Chronic Fatigue Syndrome

A Peek at the December Newsletters for Members

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our December 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 Can’t sleep this holiday season?  It’s not just you.  Did you know that… More than 23,000 of you – nearly a fifth of all PatientsLikeMe members – report insomnia? People with insomnia may also experience impaired function, mood issues (e.g. irritability, anxiety) and daytime drowsiness as a result? There are two forms of insomnia:  secondary (where it’s the symptom or side effect of something else) and primary (where it is its own disorder)? Members with insomnia have shared their experiences via hundreds of treatment evaluations for prescription drugs such as Ambien, Trazodone, Seroquel and Lunesta? Members have also evaluated over-the-counter (OTC) sleep aids like diphenhydramine (Benadryl) and Melatonin as well as herbal supplements such as Valerian and Passionflower? There are numerous forum discussions about insomnia, including the six featured below in “Join the Conversation”? Finally, here’s something else to know.  …

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Coping with Holiday Stress and Blues

It’s the most wonderful time of the year.  Or is it? The holidays can be a time of merriment and joy marked by festive parties and family reunions.  But they can also be quite challenging. Despite the great cheer advertised everywhere you look, some people find themselves struggling with stress, anxiety, loneliness and/or depression.  This phenomenon is sometimes called the “holiday blues.”  Add to that things like fatigue, insomnia and seasonal affective disorder (SAD) – which affect many PatientsLikeMe members on a regular basis – and you have the recipe for a perfect holiday storm. Here’s a look at how our patients are attempting to cope with the stresses of the season: “Seeing all the lights, the preparations, the shopping for the holidays makes me dread what is coming.  I try to go to low-key places where there isn’t as much traffic and aren’t as many people.  I try to play down the importance of everything so I don’t become so obsessed with choices and opinions.  I take breaks.  LOTS of breaks.  I try to make sure I take them before I even become overwhelmed in the first place. And I try to find free things to replace some of the …

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What Patients Are Thankful For

Thanksgiving is a time for remembering all the reasons you have to be grateful.  For patients who face numerous health challenges, this can mean reminding yourself of all the things you have gained – not lost – since your diagnosis. One theme that we’re especially proud to hear our 120,000+ members express is how thankful they are to have found a community of people who truly “get” them at PatientsLikeMe.  Our founders envisioned a way to connect patients with others just like them – so they could learn from each other, support each other and help accelerate the pace of medical research – and today, it’s become a reality.  Touchingly, it’s also been the start of many important friendships among our members. Here are some patient stories that moved us this year: “The people on this site deserve more than a simple thank you from me.  The night I found PatientsLikeMe was about eight hours after my neurologists had told me, ‘You have non tremor Parkinson’s disease.’ That night I had some stinking thinking going on.  I considered myself a freak.  Thanks to this site I now consider myself unique.  We are all unique. To my Parkinson’s brothers and sisters, a big THANK …

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Giving Caregivers the Recognition They Deserve

“The true strength of the American family finds its roots in an unwavering commitment to care for one another.” – President Barack Obama November is National Family Caregivers Month, “a time to thank, support, educate and empower family caregivers.”  There are more than 65 million family caregivers in the US who day in and day out fulfill a vital role on the care team for a family member.  They also tend to be the most knowledgeable person when it comes to daily treatment, diet and exercise regimens for the person they love. The theme for National Family Caregivers Month 2011, sponsored by the National Family Caregivers Association (NFCA), is “Identifying Family Caregivers.”  The goal is to encourage both caregivers and medical providers to ask for a designated space on every medical intake form for a caregiver name.  Otherwise, the NFCA argues, caregivers are “invisible in American healthcare.” In contrast, caregivers play an important and prominent role in PatientsLikeMe’s “CareTeam” concept, which was developed to include everyone who is actively involved in the care of our patient members.  That could be a spouse, partner, parent, child, doctor, home health worker, relative or friend.  Patients can invite anyone on their real-life CareTeam …

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It’s the Season for Seasonal Affective Disorder

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. 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 …

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Reflecting on National Disability Employment Awareness Month

