Advocacy

Little Known Rules Make Disability Claims in Japan a Challenge.

03-31 Advocacy

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.

Source: 【FP解説】年金の「知らないと損！」 病名の確定診断日が初診日？（ファイナンシャルフィールド） – Yahoo!ニュース

People with ME/CFS Share What it’s Really Like

02-20 Advocacy, People

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.

Source: People with Chronic Fatigue Syndrome/ME share what it’s really like – Insider

ME/CFS is Debilitating but Often Dismissed

02-01 Advocacy, Health, People

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.

Source: Chronic Fatigue Syndrome Is Debilitating but Often Dismissed

Patients Push Limits for Clues to ME/CFS at NIH

01-08 Advocacy, Health, People, Science

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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.

Source: Patients push limits for clues to chronic fatigue syndrome – STAT