I started sharing some ad-hoc thoughts online after filling in a Long Covid research survey. Then I thought I might collect all my random social media thoughts on this topic into a blog post. The trigger for thinking about this was a LC survey asking if I will participate in blood samples…
I ticked on the survey that I would do blood samples only if they come to me. I *can* make it to vampires but it’s not the getting there that kills, it’s the waiting & the challenge of my veins. And I’m not risking a covid exposure in shitty small unventilated rooms for research either. Given it’s not medically necessary for me, I’m not risking a flare (or worse) for research.
And it got me thinking about the other things I need before I can participate in research.
Shame that any ME/CFS, LC, or similar studies aren’t being designed with the default of realising they need to go to patients 🙁
Surveys had pacing, which is good.
I know funding is hard but a key “feature” of living this shitstorm of a condition is that doing things makes us worse… how is this not considered in the study design!?
I can leave the house a little. Eg 2 trips a week in a 5km radius from my house. That lets me get food & medicine. I rarely get to use trips for enjoyment. Using them for research is so far down my list that I’ll never reach it.
What would it cost to do a day of research, say surveys and bloods?
I assume a week of recovery.
Which means I need everything taken care of for me.
- Food delivered & made for me for a week.
- Pay for missing a week of work.
- All symptom management medications topped up & available to me.
Somehow compensating for “intangibles” such as:
- Risk of baseline decline (will you give me in-home care if I go to severe?)
- Risk of losing a job for taking a week off.
Again, I feel this delves into that “my needs are considered luxuries” thing.
No wonder research is barely funded. We’re expensive & it’s much cheaper to let us internalise costs than give us the support we need.
I sit in an odd place on the descriptions of mild and moderate ME/CFS. I can work but only because I have a fully remote job and a disability friendly employer and the work suits my needs. But I can’t leave the house much and don’t ever really get to do hobbies of any kind. My biggest symptom/issue is debilitating fatigue and the thought of getting out of bed some days feels impossible. But either way, whichever “category” I do or don’t fit into, I know my boundaries and I will not consider pushing them for research.
I also cannot see how research that doesn’t support the person to attend AND recover is going to be high quality in the long term.
I worry that data gathered from mild cases will not apply to those people who are moderate and severe.
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