. It’s the one thing I’ve found that challenges me intellectually and creatively. I love being a researcher, I love doing academic work, but I also need to do mission-driven work. This gives me the opportunity to do all three. I believe that we will make a beautiful film and it will change things forever for our community.

It started as a project that was about helping me to cope with what I was going through, and it’s become about something so much larger than myself, more universal than my specific disease. There’s this weird feeling of “This will happen, it will work, because it has to.” It’s a feeling of when there’s something that is wrong in the universe, something that is unjust or untrue — there’s a kink in the line and all of that force wants to be unleashed. I believe that the universe wants to right itself.

Comments (20)

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  • commented on Nov 9 2013

    This is the best description of ME I have ever come across and I compulsively read blogs, journal articles and books by “experts”. Thank you for featuring Jennifer on this blog and thank you, Jennifer, for what you are doing. I have been sick for two years and have always imagined the ME documentary that I want to make. I’ve talked to my sister about it- how would we film it? Who has the knowledge? Where would we get the money? I knew I couldn’t do it, being in a constant state of panicked survival, trying to get better, wondering how we won’t wind up on the streets. Thank you for making the sort of film I would want to make. The sort of film we all need.

    ElizabethMilo.com

  • Grace Zarou commented on Nov 2 2013

    You have written exactly how I feel physically and mentally. I have a few differences and am interested if anyone replies. (I wrote a long reply before but I did something and lost it all! Typical.) one think I’m thankful for is spellcheck and my IPhone!
    I hope this isn’t the 2nd time I’ve sent this – but here goes:
    In 1981, I was in college in Boston. My then boyfriend had a weekend home in Shelter Island, NY. A few weeks after a visit (don’t remember timeframe), I noted a circular rash in my leg with a white spot in the middle. I thought it was a staff infection from living in the dorm. Unfortunately, I punctured the middle, trying to treat it like a pimple. Since it was on my upper thigh, I didn’t push the right way and the infection expressed into my thigh, making it 100% worse. After realizing it wasn’t getting better and I was becoming physically I’ll, I went to a doctor who was horrified. He lanced it and expressed it and gave me antibiotics (I assume). After many weeks of treatment, it started to heal. That was October. In February I woke up one day with a face that was swollen and puffy and my eyes were swollen almost shut. Walked to Mass General and was diagnosed with viral encephalitis. This was obviously a Lyme tic that most likely was in that infected bullseye. Lyme was just beginning to be noticed in CT, so no one knew this was Undetected Lyme. Since it was a virus, I just rested and ended up sleeping in my dorm room for a month. Won’t get into my roommates and nurses reactions to my sleeping non stop. Suffice it to say, I was ignored. However, I did get better. During the next at minimum 5 years, I had frequent illnesses and would have a simple cold that turned into high 104degree fever with hallucinations. I also developed severe panic attacks starting around 1984/5. However, I was truly better. I worked a high-stress job in one of the top venture capital firms, and then worked in research for a offshore fund. I had many friends, went out, dated, was a serious pianist (since age 5), water skier and golfer a exercised every day. In 1986 I married. In 1990, I had my first son and in1993 had my second. BOOM! This is when, after an apparent failed epidural. I couldn’t get out of bed, could just care for the baby by having him next to me. I had a massive headache, exhaustion, and suddenly an optic palsy on the 6th nerve. Had solumedtal IVs for 10 days. Then developed MVP, which is harmless, but it was a fit in the picture. I was told by my father (in a very serious and caring way) that this was mental. I remember being incredulous that my physical symptoms were put out the window. My husband was okay at first, then was so “on the run”, which did cause me to have extreme hostility and anger.
