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Research in Japan

Hide

Guest
Messages
44
Location
Japan
You know Japan has been very active in CFS and the research fund of it was huge.
But it has been drastically reduced from this year.
The sum is only 6 million yen ($76,000).
The researchers can't even research the etiology but do only epidemiology.

What do you think about this bad situation?
 

RustyJ

Contaminated Cell Line 'RustyJ'
Messages
1,200
Location
Mackay, Aust
Hi Hide. Unfortunately funding for cfs in many countries has been limited to epidemiology, for some time. Japan seems to be following trend. I wonder how much Japanese funding was linked to CDC grants.

You seem to have some contact with researchers. What is your take on this development in Japan.
 

allyb

Senior Member
Messages
127
Location
yorkshire/lancashire border, England
Welcome to the forum Hide,

Thank you for posting this here and raising awareness.
I think any cutting of funding for research into ME/CFS is alarming, diabolical, very short sighted and tragically all too common.
Lack of transparency leads to speculation overdrive and I am sure it will have some kind of impact all around the world. Like RustyJ commented:
I wonder how much Japanese funding was linked to CDC grants.
And in turn the extent of the impact globally???:eek:
Is there anything your ME patient community in Japan is or can do?
Is there anything we can do as an international ME/CFS community.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
You know Japan has been very active in CFS and the research fund of it was huge.
But it has been drastically reduced from this year.
The sum is only 6 million yen ($76,000).
The researchers can't even research the etiology but do only epidemiology.

What do you think about this bad situation?

Hello Hide, this is indeed disappointing. I am guessing this is in a climate of research funding being reduced across all diseases?

I would like to ask, does the Japanese government report statistics on categorical funding like they do in Australia or the USA?
For example:
http://report.nih.gov/categorical_spending.aspx

Or have you (or a friend) been monitoring the CFS funding by looking at the list of grants yourself?

Have there been any studies investigating burden of disease CFS in Japan, such as economic costs, Disability-Adjusted-Life-Years (DALYs), or other measures?
 
Messages
759
Location
Israel
Do you think that this reduction in research is linked to the Fukishima disaster?

The last newsletter issue of NCF says they think that radiation might be one of the causes of M.E/CFS because there is a lower number of "CD56 Bright cells" in people with M.E/CFS. CD56 also is a biomarker for exposure to ionising radiation. They also published a study saying that there was a lot of CFS in people who cleared up after the Chenobyl disaster.

On a more innocent note, It could just be that the Fukishma disaster hurt the Japanese economy so they have less money to spend on research generally.

I know very little about Japan so it is difficult to say.

It is a shame because the Japanese did good research.
The last piece of research I read about was this:
http://www.ncbi.nlm.nih.gov/pubmed/22583968
Summary: Using technology they were able to distinguish between the thumbs of CFS patients and healthy people with 80% accuracy and that was using just the weak Fukuda criteria. If they used better criteria they could have a great test there.

I read a rumour while in all the world the number of women with CFS is higher than the number of men, in Japan it is the same.
This fascinated me. I don't know if it is true because I can not find research of it on the internet. The only related thing I find is this Japanese study which has a lot more men taking part than women. \http://www.ncbi.nlm.nih.gov/pubmed/21302125

I really hope something can be done to help increase M.E research in Japan.
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
I think heapsreal was in a study in Australia that included measuring the CD56bright cells or it could have been CD20bright, but we can check with him and see.
 

RustyJ

Contaminated Cell Line 'RustyJ'
Messages
1,200
Location
Mackay, Aust
http://www.translational-medicine.com/content/pdf/1479-5876-9-81.pdf
This was the study i was involved in, nk cd56 bright cells etc

Sorry to side track. Just noticed in this paper they use the term "neuropsychological" to describe me/cfs and do not talk about cognitive problems. Since when did neurophsyc issues predominate in a description of this illness. Seems like there is a coordinated attempt to redefine the illness through semantics. So now our condition is defined by fatigue and behavioral issues. This is a disturbing new trend recently legitimized by Lipkin.

Generally, patients with CFS/ME experience severe fatigue, neuropsychological impairments, and other associated flu-like symptoms before a firm diagnosis of CFS/
ME is made [4].
 

