Solve ME announced: “In our new digital format, we’ve created a video to replace our printed congressional educational materials. Share this video with your Representatives to inform them of important ME/CFS needs.”
Share this video with your local state representatives this week and help make a difference!
Until three or four years ago conditions like ME/CFS or Fibromyalgia were not recognized by the rules governing disability in Japan. It is a little known fact that the date of the first doctors visit can be the onset date, even if there was not a clear diagnosis for the disability. Even though the disability rules have changed in Japan, people with an ME/CFS diagnosis are still at a disadvantage. Like in the US, being aware of the nuances of the rules is the only way to even the odds.
Due to COVID-19 the Millions Missing 2020 Event will be completely virtual. The update read, “Our community has always had a strong, powerful, and supportive virtual presence. This event will be no different.”
ME/CFS patients in the UK share their stories. A survey in the UK carried out by the ME Association in 2016 found that 46% of patients thought that the care provided by their GP for CFS was “poor” or “dreadful.” Some 18% had no contact with their GP at all as they found they made their illness worse by not taking them seriously.
A study by researchers at DePaul University, published in 2019 in Health Care for Women International, surveyed 541 people with ME/CFS and found that 89% had experienced a dismissive attitude from a healthcare provider. People with the condition often encounter insensitivity, inappropriate beliefs about causes, inappropriate treatments, disbelief and a general lack of knowledge, the study says. Because ME/CFS symptoms overlap with so many other disorders, like depression, those who have the condition are often misdiagnosed.
The catastrophic collapse of Tony Wallace’s life began slowly and silently.
An episode of flu. A persistent illness. A feeling of fatigue. A sense something was not so much wrong, as not quite right.
The NIH study is focusing on people who came down with the disease after an infection, of any sort, within five years. That initial infection is long gone but maybe, the body’s normal reactions to illness went into a destructive tailspin. Nearly 500 patients have called seeking to enroll in NIH’s study that is putting a few dozen under the microscope, with a barrage of sophisticated tests few hospitals can offer under one roof. “The ignorance about the condition just vastly dwarfs what we know about it,” said Dr. Walter Koroshetz, director of NIH’s National Institute for Neurological Disorders and Stroke, which is leading the research.
For the past several years, Deborah Smith has taken a less active role in her family members’ lives due to a draining, mysterious biological disease. Smith suffers from myalgic encephalomyelitis chronic fatigue syndrome, an illness without a known cause or cure.
In this video from early April Dr. Komaroff presents an ME/CFS summary to the NiH.
On the link below Dr. Anthony Komaroff shares a brief summary of the state of current ME/CFS research.
Singer-songwriter Alice Ella describes the joy of escaping in her new single Somewhere Else.