Chronic Fatigue Syndrome (ME/CFS) Even Worse in Japan Than U.S.

Where do you fit on the Japanese Performance Status Scale?

  • 2: Able to participate in normal societal life and able to work, but requires rest from time to time

    Votes: 0 0.0%
  • 3. Unable to work or participate in normal societal life several days a month, requires rest at home

    Votes: 1 3.7%
  • 4: Unable to work or participate in normal societal life several days a week, requires rest at home

    Votes: 1 3.7%
  • 5: Participation in societal life is difficult. Able to perform light labour, requires rest at home

    Votes: 4 14.8%
  • 6: Able to perform light labour on good days, but requires rest at home > 50% of the wee

    Votes: 4 14.8%
  • 7: Able to perform personal care; unable to participate in normal activities

    Votes: 12 44.4%
  • 8: Able to perform some degree of personal care; requires some nursing care; bedridden > 50% day

    Votes: 4 14.8%
  • 9: Unable to perform personal care; requires constant nursing care; bedridden

    Votes: 1 3.7%

  • Total voters
    27

Cort

Founder of Health Rising and Phoenix Rising
Staff member
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.

[fright]
Help.jpg
[/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.
  • 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
People with PS value 0-5 were classified as having mild level disease), PS value 6-7 - moderate level disease), and PS value 8-9 (severe level disease).

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]
disability.jpg
[/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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The data extracted from over 35 ME patients in Australia, compared to a similar number of healthy controls, using 23andme to identify relevant mutations, have ALL come from people of Anglo Celtic origin.

We have identified 344 mutations which reach a z score of 6.5 or greater.

Ethnicity will be a confounding factor of sorts in genomic research, in that the causes of ME in other populations are likely to differ in interesting ways (as already determined by Neil McGregor's computations, which suggest this to be a more than likely 'issue').

Thus, Japanese and other Asian groups who undergo similar 23andme evaluations are highly likely to provide important insights about the genetics of ME as a whole. Most of the patients studied so far are from my own clinic, and I DO NOT have any Asians amongst them. This is an advantage in many ways, in that there is minimal admixture with other ethnically different populations, who otherwise could have confounded our results.

The time is ripe now to compare different ethnic populations and I have no doubt that such comparisons will be very fruitful. Similarly, people of African descent will also add more to the picture, thereby creating a comprehensive and perhaps unifying hypothesis of what really matters, both clinically and scientifically.

Amongst the 344 mutations identified are numerous anomalies that each contributes in important ways to our understanding of the complex pathogenesis of ME, and it very clear now that there is a multiplicity of key problems that interact in ways that allow or even force our bodies (those with ME that is) to behave in certain ways in a persistent manner that currently resists monotherapies. Polypharmacy may be an essential aspect of successful patient management.

It is unlikely that complex mixtures of mutations will be unique to ME, and we may see that what we have found may contribute to our understanding of many other common diseases.

In the same way that Gallo's studies on retroviruses nearly became irrelevant until HIV proved his skeptics wrong (these consequences of a nearly lost science on today's understandings of disease mechanisms have had unforeseeably enormous benefits), we may see the same phenomenon happening, such that ME research will lead the way in resolving other hitherto poorly understood medical diseases.

Finally, we would welcome Japanese collaboration to further our quickly evolving understanding of ME.
 
Sharing some info I found online



Country/Region Extrapolated Prevalence Population Estimated Used
Chronic Fatigue Syndrome in North America (Extrapolated Statistics)
USA 539,807 293,655,4051
Canada 59,757 WARNING! (Details) 32,507,8742
Mexico 192,940 WARNING! (Details) 104,959,5942
Chronic Fatigue Syndrome in Central America (Extrapolated Statistics)
Belize 501 WARNING! (Details) 272,9452
Guatemala 26,251 WARNING! (Details) 14,280,5962
Nicaragua 9,852 WARNING! (Details) 5,359,7592
Chronic Fatigue Syndrome in Caribbean (Extrapolated Statistics)
Puerto Rico 7,165 WARNING! (Details) 3,897,9602
Chronic Fatigue Syndrome in South America (Extrapolated Statistics)
Brazil 338,421 WARNING! (Details) 184,101,1092
Chile 29,088 WARNING! (Details) 15,823,9572
Colombia 77,777 WARNING! (Details) 42,310,7752
Paraguay 11,381 WARNING! (Details) 6,191,3682
Peru 50,632 WARNING! (Details) 27,544,3052
Venezuela 45,987 WARNING! (Details) 25,017,3872
Chronic Fatigue Syndrome in Northern Europe (Extrapolated Statistics)
Denmark 9,951 WARNING! (Details) 5,413,3922
Finland 9,585 WARNING! (Details) 5,214,5122
Iceland 540 WARNING! (Details) 293,9662
Sweden 16,519 WARNING! (Details) 8,986,4002
Chronic Fatigue Syndrome in Western Europe (Extrapolated Statistics)
Britain (United Kingdom) 110,791 WARNING! (Details) 60,270,708 for UK2
Belgium 19,022 WARNING! (Details) 10,348,2762
France 111,073 WARNING! (Details) 60,424,2132
Ireland 7,296 WARNING! (Details) 3,969,5582
Luxembourg 850 WARNING! (Details) 462,6902
Monaco 59 WARNING! (Details) 32,2702
Netherlands (Holland) 29,996 WARNING! (Details) 16,318,1992
United Kingdom 110,791 WARNING! (Details) 60,270,7082
Wales 5,363 WARNING! (Details) 2,918,0002
Chronic Fatigue Syndrome in Central Europe (Extrapolated Statistics)
Austria 15,027 WARNING! (Details) 8,174,7622
Czech Republic 2,290 WARNING! (Details) 1,0246,1782
Germany 151,515 WARNING! (Details) 82,424,6092
Hungary 18,441 WARNING! (Details) 10,032,3752
Liechtenstein 61 WARNING! (Details) 33,4362
Poland 71,004 WARNING! (Details) 38,626,3492
Slovakia 9,969 WARNING! (Details) 5,423,5672
Slovenia 3,697 WARNING! (Details) 2,011,473 2
Switzerland 13,696 WARNING! (Details) 7,450,8672
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
The data extracted from over 35 ME patients in Australia, compared to a similar number of healthy controls, using 23andme to identify relevant mutations, have ALL come from people of Anglo Celtic origin.

