Chronic Fatigue Syndrome

Turning blue for Myalgic Encephalomyelitis Awareness

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Did you know that today is International Awareness Day for Chronic Immunological and Neurological Diseases (CINDs)? CINDs include fibromyalgia, Gulf War Syndrome, Multiple Chemical Sensitivities, Lyme disease and Myalgic Encephalomyelitis (also know as Chronic Fatigue Syndrome or ME/CFS). ME/CFS is tough to diagnose because there are no tests for it, and other conditions can cause very similar symptoms. Plus, no one knows exactly what causes ME/CFS, and although it is most common in women in their 40s and 50s, it can occur in both genders at any age.1 So why blue? May12.org is encouraging all advocates to turn a part of their body blue for ME/CFS awareness – you can dye your hair (or wear a wig), paint your nails and even Photoshop yourself. Or, just wear a blue t-shirt 🙂 Check out their Facebook page and their website for more information on ME/CFS awareness, and don’t forget to submit your blue photos! If you’re looking for more resources on ME/CFS, PatientsLikeMe member Jen has been working on a film called “Canary in a Coal Mine,” that we shared about on the blog back in October. The film is currently in production after a successful Kickstarter campaign, but you can still check out …

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Canary in a Coal Mine- Raising awareness for myalgic encephalomyelitis

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Everyday on PatientsLikeMe, people just like you are sharing their experiences, contributing to real-time research and raising awareness, together. Jen is part of your patient community and is living with myalgic encephalomyelitis (ME), sometimes called chronic fatigue syndrome. She’s working on a new project called Canary in a Coal Mine to help shed light on this largely misunderstood condition. “Three years ago I became devastatingly ill. Now, there is not a single waking moment when I don’t feel sick. When faced with what seemed like an insurmountable obstacle, I felt the only choice I had was to transform suffering into grace. I believe that by telling these stories, by showing the world what it really feels like to live life with ME, we can change forever the way the world sees this illness. And, by showing the true face of ME, maybe we can put an end to the many injustices that ignorance creates.” –Jen  

Coping with Changes in Physical Appearance

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

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 …

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Live Better Together in 2013

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

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!

A Patient Poem for the Modern Age

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Can you be friends with someone you’ve never met in person? The members of our online health community – now 300, 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.

Not Recognizing the “New Me”

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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. …

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Honoring Family Caregivers Everywhere

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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 …

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What’s Positive About Disease?

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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 …

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What We’re Reading at PatientsLikeMe

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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 …

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PatientsLikeMe Featured on Bloomberg TV

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On October 9th, Bloomberg TV aired a four-and-a-half minute “Innovators” segment profiling PatientsLikeMe’s journey as 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.” Visit our Press page for other recent PatientsLikeMe media highlights. Watch the Bloomberg TV profile below:

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