The Centers for Disease Control and Prevention (CDC) today released an updated website for healthcare providers about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Public domain image/Darnyi Zsóka
The new site is designed specifically with clinicians in mind and offers information about how physicians can better assess and help their patients manage the illness. CDC’s new ME/CFS web content includes information about how ME/CFS presents and its clinical course, the diagnostic criteria released in 2015 by the Institute of Medicine (now National Academy of Medicine), and how healthcare providers can approach medical care for people who have been diagnosed with ME/CFS. The new web content is part of an effort to increase awareness among healthcare providers about this condition.
An estimated 836,000 to 2.5 million Americans suffer from ME/CFS, a serious, long-term illness that can severely impair their abilities to live normal lives. Many people struggle with symptoms for years before receiving a diagnosis and there is no definitive diagnostic test. One of the reasons that people with ME/CFS are not diagnosed is a lack of awareness and understanding about ME/CFS among healthcare providers. Most medical schools in the United States do not have ME/CFS as part of their physician training. Less than one-third of medical school curricula and less than half of medical textbooks in the U.S. include information about ME/CFS.
The new website notes that anyone can get ME/CFS. While most common in people between 40 and 60 years old, the illness affects children, adolescents, and adults of all ages. More education for doctors, nurses, and other healthcare providers is urgently needed, so they are prepared to provide timely diagnosis and appropriate care for patients with ME/CFS.
Besides information for healthcare providers, the updated ME/CFS website includes resources for patients, families, and schools. The site also features patients’ personal accounts of living with ME/CFS in the recently added section, Voice of the Patient.
With the CDC putting a disclaimer on each & every thing looks like they are in disagreement with what is being written on ME/CFS.
I was so excited to see this because I thought finally I could share this with my doctor and her team and she would understand why there are certain things I’m unable to do. When I contacted my doctor and her team about this information I was informed that because insurance (Medicade in Washington State) doesn’t cover treatment of ME/CFS and there isn’t even a code for the disease that they can’t do anything and therefore won’t be looking at this information. That they only look at papers that cover illnesses a patient’s insurance covers.
I don’t understand why I’ve been so sick for 12 years with nothing to back it up and have had to keep things from my doctor because again there is nothing to back up my claims and I didn’t want to be sent to treatment that makes me more ill like they did in the past. It’s because of being sent to physical therapy and all kinds of things like that that my illness has progressed to a mostly bedridden status. I know there’s no treatment for it yet but wouldn’t it benefit a doctor to understand what’s happening? I just don’t know what to do with this information. I just had high hopes that my doctor would know what could hurt me whether Medicaid covers it or not. I’m just devastated and it’s been a horrible 2 weeks since I got the reply back from my doctor. And they also will not watch “Unrest” which to me shows what happens to me as well when I’m not out and about where they can see me because going out and about to their office makes me so sick when I come home. Does anybody have any suggestions on what I should do now besides the way here feeling more despair that I felt before?
To Mashburn, Keep doing what you can even if it is just enjoying the day looking out a window.
Know that people do care about you even if they do not understand.
I have had this disease for 10 years and was only diagnosed in 2015. and yes because I tried to stay on the job as a professional art educator living on pain pills and muscle relaxers also other drugs through the years I also escalated my ME to to point I have not really gotten better.
I have been released ( dumped) by 2 primary care providers, to everyone out there this needs to stop. How do I/we educate health care providers who do not want acknowledge us.
Amy former art educator state of WI age 58