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Spoons and forks – not just for summer picnics

There are a ton of activities to do during the “lazy, hazy, crazy days of summer.” And whether you’re living with a chronic condition or not, it’s good to learn how to manage your energy. Christine Miserandino, who lives with lupus, created her “Spoon Theory” as a way to think about how much energy we have available. Here’s how it works: Pretend that you have a handful of spoons that represent all the energy you have for the day. Depending on your health, you’ll need to use some of those spoons to get dressed, make a pot of coffee or take care of your pet. Once you’ve done the daily ‘essential’ activities, you’ll know how much energy you’ve got left for other things, like going for walk on a summer evening. The great thing about the Spoon Theory is that it works for everyone – you choose how many spoons to start with each day and know how many you have left. It’s also an easy way to communicate with others how you’re feeling at any given time. Maybe you’re not feeling like that hike with trekking poles in the woods. It may be hard to say ‘no,’ but easier …

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Sally Okun explains the new research collaboration with the FDA

Yesterday, we announced a new research collaboration with the U.S. Food and Drug Administration (FDA) that will explore how patient-reported data can lead to new insights about drug safety. It’s the first time the FDA will analyze patient-generated data for pharmacovigilence (aka drug safety). But we’re no strangers to drug safety. Check out some of the previous work the community has helped to drive: PatientsLikeMe Offers Adverse Event Reporting for MS Patients Improving drug safety through the patient voice PatientsLikeMe and UCB open free online community for people with Epilepsy in the U.S. To learn more about this new (and unprecedented) collaboration, we talked to our very own Sally Okun, Vice President of Advocacy, Policy and Patient Safety. What will this collaboration do? Patients’ lives and well-being often depend upon medical products approved and regulated by the FDA. But most of the information we see on safety labels comes from clinical trials, which aren’t typically representative of the actual populations of patients who will take the medication. Working with us, the FDA will be able to see the real-world impact of taking medications over time, which can help identify benefits and risks earlier. The FDA isn’t just talking about patient-centricity; …

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PatientsLikeMe and the FDA Sign Research Collaboration Agreement

WASHINGTON D.C., June 15, 2015—PatientsLikeMe and the U.S. Food and Drug Administration (FDA) have signed a research collaboration agreement to determine how patient-reported data can give new insights into drug safety. Under the collaboration, PatientsLikeMe and the FDA will systematically explore the potential of patient-generated data to inform regulatory review activities related to risk assessment and risk management. The announcement was made at the start of the Drug Information Association’s (DIA) annual meeting in Washington D.C. PatientsLikeMe Co-Founder and President Ben Heywood said the agreement is an unprecedented step toward enhancing post-market surveillance and informing regulatory science. “Most clinical trials only represent the experience of several hundred or at most several thousand patients, making it impossible to anticipate all the potential side effects of drugs in the real world. Patient-generated data give a more complete picture about a drug’s safety by providing a window into patients’ lives and healthcare experiences over time. We’re very encouraged by the FDA’s action to evaluate newer sources of data to help identify benefits and risks earlier.” The cornerstone of the FDA’s post-approval drug safety surveillance is a spontaneous reporting system consisting of individual case safety reports. Reporting adverse events to the FDA is mandatory for …

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Sally Okun reports back from the FDA Patient-Focused Drug Development Public Meeting on IPF

On September 26th I was at the FDA for the Patient-Focused Drug Development Public Meeting on IPF. This is one of 20 meetings that the FDA is holding to learn directly from patients and their caregivers about daily life with the specific condition’s symptoms and treatments. (You can learn more about these meetings here.) I have attended a number of these meetings and often have meaningful data to share from our own PatientsLikeMe members. So far, however, the FDA has only allowed patients and caregivers to present and participate as panelists. So to get as much of our members’ real-world health data in front of the FDA as possible, I take full advantage of the public comment period at the end of each meeting. It’s a short 3-5 minutes of time, but it’s a chance to share insights from PatientsLikeMe members and to reflect on some of what’s been discussed during the public meeting. In addition, we submit a full report to the FDA’s public docket that is open for comment two full months following the meeting. The report includes a community profile and the results of any polls PatientsLikeMe members have taken part in prior to the meeting. This meeting was …

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Ovarian cancer – taking early action

Do you know why teal is the official color for Ovarian Cancer Awareness Month? It’s an acronym for Take Early Action and Live. This September, we can all do our part to help people understand what it’s like to live with this condition, including spreading awareness and education for early signs and symptoms. In 2014, the American Cancer Society (ACS) predicts over 20,000 women will be diagnosed, and more than 14,000 others already living with ovarian cancer will die from complications. Here are the straight facts about ovarian cancer from the ACS: 1 in every 73 women will be diagnosed with ovarian cancer at some point in their lives. Ovarian cancer ranks 5th in cancer deaths among women. The lifetime chance of passing away from ovarian cancer is 1 in 100. If you’re in the area, you can attend one of the National Ovarian Cancer Coalition’s (NOCC) many events this autumn, and you can also share the TEAL poster on social media. And if you’re living with ovarian cancer, you can also connect with other women like you in the PatientsLikeMe community. Share this post on Twitter and help spread the word for ovarian cancer.

It’s time to recognize National Anxiety and Depression Week

We already posted about raising awareness for mental health, and now we’re recognizing National Anxiety and Depression Awareness Week (May 5-10). Since 1994, the week has been organized by Freedom from Fear, a national non-profit focused on raising awareness for depression and anxiety. If you haven’t heard much about these two conditions, here are some quick facts from the Anxiety and Depression Association of America (ADAA):   An estimated 40 million American adults live with anxiety.1 Only one third of these people receive treatment.1 At any time, 3% to 5% of all people are experiencing depression.2 The lifetime risk of depression is about 17%.2 Nearly one-half of those diagnosed with depression are also diagnosed with an anxiety.2 According to the ADAA, common anxiety symptoms can range from increased worry and social tension to extreme restlessness or general fatigue, and often, these symptoms can be magnified by depression. Over 17,000 PatientsLikeMe members report being diagnosed with either generalized anxiety or major depression, including almost 7,000 who are living with both conditions. If you’re experiencing anxiety or depression, you’re not alone – you can share your story in the forum and find support on any topic. The PatientsLikeMe mood community is always …

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