RustyJ

Contaminated Cell Line 'RustyJ'
Messages
1,200
Location
Mackay, Aust
One of the unique things that Japanese researchers have been doing is trying to develop murine models of fatigue. I'm not sure if this comes under CFS research though.

For example:
http://www.ncbi.nlm.nih.gov/pubmed/17192569

This is a significant study which actually weighs in against the behavioralists. It should be acknowledged as such. Thanks for the reminder, Snow Leopard. I would have hoped to see significant developments regarding immune system induced fatigue from this. A pity if funding cutbacks have hampered this research.
 

Hide

Guest
Messages
44
Location
Japan
Welcome to the forum Hide,
Lack of transparency leads to speculation overdrive and I am sure it will have some kind of impact all around the world. Like RustyJ commented:

That's right. The decline of Japanese research affects all patients all over the world.
 

Hide

Guest
Messages
44
Location
Japan
Hello Hide, this is indeed disappointing. I am guessing this is in a climate of research funding being reduced across all diseases?
No, the amount of research fund of all diseases has not changed much.

I would like to ask, does the Japanese government report statistics on categorical funding like they do in Australia or the USA?
For example:
http://report.nih.gov/categorical_spending.aspx
Sorry I don't know. I think the Japanese government doesn't do that.

Or have you (or a friend) been monitoring the CFS funding by looking at the list of grants yourself?

Have there been any studies investigating burden of disease CFS in Japan, such as economic costs, Disability-Adjusted-Life-Years (DALYs), or other measures?

I hear that the economic costs1.2 billion yen($15 million). But I don't know about measures.
 

Hide

Guest
Messages
44
Location
Japan
Do you think that this reduction in research is linked to the Fukishima disaster?
I don't think so. The amount of research fund of all diseases hasn't changed much.
Japanese government granted huge money in fatigue research.
The research of CFS was conducted in the fatigue research. So much money was assigned to CFS.

But a Japanese patient group criticized the government claiming almost no research of CFS was carried out and the their works were behind Europe and America, though Japan have made great results of CFS research with huge research fund.
The group asked the government to set up a CFS research team. So Japan accepted it but assigned a small money to it.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
I hear that the economic costs1.2 billion yen($15 million). But I don't know about measures.

This is low, by a factor of 1000.

Prevalence of CFS in Japan has been reported in a few studies to be between 0.5-1.5%.

Ballpark estimate of total economic cost: (including productivity losses)
0.5 %/100% * 127800000 people * 2000000 yen per patient per year = 1280 billion yen.

That is a large amount of money!
 
Messages
73
Location
Belgium
Researchers need to start striking, all over the world. Not just for ME, but for any chonic underfinanced chronic illnes.
They are the brains, the reason to our wellfare, the people that have to cure cancer, turn stemcells into organs etc....
They are so powerfull in a certain way and they have the right to exploit that fact for the "general wellbeing of humanity".

In Belgium we spend 30 billion euros on healthcare (i think government budget is about 100 billion). This is generally accepted and not critised, so why does a rationale investment of a few millions in our health need to be so difficult?
The cost/burden for society on this disease is massive and totally disproportional with the money invested in it (don't even wanna think about the ratio). A resolution for this disease would benefit both economy and the patients so much!!

So I think if researchers strike and bring these facts to the media, most people would understand and push politics for more funding. Politicians often know very little of medicine and research, so they need to be pointed to the facts.

In Belgium we're quite good at striking, the national train-staff strikes about every 3 months, for most trivial reasons. It's so fustrating and economically devastating but they allways get away with it. If scientists explain it well, most would definatly compedhend.
 

Hide

Guest
Messages
44
Location
Japan
Hi,

I saw a research leader in Japan about a week ago.
I asked the amount of research fund. He said it is 15 million yen(15 thousand USD) per year.
It is too small, isn't it?

I'd like to know how much each government grant.
Could you tell me about that?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Does the government medical research funding body in Japan publish a searchable database of grants awarded?

Example of what is published in Australia:
http://www.nhmrc.gov.au/grants/outcomes-funding-rounds


This is from memory but when Suzanne Vernon became the scientific director of the CFIDS Association one of her first initiatives was to get Japanese research translated into English. She could probably answer this question.

Sushi