Posted by admin | January 24, 2013
When you are diagnosed with a life-changing illness, your doctor may prepare you for how the disease will affect your physical functions. But as our members point out, patients also need to be prepared for the changes in physical appearance they may experience. For example, how do you deal with hair loss, facial swelling, weight gain, blotchy skin or other unexpected changes? Or get comfortable with the use of new equipment such as leg braces, walkers or wheelchairs that may attract attention? Most importantly, what can you do to still feel beautiful?

Here are some suggestions from members of our PatientsLikeMe Forum, where patients with different conditions come together to discuss universal issues:
- Using attractive scarves or hats to cover thinning hair or bald spots
- Experimenting with different cosmetics to see what works best
- Treating yourself to a spa manicure and pedicure as a pick-me-up
- Trying out different explanations for your new brace/walker/wheelchair when asked to see what feels right and what produces the most acceptable responses
- Soaking in a scented Epsom salt bath to ease pain and relax
- Consulting with a hair stylist about better styles for thinning hair
- Using gentle, non-drying facial cleansers and lotions
- Switching to an electric razor to improve ease and safety
- Donating your hair to Locks of Love to put a feel-good spin on it
Have you discovered other tricks to help you deal with a changing appearance? Join this ongoing discussion in our forum or share your experiences in the comments section.
3 Comments
Categories:
ALS, Chronic Fatigue Syndrome/ME, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mood Conditions, Multiple Sclerosis, Openness, Organ Transplants, Parkinson's Disease, Rare Diseases
Tags: | Tagged: baldness, beauty tips for patients, blotchy skin, changes in physical appearance, facial swelling, feeling beautiful, hair loss, leg brace, patient tips, thinning hair, walker, weight gain, wheelchair
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Posted by admin | January 4, 2013
Last year, over 170,00 patients learned from each other’s shared experiences every day on PatientsLikeMe. In 2013, we promise to continue putting the patient first. We’ll provide better, more effective ways for sharing real-world health experiences that help you, other patients like you, and organizations that focus on your conditions.
You’ll hear us talk more than ever this year about living better, together. What does that mean to you? As we kick off 2013, just know this…what inspires us most to live better, together is YOU.
From everyone at PatientsLikeMe, Happy New Year!

2 Comments
Categories:
ALS, Chronic Fatigue Syndrome/ME, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mood Conditions, Multiple Sclerosis, Openness, Organ Transplants, Parkinson's Disease, Rare Diseases
Tags: | Tagged: live better together, New Year's video, PatientsLikeMe team
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Posted by admin | December 31, 2012
Can you be friends with someone you’ve never met in person?
The members of our online health community – now 170,000+ patients strong – think so. In fact, many of them say they depend on other members for support and encouragement, and for the all-important reminder that they are not alone.
As evidence, here is a touching poem written by a newer PatientsLikeMe member. Although he wishes to remain anonymous, he says that he wrote the poem to “uplift people who feel like no one understands them.”
Dedicated to Internet Friends
It’s strange to have a friend
that you have never hugged,
lightly touched their arm,
or looked into their eyes.
But you have touched their soul
felt their heart
been embraced by their warmth of being.
A friend unseen is not a friend untouched.
The eyes of the soul will gaze,
the heart will embrace
the image will stand tall
but only in a dream.
Want to connect with those who can truly relate? No matter what health condition you have – from multiple sclerosis to fibromyalgia to Parkinson’s disease – find others like you at PatientsLikeMe.
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Categories:
ALS, Chronic Fatigue Syndrome/ME, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mood Conditions, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Rare Diseases
Tags: | Tagged: Internet friends, online health community, online health forums, online support, patient poem
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Posted by admin | December 10, 2012

