Shannon Hammond

One of the most tragic parts of this illness for me is that chocolate is now a major stimulant for me and I can only have it in tiny quantities at precisely the correct time of day and on only a few days per year. Seriously, THE MOST TRAGIC!! 😭😭😭😉

I’m here! Too sick to really be “active,” but here all the same. Never got into the community on the other place, so for me this is where it’s at. I have a list that is almost entirely made up of PwME, and I mostly only look at that feed when I’m here.

I’ve had their song “Change” stuck in my head all morning and it’s a pleasant ear worm. Glad you’re enjoying too!

Selfie of 5 white skinned blonde people on a sandy beach together with trees and beach plants in the background. Two people are wearing prescription eyeglasses and another is wearing blue reflective sunglasses. Everyone is smiling.

I’m the one in the middle with the hat and big happy smile… because getting to a nearby beach with people you love is a VERY special occasion when you are housebound with severe #MECFS!! Yes I exceeded my limits for a day, totally worth it on this occasion.

I really appreciate your posts about this! I haven’t had the brainpower to really look at this guide yet and it’s super helpful to have a heads up on what’s concerning my fellow patients in this first draft.

Yeah, it really is…

It’s a huge problem here in Canada. Measles is likely to be endemic here again by the end of this year. Yikes!!

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What I mean is that’s what I use for all my loads of washing now, and that has made the washer not stink!

I live in a perpetually humid place with “hard” water, so the swampy washing machine is a real thing for me. What finally worked was using washing soda, borax, AND the usual gentle unscented detergent. Washing soda and borax seem to be the key. Hope you can find something that works!

Do you have any suggestions for origami books or websites? At the moment I can basically fold a crane and that’s it… that’ll be fun for awhile and then I might want to try something different.

This is such a great rest activity! You’ve inspired me to get out my rather large collection of pretty origami paper. And when that’s used up there’s lots of paper in the recycling. 😉

Some excellent analysis and cautions about how we go forward with this important new research.

#MECFS

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@exceedhergrasp1.bsky.social has done an excellent thread about this research if you want to check it out!

Maybe also some clues as to why some treatments work for some and not others, as well as genetic links to other comorbidities. Other studies have shown there are numerous “subsets” of ME patients with different symptom clusters, maybe that’s related to genetics.

… a physiological disease with distinct genetic components. I don’t have the brain power to read through the study results, so I’m sure there’s more nuance than that! But I imagine this would open up some doors to possible diagnostic bio markers.

I find it so hard to keep track of the research and how it all fits together, my brain just doesn’t make connections like it used to! I would love to see someone write an analysis of how this study fits with other research, but for me at this point it’s an important step in validating ME as…

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So I guess we’ve adapted our celebrations so that they are spread out rather than confined to one special day.

This year a couple of cakes got made near each of our birthdays. At other times during the “season” we made other special meals. At least one of those coincided with when we had cake, but we didn’t try to make it all happen on the same day. Likewise, cake making was split between multiple days.

Our birthdays are within a few weeks of each other. Breaking from our routine to do something “special” is pretty difficult so we’ve slowly adapted our celebrations to more or less fit our routine. We have “birthday season,” which is basically two months during which we can celebrate however.

My partner and I are both disabled but he is more functional than me and does most of the household tasks like food prep. I have always loved cooking so I try to help whenever I can and occasionally can make a simple meal myself. This is just my backstory to the celebration thing…

I feel a little better in the evening too. In the early days of being severe I would stay awake really late just trying to prolong that feeling and delay the terribleness of waking up in the morning. Now I try to cherish the little breeze of evening relief and also the sleep that follows. 💙

It’s also possible I’m a tad on the cynical side of things! 😉

I think my real beef about it is that it’s an official symptom name. If it was just a layperson term that would feel different. Like the name “chronic fatigue syndrome,” it feels like deliberate language to minimize intense suffering.

This is so great, I can’t wait to read it! I love prose turned poetry or even poetic prose. I mostly refuse to use the term brain fog and say brain damage or cognitive dysfunction instead. Brain fog sounds too cute for some pretty serious cognitive struggles. But it can get funny at times…

Big Thief, Cymande, Vaudou Game. These all come up frequently in my playlists. A couple fav tracks are Big Thief’s “Change,” and Vaudou Game’s “Pas Contente.” Vaudou Game is upbeat and funky but I don’t think it’s super bassy. Love having that song stuck in my head!

What an amazing project. Fellow #PwME, if a lovely art card in the mail would make you happy check this out! 💙

I’m not sure that forcing people to participate in a thing makes them respect that thing in the end. I don’t know how to nurture a respect for essential retail work in our culture, but that’s what I’d like to see. And wages to reflect that respect. End of my little rant, thank you (takes a bow).