5 posts tagged “chronic”

Coming together for immunological and neurological health in May

Posted May 12th, 2015 by

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 type (emotional, physical) effort

But sometimes, living with a CIND can be hard to describe. Check out this short video to get an idea of the invisible symptoms of ME/CFS.

Today, you can share your support for fibromyalgia and ME/CFS on social media through the #May12th, #Fibromyalgia and #MECFS hashtags. If you have a chance, you should incorporate the color blue into your activities, anything from changing the background on your Facebook to shining a blue light on your house at nighttime.

And if you’ve been diagnosed with a CIND, join the community at PatientsLikeMe. The fibromyalgia community is one of the largest on the site – over 59,000 people are sharing their experiences, along with more than 11,000 living with ME/CFS.

Share this post on Twitter and help spread the word for CINDs.


1 http://www.niams.nih.gov/health_info/fibromyalgia/fibromyalgia_ff.asp

2 https://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf


PatientsLikeMe member Tam builds first-ever ‘by patients, for patients’ health measure on the Open Research Exchange

Posted January 21st, 2015 by

Back in March last year, we shared on the blog about a new grant from the Robert Wood Johnson Foundation that would help support two patient-led projects on our Open Research Exchange (ORE) , a platform that brings patients and researchers together to develop the most effective tools for measuring disease. We were overwhelmed by the response from the community, and we’re excited to share that one of those projects is very close to being completed.

Tam is living with multiple sclerosis (MS), and she’s been a PatientsLikeMe member for more than 4 years. After her diagnosis and experiences with her doctors not “getting” what pain means to her, Tam decided to create a new tool for anyone who might be experiencing chronic pain. Her idea is to build a measure that can help doctors better understand and communicate with patients about pain.

Watch her video above to learn about her journey and listen to her explain her inspiration behind the new ORE project.

Share this post on Twitter and help spread the word for MS and chronic pain.