6 posts tagged “treatment”

Let’s make fibromyalgia visible today

Posted May 12th, 2017 by

Fibromyalgia awareness day

“I get so angry when friends come over to visit, after I haven’t been able to get out of the house for a month, and tell me how good I look. Or the idiots who ask you how you got the handicapped parking tag when you look so healthy. People just don’t see how difficult this disease is.”

-PatientsLikeMe member living with fibromyalgia

“I am so tired of the ‘but you don’t look sick’ comments.”

-PatientsLikeMe member with fibromyalgia

“I feel like I shouldn’t talk about it because I don’t expect it will make a positive impact on me if I do.”

-PatientsLikeMe member with fibromyalgia

This is the reality for those living with fibromyalgia – and since May 12 is Fibromyalgia Awareness Day, the fibro community is rallying to make this condition visible. The National Fibromyalgia Association has reported that it is one of the most common chronic pain conditions in the United States, affecting an estimated 10 million adults, with around 75%-90% of the people living with fibromyalgia being women.

Because fibromyalgia is an invisible illness, explaining it to others can be even more difficult. That’s why 2015-2016 Team of Advisors member Craig (woofhound), who is living with fibromyalgia, wrote an open letter to the “normals” describing what it’s like to live with a chronic pain condition while dispelling myths that often surround it.

Letter to the normals

 “We really do care about you and really wanted to visit, but if we listen honestly to our bodies we can’t afford the toll of that visit. We know that makes us come across as ‘flaky’ especially if we’ve had to cancel at the last minute, but if you understood this condition you would see that we don’t really have the choice”.

 

Check out Craig’s full open letter to the normals here.

 

So, how can someone with fibromyalgia improve their quality of life? According to the Centers for Disease Control and Prevention (CDC), there are a few things that people living with fibromyalgia can do – namely, exercise.

  • Get active – The CDC suggests physical activity can help improve symptoms of fibromyalgia, including pain, sleep problems and fatigue. It can also reduce the risk of developing other chronic diseases like heart disease and diabetes. However, physical activity can be extremely challenging for those living with chronic pain, so the CDC advises to start slowly and gradually increase your activity level. It can be as small as doing some stretches in bed each morning. They also have a list of recommended exercise programs which you can read more about here.
  • Self-management education – learning more about your condition can help you gain better control over managing your symptoms. Joining sites like PatientsLikeMe to learn about yourself and others like you can help you better understand life with you condition. The CDC also has a list of recommended self-management education programs.

There are more than 3,000 topics in the fibromyalgia forum tagged with “exercise”. Join the discussion!

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Treating PTS: What members said in a recent study

Posted June 27th, 2016 by

June is National PTSD Awareness Month, so we’re shedding some light on what it’s really like to live with post-traumatic stress (PTS). At the end of last year, we teamed up with our partners at One Mind to better understand what it’s like for PTS patients to treat their condition. Nearly 700 members of PatientsLikeMe’s PTS community took a survey, and now that we’ve analyzed the results, we wanted to share what we’ve discovered.

Check out this infographic to see what members said about why they did or didn’t seek treatment, who helped them find it, and whether or not it helped.

 

 

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“Not beyond us” – Recognizing World Cancer Day

Posted February 4th, 2015 by

The Union for International Cancer Control (UICC) has organized today, February 4th, as World Cancer Day. This year’s theme: “Not beyond us.” It’s about highlighting that solutions to cancer are within our reach. Awareness is not beyond us. Prevention is not beyond us. And a cure is not beyond us. The UICC is encouraging everyone to take a positive and proactive approach in the fight against cancer by working towards these four goals:

  • Choosing healthy lives
  • Delivering early detection
  • Achieving treatment for all
  • Maximizing quality of life

You can become part of the World Cancer Day effort and raise awareness about what needs to be done. Whether it’s at an individual, community, governmental or global level, you can help in the fight. Visit the World Cancer Day website to learn how to get involved.

What are PatientsLikeMe members sharing about their journeys with cancer?

PatientsLikeMe member Glow4life was diagnosed with lung cancer (adenocarcinoma) this past June, and her story is a testament to never losing hope. She recently shared her experiences in an interview, and she spared no details in describing her challenges. Despite her terminal diagnosis, four rounds of chemotherapy and the sudden loss of her husband, Glow4life has remained positive, and she’s learned to take every day as it comes and live in the moment. Learn about her journey and how she shares love and hope whenever she can.

“Hope won’t make it happen” is Phil’s (PhillyH) personal motto in life. She’s a PatientsLikeMe member who hails from Northampton in the United Kingdom and was diagnosed with lung cancer in 2012. Ever since then, she’s been learning to live with the ups and downs of her condition. She recently shared her experiences in an interview with us, everything from the reaction she had after her blunt diagnosis to her treatment decisions and son’s new tattoo. Phil also shared her thoughts on what every person who has just been diagnosed with lung cancer should know. As she says, “If you don’t know, you can’t do” – read about her lung cancer journey.