Have your health conditions ever caused you to lose a job? Or prevented you from applying – or getting hired – in the first place? October is National Disability Employment Awareness Month, an event that aims to recognize the skills that those with disabilities bring to the workforce and promote employment opportunities and access for those with disabilities. The issue, of course, is that discrimination, employment barriers and higher rates of unemployment remain ongoing concerns for Americans with disabilities. Here’s what the White House’s Presidential Proclamation has to say about these troubling statistics: “More than 20 years after the signing of the Americans with Disabilities Act (ADA), individuals with disabilities, including injured veterans, are making immeasurable contributions to workplaces across our country.  Unfortunately, the unemployment rate for people with disabilities remains too high — nearly double the rate of people without disabilities — and reversing this trend is crucial.” – President Barack Obama Last week, we featured a post about wheelchair barriers and hazards and asked readers to appraise their neighborhood for wheelchair accessibility. Today, we ask you to think about the barriers to employment that might exist for people with disabilities – both physical and mental – in your …

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What Patients Are Saying About Physical Therapy

Mobile.  Active.  Independent.  How close are you or the patient in your life to those attributes? October is National Physical Therapy Month, which is designed the highlight the role of physical therapy (PT) in restoring and improving motion.  According to the American Physical Therapy Association (APTA), the benefits can include enhanced quality of life as well as avoiding surgery or the long-term use of prescription medications. The theme for this year’s event is Sports Injury Prevention Across a Lifespan.  “Participating in sports the right way is the key to avoiding injuries that can sideline you for a significant amount of time,” writes the APTA.  Learn more about preventing sports injuries and the role of PT at www.MoveForwardPT.com. Here at PatientsLikeMe, 700 patients report using PT as part of their treatment regimen, and nearly 300 of them have submitted treatment evaluations of their experience.  The most common reported dosage is “weekly,” and the most common reported reason for having PT is stiffness/spasticity. What do these patients have to say?  Here’s a sampling of their feedback: “I had not realized how badly I walked and moved until my PT evaluation and treatment. PT has helped me regain muscle movement and has helped …

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Get Healthy for Good: An Interview with Catie Coman of the National Psoriasis Foundation

In August, we recognized Psoriasis Awareness Month on our blog and shared some facts and figures about this autoimmune disease, which affects 7.5 million Americans. One of the statistics we shared is that psoriasis often occurs in conjunction with other serious health conditions, including diabetes, hypertension, heart attack and obesity. What these conditions share is that they can often be improved by reaching an ideal body weight. But losing weight – and maintaining it – is easier said than done. That’s why the National Psoriasis Foundation has launched the Healthy for Good campaign. Here’s what Catie Coman, Director of Communications at the National Psoriasis Foundation, tells us about this new online program. 1. What is Healthy for Good, and why should patients join in? Healthy for Good (www.healthyforgood.org) is program designed to help people lose weight, while raising funds for a cure for psoriasis and psoriatic arthritis. It’s unique in that is uses a public platform and the fundraising tactic of “friends asking friends” to help people reach their goals. Forty percent of people with psoriasis have metabolic syndrome, a cluster of conditions such as high blood pressure, diabetes and abdominal obesity. By joining Healthy for Good, they’ll get tools …

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How’s Your HDL and LDL?

September is National Cholesterol Education Month, which means it’s a good time to find out your total cholesterol levels as well as your HDL (“good” cholesterol) and LDL (“bad” cholesterol) levels. Have you had them checked in the last five years? More than 102 million Americans have a total cholesterol level at or above 200 mg/dL, which is beyond healthy levels, and more than 35 million of those individuals have levels of 240 mg/dL or higher, which puts them at high risk of heart disease. That’s a major concern given that heart disease is the leading cause of death in the United States. Fortunately, high cholesterol can be lowered with lifestyle changes – including losing weight, eating healthier, exercising and quitting smoking – as well as medication. But to start turning things around, you have to know there’s a problem. Even children and adolescents can have high cholesterol, especially if they are overweight. Here at PatientsLikeMe, 335 patients report hypercholesterolemia (high cholesterol) while 235 patients report hyperlipidemia (high lipids in the blood, including cholesterol and triglycerides.) Across both conditions, some of the top reported medications include Simvastatin, Atorvastatin, Pravastatin and Rosovastatin. If you’re unsure of your cholesterol levels, talk to …

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See the PatientsLikeMeInMotion Program in Action

We’ve shared a lot of great photos on the blog lately of run/walk teams sponsored by PatientsLikeMeInMotion this year. Now you can learn more about this dynamic program in a more dynamic format with our new PatientsLikeInMotion video. Find out how to get involved, what sponsorship entails and how much PatientsLikeMe has donated towards our sponsored teams’ fundraising efforts since the program’s inception. Ready to get out there and raise awareness and funds for your condition? Let us support you every step of the way. Sign up for PatientsLikeMeInMotion today.

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