BMJ Opinion: Amy Price: Patients doing research for themselves, 2014

https://blogs.bmj.com/bmj/2014/10/17/amy-price-patients-doing-research-for-themselves/

 

That is just so incredibly sad for the inventor.

 

Interesting article. I do like the idea of patient involvement in research - provided it's meaningful, not just cosmetic image-polishing. As @Trish said in another thread there's a risk of only patients being selected who are likely to 'approve' of the research in question, rather than ask critical questions.

I clicked on some of the links in the article.
1/ The idea of patients as peer reviewers is intriguing, has anything worthwhile come from it?
https://www.bmj.com/content/348/bmj.g3726/rr/702064
2/ Has anyone read the book Let Patients Help, linked in the article? Worth the effort?
3/ Is anybody here on Patients Like Me (https://www.patientslikeme.com)? Is it useful?
They say that on that forum

Not sure what to make of the discrepancy between 15260 having the condition and 4015 having it as their primary condition. Sounds like there could be some major diagnostic confusion in the mix, probably not helped by their description of ME/CFS:

ETA: Sorry about that large white space, can't get this post to format correctly for some reason.

 

I decided to be the sacrificial sign-up

Sign-up T&Cs note that you agree

And this is from when you complete your initial profile

Their "Fibromyalgia and ME/CFS" forum is quiet, the first page of threads goes back 3 weeks, and most of them are of the personal "just been diagnosed" kind.

 

The forum software is automatically processing the Amazon link into the little picture/button, probably easiest to put in on a separate line, that way it won't throw the rest of your formatting out.
And your link to patientslikeme has included the ")/?" in it, it actually links to (I've added spaces deliberately) https: //www. patientslikeme.com)/?, unless you are hiding a long URL for ease of reading, best normally to just let the forum software handle it, i.e. https://www.patientslikeme.com