    After I recovered I was working part time out of the house for the off-shore company, raising two young boys, moving into a new home, taking aerobics classes almost every day. I was extremely happy and well.
    Jump to 2003. I had gone through a difficult divorce, but was as active as before, but add in certified aerobics and personal training. Taught, worked, nurtured, cleaned, got counseling for boys and myself, but was extremely sad. One environmental thing happened – don’t remember when – behind an old dirty truck that backfired and me being in convertible, inhaled all of those fumes.
    Remarried the Shelter Island boyfriend! Happier than ever. In Nov. 2002 had bulging disk and had epidural and cortisone shot through radiography. In Jan. Started gaining weight at alarming rate and was exhausted. in Apr 2003, came home from Florida vacation and collapsed. Had excruciating pain similar to 1993 but 100x worse. Pain started in roof if mouth and it felt like a muscle was pulling every fiber from to top of my mouth, through the top of my head down my spine and legs and arms. Went crying to doctor (forgot to say developed cold with bronchitis). Tested – nothing – told me to go on prozac. Said, “what do you think you have cancer! Changed doctors 3 times all nit the 4th promising to get to the bottom. Finally had Test that said: active Epstein Barr. And the nurses were saying, I’m sorry! Doc. Sent me to LLMD Joseph Jemsek. (Lucky has he’ll he was miles away). 2 separate tests came back positive for Lyme. By then I had at least 30 different symptoms. Went on IV antibiotics for 9 months orals for another 6. Told Jemsek I thought was was toxic and dying. Took me off abx and managed nerve pain and tried to deal with exhaustion. Was better but declined and have been basically bedbound. Occasional bouts of feeling well. Have completely lost ability to do anything I once did. Basically husband angel drive kids around and I managed their needs from bed or couch. Husband cooked and cleaned. Boys were and are fabulous! I eventually became extremely depressed, crying fiercely for no reason. Seeing psychopharmacologist. Dropped from insurance. Cannot work, pay bills, clean, cook, drive, take dog out. Have become isolated and forgotten. Still have ability to talk and understand higher level thinking, but have confusion with conversations, lost short-term memory, cannot exercise relapse, climb up stairs if downstairs too long, attempt to do what I did. Have lost any semblance if relationship with my brothers (think it’s medication and I’m an addict and I just need to join the Y – and more). One fab. From sister-in-law who gets it! My mother gets it at 85, husband gets it. He’s been insulted by my family for not making more money with his 1-shop company. But the physical problems are truly beyond baffling to doctors – though they do the best they can. Now my kids have grown up, one in college, one graduated and working. Proud of them. But I feel like I lost 13 years of their life. Why did I get worse? Why do others get sympathy of church, but I’m ignored? Why don’t my brothers understand or care! If I had MS or cancer, people would have arranged walks raise money for the cause.
    I was diagnosed in 2006 with MECFS by Dr. Charles Lapp. Cannot afford to try ampligen or testing or visits. Diagnosis peace of mind, but is this it? It it weren’t for children and mother, I’d be gone by now. My husband would be better off without me. Think if suicide many days / looking forward to this research.

