Chronic Fatigue Syndrome

The Joy of Being Helpful

ALS, Chronic Fatigue Syndrome, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases / By

Many patients with life-changing conditions report feelings of grief and guilt about no longer being able to do many of the things they did in the past.  As a recent discussion in our forum revealed, however, patients are finding ways to reset their perspective and boost their self-esteem by focusing on what they are still able to give to others, despite the challenges of their illness. Here are some of the small and large contributions our members have made, helping them to feel good about themselves: Going to the hospice to sit and talk with the residents Sending handwritten letters via snail mail to loved ones Participating in educational events about the role of service dogs Getting good friends together for a gathering to reconnect Volunteering in a food bank to appreciate having food to eat Calling an isolated grandparent or friend regularly on the phone Allowing the cat from down the road to come inside and snuggle Fostering or adopting medically fragile children in the system Have you found strength – or a renewed sense of purpose – by doing what you can to help others?  Share your experiences in the comments section.  Also, you may want to check …

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Bringing PatientsLikeMe into the Doctor’s Office: An Interview with Pediatrician Dr. Jim King

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You may recall that in July we shared a video about Doctors 2.0 and You, a conference focused on how physicians are using web 2.0 technology.  Today we’d like to present a real-life example of this concept: Dr. Jim King, MSc, MD, FRCPC.  A pediatrician at the Children’s Hospital of Eastern Ontario (CHEO) in Ottawa, Dr. King runs a number of different clinics for rare diseases.  He also serves as the hospital’s Medical Director for Informatics.  Find out how he has used PatientsLikeMe as part of his practice and much more in our interview below. 1. How did PatientsLikeMe come to your attention? We were doing a presentation a number of years ago, in 2006 I guess. We were talking about a number of things, but more specifically the use of mobile technology in healthcare and research as well as personal health records. So we were sort of working up some information and then we came across PatientsLikeMe. We were basically looking at some of the business models around personal health records, specifically around Microsoft Vault and Google Health and those things, and we thought PatientsLikeMe had a little bit of a different spin. 2. As a pediatrician, how have …

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The Importance of Open Access: An Interview with Patient Advocate Graham Steel

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A native of Glasgow, Scotland, Graham Steel is a longtime “Guest Researcher Member” of PatientsLikeMe.  Following the death of his brother Richard at the age of 33 from a rare condition known as variant Creutzfeldt-Jakob Disease (vCJD), Graham became involved in patient advocacy work, and most recently, in lobbying for open access to published scientific research.  Find out how this active blogger and Tweeter developed a passion for data sharing in our interview below. 1.  Tell us how you first got involved in patient advocacy work. As per my PatientsLikeMe profile, this started in 2001. Two years after the loss of my only sibling to vCJD, I was approached by a UK organization called the Human BSE Foundation to act as their Vice-Chair. Quite a daunting task for a 33-year-old!! I was involved in that capacity until 2005. Over the years, my interests in science and information sharing to this day continue to diversify. I’m a great believer in complete openness and transparency as anyone who knows me in real life or via the Internet knows. One of my key assets seems to be “connecting people,” something that I started doing at the age of four. I enjoy making new …

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Women’s Health Week: “It’s Your Time”

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Ladies, we know your lives get busy.  So why not pull out your calendar or smartphone right now and see if you’re due for a visit to your health care providers?  You’ll be doing your part for National Women’s Checkup Day (observed today, Monday, May 14th), an annual event that’s part of National Women’s Health Week. Checkup Day encourages women to get regular checkups that are vital to the early detection of heart disease, diabetes, cancer, mental illnesses, sexually transmitted infections and other conditions.  The reason is simple.  Women often serve as the caregivers for their partners, children and parents. As a result, their own well-being can be secondary at times.  The theme of National Women’s Health Week 2012 – “It’s Your Time” – speaks to the fact that women need to prioritize their own health as well. Not sure what preventative screenings are recommended for you?  Check out this handy chart organized by age group.  Then take the Checkup Day pledge along with women around the country to get at least one recommended screening during May. If you’re concerned about cost, you should know that all recommended preventative screenings – such as mammograms, colon cancer screenings, Pap screenings and …

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What Do You Know About Endometriosis?

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March is Endometriosis Awareness Month, which means it’s a good time to brush up on this common women’s health problem.  For example, did you know that endometriosis gets its name from endometrium (en-doh-MEE-tree-um), the tissue that lines the uterus?  Or that this often painful condition occurs when that tissue begins to grow in other places, such as on the ovaries, fallopian tubes and pelvic cavity lining?  In rare cases, endometrial tissue has even been found in places like the lungs and brain. More than five million women in the US have endometriosis.  It’s most common in women in their 30s and 40s, but it can occur in any teen or woman who has menstrual periods.  Symptoms include painful menstrual cramps, chronic lower back or pelvic pain, pain during or after sex, intestinal pain, infertility and painful bowel movements and/or urination during menstrual periods.  Interestingly, pain levels don’t align with the amount of endometriosis, though.  Some women have severe pain with only a few small growths. The cause of endometriosis is unknown, but research shows a link between endometriosis and several other chronic conditions, including multiple sclerosis, fibromyalgia, chronic fatigue syndrome and lupus.  Endometriosis also appears to run in families, suggesting that it may be …