We have identified 344 mutations which reach a z score of 6.5 or greater.

Ethnicity will be a confounding factor of sorts in genomic research, in that the causes of ME in other populations are likely to differ in interesting ways (as already determined by Neil McGregor's computations, which suggest this to be a more than likely 'issue').

Thus, Japanese and other Asian groups who undergo similar 23andme evaluations are highly likely to provide important insights about the genetics of ME as a whole. Most of the patients studied so far are from my own clinic, and I DO NOT have any Asians amongst them. This is an advantage in many ways, in that there is minimal admixture with other ethnically different populations, who otherwise could have confounded our results.

The time is ripe now to compare different ethnic populations and I have no doubt that such comparisons will be very fruitful. Similarly, people of African descent will also add more to the picture, thereby creating a comprehensive and perhaps unifying hypothesis of what really matters, both clinically and scientifically.

Amongst the 344 mutations identified are numerous anomalies that each contributes in important ways to our understanding of the complex pathogenesis of ME, and it very clear now that there is a multiplicity of key problems that interact in ways that allow or even force our bodies (those with ME that is) to behave in certain ways in a persistent manner that currently resists monotherapies. Polypharmacy may be an essential aspect of successful patient management.

It is unlikely that complex mixtures of mutations will be unique to ME, and we may see that what we have found may contribute to our understanding of many other common diseases.

In the same way that Gallo's studies on retroviruses nearly became irrelevant until HIV proved his skeptics wrong (these consequences of a nearly lost science on today's understandings of disease mechanisms have had unforeseeably enormous benefits), we may see the same phenomenon happening, such that ME research will lead the way in resolving other hitherto poorly understood medical diseases.

Finally, we would welcome Japanese collaboration to further our quickly evolving understanding of ME.
Great stuff John!

Wouldn't it be interesting if different mutations in different ethnic groups pointed to similar underlying problems?

Have you talked to Kelly Gaunt of Dr. Klimas's Neuroimmune Institute about this? She's getting together an 23andME study.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Sharing some info I found online



Country/Region Extrapolated Prevalence Population Estimated Used
Chronic Fatigue Syndrome in North America (Extrapolated Statistics)
USA 539,807 293,655,4051
Canada 59,757 WARNING! (Details) 32,507,8742
Mexico 192,940 WARNING! (Details) 104,959,5942
Chronic Fatigue Syndrome in Central America (Extrapolated Statistics)
Belize 501 WARNING! (Details) 272,9452
Guatemala 26,251 WARNING! (Details) 14,280,5962
Nicaragua 9,852 WARNING! (Details) 5,359,7592
Chronic Fatigue Syndrome in Caribbean (Extrapolated Statistics)
Puerto Rico 7,165 WARNING! (Details) 3,897,9602
Chronic Fatigue Syndrome in South America (Extrapolated Statistics)
Brazil 338,421 WARNING! (Details) 184,101,1092
Chile 29,088 WARNING! (Details) 15,823,9572
Colombia 77,777 WARNING! (Details) 42,310,7752
Paraguay 11,381 WARNING! (Details) 6,191,3682
Peru 50,632 WARNING! (Details) 27,544,3052
Venezuela 45,987 WARNING! (Details) 25,017,3872
Chronic Fatigue Syndrome in Northern Europe (Extrapolated Statistics)
Denmark 9,951 WARNING! (Details) 5,413,3922
Finland 9,585 WARNING! (Details) 5,214,5122
Iceland 540 WARNING! (Details) 293,9662
Sweden 16,519 WARNING! (Details) 8,986,4002
Chronic Fatigue Syndrome in Western Europe (Extrapolated Statistics)
Britain (United Kingdom) 110,791 WARNING! (Details) 60,270,708 for UK2
Belgium 19,022 WARNING! (Details) 10,348,2762
France 111,073 WARNING! (Details) 60,424,2132
Ireland 7,296 WARNING! (Details) 3,969,5582
Luxembourg 850 WARNING! (Details) 462,6902
Monaco 59 WARNING! (Details) 32,2702
Netherlands (Holland) 29,996 WARNING! (Details) 16,318,1992
United Kingdom 110,791 WARNING! (Details) 60,270,7082
Wales 5,363 WARNING! (Details) 2,918,0002
Chronic Fatigue Syndrome in Central Europe (Extrapolated Statistics)
Austria 15,027 WARNING! (Details) 8,174,7622
Czech Republic 2,290 WARNING! (Details) 1,0246,1782
Germany 151,515 WARNING! (Details) 82,424,6092
Hungary 18,441 WARNING! (Details) 10,032,3752
Liechtenstein 61 WARNING! (Details) 33,4362
Poland 71,004 WARNING! (Details) 38,626,3492
Slovakia 9,969 WARNING! (Details) 5,423,5672
Slovenia 3,697 WARNING! (Details) 2,011,473 2
Switzerland 13,696 WARNING! (Details) 7,450,8672
Really interesting - thanks!
 

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