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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.

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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!

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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

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Seth Weisz's avatar

Very well written xx

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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

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Jonah Weisz's avatar

done! Please do share our #FundThePlan campaign <3

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Mark Harper's avatar

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

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Isaac Zamet's avatar

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

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Jonah Weisz's avatar

Thanks a lot Zac <3

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