3 posts tagged “ME/CFS”

Raising awareness for immunological and neurological health in May

Posted May 12th, 2016 by

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 that worsen after exerting any type (emotional, physical) effort

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 65,000 people are sharing their experiences, along with more than 12,000 living with ME/CFS.


Share this post on Twitter and help spread the word.

 

1https://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf


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