Exploration of the idea of a register of patient advocates

[DokaGirl]

I like to get involved in advocacy but immediately the practical problem comes up if working with others , of how to get involved when my energy is so limited and variable. I tend to do things at my own pace which isn't helpful if it's a team effort with a specific schedule.

Exactly @Binkie4, well said. And, this applies to everything I do, even when it's just washing the dishes. Which for myself, and doubtless others with ME is like an athletic event. Apologies for the digression. But, I think Binkie4 has explained this very well.

I think publicizing one's interest in being involved is a good idea, but the downside may be that one could become a target.

 

[MSEsperanza]

I wanted to reply a while ago but can't find my drafted comments ATM so apologies for just popping in.

I just was reminded of the idea that it could be helpful to have a counterpart of a register of patients advocates, that is a register of possibilities to get involved in research and public health, both on an international and a national level

 

[MSEsperanza]

The following are just some thoughts in no particular order:

I realize that it makes sense to coordinate involvement with national patient organizations / charities.

On the other hand, S4ME provides an exceptional space for international co-working on patient involvement.

For me, this forum is the only accessible social medium to discuss research and co-work in a meaningful way.

I can't do facebook, WhatsApp etc., these are too confusing for me.

 

[MSEsperanza]

I realize that S4ME now urgently needs more volunteers for just running the forum. But if we manage to get more vounteers and continue being a space where science and pwME meet, it could be worthwhile to consider the idea how the forum could 'proactively' contribute to research?

I liked the 'running summaries' by staff members on the discussions on the draft NICE guideline.

Perhaps forum members could qualify as S4ME representatives for patiennt involvement in research by volunteering to do running summaries of threads that discuss research papers or discussions on research methodology?

Those patient advocates could co-work on the forum with members who are not able to be involved on a regular basis, and they could also co-ordinate the work with patient organizations.

Maybe unrealistic because if I remember correctly there weren't too many applications on the forum's volunteer positions. But I'm aware of a couple of (relatively) newer members who often bring some structure to discussions threads. Perhaps they even would like to do running summaries on a few threads if they were asked?

Running summaries of discussions on relevant research and methodology would also be helpful if we want point researchers, clinicians etc to our critique and suggestions.