For many newly diagnosed patients, accepting help can be as difficult as accepting the diagnosis itself. According to some of the members of our Parkinson’s disease community, here are a few signs that you may be struggling with the idea of becoming someone who might need help.
- Have you found yourself feeling resentful when family, friends or strangers try to assist with something?
- Have you resisted using a complimentary wheelchair (e.g., at the airport or on cruise ship) out of embarrassment?
- Have you worried that becoming someone who receives help is going to change your lifelong identity?
If you answered “yes” to any of these questions, you are far from alone. Many PatientsLikeMe members report that learning to accept help gracefully is one of the most challenging aspects of chronic illness. And it’s not just allowing the help itself, per se, but seeing yourself in a new light, as one member puts it. It’s not unusual to take great pride in being a superman or superwoman, the type of handy, resourceful person who does it all and is always helping others in the family or community. This can be part of your self-image, as well as a source of self-esteem.
So what do you do when you are suddenly the person being helped instead of the helper? It requires a psychological shift, according to our members, that involves letting go of ego and viewing the care and assistance you are receiving as a gift, not an insult. It also means communicating frequently and lovingly about the issue, so as to address “the elephant in the room.” If you can manage the task yourself, speak up and say so politely, advises one patient. Otherwise, practice saying “thank you” and “I love you” with gratitude, encourages another member. Ultimately, as our members state over and over, the best tools for coming to terms with the realities of your new life are a positive attitude, humor and support from others like you.
Can you relate to this common hurdle? Join this insightful discussion in our forum or share your thoughts in the comments section.
1 Comment
Categories:
ALS, Chronic Fatigue Syndrome/ME, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mood Conditions, Multiple Sclerosis, Openness, Organ Transplants, Parkinson's Disease, Rare Diseases
Tags: | Tagged: chronic illness, coming to terms, ego, family communication, forum discussion, identity, learning to accept help, newly diagnosed, Parkinson's Community, patient advice, patient experiences, patient tips, positive attitude, pride, psychological challenges, self-esteem, self-image, wheelchair
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Posted by admin | November 26, 2012
Is there a caregiver in your family? For example, someone who looks out for an elderly parent or grandparent – or who cares for a child or spouse with a debilitating illness?

November is National Family Caregivers Month, a time for recognizing the important role of family caregivers in our society as well as the challenges they face on a daily basis. Currently more than 65 million Americans (or approximately 29% of the US population) are serving in a caregiver role in any given year, averaging 20 hours per week. Approximately 66% are women. The value of services these caregivers provide for “free” when caring for older adults is estimated to be $375 billion per year.
Yet what many people may not think about is the economic and health impact on the family caregiver. Financially, caregiving families have median incomes that are 15% lower than non-caregiving families, and women caregivers are 2.5 times more likely to live in poverty than non-caregivers. In terms of health and well-being, approximately 40 to 70% of caregivers report clinically significant symptoms of depression, according to one study, while 55% say they skip doctor appointments for themselves. Read other eye-opening caregiver statistics here.
PatientsLikeMe strives to support and involve caregivers with our “CareTeam” concept, which was developed to include everyone who participates in the care of our patient members. That could be a spouse/partner, parent, child, doctor, therapist, home health worker, sibling, relative or friend. Patients can invite caregivers to join PatientsLikeMe, and once they are members, send them a CareTeam invite to link together their profiles. That way, both the patient and caregiver can stay abreast of how the other is doing physically, emotionally and socially.

Currently, there are more than 7,000 caregivers registered with PatientsLikeMe, many of whom are active users of our forums, who chart their own symptoms and treatments and who are seeking information, guidance and support directly from patients or other caregivers. Browse their profiles – even if they have no specific health issues, caregivers can monitor their well-being with tools like our InstantMe and Quality of Life surveys – and find out what their life is like today.
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Categories:
ALS, Chronic Fatigue Syndrome/ME, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Media Coverage, Mood Conditions, Multiple Sclerosis, Openness, Organ Transplants, Parkinson's Disease, Rare Diseases
Tags: | Tagged: caregiver community, caregiver statistics, caregivers, CareTeam, caring for a child, caring for a spouse, depression, elder care, financial impact of caregiving, InstantMe, National Family Caregivers Month, parent caregivers, Quality of Life survey
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Posted by admin | November 21, 2012

