May 12 is International ME/CFS Day

Millions of ME/CFS victims are missing from LIFE

Every year this date reminds me that we STILL have no diagnostic marker, treatment, or cure for the devastating disease that stole my life as a physicist in 1989, the week of Nov. 5th.

Another year with nothing really new that can turn me back into a functioning person.

Or even help new victims.

Except that this year there is an understanding that, if we didn’t know what virus had done the damage, ALMOST ALL of the long-covid victims would be diagnosed, based on symptoms, with ME.

But we know that virus, and possibly that will help some of the targeted research that now has been funded to figure out the mechanism of the damage and find a way to reverse some of it.

And maybe, MAYBE, some of that research will benefit newer victims of ME/CFS, and possibly – though the damage is so long-standing it’s hard to think how – those of us who have been waiting for decades.

If you pray, pray for us.

If you’re not the praying kind, think of us kindly.

We’re still sick – and I wouldn’t wish this illness on Putin.


Meanwhile, Pride’s Children: PURGATORY is still in existence because of ME/CFS, and NETHERWORLD will be out very soon (the disease makes me very slow).


7 thoughts on “May 12 is International ME/CFS Day

  1. Lee McAulay

    Nice to see how the ME/CFS community has stepped up to support the Long Covid people. In time I suspect we’ll see an overhaul of the built environment too, as the huge cohort of those disabled by Covid push a need of adaptations and “reasonable adjustments” into the mainstream.

    Liked by 1 person

    1. Alicia Butcher Ehrhardt Post author

      We could have been ready to help these new long-covid people – if research money and belief hadn’t been diverted over and over and over in just the three decades I’ve been sick.

      Ready to tell people what to do and what NOT to do when they first didn’t recover, and then in the years after. It breaks my heart.

      Thank you for understanding.

      Liked by 1 person

    1. Alicia Butcher Ehrhardt Post author

      Thanks – let’s hope research, finally taken seriously and with money poured into it, helps.

      I almost worry more about the effect on the worldwide economy of the estimated 10% or more of the covid cases turning into long covid. Those were often working adults who will need services instead of paying taxes. In the US I’ve seen estimates of 8 MILLION new permanently disabled people. That’s a drain on any economy – and there’s no sign of covid going away yet.

      Liked by 2 people


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