I volunteer as tribute! I’m a 2003 PwME who is second generation, and my son is diagnosed 3rd generation. And we have lateral transmission to my wife, somehow. My Dx. was by Dr. Nancy Klimas 2009 and had an extensive work up by the Mayo in 2010. Seriously, if there is anything I can do to assist your research, please let me know. (I’ll put contact in my profile)
I have yet to find a language/ide with good discoverability. Does the visual metaphor enable the blocks/objects/functions to tell you what they do and how to use them?
> but would help moderate your acid-base over the long term if you can push through the pain/fatigue/etc.
Pushing through is part of the problem. The crash that comes from pushing is the real problem --all kinds of blood markers go amuck after exertion (especially anything aerobic >10m, like a cardio pulmonary exercise test) and stay amuck for about a week. And the more you try to do during the crash the longer or worse the crash becomes. Pushing regardless of crash status, like in graded exercise therapy, has actually caused ME/CFS/Long Covid baseline symptoms to become worse semi-permanently.
Are you referring to Social Security benefits counselors? They are notoriously difficult to get ahold of (in NM); you have to go in person and wait in a large room for (usually) hours with several hundred people. And then what you’re told varies depending on the person.
In my experience, short tasks/projects that have a definite end work the best. Do not give volunteers projects that are mission critical with hard deadlines. If you must give volunteers on-going tasks, make sure to try and recruit enough volunteers that they can rotate between different jobs/tasks. Burnout is a killer on volunteer teams. And some level of politics and drama are inescapable—a volunteer coordinator can really help keep it to a minimum though.
The biggest motivator I’ve found is resume building. Match your volunteers to things they’re interested in trying out—including soft skills! Help coach your volunteers to find the right fit!
Recognition is another huge motivator. Newsletters, meetings, special awards, you name it.
Volunteers are hard. A good volunteer coordinator is worth their weight in gold!
If anyone has specific questions, I’m happy to answer.
(I helped run an all volunteer charity for about a decade)
Have you heard of the FODMAP diet? It can really help with IBS. You start by eliminating all foods with FODMAPS[1] for six weeks and then gradually reintroduce foods from each of the FODMAP categories. It’s recommended to have a dietician/nutritionist help with the temporary diet. It was pioneered by Monash University. [ https://www.monashfodmap.com ]
[1] the FODMAP acronym: Fermenatble Oligo-,Di-,Monosaccharides And Polyols