A medical student with mysterious symptoms that mimic the signs of kidney failure. A man with debilitating pain that has lasted for over a decade and causes temporary paralysis. A young woman who gained 90 pounds in a year and started experiencing severe pain and gastrointestinal problems.

All of the patients say their doctors haven’t been able to figure out what, exactly, is wrong. And they’re all hoping that a hive mind of television viewers might be able to help. The patients will be featured on “Chasing the Cure,” a new weekly show debuting this week on TNT and TBS that digs into undiagnosed or uncured medical conditions. Led by veteran journalist Ann Curry, the live show will tap into a panel of doctors and take suggestions from viewers about possible diagnoses. “Chasing the Cure” has also created an online community and a Facebook group, where hundreds of people have already shared their own medical mysteries in hopes that other users might be able to help.

But for a show that’s looking for answers, “Chasing the Cure” also raises a number of ethical questions, from how the show will make sure patients understand the implications of sharing medical information on live television to how the producers will proceed when a participant can’t afford care. STAT spoke with Curry about those considerations and what she sees as the value of crowdsourced care. This conversation has been lightly edited and condensed.

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Why did you want to get involved with this effort?

When I was first presented the idea, my first reaction was concern. I was asking how do you do this ethically? How do you do this responsibly? How do you do this not just in a way that feels like a TV show, but actually treats these patients with tremendous respect and care?

It’s always been true that not everybody can get the diagnosis that they need. It’s always been true that not everyone can get the right health care that they need. But what’s happened is that social media has allowed these realities to bubble to the surface. And we’re seeing it’s not a small problem, but a significant problem.

I have held everyone to this promise [to proceed ethically] every step of the way. That is the only way that I would be involved, is if we put the patient first. And that’s a period on the end of that statement. That meant that [for] all the decisions we make — who we we find as doctors, how we treat the patients, whether we wait at all to give them a diagnosis or data on their care or whatever it is, the legal questions involved, all of those things.

I’ve tried for more than 30 years as a journalist to give voice to the voiceless. … These are people who are appealing on social media because they need to be heard because they’re alone. They’re suffering, and they need help, and they’re reaching to the crowd.

Tell me about a time when you pushed the team to put patients first.

One of the first people we brought into the team is a medical ethicist to help us guide our decisions. We have a psychologist, a social worker, and other behind-the-scenes doctors. Plus we reached out to major medical centers so we can make relationships and talk to them about what we’re doing [so that] we can be connected with them and have access to their specialists. We are connected now to 52,000 physicians who we might be able to call upon to help us solve these cases. In addition, we have sought some of the most talented minds in medicine. There’s tons of talented minds in medicine. The problem is that a majority of Americans really don’t have access to them.

So this idea was OK, well, what happens if you take people who are reaching out for help and give them a chance to sit in front of a panel of highly qualified, talented, great minds and you let them have their cases studied, let them be heard? And then on top of that, you expose them to the crowd.

Now, this is the part that some doctors have a problem with, because [they think] the crowd is not going to solve the case. … But that’s not the issue. The issue is there are people out there who have experienced some of these same symptoms, or their mothers have experienced exactly the same symptoms, or they are nurses or doctors or EMTs. And they may know something. If you know nothing, and you’re desperate for answers, your chance of finding out what you may need to know is much better if you are connected than if you’re not. That’s just basic math, right? That’s just two plus two equals four.

We’ve talked about the responsibilities you have to patients who are coming on the show. What responsibilities do you have to viewers in relaying health information?

We live in a time of rampant over-self-diagnosing. We’re living in a time when everyone thinks that they’ve got the worst disease possible because we are constantly trying to guard against the possibility that we’re extremely sick. Why are people turning to WebMD? Why? Because they don’t have time with their doctors. So this is a snowball rolling downhill. You can’t make fun of the other patients trying to get more information to stay well and have a long life, if they can’t get this information from the people they trust and who should be able to have time with them.

So I totally understand why doctors are rolling their eyes and throwing up their hands when a patient comes in and says, “Are you sure that I don’t have some 20-letter Latin phrase that is some kind of disease?” But this is actually an outgrowth [of] a need, and that need is real. And it has to be addressed.

We are completely aware that we have to be careful about making sure that no information is shared that is incorrect. I’m a journalist, the showrunner is a journalist. But every major decision … is manned by a doctor. Doctors have huge influence on what data we put out on TV. … I am not going to allow any information on TV that is going to hurt people. So I will be extra cautious about that, because that’s my responsibility.

[On the online platform] we will allow interaction and we want to encourage it, because we want them to not feel alone. But we’re also going to have that monitored by a human being and with auto-monitoring. Clearly, there are some risks.

I spoke to some bioethicists about the idea behind the show. And one question they asked was what it takes to make sure people fully comprehend what it means to share their medical information with the world in some way.