It may seem counterintuitive, but according to some of our members, there are actually some good things that can come out of being diagnosed with a serious illness. In the spirit of Thanksgiving – a time when many people are reminded of all the things they have to be grateful for – we thought we would share some of our members’ uplifting sentiments.
From our Fibromyalgia Community, some of the unexpected benefits include:
- Getting to spend more time with children or grandchildren
- Taking advantage of “good days” with a little extra gusto
- Appreciating what you have…and knowing it could be worse
- Refocusing on new hobbies like gardening and meditation
From our Multiple Sclerosis (MS) Community, some of the unexpected benefits include:
- Letting go of the pressurized feeling that you have to do it all
- A deeper understanding of how many people face major challenges
- Discovering new artistic talents, such as painting or needle work
- Slowing down the pace of life and prioritizing sleep – without guilt
From our Epilepsy Community, some of the unexpected benefits include:
- Learning to never judge a person by only what you see
- Becoming more patient and not taking anything for granted
- Filtering out fair-weather friends and uncaring partners
- Having extra motivation to live the healthiest lifestyle possible
What about you? Have you noticed some positive takeaways from your illness? Share them in our comments section in honor of Thanksgiving. And, from everyone at PatientsLikeMe, we wish you and your loved ones a wonderful holiday!
5 Comments
Categories:
ALS, Chronic Fatigue Syndrome/ME, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mood Conditions, Multiple Sclerosis, Openness, Organ Transplants, Parkinson's Disease, Rare Diseases
Tags: | Tagged: being thankful, benefits of disease, gratitude, inspirational, patient sentiments, thanksgiving, unexpected benefits of illness, uplifting thoughts, upside of illness
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Posted by admin | November 7, 2012
Here are some of the media items that grabbed our attention recently.
Four Things I Learned from Living with a Chronic Illness
Wise advice from a teenager who had to give up competitive gymnastics and find a new perspective on life after being diagnosed with a disease that causes chronic pain.
Access to Doctors’ Notes Aids Patients’ Treatment
A new study finds that patients better understand their condition and feel more in control when they can read their doctors’ notes (something you’re legally entitled to access).
Why We Need Ecological Medicine
Do we need exposure to a diversity of bacteria and germs for optimal immune health? A thought-provoking essay about the “germ theory,” “hygiene hypothesis” and more.

Coming Next: Using an App as Prescribed
A New York Times piece about whether healthcare apps – now regulated by the FDA – could reduce costs and change the way we monitor health.
Help with ALS via Twitter
An article about our partner ALS Untangled and how they are applying scientific rigor to the investigation of alternative therapies in ALS, having reviewed 45 to date.
Mining the Internet for Speedier Alerts on Drugs
The Wall Street Journal examines the results of a study showing that Internet search algorithms can detect adverse events for certain drugs ahead of FDA warnings.
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Categories:
ALS, Chronic Fatigue Syndrome/ME, Conditions, Drug Safety, Epilepsy, Fibromyalgia, HIV/AIDS, Media Coverage, Mood Conditions, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Rare Diseases, Research
Tags: | Tagged: adverse events, ALS Untangled, chronic pain, doctors' notes, ecological medicine, germ theory, health apps, hygiene hypothesis, What We're Reading at PatientsLikeMe
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Posted by admin | October 15, 2012
On October 9th, Bloomberg TV aired a four-and-a-half minute “Innovators” segment profiling PatientsLikeMe’s journey as a company. Filmed partially in our office in Cambridge, Massachusetts, the piece features PatientsLikeMe Co-Founder and Chairman Jamie Heywood as well as Ed Sikov, a PatientsLikeMe member with Parkinson’s disease. Our thanks go to Bloomberg’s Nicole Lapin for her in-depth coverage of our evolution into a data-sharing platform that, as she puts it, “functions more like a clinical trial.”
Watch the Bloomberg TV profile below:
Visit our Press page for other recent PatientsLikeMe media highlights.
2 Comments
Categories:
ALS, Chronic Fatigue Syndrome/ME, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Media Coverage, Mood Conditions, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Rare Diseases
Tags: | Tagged: Bloomberg TV, data-sharing, Ed Sikov, Innovators segment, jamie heywood, Nicole Lapin, PatientsLikeMe evolution, TV feature, TV piece, TV profile
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Posted by admin | August 27, 2012
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 out two books recommended by our members for inspiration: Strong at the Broken Places, about five different patients with chronic illnesses including ALS and Crohn’s disease, and 29 Gifts, written by a multiple sclerosis (MS) patient whose South African healer gave her a prescription of helping others for an entire month.
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Categories:
ALS, Chronic Fatigue Syndrome/ME, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mood Conditions, Multiple Sclerosis, Openness, Organ Transplants, Parkinson's Disease, Rare Diseases
Tags: | Tagged: 29 Gifts, altruism, chronic illness, giving, helping, inspiring books, self worth, self-esteem, Strong at the Broken Places, volunteering
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Posted by admin | August 20, 2012
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 you used PatientsLikeMe?
I specifically used it in one of my clinics. I follow a number of teenagers that have orthostatic intolerance and also chronic fatigue and fibromyalgia and other conditions related to orthostatic intolerance. I get a lot of questions about different medications. The families are very well versed in information and are always looking for new sites to visit. So I will often direct them to PatientsLikeMe. You can find sites with support groups, but you never really know how many people are involved. Then people are going online and looking up things by themselves. But I felt that all the information being presented back through PatientsLikeMe was pretty good.
One example was a 16-year-old patient with fibromyalgia. Their family doctor had recommended she take gabapentin based on a news article. So in the past, and even currently, one of the ways I would look at this situation and get as much information as possible would be to go on sites like PubMed or Bandolier, the Oxford site in the UK, and try to pull together what worked and what didn’t work. Some of these sites are pretty good because often they will tell you what the positive outcome is. But one of the difficulties is that they don’t always tell you what the adverse affects are.