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A Peek at the February Newsletter for Members

ALS, Chronic Fatigue Syndrome, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases / By

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our February edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today. MONTHLY MUSINGS Ever feel like you’re so busy seeing specialists that it’s easy to forget about your annual physical?  In addition to checking up on your overall health, an “annual” is a great time to monitor your blood work – such as cholesterol and Vitamin D levels – which you can now record on your PatientsLikeMe profile.  It’s also a good opportunity to discuss any new concerns with your primary care physician (PCP). But with only a few minutes with your PCP and a whole year’s worth of health matters to cover, it can be hard to remember what’s happened between visits, and even harder to get to everything that’s important. Fortunately, your printable and customizable Doctor Visit Sheet (DVS) can help.  Bring this complete record with you …

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E-Patient Dave’s Top Internet Resources

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We first introduced you to E-Patient Dave – a well-known blogger, author and keynote speaker in the healthcare space – last summer.  Given our similar views on many health matters, we see a lot of E-Patient Dave at the conferences and events we attend.  Case in point, our President and Co-Founder Ben Heywood was on a panel with him at the Military Health System Conference just a few weeks ago. For this particular “high-speed” panel, each speaker was given just 12 minutes to share their story.  So what did E-Patient Dave do?  Exactly what any good digital age citizen would:  he covered the important things and then directed people to his website to find all the related websites and resources.  Given that he’s a cancer survivor and e-patient advocate who believes in “letting patients help,” we were curious what links E-Patient Dave recommends for others who are seeking to take control of their health and join the e-patient movement. Here’s a sampling of Dave’s top resources along with a brief description: All About the E-Patient Movement, and Its Founder, Dr. Tom Ferguson (“Doctom”) Society for Participatory Medicine, its journal and its blog e-patients.net (the hub) Medical Self-Care (pioneering 1985 article by Dr. …

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Thriving Against Expectations: Ben Heywood’s Moving TEDx Cambridge Talk

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Last November, we shared our takeaways from TEDx Cambridge, a one-day event featuring 30+ speakers and lots of Ideas Worth Spreading (TED’s mission).  The theme for this particular gathering was “Thrive.”  How can we as individuals – and communities – not just survive but thrive? One of the speakers to take a crack at that question was PatientsLikeMe Co-Founder and President Ben Heywood, who talked about the story behind PatientsLikeMe.  In addition to sharing how it all began with his brother Stephen’s diagnosis with ALS, and what PatientsLikeMe is trying to do (“a revolution of openness”), Ben focused on how we can thrive as a company against big expectations – both external and internal. Tune in to the video below to find out just that.  Congrats to Ben on an inspiring talk – not to mention his standing ovation!

Our Patients’ Hopes, Thoughts and Resolutions for 2012

ALS, Chronic Fatigue Syndrome, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Rare Diseases, Research / By

Many people look at a new year as a fresh start – a chance to begin new routines, eliminate bad habits and shift priorities.  But not everyone believes in making resolutions. Here are several different patient perspectives on approaching the new year: “In 2012, I will make daily exercise a priority. Research reveals it is the one thing that may slow disease progression. It also improves overall health and makes us look and feel better.”   – Patient with Parkinson’s disease “I am filled with great hope for us all. In 2011, the pace of research breakthroughs increased dramatically. Most importantly, new research modalities using human tissue have been developed and are already contributing to major breakthroughs in understanding the biopathways affecting ALS. We are closer to a cure than ever.” – Patient with ALS “My resolutions are pretty simplistic:  Sleep hygiene and getting more (sleep, that is). Discontinuing the practice of making long and unrealistic to-do lists.  I’ll start with sleep and go from there.” – Patient with major depressive disorder “I have no expectations that this new year will be any better then the last. That way I don’t get disappointed so whatever does happen will be a bonus.”  – …

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Holidays Wishes from PatientsLikeMe to You

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The holidays are a time for thinking about everything you hope and wish for in the coming year.  They’re also a time for appreciating everything you already have.  As our season’s greetings to you, we wanted to share a wish expressed by each member of our management team. “I wish for every patient and family dealing with illness to know that they are not alone and that we are all in this together.” – Ben Heywood, President and Co-Founder “I hope Santa brings you all your health data and that you will share it with other patients like you!” – Paul Wicks, PhD, Research & Development Director “I wish for people to have the most happy, healthy, and joyous holidays filled with the unparalleled love from those who matter in their lives.” – David S. Williams III, Chief Marketing Officer and Head of Business Development “My wish for patients everywhere is that they continue to learn about their chronic conditions and keep updated on the latest treatments from multiple sources.” – Robert Palladino, Chief Financial Officer “All of us at PatientsLikeMe wish you and those you love a holiday of joy and grace.” – Jamie Heywood, Chairman and Co-Founder Happy …

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