Jo
On the one hand, people are complaining that researchers are not interacting with and explaining their research proposals to the ME/CFS patient community
On the other hand they are complaining when a group who planning a very complex and costly research proposal provide preliminary information on various aspects of the study at a research conference, invite the public to express support for what is being proposed, and agree to provide regular email information to anyone who says that they are supporting the aims of the research
You just can't win!
My bolding.
You've said it yourself
@charles shepherd . The problem has been that when this started, the CMRC and MEGA didn't want feedback from patients if it was critical, you only wanted feedback so long as it
expresses support for what those behind MEGA want to do.
What
I find depressing is that you are repeatedly portraying patients negatively over MEGA. Which I think is especially ironic as you yourself have spoken out against people who dismiss patients concerns in this way. Here you are doing it yourself, seemingly because you're upset because patients disagree with you.
I find this whole narrative where patients are characterized as wanting to strangle MEGA at birth (which was a distasteful and inappropriate headline which the MEA ignored presumably because it only upset those who disagreed with you, I guess you felt that made it fair game!), kill it in its tracks, stop it at all costs etc. a rather extreme and misleading interpretation, as is the idea that we're against it because of psychiatry despite almost everyone I have seen over the last couple of weeks going to lengths to make it clear it is not about that. Also, labeling those in opposition as a vocal minority is just nonsense and it's also rather sad, especially given the history of that phrase.
Just to be clear - if White and Crawley were removed, I think I'd like MEGA to go ahead (although I'd still like more details before deciding).
I've said it before and i know many others share this view, i would like this study to proceed if the the appropriate changes are made. ( exclude White and Crawley, better patient selection )
I would like this study to proceed if the the appropriate changes are made. ( exclude White and Crawley, better patient selection, ie CCC )
I think these posts sums up how most people feel, but to say this is the first time you have seen people say this I think would be disingenuous. This viewpoint has been expressed over and over and over on PR and elsewhere in the last couple of weeks by so many people. It's impossible to miss. Patients
do want an -omics study. We want to get behind the good researchers and offer support over the coming decade for them to do this work. I mean, come on, why the hell wouldn't patients want such research? Unless you have actually convinced yourself that patients are stupid? Patients are very good at supporting well-conceived studies and have been doing so enthusiastically forever where it has happened, including in the UK. I think most of the researchers outside the BPS crowd would confirm that.
I've noticed a pattern that those in support of MEGA are continually pointing out the good people involved, and I'm sure that's where you all feel most comfortable talking about MEGA, but this is missing the point entirely. No one has any problem with the good people involved, in fact they are the reason why there wasn't an immediate petition in opposition on day one, and why many people are waiting to see if changes are made before signing the petition in opposition because they want to support the good researchers involved if changes allow them to. But their involvement does not nullify the involvement of other people like White and Crawley, charities like AYME, nor the other problems, so I think listing the good people involved and expecting that to make the problems go away is just going to annoy people further. What patients want is for those in support of MEGA to engage on the actual issues and help resolve them, or at least discuss the difficulties in trying to achieve that (without blaming patients that it's all going to be their fault if they won't accept their involvement).
Wanting such a research study with good researchers involved does not mean anything goes and that patients should be seen (with their signatures) but not heard (no critics allowed, or rather, only criticism you feel able to resolve). We just don't want bad researchers involved who can't even carry out basic research without huge yet basic methodological flaws in their work, and have a track record of screwing patients over. We also want the study to be effective, meaning patient selection needs a rethink. I think this has been the majority view from day one and has been clearly expressed here on PR every single day, so I really cant fathom how you've reached your conclusions.
My hope is that those in support of MEGA, including yourself, would stop looking for negative ways to dismiss patients concerns and interpret them incorrectly because you don't like the viewpoint, and instead recognize that just because they disagree with your approach to push ahead with MEGA no matter the problems, does not mean they are your enemy (I know you haven't used that phrase, but the things you've been saying lately suggests this is how you are seeing it); they are not out to kill MEGA, the majority are waiting to get behind it, and wanting to, but for that to happen their concerns have to be taken seriously and addressed appropriately.