It was nice because I sat down with this patient and we pulled up PatientsLikeMe. And I think at that time there were a couple hundred patients that had been on gabapentin and the actual number that had side affects, I’m just recalling now from a few years ago, was equivalent or slightly greater than the amount who had actually benefited from the medication. So we made a decision at that time not to actually go on gabapentin. Instead, we tried some other things. It was very helpful in my daily stream of care to be able to do that.
3. We have a large community of fibromyalgia and chronic fatigue syndrome (CFS) patients at PatientsLikeMe. What are some of the challenges for adolescents with these conditions?
There are multiple challenges. I think the first challenge is that it’s really an undefined condition. There isn’t a specific diagnostic test, so labeling is a bit of a challenge. Sometimes it takes time for people to understand the impact. And, it’s the same as any chronic illness that doesn’t have overt physical symptoms. You know, everyone looks normal but they feel terrible. When you’re feeling bad all the time physically, or a lot of the time physically, that can make you feel unwell mentally. So having a place where you can go to actually hear that and learn how other people are coping and dealing with it is a big benefit. It certainly shouldn’t hurt, right? And there can be some pretty positive effects from having a community as well.
We are making a diagnosis based on a constellation of symptoms so there are probably a lot of different disorders or a lot of different reasons why someone has a diagnosis of chronic fatigue. So because it’s such a heterogeneous group, there are going to be a lot of different management and therapeutic approaches. So, you really need a large number of people to start understanding what’s working and what’s not working. And again, compiling and pulling that information together is quite beneficial.
4. Do you have any thoughts on how large online data sets at PatientsLikeMe or other websites could shape the future of healthcare?
You can’t manage what you can’t measure, right? That’s quite obvious. So, if we can do better measurements along knowing what your population is, but have something on what the actual outcomes are, that should be beneficial in the long run. It’s like anything. You have to know your population really well. And if you can define your population really well, then these large data sets, and I would say sites like PatientsLikeMe, can be quite powerful. It is a definite movement and force going forward, for sure. You need thoughtful stewardship for this, and you need a thoughtful ability to analyze the data and make clinical sense from it.
5. Anything else you want to add about PatientsLikeMe?
For me, there are two other things. First, the actual connections for people from sites like this are quite important – you know, the support group piece. And also you will have people with multiple problems and they may be doing something that seems to be a bit unique but is beneficial. Also, say you have a condition which is rare and there are only a couple of hundred cases in the world. You learn so much more when you start connecting and you find that maybe a problem, like fever, is a normal part of the illness and people just haven’t gotten together to figure it out. Being able to share that information relieves a lot of stress for families – we hate the unknown – and is quite powerful.
Second is the explosion in clinical information, especially the way things are going with genetics, molecular biology and bioinformatics. The ability to be diagnosed or know your risk and response to treatment with one or multiple diseases based on your genetic material is fantastic. While there is tremendous potential, this is extremely complex and what we are going to see is that our phenotypes, our observable characteristics or traits, may or may not match our genotypes, the inherited instructions within our genetic code. I think sites that can link large groups are going to become more powerful.
So, as we are pulling all those things together, it will be important to have a source where you can actually be able to make sense of it and make it a lot easier to get some prognosis for guidance for people about what’s going to happen. Because a lot of times, you’re sort of in the dark with a lot of uncertainty for some conditions. So I think pulling that information together can be quite powerful and liberating.
5 Comments
Categories:
Chronic Fatigue Syndrome/ME, Drug Safety, Fibromyalgia, Genetics, Rare Diseases, Research, Technology
Tags: | Tagged: adolescents with chronic fatigue, adolescents with fibromyalgia, CHEO, Children's Hospital of Eastern Ontario, chronic fatigue syndrome, connecting patients, Dr. James King, Dr. Jim King, gabapentin, gabapentin side effects, genetic diagnosis, Genetics, genotypes, neurontin, Neurontin side effects, online support groups, orthostatic intolerance, patient-reported data, pediatrician, phenotypes, physicians using PatientsLikeMe, Rare diseases, real world patient data, teenagers with chronic fatigue, teenagers with fibromyalgia
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Posted by admin | July 9, 2012
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 connections and this is made so much easier with the advent of the web.
2. You’ve been a member of PatientsLikeMe since 2007. What key changes have you seen the site go through in that time?
I am not 100% sure where I first found out about PatientsLikeMe but it was most probably via the main ALS TDI Forum. I’m not a “regular” PatientsLikeMe forum poster with only 197 posts since February 2007. Some key changes that spring to mind: the addition of a PatientsLikeMe blog was a great development. A couple of years ago, a “Share This” button was added to the blog making it much, much easier to share content via social networking sites, etc.
The PatientsLikeMe platform itself has expanded in many ways since 2007. At that time, if I recall correctly, ALS/MND was the only disease covered. Now, that has increased to >1,200 conditions, so that alone is a major development. New features get rolled out on a regular basis and they are accompanied with good and clear explanations. It’s also much easier to ‘drill down’ to/for specific content, and the site is generally simpler to navigate than back in 2007, IMHO.

