2026 WE&ME Research Project - a research fund in collaboration with Science for ME

Do we also have a thread where members can indicate their willingness to participate in a research project as a patient representative?

The willing and available thread is much broader and also asks about roles in charities, the media, and the forum itself. So perhaps we could create a separate thread on this to make things more organised?
Members only - 2026: Willing and available - Registry of members interested in advocacy and research roles | Science for ME

On a related note: it would also be great if the forum could have a menu 'For Researchers' where we can highlight things that are important for researchers, such as the PPI thread, but also funding announcements, available biobanks, conferences, etc. To avoid burden to forum moderators, perhaps there's an option to use a code tag for the 'For Researchers' menu so that only threads with the tag appear in this menu automatically?
 
I think this may shed some light on the situation. The WE & ME Foundation reposted a Twitter post from the Christoph Ströck account (in Italics below)

One thing I've long believed is that a particular subset of patients is significantly undervalued and underutilized in research and funding decisions.

To be clear, I do not mean all patients in general (all patients are equally important and can have a meaningful role in various contexts, though!), and I would not place myself in this category. Rather, I mean patients who combine lived experience with extensive knowledge of the research literature and enough academic or analytical training to critically evaluate evidence and research strategies.

These individuals can sometimes offer a perspective that is difficult to replicate elsewhere. Non-patient researchers are almost necessarily more specialized. Modern science is simply too large and complex for anyone to master every relevant aspect of a field. Researchers at the frontier, are to a large degree incentivised to be siloed in.

These patients, by contrast, spend years developing an unusually broad overview of the field, its history, its recurring mistakes, its trade-offs, and its unmet needs. Because they are not confined to a single specialty anymore, they can sometimes connect insights across disciplines in ways that are difficult within traditional research structures.

I strongly suspect that making better use of this rather specific and highly qualified human resource, in a non-"fig leaf" manner, would improve decision-making quite drastically and ultimately lead to better outcomes for patients.

For organizations, identifying and recruiting these patients is itself a bottleneck to some degree. Organizations with more meaningful patient involvement will have easier access to such individuals and a better chance of finding them.

Overall, once started, I believe this becomes a self-reinforcing cycle that leads to more and better patient involvement over time.

There will be many new issues, challenges, and lessons along the way. Some are already becoming apparent. But with the right mindset and a shared goal, I think things will continue moving in a good direction.
Click to expand...
 
wigglethemouse said:
I think this may shed some light on the situation. The WE & ME Foundation reposted a Twitter post from the Christoph Ströck account (in Italics below)
Click to expand...
For context, Christoph Strōck is one of the two brothers in the family that created WE&ME.
The Ströck family’s journey has been profoundly affected by the impact of ME/CFS, shaping the nature and purpose of the WE&ME Foundation with unwavering determination. Two brothers, Christoph and Philipp Ströck, both affected by ME/CFS, lead the foundation’s mission. Christoph, the younger brother, was diagnosed in 2016 after years of illness, and his condition worsened due to misconceptions about ME/CFS. In 2018, Philipp, the older brother, was also diagnosed.
Click to expand...
 
You must log in or register to reply here.
Back
Top Bottom