It has been great to see the #MillionsMissing protests. But I fear they could continue indefinitely without other activism tools being used.
I think fundraising for ME/CFS research is important and it doesn't seem to be done much outside the UK and to an extent the US. Governments outside the US don't have huge research budgets. I think people can feel that because there is a public health system with governments in charge of providing healthcare, that they are also responsible for doing whatever medical research is necessary.
However individual countries' research budgets usually aren't huge when one considers the large number of conditions that are out there (maybe a couple of hundred more major ones and many thousands of rarer ones). Progress will be a lot slower if one depends on state funding for research outside the US (the US is a different situation where the research budget is much, much bigger and government funding can lead to substantial programs for illnesses. Also politicians in the US are much more involved with what gets funded rather than the situation a lot of countries where politicians don't have too much influence on the amount given to individual illnesses).
Generally you also need a pool of researchers to be making applications to get funding. Private money ensures that can be such a pool of interested researchers who can make such funding applications. Also researchers often need pilot data showing their hypotheses are worth looking into: private money can help ensure this happens.
There are millions (17 million?) affected by this illness, which means that there are tens of millions of people with family members with the illness. Not all of these are diagnosed and some will be in underdeveloped countries but there is potential for a lot more to be raised privately. The UK is probably a good example of the different sorts of fundraising for research that can happen. I don't see much fundraising for research in a lot of countries.
Petitions can be useful to show a certain number of people hold certain points of view. But, especially in the Internet age, there can be an awful lot of petitions so many have little influence.
Government funding can also sometimes go to studies that are problematic e.g. biopsychosocial ones. Private money raised by the ME/CFS community usually goes to safer research that is unlikely to cause problems for patients. I can imagine CBT/GET proponents hate seeing private money being raised which they know could lead to things which challenge their flawed models of illness.
So I would like to make a plea for more fundraising for biomedical research.
I think fundraising for ME/CFS research is important and it doesn't seem to be done much outside the UK and to an extent the US. Governments outside the US don't have huge research budgets. I think people can feel that because there is a public health system with governments in charge of providing healthcare, that they are also responsible for doing whatever medical research is necessary.
However individual countries' research budgets usually aren't huge when one considers the large number of conditions that are out there (maybe a couple of hundred more major ones and many thousands of rarer ones). Progress will be a lot slower if one depends on state funding for research outside the US (the US is a different situation where the research budget is much, much bigger and government funding can lead to substantial programs for illnesses. Also politicians in the US are much more involved with what gets funded rather than the situation a lot of countries where politicians don't have too much influence on the amount given to individual illnesses).
Generally you also need a pool of researchers to be making applications to get funding. Private money ensures that can be such a pool of interested researchers who can make such funding applications. Also researchers often need pilot data showing their hypotheses are worth looking into: private money can help ensure this happens.
There are millions (17 million?) affected by this illness, which means that there are tens of millions of people with family members with the illness. Not all of these are diagnosed and some will be in underdeveloped countries but there is potential for a lot more to be raised privately. The UK is probably a good example of the different sorts of fundraising for research that can happen. I don't see much fundraising for research in a lot of countries.
Petitions can be useful to show a certain number of people hold certain points of view. But, especially in the Internet age, there can be an awful lot of petitions so many have little influence.
Government funding can also sometimes go to studies that are problematic e.g. biopsychosocial ones. Private money raised by the ME/CFS community usually goes to safer research that is unlikely to cause problems for patients. I can imagine CBT/GET proponents hate seeing private money being raised which they know could lead to things which challenge their flawed models of illness.
So I would like to make a plea for more fundraising for biomedical research.
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