The problem with long covid and ME/CFS research

The problem with long covid and ME CFS research

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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The problem with long covid and ME CFS research

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