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?
Author here.
Not really. I mean, there are tooltips and icons, but not in the sense that you'll be able to grasp what it does just by taking a look at its structure.
> 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)
I recently had a new person, strong neurodivergent who struggled greatly with the fact we were/are an organisation with many flaws we are working on. They came to me after their first week with a 9 point plan to fix volunteering. Point 1: Get a volunteer coordinator. I felt like hank scorpio palm to forehead, a volunteer coordinator, why didn't I think of that? We were of course super aware of it, nearly impossible role to fill. I'd give a limb for one almost.
Burnout is _the_ monster that I'm trying to fight, more people, smaller workloads. Predicated on getting more people however.
Setting tasks is... well you learn that you have to train people how to do it. And how SMART Goals are one thing, and actionable tasks are another (subset thing). If you write the task as a Goal, when it comes time to assess if its done, you play the interpretation game and it gets a bit rough.
I think skill building is a big factor that, while we talk about it, we should highlight it more front and center.
Recognition is definitely powerful, as I said in another comment, the issue I've found with it is that if you miss just one person, they tend to feel much worse than if you thank no-one. Hard to catch everyone in that net.
We have been talking about gamification ideas lately, letting volunteers get some form of karma point for doing certain tasks, letting volunteers 'fist bump' each other to tip karma as thanks for a job. Then its a self reporting issue and harder to be left out. Still chewing the idea over, feels like capitalism with extra steps.
Volunteers are definitely hard. If i ever get a coordinator i may nail them to the floorboards.
How did you organise your charity? heirarchical, groups by area or topic? how did they work together?
Do you have any tips on how to get people to do the boring jobs. "Please update the asset register for your area with the msds for anything you keep in stock" 2 hour job. Like pulling teeth, but i need it for compliance.
reply