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New Forum Software Installed (Still a few issues but reopening the forum) More details.
Esther12
Senior Member (Voting Rights)
For me, the main thing is the picking apart of poor research like PACE. There's still a lot more work to do, but I think that clearing up the mess that's been created seems vital for speeding up progress elsewhere.
Also, I think that there has been a useful spread of understanding about science/quackery amongst patients, doing something to limit the harm done by patients promoting unreasonable claims, and undermining our concerns. Again, there's still a lot to do there. Most people who fall sick don't have any sort of scientific training and can be desperate to trust those claiming to have any possible treatment. That most of the comments I saw from patients about rituximab seemed to stay relatively cautious and sceptical, even though there was good reason to hope that this was going to be an effective treatment for at least a sub-group of patients, was a positive sign, and will help limit the extent to which a null rituximab result can be used to promote the 'loopy patients' meme.
To me, it seems like there's a general positive shift towards research more likely to lead to useful findings, and a raising of standards, but I don't feel remotely able to pick one area which I think is likely to lead to a breakthrough.
Also, I think that there has been a useful spread of understanding about science/quackery amongst patients, doing something to limit the harm done by patients promoting unreasonable claims, and undermining our concerns. Again, there's still a lot to do there. Most people who fall sick don't have any sort of scientific training and can be desperate to trust those claiming to have any possible treatment. That most of the comments I saw from patients about rituximab seemed to stay relatively cautious and sceptical, even though there was good reason to hope that this was going to be an effective treatment for at least a sub-group of patients, was a positive sign, and will help limit the extent to which a null rituximab result can be used to promote the 'loopy patients' meme.
To me, it seems like there's a general positive shift towards research more likely to lead to useful findings, and a raising of standards, but I don't feel remotely able to pick one area which I think is likely to lead to a breakthrough.
Alvin
Senior Member (Voting Rights)
So far we have some happenings but there is just too far to still go, a few groups got funded recently by the NIH, and i hope Dr Davis does in the current round. We really need a disease mechanism and biomarker and of course a treatment.
We are far behind the dollars and research completed compared to the other giants, Cancer, Alzheimers, Parkinsons, HIV, MS and so forth.
We are far behind the dollars and research completed compared to the other giants, Cancer, Alzheimers, Parkinsons, HIV, MS and so forth.
Samuel
Senior Member (Voting Rights)
i'll give you 2, @Sasha.
[1]
we need solid results.* uncertainties such as few and small-n trials are categorically intolerable. history [and perhaps congress] will judge nih.
people are saying f&m did a good job. a good negative result can be better than several sorta positive ambiguous papers with insufficient data that don't get followed up on.
and the bad guys were not able to stop that.
[2]
in the past few years, our community has 1] strengthened, 2] matured, and 3] become more serious about the level of effort required of each of us.
we are getting tangible results. we are learning levers of power.
one day, perhaps soon and suddenly if we fight hard, we will transform into a ballistically unstoppable movement, solidly grounded in Enlightenment values of human rights and science, and possibly accelerated by a recognizably dignified, uncontestably righteous fury, with categorically unignorable, fearsomely powerful allies, possibly strongly supported by the general public, that meaningfully and rapidly gets our due, including critical things we are not talking about at present.
enough adverbs? quickly, i must add more.
===
tl;dr: fight.
* technically, solid-/ish/ because science is inductive.
[1]
we need solid results.* uncertainties such as few and small-n trials are categorically intolerable. history [and perhaps congress] will judge nih.
people are saying f&m did a good job. a good negative result can be better than several sorta positive ambiguous papers with insufficient data that don't get followed up on.
and the bad guys were not able to stop that.
[2]
in the past few years, our community has 1] strengthened, 2] matured, and 3] become more serious about the level of effort required of each of us.
we are getting tangible results. we are learning levers of power.
one day, perhaps soon and suddenly if we fight hard, we will transform into a ballistically unstoppable movement, solidly grounded in Enlightenment values of human rights and science, and possibly accelerated by a recognizably dignified, uncontestably righteous fury, with categorically unignorable, fearsomely powerful allies, possibly strongly supported by the general public, that meaningfully and rapidly gets our due, including critical things we are not talking about at present.
enough adverbs? quickly, i must add more.
===
tl;dr: fight.
* technically, solid-/ish/ because science is inductive.