International Awareness Day for Chronic Immunological and Neurological Diseases

Raising awareness for immunological and neurological health in May

Earlier this year, we interviewed Team of Advisors member Craig, who’s living with fibromyalgia. Craig talked talked about the need to raise awareness for “hidden disabilities” like his condition. So today, we’re doing just that. May 12 is International Awareness Day for Chronic Immunological and Neurological Diseases (CINDs), which include fibromyalgia and myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS). Those living with fibromyalgia or ME/CFS can have many symptoms that aren’t always easy to explain to others. Below, Craig describes a typical day for him in vivid detail: “Imagine that you’ve just worked one of the hardest days of your life. You are so tired that you can hardly walk. Just changing your clothes is almost more effort than you can handle. Every muscle in your body is aching and tired, and the slightest movement of some of them sends them into a tight painful spasm.”   But while fibromyalgia and ME/CFS are both chronic pain syndromes, they aren’t exactly the same. Patients living with ME/CFS experience five main symptoms1, as opposed to the more general symptoms of fibromyalgia: Profound fatigue that impairs carrying out normal daily activities Unrefreshing sleep Cognitive impairment Symptoms that worsen when a person stands up Symptoms …

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Coming together for immunological and neurological health in May

If you follow PatientsLikeMe on social media, you might have seen a few “Pop Quiz Tuesday” posts. Today, here’s a special pop quiz – what do fibromyalgia, myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) have in common? The answer is that they are classified as Chronic Immunological and Neurological Diseases (CINDs). And since 1992, every May 12th has been recognized as International Awareness Day for CINDs. Today, in conjunction with Fibromyalgia Awareness Month, it’s time to recognize everyone living with a CIND. While fibromyalgia and ME/CFS are both CINDs, each is a little different. Check out some quick facts about each condition: Fibromyalgia1 Affects 5 million Americans over the age of 18, and the majority are women The cause of fibromyalgia is unknown Common symptoms include insomnia, headaches, pain and tingling in the hands and feet ME/CFS2 Affects between 836,000 to 2.5 million Americans The large majority of people living with ME/CFS have not been diagnosed There are five main symptoms of ME/CFS, as opposed to the more general symptoms of fibromyalgia: Profound fatigue that impairs carrying out normal daily activities Unrefreshing sleep Cognitive impairment Symptoms that worsen when a person stands up Symptoms that worsen after exerting any …

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Turning blue for Myalgic Encephalomyelitis Awareness

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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May 12th, International Awareness Day for Chronic Immunological & Neurological Diseases

Did you know that May 12th was chosen for International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) because it’s also Florence Nightingale’s birthday? She was a statistician, social reformer and is credited as the founder of modern nursing. It’s also believed that she suffered from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). That’s just one of the several conditions highlighted on International Awareness Day. Some others are… Fibromyalgia (FM) Gulf War Syndrome (GWS) Multiple Chemical Sensitivities (MSC) Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Lyme disease May12.org is hosting a 2013 Awareness campaign on their Facebook page that you can participate in right from home. They’re also encouraging everyone to help spread the word by calling local representatives and asking family members to participate.

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