Especially when they’re desperate, right? Do they understand what that means? We’re trying to guard against that. And we’re doing it in big ways and small ways. We’re having real conversations. We’re having them look at medical and legal documents looking at the risks. … We can only do our due diligence.

In addition to being the executive producer and trying to be a firm voice in defending these patients, I feel I am a patient advocate. So, for example, the studio where we’ll be broadcasting from actually has a doctor’s office in it [that] can be used for examinations, even for blood draws and things like that.

What does television want? Television wants to show that examination. And what am I gonna say? “Are you sure? Would you like to have that done in private? Are you OK about showing this in public?” … Sick people want other people to not be sick like they are. They want to rescue other people. … [They] want them to know they’re not alone. … So it’s interesting how people think through this stuff and what decisions they make. … We can’t judge that. But what we can do is listen and to really make sure they understand, as best as we can, what is happening.

We are trying very hard to recognize the human dignity of all people. And we’re also not trying to replace their primary care physician. These doctors are advisers. They’re trying to help [participants] get closer to getting the data they need. In some cases, to be honest with you, it’s very possible that some of these patients will not even have a primary care physician, because we’re also hearing cases from the underserved. We’ve had to sort of be very tender-footed, trying to walk through this minefield, trying to make sure that we don’t overpromise, but that we do as much as we can.

I imagine one of those mines would be what happens when you encounter patients who either don’t have good health insurance, any health insurance, or can’t afford to chase down the possible diagnoses they’re given on the show.

Exactly. We’ve had to face that question directly. And certainly, this project can’t afford to pay for the medical care for all the patients who are going to be involved. … We’ve had people, doctors already offering to donate and care for these patients who can’t afford it. So even though we can’t pay for all the medical care for all the patients, what we can do is have their stories heard by a broader audience and make them not be alone or feel alone. And when they’re not alone, there’s a greater chance that good things might happen. So I think it’s fair to say that some patients will be getting care that they can’t afford.

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  • How do I get on the show? I have a rare lung disease called BOOP, another name for it is called Organized Pneumonia, and also I have temporal arteritis. I am not getting better, I am getting worse. I really wish to be evaluated and helped. Thank you

  • I so wanted to like this show because I like Ann. But first of all, why not say what’s already been ruled out? The first case probably had hundreds of people pronouncing it MS but it had been ruled out.
    Hannah was NOT well supported by her mother at all. 22 and had never had a pelvic exam, especially when she’d been having these abdominal issues? Come on. Every young woman needs to have an exam by 18 if not before.
    And then the guy with the stomach bloating hadn’t been to see a gastroenterologist?? That’s too stupid to contemplate. Had to turn off the show at that point.

  • Dear Anne, I believe I have burning mouth syndrome. On March 1 2019 , my right side of my face went numb and my tongue was tingly. I went to my dentist to see if recent procedures was the cause. They took xrays and sent me to my primary. They checked for stroke and sent me to neurologist. I had cat scans MRI ultra sound then on to vascular dr. Then to cardiologist. I had a cardiac catheterization and a nuclear stress test. They found a few blockages not operable now but no reason for my mouth. It has gotten worse. I feel like I have eaten got pizza and burned the inside of my mouth all the time. My dentist still feels that it is burning mouth syndrome. I am so worried about getting mouth cancer. Can you help me?

  • Hi. I live with CRSD, complex regional sympathetic dystrophy and fibromyalgia. Was diagnosed with the fibro in 2000. My crsd was diagnosed in 2018 after some injuries. There is no cure for either one and the older I get, the harder they both become to deal with. I would love to help others. I do not use pain meds to deal with the large wide spread of pain day in and day out. I would love to have you find some specialist who may know how to help …. I’ve yet to find anyone with any other answer other than there is nothing they can do……

    • My 31yr old son has cyclical vomiting disease. 1 of 3 in the world. He is on his last legs. It’s ravaged body and mind. HD has 2 kids that need him, but he has spentv4 days per week in the hospital for the last 2 or 3 yes. Last hope here

  • So glad to see you back on. You have been missed. My daughter has a medical mystery and I would love for you to help me help her. Possibly one of ur many doc’s can help. As one mom to another, I need to help her. Erica is 35 years old, married with 2 small children and has been progressively getting worse. It started with a diagnosis of POTS, an auto immune disease. Since then, she has been diagnose with multiple auto immune diseases and been given meds by each doctor to a point that she has gained 50 pounds and cannot get out of bed except to go to the many docs. She lives in California and has been to all of the top hospitals, USC, Cerdar Sainai, Scripts, and no one can help her. Her latest diagnosis has been Mass Cell on top of five other diseases. They have her on so many meds, including morphine and no one has suggested any help but drugs. My grandkids are 3 and 5 and need their mom. I need my daughter back. I do not live in california and am commuting there as much as possible.Her husbasnd works full time and has had to hire nanny’s at a big expense to help while he is at work and then he takes over as a great full time dad. Mila, our 5 year old is starting kindergaten in a week and her mommy cannot be there. I will be there with my husband and her dad but my heart breaks because my daughter would give the world to be there. The kids are doing great with a combination of family help (her other grandparents live in NYC), a great dad , and a mom who is there as much as her illness will allow. I am so proud of the kids as they are doing so well with all of our help and my daughter going arts and crafts, reading, what ever her illness will allow. PLEASE talk to the doctors you have on board your medical staff. Although the kids are so beautiful and loving and bright, they need a mom and I need my vivacious, beautiful, wonderful daughter back. I know you have had many requests. Please think of our family and put us in your prayers. Thank-u Harriet Glazer

