Please don't sign this petition. It is not helping the ME/CFS cause in Sweden. Quite the opposite. This petition is written with no knowledge of this area of politics work in Sweden and will just make the ME/CFS community look unprofessional and unknowledgable. Besides, it spreads faulty information that there are no ME/CFS researchers in Sweden, which there are. Some of them, like Jonas Blomberg, are really successful.
If people who want to make a change could please contact RME, the patient organisation, before doing things like this that would be great.
I agree, this is sadly counterproductive. It lacks understanding of how the research funding system works and will signal to decision makers that the ME community doesn't care to gather knowledge before making demands - making the patient group easy to dismiss. This will mar future efforts to make progress politically in Sweden.
That the Swedish Research Council, which works differently from NIH, would be assigned by the Swedish government to award money to a US research project, picked out by the petitioner, is wildly unfeasible. (The OMF project of course deserves all the support we can possibly give them, but this is not a feasible way to raise funds for it. Rather, it gives OMF and the project a bit of a bad reputation, since the action is so uninformed.)
There are ways to work for increased biomedical funding for ME/CFS in Sweden, but we need to make requests that take into consideration how the system is designed. The Swedish patient association RME (
www.rme.nu) is engaged in a dialogue with politicians with the aim of convincing them to earmark funds for biomedical ME research in Sweden, which is something that could be done. A better phrased and more accurate petition might have helped. Personal contacts with politicians with that request is a way to help too, but always with an eye to the reality of the funding system and the respective roles of the politicians and the research council.
@JenB @searcher
I think generally it's a great idea to vet actions with the ME community, for example via forums such as PR or via Facebook groups (in this case Swedish) - there is such huge knowledge out there! My experience is that after opening stuff up to discussion much is learned and the end product is usually really good - even without any formal help of associations, just via discussion in community groups. (Just look at what is achieved here at PR regarding info exchange!)