Decode ME - did anyone take part? WHat do you think of the initial findings

[KatyMac]

I just saw this on Facebook - & I guess I was expecting more

https://www.decodeme.org.uk/initial-findings-from-the-decodeme-questionnaire-data-published/?utm_source=social&utm_medium=social&utm_campaign=Initial%20results%20campaign%20Aug%202023

Bump

I took part and yes the initial findings felt like nothing new. Almost like my hopes are dashed (coming up 9 years now) and it mentioned those over 10 years having worse symptoms (I'm unable to work was medically retired in my 30s although not bed bound). I so hoped for a glimpse of something new.

I really thought this plus the long covid interest/research would make a difference

And I cant help but feel as more women get it.....less research will be done

The cynical in me thought long covid (as men get it) would be investigated properly

But as the sex difference is so marked I wonder of sex hormones play a part - particularly as meno has been so hard on me

Diagnosed in '96 gaining a co-morbid every 5-8 years since

I found it all quite interesting. I don't have an official ME diagnosis, but two 'episodes' of CFS/post-viral fatigue diagnosed (17, 23). I was redeployed at work due to the second incident. Didn't cope well with pregnancy. Diagnosed with chronic migraines at 22. Diagnosed with Inflammatory Bowel Disease in my 30s. Diagnosed with Inappropriate Sinus Tachycardia and vasovagal syncope in my very late 30s (I passed out on the tilt test but the consultant decided against a POTS diagnosis). I feel exhausted all the time. Sleep disturbance. Brain fog.

It's very vague, as a syndrome, I think

Post exercise fatigue & posy viral fatigue seem a constant - but the other symptoms and wide ranging and different for each person

I wonder if thyroid testing included t3 how many people would be treated for thyroid issues