  • Susan Weilbrenner commented on Nov 1 2013

    Thank you so much for doing this! I was diagnosed with CFS when I was 14 years old and even with a diagnosis, the name is so ridiculous that most people dismiss it as being “all in your head” and the stress from that disbelief just makes it worse. What kind of doctor can I go to in order to get a more definitive diagnosis? Should I find a neurologist, immunologist, or some other doctor?

    I was in a severe car accident (not my fault) 6 months ago and I am still having a very difficult recovery. I have been in constant pain (more than usual) and the brain fog is 10 times worse than ever. Convincing an insurance company that there has been a tangible loss is a difficult, if not impossible, task since I am a stay at home mom and work from home (my husband & I run a training & education business), so I can just work when my brain clears, even if it’s at 3 am. Still, my work suffers, in quality and timeliness, but I can’t prove it, which is so frustrating. My doctor is now suggesting fibromyalgia, but I have to do more research on that as well.

    I am so grateful to you for bringing this into the spotlight and helping people see that this disease is more than what the US term for it implies. I always tell people: “You know how you feel when you get the flu, that first day when your head hurts, you can’t think, your body aches all over, and you are so tired that you can’t get out of bed? Multiply that by 10 and that’s how I feel on a good day.” That helps them understand, but it doesn’t convince the non-believers (which is a ridiculous term, I know, but it fits). I have to communicate via email or other written communication because I will often have so much trouble focusing my thoughts that I cannot effectively communicate verbally, especially over the phone when the other person cannot see my non verbal communication. All of my business dealings are done in writing, never on the phone, since otherwise I will miss something or forget it ever happened. It can take me an hour to write a half page email because I cannot focus my thoughts enough to get it right the first time. Recently, I was in a panic because I couldn’t find a form I had to complete for my son’s school. I called them to ask if they could send me a new form to complete since I lost the other form and they told me I had already completed it and sent it in. I still don’t remember completing it or mailing it back! Times like that are so embarrassing and it is hard to live like that when I know that if my brain would just work, that stuff would never happen.

    Thank you, thank you, thank you! I cannot say that enough – you have brought light to a very dark corner for so many people.

  • Tanya Marlow commented on Nov 1 2013

    This is an outstanding summary of ME and the complex issues surrounding its definition. I am tremendously grateful to you even for this article, which outlines the issues with such clarity, and I am beyond excited about the film.

    I can relate to much of what you wrote. For eighteen months after giving birth, my ME was so severe that I could barely read or write, or understand speech if someone spoke for longer than thirty minutes. It felt like I had been silenced – and when my brain started coming back, I was desperate to speak again. But my socialising energy was so limited that I turned to writing, and that’s when I began blogging, mainly as a way of saying to the world, ‘I am still here. I have thoughts.’

    I am in the UK, and like you, also have that feeling of responsibility and opportunity: I have it mildly enough that I have good brain function, but severely enough (I am housebound, needing to spend the vast majority of the day in bed) that I see the need to achieve change for the ME community.

    I am adding my own voice, in my own way: currently writing a creative non-fiction book about how it feels to have ME. So many people say that they are groping for metaphor when it comes to explaining what it’s like to friends and family – I want to bring those metaphors within easier reach. I am also telling my story of battling with the NHS (the UK’s medical system), in the hope that exposing some of its abuses will influence people’s awareness.

    I’m cheering you on in this important work, and I will do everything I can to make sure this is as successful as possible.

    THANK YOU.

  • Jen Blood commented on Oct 29 2013

    I could just cry in relief. This is exactly what I’ve been going through for the last 8 years. I have a few other things on top of it like epilepsy, blood clotting disorder that leads to pulmonary embolisms, cluster headaches, joints and the bottom of my spine fusing together, and 50% of the immune system others have. Trying to get a doctor who is actually willing to try, or who cares in the smallest way, has been like finding a needle in a haystack that’s 5 stories high.

    I have been treated so horribly by doctors, especially in emergency situations and when I’m in pain. If one person decides (WRONGLY) that I’m a drug-seeker, that gets passed on to everyone else… And I get told “you need a therapist”, “I’m gonna treat you if you’re actively dying, but it looks like you’re not, so GET OUT”, “sorry, your file says to only treat you with Tylenol”. I’m never looking for drugs. I just want to not hurt. There’s a difference, and they don’t get that I wish to GOD that I could never see a pill or needle ever again.

    If a doctor recognizes me, they’ll make sure they get my file, and they will take every bit of frustration they have out on me. I’ve been denied pain medication for kidney stones, prescribed the psych ward, given a spinal tap to see if I’m really serious (and then given the order that I have to stay in a bed for 8 hours afterward with bags of fluids and no catheter, unable to get out and use the bathroom). I once had severe abdominal pain. My PCP ordered me to get to the ER because it sounded just like appendicitis. After one ex-ray, a nurse came in with the doctor, and she told him I was a “known drug seeker”. He told me he was calling whoever was on call from psych. When they left, my husband and I just got our things and went to leave AMA. Even though I was in hell, I got as quickly as I could to the car while crying, and she ran out. She yelled “You can go pretty fast for someone who’s supposed to have abdominal pain! Get the fuck out of my hospital and don’t come back.”

    I’ve finally found a few doctors who believe the different diagnoses I’ve had. They can see when I have a pulmonary embolism. They can see me have a seizure, and there’s proof that my immune system doesn’t work right. That’s just maybe 2 doctors, though. I’ve been put through hell by doctors who don’t believe me even though there’s proof in front of them.

