9 Comments
User's avatar
Hannah's avatar

Going through familial ME & LC now. It’s torturous seeing high level autoimmune antibodies suggestive of a connective tissue disease come up in a child affected, and nobody puts the bedfellows together… nobody cares when NICE guidelines have not been followed for years with adults in the family. There’s always been a willful blindness over ME which boggles the mind a bit.

Jonah Weisz's avatar

I'm sorry to hear that Hannah. Wishing you and your family all the best. Agreed that much much more needs to be done!

Audhdpainter's avatar

My ME has got worse after covid, my daughter now has POTS from covid and my very fit husband had over a year of long covid. We now mask everywhere in public as each infection piles on more issues. Building networks of other masking people for safer social meet ups

Seth Weisz's avatar

Very well written xx

Mark Harper's avatar

Fund the plan - absolutely. Consider signing our petition to Ashley Dalton https://you.38degrees.org.uk/petitions/ring-fence-funds-for-research-into-me-cfs

Jonah Weisz's avatar

done! Please do share our #FundThePlan campaign <3

Mark Harper's avatar

Already done! If you could likewise share our link that would be great

Isaac Zamet's avatar

Beautiful piece J. So well put. Wishing you all the best with the advocacy.

Jonah Weisz's avatar

Thanks a lot Zac <3