Meet Vickie, a PatientsLikeMe member who has survived cancer not once, but twice. She’s sharing her story, from diagnosis to survivorship, during Lung Cancer Awareness Month. She spoke about her reaction to getting diagnosed, the anxiety filled months leading up to surgery and what recovery was like post-operation. Learn about her journey.

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PatientsLikeMe and Cancer Treatment Centers of America Eastern team up to support survivors

Posted October 8th, 2014 by

Online Network Connects Patients, Offers Valuable Information and Tools

CAMBRIDGE, Mass.—October 8, 2014PatientsLikeMe and Cancer Treatment Centers of America (CTCA) at Eastern Regional Medical Center (Eastern) have joined forces to help ease patients’ transitions from cancer treatment to survivorship. The collaborative effort is designed to give patients undergoing or completing treatment direct access to a powerful online network for daily support, information and tools.

Offering a comprehensive, fully integrated approach to cancer treatment, CTCA at Eastern sees patients from around the world. “Since so many of our patients are from out of town, it’s incredibly important that we connect them with resources that extend their support and care when they go back home,” said Vice President of Marketing John Goodchild. “PatientsLikeMe will be an important addition to what we do and a way for our patients to not only get great support and services, but to contribute data that could prove valuable for future cancer research.”

PatientsLikeMe’s Executive Vice President of Marketing and Patient Advocacy Michael Evers said CTCA at Eastern and its clinicians will be helping patients access one of the most powerful and active patient networks online. “Our members share information about how they’re managing their condition and actively contribute insights and data to help others and advance research. We’re excited to welcome the CTCA community to PatientsLikeMe. Together, we’ll give everyone the support, tools and services they need to be fully empowered on their journey with cancer.”

The relationship with CTCA Eastern is the latest in PatientsLikeMe’s expansion in cancer, which began earlier this year with an agreement with Genentech. PatientsLikeMe welcomes anyone living with cancer to join the community.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About Cancer Treatment Centers of America
Cancer Treatment Centers of America, Inc. (CTCA) is a national network of five hospitals that specialize in the treatment of patients fighting complex or advanced-stage cancer. CTCA offers an integrative approach to cancer treatment that combines surgery, radiation, and chemotherapy with nutritional counseling, naturopathic medicine, mind-body therapy, and spiritual support to enhance quality of life and minimize side effects during treatment. The company serves patients from all 50 states at hospitals located in Atlanta, Chicago, Philadelphia, Phoenix and Tulsa. Known for delivering the Mother Standard® of care and Patient Empowerment Medicine®, CTCA provides patients with comprehensive information about their treatment options so they can participate in their treatment decisions. For more information about CTCA, go to www.cancercenter.com.

Contacts
Julia Scherer
Cancer Treatment Centers of America
Julia.scherer@ctca-hope.com
215.537.7469

Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


It’s the Season for Seasonal Affective Disorder

Posted November 15th, 2011 by

Now that daylight savings time has ended, the days are shorter, and before you know it, it’s nightfall.  Has this affected your mood?

Seasonal affective disorder (SAD), also known as seasonal depression, is a condition marked by a period of depression that occurs during the same season year after year.  In most cases, that season would be fall through winter (when there is less sunlight), but for some people, SAD can occur during spring or summer.

An Example of a Light Therapy Box Used to Treat SAD

One of the best ways to learn “what’s normal and not normal?” with SAD is to compare your experiences with other patients. There are 446 patients with SAD at PatientsLikeMe, with 85% of them female and 15% male.  A commonly reported treatment is light therapy, or the use of a special light box that exposes you to bright light.  This mimics the effect of natural outdoor light and appears to cause a change in brain chemicals that positively affects your mood.  (Does it really work?  Check out the 27 treatment evaluations for light therapy that our patients have submitted.)

What’s it like to live with SAD?  Here are some first-hand reports from members of our mental health community, who answered the question “What are your SAD symptoms?

