From time to time, ME/CFS has been discussed in the mainstream media. Usually there’s a flurry of reporting, an interview or two, maybe even a national nightly news segment and then a lot of silence. We could be in for a repeat of the past but maybe not this time.
The Institute of Medicine – at the request of an impressive number of Federal agencies including the Department of Health and Human Services, NIH, the Agency for Healthcare Research and Quality, the CDC, the FDA and the Social Security Administration - has convened an expert committee to examine the evidence base for ME/CFS. Their conclusion? ME/CFS is a real physical disease. Should we applaud or just do an en masse exaggerated eye roll?
To their credit, they have determined that physicians should be taking ME/CFS seriously and that a new designated diagnosis is required to separate ME/CFS from its former reputation as an imaginary or psychological illness. The new name is Systemic Exertion Intolerance Disease (SEID). OK it doesn’t exactly roll off your tongue but it is a disease not a syndrome. Score one for us.
Here is a link to the official report http://www.iom.edu/Reports/2015/ME-CFS.aspx
Here is a link to a report on NBC’s website http://www.today.com/health/chronic-fatigue-syndrome-real-dont-call-it-panel-says-2D80484902
So what does this mean for those who are suffering with SEID? Maybe this could be the beginning of serious dollars being dedicated for research. Maybe some treatment protocols will be developed that have some basis in actual case histories. And just maybe patients who are suffering with SEID will be greeted by physicians with understanding and a commitment to get them well again without referring them to a psychiatrist. Please COMMENT or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!
Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha
The Institute of Medicine – at the request of an impressive number of Federal agencies including the Department of Health and Human Services, NIH, the Agency for Healthcare Research and Quality, the CDC, the FDA and the Social Security Administration - has convened an expert committee to examine the evidence base for ME/CFS. Their conclusion? ME/CFS is a real physical disease. Should we applaud or just do an en masse exaggerated eye roll?
To their credit, they have determined that physicians should be taking ME/CFS seriously and that a new designated diagnosis is required to separate ME/CFS from its former reputation as an imaginary or psychological illness. The new name is Systemic Exertion Intolerance Disease (SEID). OK it doesn’t exactly roll off your tongue but it is a disease not a syndrome. Score one for us.
Here is a link to the official report http://www.iom.edu/Reports/2015/ME-CFS.aspx
Here is a link to a report on NBC’s website http://www.today.com/health/chronic-fatigue-syndrome-real-dont-call-it-panel-says-2D80484902
So what does this mean for those who are suffering with SEID? Maybe this could be the beginning of serious dollars being dedicated for research. Maybe some treatment protocols will be developed that have some basis in actual case histories. And just maybe patients who are suffering with SEID will be greeted by physicians with understanding and a commitment to get them well again without referring them to a psychiatrist. Please COMMENT or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!
Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha
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