"Up to 2.5 million American adults live with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), an all-consuming fatigue that ruins their daily quality of life. At times, they're too tired to get out of bed, take a shower, or cook a meal. They may have body pain, fuzzy thinking, and dizziness that may make it impossible to work or take part in everyday activities. Worse, people living with ME/CFS may find that their doctor, loved ones, or employers don't take their symptoms seriously or believe they result from an illness. A new study by the CDC and Medscape shows that lack of awareness about ME/CFS is widespread, and this delays diagnosis and treatment for years. The study's findings were based on an online survey completed by 3,550 adults 18 or over who visited WebMD.com from Jan. 22-Jun. 8, 2021. “One of the most striking findings from the survey was that so many people have trouble being understood by their clinician when they talk about their symptoms,” says Elizabeth Unger, MD, PhD, chief of the CDC's Chronic Viral Diseases Branch." https://www.webmd.com/chronic-fatigue-syndrome/features/chronic-fatigue-study
"trouble being understood". I would add, physicians and others have trouble relating to the symptom descriptions. This is even though most people have had a flu at some point. I don't know who said it first, but a good description of ME goes something like: having a flu, at the same time as being hungover, and running a marathon. In the early going of my experience with ME, I had, and still have symptoms worthy of more investigation than just a nod, a shrug, or a mean comment from physicians. For example chronic dizziness. Which might warrant a MRI, but due to the popularization of ME as a mere nothing, was ignored. Dizziness can signal a serious condition such as stroke. But, may be discounted as some physicians may feel safe in the fake knowledge that dizziness within the ME (cfs) context doesn't need to be taken seriously. In fact a lot of symptoms within the ME context are not taken seriously.
i am really freaking uncomfortable with cdc messaging and that includes the above. can't go into dtails for health reasons. just because it isn't the era where they would literally [this is fully documented and stored using timestamp-service type evidence quality] go in and change every instance on every page on the entire "cfs" part of the cdc website, from "disease" to "illness", and just becasue they might or might not still use a font that looks very much like comic sans except worse as a top header for "cfs", does NOT mean that cdc behavior is acceptable. [edit: or is it still that era?] [edit: seems like they are still trying to do everything they possibly can against us but realize they would look bad so they take token or forced actions like wringing hands while wording everything carefully against us to degree they think they can get away with.] [if i am the only one who thinks that then so be it. i have said that one person is not satisfied. done.]
@Samuel I very, strongly disagree with the misleading, dismissive misnomer "chronic fatigue syndrome". It's caused immeasurable harm and suffering. Early on, no doubt due to the stupid and offensive name "cfs", a doctor told me everyone feels like I do. That was, and is completely ridiculous!
When your stigmatizing "cfs" diagnosis goes before you, in a letter from your GP's office to specialists' offices, you're often hooped before you even see specialists. That is if you can get a referral for further consults.
Another problem with communication between pwME and physicians is some pwME have slowed thinking. Cognitive problems also cause memory issues, and word finding difficulties. Physicians never seem to notice me mixing my words, slurring my words, unable to find the right word, unable to reply at all. And yet some non-medical personnel who know me better did, and do. At least those with open minds about this disease. I have sat unable to discuss or correct assumptions from physicians many times. It's also very difficult to get concepts across within a 5 or 10 minute consult. To put it plainly, ME is very big; the usual consult time with doctors is very small.
ME is not "all-consuming fatigue" it is a problem with energy production and an unusual response to exertion. That may give someone all consuming fatigue but only in the sense that people with MS get fatigue, one symptom among many. Taking away fatigue would be good but we would still be left desperately ill.