  • “My symptoms tend to be worsening depression and anxiety.  There are no ‘indicator’ symptoms for me – meaning I don’t realize necessarily ‘Oh I’m starting to feel SAD, crap!’  But all of my Major Depressive Episodes (five so far since I was 20) have occurred in November and December.  And looking back, I can see a downward trend in especially depressive symptoms getting worse starting in mid October – such as depressed mood, more frequent crying spells, fatigue, worse insomnia, headaches worsen, weight and appetite changes, and urges to self-injure.  Three of my Major Depressive Episodes led to suicidal thoughts and short hospitalizations.  The other two, I had frequent suicidal thoughts but did not feel in danger of acting upon them.” – Member with panic disorder
  • “[Symptoms are] mild now, but they ran the spectrum from comatose to the walking functional. Kids don’t understand, and our school bus arrived at 6:00 a.m. Needless to say they weren’t hungry, food on the bus = school contraband, so I’d whip up scrambled eggs with cheese and wrap them in a taco shell and tell them to sneak a bite when they got hungry. They just threw them in the bushes for the local dogs to eat. Then I’d watch TV and answer the ever increasing phone calls all day long. If I felt OK, I’d start to prepare for the tornado that was spring.  Nowadays since I don’t have so much responsibility, my symptoms seem mild, but that could change depending on the winds of life events.” – Member with bipolar II disorder
  • “I think it varies year to year in terms of severity.  The March/April period is characterized by an increase in my anxiety levels together with restlessness and restrictive eating. The September/October period is characterized by an increase in my feelings of sadness along with intense carbohydrate cravings and a need to sleep more.  Both periods are marked by problems concentrating.  I notice that the light box really helps with the carbohydrate cravings. I think it might even make me less hungry overall.  It’s not that the cravings go away entirely, but instead they are dampened to the level where I *don’t* find myself eating cookies without realizing how I got them.” – Member with major depressive disorder

Wondering what else they patients have to say about SAD?  Or think you might experience the condition yourself?  Join PatientsLikeMe and take part in this ongoing SAD forum discussion.


Structuring and Presenting the Patients’ Perspective at AMIA

Posted December 15th, 2008 by

PatientsLikeMe members share health data on the site adding their own individual-level health experience to a repository of structured outcome data. The result? An unprecedented data set that informs medical conversation not only within the patient community but also with the larger scientific one.

Organized Patient ExperienceEarlier this fall, the venue for this conversation was the annual meeting of the American Medical Informatics Association (AMIA). Typically, AMIA is a forum for medical researchers to discuss clinical-facing informatics projects like electronic medical records, doctor decision-support systems, and standards. This year, the event agenda included its first-ever panel on patient collaboration, with PatientsLikeMe presenting on how our members use informatics systems to spearhead original research.I presented a paper co-authored with Michael Massagli chronicling the activity on the ALS site regarding the site-based evaluation of Lithium. Questions about the paper were enthusiastic and challenging as medical researchers contemplated the full implications of patients conducting research outside of the healthcare system. The most provocative comment came from Danny Sands of Cisco who introduced the possibility that while he saw the value of PatientsLikeMe, we may also be “polluting clinical trials” – when patients with rare diseases take experimental treatments before being enrolled in (his) randomized clinical trials. My response was that he and others in the clinical trial world may feel differently if someone he cared for was diagnosed with ALS – a disease where patients have limited time to explore treatment options. As medical researchers, we should be proud of our patients who are taking an active role in their health care; I know I am.

The truth is, whether practitioners discuss it or not, people have long experimented with novel, off-label, and alternative treatments (some with and some without their physicians). Barring the few cases that are published in academic journals, these individual efforts only resulted in a tiny group of people learning anything from their experience. By organizing these individual efforts, PatientsLikeMe allows the data to be pooled and recorded systematically for analysis.

Of course, randomized clinical trials (RCTs) are the most rigorous means to systematize experimentation, but they have their draw-backs. They are expensive to run, time consuming (they take years, our study took months), and may be subject to more confounds than their organizers would like to believe.

While coordinated patient-led research on PatientsLikeMe is new, and as such presents novel challenges in its methods and credibility, we have now glimpsed its promise, its potential. Lithium was a first effort to study one treatment in one condition; it is just the beginning. There are many other treatments being used listed on the site by our patients that are not – for a variety of reasons – being studied systematically anywhere else. For example: Low Dose Naltrexone (LDN), Stem Cell Transplants in ALS, 4-Aminopyridine (4-AP), Botox injections to manage excess saliva, etc. These demand our attention.

Regarding the Lithium experiment, one patient described the situation better than I ever could in this forum post: “This is an amazing process.  Instead of sitting on the sidelines searching for promising research we are for the first time ever (from what I can determine) taking a group of people with a particular disease and taking an active role in researching a treatment.”

PatientsLikeMe’s members are not only learning how to best care for themselves, they are contributing their otherwise anecdotal experience to a body of data. Motivated by their own desire for better outcomes, patients are reporting directly to the website and building a body of evidence not being collected anywhere else. Together, with our carefully designed tools to capture, display, discuss and analyze this data, we are creating a repository of patient reported outcomes that will add patient data to evidence-based medicine and advance our knowledge.  Isn’t that what it’s all about?

PatientsLikeMe member jfrost