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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Prevention Magazine Article on ME/CFS

Never Give Up

Collecting improvements, until there's a cure.
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12 Things No One Tells You About Chronic Fatigue Syndrome

It's good. It's mostly about symptoms, the lack of knowledge and approved treatments, and ends up with Dr. Klimas advising people to learn about their disease and advocate for themselves with their own doctors. Carol Head, Zaher Nahle, and Nancy Klimas quotes make up most of the article. I specially like This:

""Apart from profound exhaustion, body painand cognitive issues are common symptoms," says Nancy Klimas, MD, a professor of medicine and immunology at Nova Southeastern University. These cognitive issues aren't simple confusion or memory lapses, Head says. "We're talking people in their 20s and 30s not being able to put a sentence together, or struggling to read a restaurant check," she adds. Problems sleeping, a racing heart, and issues standing up are all related symptoms.", and this:

"Most doctors don't know much about it.
"The disease isn't really discussed in the medical curricula, and so it's not well understood by many doctors," Klimas says. "Obviously that can make it tremendously difficult for patients trying to find answers and treatment." Nahle says the Institute of Medicine's recent report recognizing ME/CFS as a disease will help to change that, but the vast majority of sufferers will still struggle to find doctors who know how to spot and treat the disease."
 

SOC

Senior Member
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7,849
Good stuff. :thumbsup: This is the kind of thing we've been looking for, including quotes from people knowledgeable about the medical reality of the disease.

It starts:
Imagine feeling too exhausted to get out of bed, let alone go to work or spend time with your family. Now combine that kind of physical exhaustion with severe stomach pain, aching joints, and brain fog that makes it impossible to read a book or sustain a thought. Finally, imagine telling a doctor how you feel, and having him roll his eyes.

This is reality for many of those who suffer from the disease most know as "chronic fatigue syndrome." There's often little help or support available to them from the medical community or from friends and family.

Please click through and give this a lot of traffic.