  • Ann, my wife Rhonda was dealing with a damaged intercostal nerve and we went to a Dr. William A . Freidman in Gainesville Fla. He is the Chief of Nuerosurgery. Dr. Friedman told my wife he could eliminate her nerve pain by removing the gangeleosis nerve root at two levels in her thoracic. We asked him what the side effects would be, what kind of an incision and what would be her recovery time. Dr. Friedman told her the only side effect would be that she would be completely numb in her right rib cage, he would make a 2” in her thoracic and her recovery time would be about two weeks.
    Rhonda had the surgery in October 2013. When she awoke, she was is excruciating pain, she had a 6” incision with 26 staples. When we finally saw Dr. Friedman about 4 weeks later Rhonda asked why she was in so much pain. Within 90 seconds Dr. Friedman put his hand in Rhonda,s face and said, “ let me stop you right there. My surgery was a success and you are numb “. Then he started to walk out of the room, I got him by his arm and said you need to talk to Rhonda and explain why she is in so much pain. When Rhonda tried to tell him she was not numb but was in so much pain, again Dr. Friedman put his hand in for face and said his surgery was a success and that she was numb and recommended she see a pain management doctor and he walked out of the room.
    Rhonda has not set in a restaurant since her surgery in October 2013. We have missed family get togethers and weddings. Her pain is debilitating nerve pain. 24/7. We have been to several doctors and neurosurgeons. All have told her they cannot help. She have been referred to The Mayo Clinic, The Cleveland Clinic and has been told they cannot help.
    We have been married for 53 years. Rhonda is the kind of person who has always helped others. She has worked since she was a teenager. Now her life is house bound, she is not able to drive of cook or do the things she wants.
    We looked up Dr. Friedman and found out he has done surgery on the wrong side of a man,s brain. We have talked to a lady in south Florida that he did the wrong surgery on her an has left her completely disabled.
    How is it that a doctor like Dr. Friedman can ruin so many people’s lives and still continue to practice medicine?
    He was only to do two levels on Rhonda, instead he did four levels without her knowledge.
    Ann, this is wrong on so many levels. He should never be in practice again.
    I hope you can look into this doctor and expose him.
    He is Dr. William Alan Friedman for Shands Hospital in Gainesville Florida. Thank you, Ronnie E. Bruner
    352-624-1274

  • I have high blood pressure that is kept under control most of the time and yet, out of the blue, peaks into the 200s/105s and above. My doctor is flummoxed, I’ve had numerous tests but all come back negative. I have kept a food diary to see if maybe I’ve eaten certain foods on the days these episodes occur. Nothing matches. It is so weird

  • My 23 year old niece, Madison Slagle, at the age of 21 was diagnosed with Spinocerebellar Atrophy with Ataxia. It is a genetic progressive disease that as of right now has no cure or treatments. She has no balance, unable to walk unassisted (recently her neurologist suggested that she get a chair, which she did) slurred speech and extreme loss of energy. She was a vibrant college student at Tarleton State 2 years ago and now is confined to a chair. Our family has rallied around her and we do everything we can to make her life as “normal” as possible. She has been a trooper through it all. We pray every day that a cure or treatment will be found. I would love to see a piece done on this rare disease.
    Thank you for your time,
    Donna Spencer
    817.504.5343
    Powderly, TX 75473

  • Please check out a Primary Orthostatic Tremors. Listed in NORD. Orthostatic Tremors is a”rare movement disorder characterized by rapid tremors in the legs that occurs when standing”, “there is a feeling of unsteadiness or unbalance”. Dr. Diego Torres-Russotto, of the University of Nebraska Medical Center did a clinical study, 9/2017. It was in Omaha. Please contact him for more information and check out this rare neurological condition.
    Thank you, Jenine Smith

  • Ann. I’ve missed you so!!!
    Please help those I call Sufferers trapped by the suicidal pain of Pudendal nerve disease. 100000s of us and almost no drs have heard the word definitely not taught. The e monster pain NEVER stops. My horror is over 12 yrs old. There is no life. e. I made a video. Google my name. I wanted others to know there was some help. Please please. Drs said I had to write a book. I have the manuscript. Judy Rentz

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