I am disappointed that the PSP process does not include the option of making clear the sort of research we want stopped, particularly the useless and potentially harmful ongoing studies that seek to attribute ME/CFS to psychosomatic factors, and clinical trials of the sort like FITNET that can't, by their design, produce useful information, and will continue to be used to justify useless therapies.
Yeah I think we're in a weird situation. I doubt most illnesses have to counter the crap research we've been subjected to, and the James Lind Alliance process is set up to be replicable in many different disease areas.
If we wanted to put out a charter of what our community defines as unacceptable in research and then get support for that I could see it as a possiblity (maybe between a few orgs?), but don't think that was really possible through this PSP process.
That said, some questions will clearly come out as having least support, and that in itself will be interesting.
Actually, I think our situation may be less unusual than you think. I believe that most diseases would benefit from allowing people familiar with the condition to identify the biggest problems in the research of it. I wonder if the process could be extended to trial that approach here? By doing that, you could actually strengthen the JLA approach for all conditions.
I mean, a whole lot of effort is going in to contacting stakeholders and asking them for their priorities. Why would you not also take the opportunity to ask them for their opinions on what is going wrong with current research? I don't think it would be too late to add that process on.
I did think about whether you could just get people to identify their 10 least favoured areas of research from the short list that has already been developed. I'd be interested in others ideas about whether that would be useful. I don't think it would. The short-listed items are mostly rather broad. Many of them include good questions to research, bad questions to research, and questions that are really really vulnerable to poor research approaches, all wrapped up in the one item.
Take for example
31. What causes the central and peripheral nervous systems (brain, spinal cord and nerves in the body) to malfunction in people with ME/CFS? Could this understanding lead to new treatments?
That particular question, without a parallel list of problems with ME/CFS research, would suggest that we should have more of the sort of shoddy and biased research that was this study:
Fibromyalgia and ME/CFS: an interoceptive predictive coding model of pain and fatigue expression, 2021, Sharp et al. But, at the same time, I think research into the functioning of the nervous system is really important.
It's a bit sad how many questions there were that I'd like to see an attempt to answer but that I would not trust UK medicine to research. When choosing questions, thinking about the risk of funding going to people like Crawley was my number one consideration.
I endorse the points Esther12 made in their post. I agree that doing this process as it is currently conceived could make things worse for us. I think informed people will, necessarily, have to choose the items on the basis that they are the least likely to provide happy hunting grounds for people like Crawley and Chalder; that the items chosen have the least potential to cause harm. That isn't a good way to identify research priorities.
I understand that the James Lind Alliance has a set process. But, it feels a bit like colouring within the lines - if the outlines are bad, you can't produce a good picture. If the template that is provided isn't going to work very well, maybe it's time to make a new process?