3. You have recently campaigned for open access publishing. Why is this important to patients?
Yes, as of late 2006, I stumbled upon my first Open Access (OA) Manuscript, as it happened via Public Library of Science Pathogens. Up until that point, I had assumed that ALL Scientific, Technical & Medical (STM) content was locked up behind paywalls. As such, it was very enlightening to discover an alternative to traditional publishing. As matters stand though, only ~15% of Peer Reviewed STM Manuscripts are OA, and subscription-based publishing is still “the norm.” The reason that I became part of the OA Community was to use my networking skills to make more people aware of and involved in OA. OA itself however is just one cog (but a significant one) in the wheel of Open Science!!
“Why is OA important to patients?” Where does one start?! One of the best recent responses to that question comes from PatientsLikeMe’s very own Dr. Paul Wicks with his guest post over at the Public Library of Science Blogs dated June 14th, 2012, and entitled “Open Access Is Not For Scientists. It’s For Patients.”
Two key sections of that post that stood out for myself most were:
“In the past six years, we’ve found that more and more patients are trying to access research studies written about them, including studies where they were participants. In addition, they are increasingly capable of understanding them. Yet closed access is locking them out of better understanding their conditions and their choices.”
And…
“As a society, we need to recognize that our understanding of disease doesn’t belong to science. It belongs to the patients (who are also usually our funders, by the way), and we should exist only to serve them.”
4. What do you see as being critical for the future of patient advocacy?
The Internet, Open Data and The Semantic Web. In terms of the sharing of data from patients, PatientsLikeMe was the first platform (that I am aware of) that made it easy for patients to share their data online with others. Whilst this data is “open,” it is open to the PatientsLikeMe community (and selected others) but not open at large. As stated in June this year by Sir Paul Nurse, “the President of the Royal Society said there was a need to put safeguards in place to protect confidentiality.” Sir Paul said that in reality no data was “totally secure” and that doctors already relied on personal information for treatment. “If you want a complete guarantee of privacy you would have to diagnose and treat yourself,” he said. (Also, see the recent “Science as an open enterprise” report by The Royal Society).

