The IACFS/ME posted an article titled "Ministry of Health Survey Reveals Harsh Reality of ME/CFS Patients in Japan" (attached) by Japan ME Association president Mieko Shinohara reporting on a 2014 patient survey commissioned by the government. For the first time the survey attempted to include patients so severely ill that they are largely out of the reach of doctors.
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[/fright]It revealed that chronic fatigue syndrome (ME/CFS) is every bit as bad in Japan as it is in the U.S. the U.K. and other areas. No matter where you find it, ME/CFS is just a stunningly difficult disease.
Two hundred and fifty-one total patients were assessed; 22% were male and 78% female. The average age was 41.8 years old.
The survey used a Performance Status Scale to assess functionality.
High Levels of Severe Disease
Thirty percent of Japanese patients had severe ME/CFS (PS 8 or 9) plus 35% had moderate ME/CFS leaving only 35% with "mild" ME/CFS.
Mild is something of a misnomer since a person with a PS score of 5 is still quite limited (Participation in societal life is difficult. Able to perform light labour, but requires rest at home several days of the week.) Indeed, 87% of the patients with "mild" ME/CFS (the report called it "so-called ME/CFS") indicated that symptoms worsened after doing housework, with 45% "requiring more than 24 hours for recovery, sometimes becoming bedridden."
Seventy percent of all patients required help with minimal tasks such as housework and were dependent upon family members to get that done. As parents age something other than family assistance will be needed. Just seeing a doctor left over 75% requiring complete bed rest.
Employment status, of course, reflected the high degree of debility found. Only 2% of patients were able to continue with their employment as before. Sixty percent of the formerly employed had quit work or were on a leave of absence - surely a devastatingly difficult event in a country that prizes employment and functioning so highly.
Sixty percent of ME/CFS patients in school had dropped out while 40% had modified their school activities.
The Japanese patients' desires matched those in the U.S. and elsewhere. Sitting at at the top of their agenda was more medical research, followed by diseases legitimization, help with medical expenses, access to welfare services and disability. Last was “changing the diseases name.”
No Disability or Medical Assistance
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[/fright]So far ME/CFS is tracking similarly in Japan as in the U.S., the U.K., Canada and other countries. In an important way, though, having ME/CFS is worse in Japan than in the U.S. Getting disability may not be a walk in the park in the U.S., but at least it's a possibility. In Japan, however, it's basically impossible for people with ME/CFS to obtain disability or get financial assistance. They're completely dependent, apparently, on help from their family (if they can get it.)
Because ME/CFS was excluded from a recent Act (Act for Comprehensive Welfare of Persons with Disabilities) which covered some 300 diseases, people with ME/CFS are not eligible for medical expense assistance. The reason - because Japan's diagnostic criteria for ME/CFS does not contain objective disease markers, people with ME/CFS are not eligible for being protected under that law.
The survey helps to demonstrate how vitally important it is for U.S. patients, in particular, to keep fighting for more funds. Because more medical research is done in the U.S., getting Ron Davis and others the funding they need to find biomarkers will help many people living in treacherous and even inhumane circumstances elsewhere.
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Two hundred and fifty-one total patients were assessed; 22% were male and 78% female. The average age was 41.8 years old.
The survey used a Performance Status Scale to assess functionality.
- 0: Able to live a normal life without debilitation and to act without restrictions
- 1: Able to participate in normal societal life and able to work, but feels debilitated from time to time
- 2: Able to participate in normal societal life and able to work, but requires rest from time to time due to debilitation
- 3: Due to debilitation, unable to work or participate in normal societal life several days a month, requires rest at home
- 4: Due to debilitation, unable to work or participate in normal societal life several days a week, requires rest at home
- 5: Participation in societal life is difficult. Able to perform light labour, but requires rest at home several days of the week
- 6: Able to perform light labour on good days, but requires rest at home for more than 50% of the week
- 7: Able to perform personal care and does not require nursing care, but unable to participate in normal societal life; unable to perform light labour
- 8: Able to perform some degree of personal care; requires some nursing care; bedridden for more than 50% of the day
- 9: Unable to perform personal care; requires constant nursing care; bedridden
High Levels of Severe Disease
Thirty percent of Japanese patients had severe ME/CFS (PS 8 or 9) plus 35% had moderate ME/CFS leaving only 35% with "mild" ME/CFS.
Mild is something of a misnomer since a person with a PS score of 5 is still quite limited (Participation in societal life is difficult. Able to perform light labour, but requires rest at home several days of the week.) Indeed, 87% of the patients with "mild" ME/CFS (the report called it "so-called ME/CFS") indicated that symptoms worsened after doing housework, with 45% "requiring more than 24 hours for recovery, sometimes becoming bedridden."
Seventy percent of all patients required help with minimal tasks such as housework and were dependent upon family members to get that done. As parents age something other than family assistance will be needed. Just seeing a doctor left over 75% requiring complete bed rest.
Employment status, of course, reflected the high degree of debility found. Only 2% of patients were able to continue with their employment as before. Sixty percent of the formerly employed had quit work or were on a leave of absence - surely a devastatingly difficult event in a country that prizes employment and functioning so highly.
Sixty percent of ME/CFS patients in school had dropped out while 40% had modified their school activities.
The Japanese patients' desires matched those in the U.S. and elsewhere. Sitting at at the top of their agenda was more medical research, followed by diseases legitimization, help with medical expenses, access to welfare services and disability. Last was “changing the diseases name.”
No Disability or Medical Assistance
[fright]
Because ME/CFS was excluded from a recent Act (Act for Comprehensive Welfare of Persons with Disabilities) which covered some 300 diseases, people with ME/CFS are not eligible for medical expense assistance. The reason - because Japan's diagnostic criteria for ME/CFS does not contain objective disease markers, people with ME/CFS are not eligible for being protected under that law.
The survey helps to demonstrate how vitally important it is for U.S. patients, in particular, to keep fighting for more funds. Because more medical research is done in the U.S., getting Ron Davis and others the funding they need to find biomarkers will help many people living in treacherous and even inhumane circumstances elsewhere.
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