Thanks for doing this.

No funding commitments from the government?

I used to think that if I was unwell doctors would help me. Now I know how common medical gaslighting is. Multiple levels of marginalisation makes it even harder.

Leanne: They would take on different roles - when she could't cope, Pete could. Then they would swap.
A step at a time. A day at a time.
Some days let herself collapse.

Senator Jordon Steele-John: In preparing for today, revisited the timeline for the development of new clinical guidelines. What struck him, that a draft is still two years away. Also recognises how much effort it took to get this process underway.

Professor Michael Kidd: Acknowledges that 25% of people with ME/CFS are bedbound or housebound and there is a high economic burden to the disease, though says the true cost is lives constrained, opportunities lost and voices unheard.

What caused the all-cause mortality to increase?

What would make you more confident that the model does fit? What experiment or study would you need to see?

6) We plan to delve deeper into the implicated genes and pathways in a second blog post, but zooming out, it is already clear that the genetic data of ME/CFS patients mostly point to the brain.

If ME/CFS were a war, it seems that the brain would be its main battlefield.

I would argue that another limitation is that chronically ill people tend to hang out with each other. If you are chronically ill, your spouse is likely(?) to be chronically ill too, hence, an increase in doctor's visits & disability pensions for them.

Roos from ARPA-H said the agency will soon take action on Long COVID. "In short order, after this forum, we can come up with a plan, work that through the secretary’s office, get that out..." in a timeframe of weeks, not months or years, he said.