In terms of the semantic web and link data, entities such as http://linkeddata.org/ and http://www.linkeddatatools.com/ have a lot of potential in terms of what we can do in a linked up world. Also in June, in his talk at TED Global entitled “Unreasonable People Unite,” John Wilbanks made a number of interesting points. From the TED Blog:
“Wilbanks’ proposal is a medical commons, a way for people to gather this medical data and share it freely. People are neurotic about privacy and keeping control of their data. ‘Some of us like to share as control.’ And, he believes we live in an age where people agree with him. He mentions a study run at Vanderbilt University in Tennessee. ‘It’s not the most science-positive state in America,’ he says. ‘Only 5% wanted out. People like to share if given the opportunity and choice.’ And not using this data to understand health issues through mathematical analysis ‘is like having a giant set of power tools but leaving them not plugged in while using hand saws.’”
4 Comments
Categories:
ALS, Chronic Fatigue Syndrome/ME, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mood Conditions, Multiple Sclerosis, Openness, Organ Transplants, Parkinson's Disease, Rare Diseases, Research
Tags: | Tagged: blogger, data-sharing, Graham Steel, John Wilbanks, medical commons, OA, OA Community, Open Access, open data, open science, patient advocacy, patient advocate, Paul Wicks PhD, semantic web, shared data, Tweeter, vCJD
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Posted by admin | May 14, 2012
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 well-woman visits – are now covered by your insurance plan with no out-of-pocket costs.

But scheduling an appointment may just be the first step. If you’re looking to get healthy in 2012, why not do it with the help of a community? The 2012 WOMAN Challenge offers an online platform for tracking your nutrition goals and daily activity. The challenge is to follow through with planned nutrition changes and be active 30 minutes a day, at least five days a week, for six out of eight weeks. Register here to get started.
If you’re a woman living with a health condition, you can also find a community of women right here at PatientsLikeMe. We have 70,995 female members who are sharing how they are managing more than 1,000 different conditions, including fibromyalgia, endometriosis, menopause, infertility and postpartum depression. Take control of your condition with the help of women just like you today.
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Categories:
ALS, Chronic Fatigue Syndrome/ME, Conditions, Conferences/Events, Epilepsy, Fibromyalgia, HIV/AIDS, Media Coverage, Mood Conditions, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Rare Diseases
Tags: | Tagged: 2012 WOMAN Challenge, colon cancer screening, daily activity, endometriosis, Fibromyalgia, infertility, mammograms, menopause, National Women's Checkup Day, National Women's Health Week 2012, nutrition, Pap smear, postpartum depression, preventative screenings, regular checkups, screening guidelines for women, women's health, women's health community
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Posted by admin | March 23, 2012
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 carried in the genes or that some families have traits that make them more likely to get it. In other mysteries, scientists have not yet pinpointed how endometrial tissue travels through the body, although there are several theories.

Despite the unknowns, there are many things you can learn from the 400+ women who report endometriosis at PatientsLikeMe. How are they coping? Some commonly reported treatments include a conventional hysterectomy, laparoscopic hysterectomy, Seasonique (a birth control pill that produces four periods a year), Mirena (an IUD contraceptive device) and the prescription drug Lepron Depot. Click on each treatment to see how others evaluate the effectiveness, side effects, cost and more. And if you yourself have endometriosis, share your experiences and connect other women like you today.
2 Comments
Categories:
Chronic Fatigue Syndrome/ME, Conferences/Events, Fibromyalgia, Multiple Sclerosis, Openness
Tags: | Tagged: chronic lower back pain, endometriosis, Endometriosis Awarness Month, hysterectomy, infertility, intestinal pain, laparoscopic hysterectomy, Lepron Depot, Mirena, pain after sex, pain during sex, painful bowel movements, painful menstrual cramps, painful urination, pelvic pain, Seasonique, women's health
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Posted by admin | February 27, 2012
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 to jog your memory and get your doctor updated quickly.

The DVS now includes your InstantMe history along with all the helpful notes you’ve made about things like treatment changes and new or repeat symptoms. Bottom line: the more you use InstantMe, the more details you’ll have about how you’ve been feeling – and why.
Are you due for an “annual”? Customize and print your DVS here.
- Kate, Emma, Liz, Jeanette & Sharry

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PUTTING THE “INSTANT” IN INSTANTME

Did you know there’s a mobile version of InstantMe that’s now available for iPhone, iPad and, most recently, Android users? We hope it’s a convenient way to record how you’re feeling on the go – whether you’re in the line at the store or watching your child’s soccer game. Stay tuned as we continue to improve Mobile InstantMe in 2012.
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Tags: | Tagged: annual exam, annual physical, cholesterol, Doctor Visit Sheet, health monitoring, InstantMe survey, labs and tests, Mobile InstantMe, monitoring lab results, newsletter, Vitamin D
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