Bob
Senior Member
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- England (south coast)
Even with the most deftly handled campaigning, I'm not really sure what 'realistic' aims we can hope to achieve anyway - other than things like Shepherd's attempts to improve ESA, and other DWP matters. When so many of those with power over how CFS is treated are the problem, it's difficult to see a way forward that doesn't involve some unlikely and unpredictable break from the past (a medical breakthrough, interest from a powerful outside source, success of a somewhat radical campaign).
I think there have been some small but significant breakthroughs over the past couple of years, Esther. Such as the quite large private funding from the CFI; the new FDA interest; and the new biomedical funding mechanism at the UK's MRC. Even the CDC seems to be taking diagnosis seriously, with their ongoing project (even though not everyone is happy with the methodology they are using.) And new high-profile researchers have come into the field: e.g. Levy & Lipkin.
I think the changes are incremental, but I think you might be right that the situation won't change in a major way for patients until there is a major research breakthrough.
Maybe just trying to improve our own understanding of the issues that surround CFS, and the quality of debate amongst patients, will lead on to more effective and unified campaigning in the future? Probably not.
I'm not sure it could ever be completely unified, because there's a lot of politics involved, and some very entrenched opinions.
But I usually find that when people make an attempt to discuss opposing opinions in a supportive way, on the forums, that they soften their attitudes towards each other. It's not always the case, of course.
A project that I'd like to get going would be for patients to collate a list of the strongest, most impressive, and most repeated, biomedical research. There's a heck of a lot of biomedical research out there, but I've never seen it categorised, except for Margaret William's comprehensive immunological research list, listed by year.
I've not seen the biomedical research systematically reviewed either.
Maybe I've missed some important resources though.