    I’ve also found that most doctors do NOT want to treat something nebulous that can’t be nailed down with 5 run of the mill tests. They want to swing on the vines and pat themselves on the back for saving someone’s life. A car wreck victim? Sure. Easy. Me…? it’s “I ran a x-ray and a CBC and I didn’t see anything, so she must be crazy. Shoot her up with a hefty dose of Haldol.”

    Nobody should be suffering like this. Left in pain every day and left in even more in bad situations, not even having a name to put with the things that are hurting you, and thus get no treatment and told to get out.

    Thank you for making this film. If nothing else, hearing this, that I am not alone in things like this… Just hearing that someone understands means a lot to me. Hearing that they’re trying to make it better for everyone means even more.

  • Grace Zarou commented on Oct 29 2013

    After treatment for Neuro Lyme 2003-2005, 2007 diagnosed with MECFS by Dr. Lapp in Charlotte. Has ME been linked to Lyme Disease. Have same symptoms and viruses.

  • Tami Lucas commented on Oct 27 2013

    ME/Chronic Fatigue Syndrome

    Written in 2001 nothing has changed…
    The Poisoning of America: The Rise of ‘Mystery’ Illnesses Including Chronic Fatigue Syndrome, Fibromyalgia, and Gulf War Syndrome..written in 2001 and nothing has changed.
    http://www.prohealth.com/library/showarticle.cfm?libid=8931

  • commented on Oct 27 2013

    If you took a fluoroquinolone antibiotic, Cipro, Levaquin, Avelox, Floxin or a few other rarely used ones, you may be suffering from fluoroquinolone toxicity in addition to M.E. Please take a moment to look at this PBS Frontline Expose on how Levaquin severely effected Jennifer Wilcox and others – http://www.pbs.org/newshour/bb/health/jan-june11/antibiotics_06-16.html If it rings bells for you, please look through your medical records and see if you were given these drugs when you had a high fever. Please note that adverse reactions to these drugs are often delayed for weeks or sometimes months as they adversely effect DNA and it takes time for DNA replication to occur. Just something for you to consider. I wish you hope and healing!

  • Tami Lucas commented on Oct 27 2013

    When she was sick what drugs did she take??
    Visit us at
    The Fluoroquinolone Wall of Pain amd Sign Petition
    She is not alone.
    CIPRO, AVELOX, LEVAQUIN

    FDA Drug Safety Communication: FDA requires label changes to warn of risk for possibly permanent nerve damage from antibacterial fluoroquinolone drugs taken by mouth or by injection. http://www.fda.gov/Drugs/DrugSafety/ucm365050.htm

  • Natasha Nkrumar commented on Oct 27 2013

    its g8 what she is doing, a very brave woman indeed

  • Lyme Frenz commented on Oct 27 2013

    How can she be a PHD student and not have checked tick borne illness. It really doesn’t sound like ME, more like lyme or a lyme coinfection.

  • commented on Oct 27 2013

    Reblogged this on Joseph Rugg's Health Law Blog and commented:
    Could someone without healthcare insurance and only showing up at an ER, looking for charity care, ever have been diagnosed or treated appropriately?

  • pjck men commented on Oct 26 2013

    Very good and has many improvements and exciting new.
    y8

  • Seema Shah commented on Oct 26 2013

    Jennifer, I’m so pleased that you are making this film. It is much needed. As you said, so little has changed and so much misinformation about this illness remains. As a physician living with M.E. (I left general practice ~a decade ago) and a writer of creative nonfiction, I have (unsuccessfully to date) been trying to convey the lived experience of M.E. in writing. I will be very interested to see your end result.

    And thank you to Karen Eng, for focusing a TED Blog on M.E. Great exposure for an illness which tends to remain invisible in every sense of the word.

  • Marchi Wierson commented on Oct 25 2013

    Thank you x a million for what you are doing Jennifer.

  • commented on Oct 25 2013

    Reblogged this on marilynwest and commented:
    .