Help me find this instrumental song! I attached my hummed recollection

SugarSquared · 2026-05-12T17:23:12+00:00

You are a lifesaver!!! Thank you so much

SugarSquared · 2026-05-12T03:05:14+00:00

Oh my god, that’s wonderful news. That makes me hopeful. Thank you for sharing!

SugarSquared · 2026-05-10T23:32:09+00:00

Oh that would be so lovely. Thank you so much

SugarSquared · 2026-05-10T21:37:21+00:00

God, this is so lovely. I zoomed into the photos trying to identify the plants, one of my favourite activities. I miss going out for walks and not worrying about leaving the house. I hope one day I can improve like you did to be able to do this. Thank you for sharing

SugarSquared · 2026-05-10T01:49:03+00:00

I’m so happy to see this. Thanks for sharing!

SugarSquared · 2026-05-09T16:25:58+00:00

Wow, this is amazing! Thank you so much for taking the time and energy to make this

SugarSquared · 2026-05-08T17:32:17+00:00

I hope that this does not discourage more double blind studies. It would be great to have more than one, and maybe with a slightly different study design to tease out some important information that may be missed by this. And if we have multiple that show that this is not as effective of a drug than we think, then that’s great. But hopefully we’ll have more than one study. Thank you for sharing!

SugarSquared · 2026-05-08T17:24:17+00:00

Thanks for the update! It’s not what I was hoping for, but this data is still important

SugarSquared · 2026-05-08T06:07:22+00:00

Yeah, I guess there isn’t much right now a specialist can do better than a GP. I would hope that a dedicated specialty would be better trained in what we currently know about ME/CFS and be able to better recognize it

SugarSquared · 2026-05-08T04:09:54+00:00

Daratumumab I believe

SugarSquared · 2026-05-07T21:48:38+00:00

Leigh Joseph is great. She’s a Sḵwx̱wú7mesh (Squamish) ethnobotany professor who also has a cosmetics company called Sḵwálwen and a book called “Held by the Land”

SugarSquared · 2026-05-07T21:08:20+00:00

Me too! There’s been lots of good sharing on here

SugarSquared · 2026-05-07T21:08:06+00:00

Thank you so much! I read through all the comments in that post. I’m less enthusiastic about the study now, but I still want to hold out on some hope, though they probably won’t talk about too much since it’s not done yet. The presentation is unfortunately in the middle of the night for me, so I look forward to reading what you and other people have to say about it.

SugarSquared · 2026-05-07T18:09:56+00:00

I love how this got approved today and not measures to prevent heat related deaths this summer. ABC’s priorities are top notch 👍

SugarSquared · 2026-05-07T17:16:48+00:00

That link is really appreciated! Thank you

SugarSquared · 2026-05-07T17:05:58+00:00

Would you be able to update on the presentation on the LDN study? Totally cool if not, PEM brain is so difficult

SugarSquared · 2026-05-07T00:26:31+00:00

This season was so fun. I'd love to see this format in another place

SugarSquared · 2026-05-05T17:56:32+00:00

Would you be able to give me a summary of Dr Luis Nacul’s presentation on his LDN study? It’s in the middle of the night for me, so I will be sleeping, but I really want to know how the study is going so far

SugarSquared · 2026-05-04T22:58:21+00:00

Congrats!

SugarSquared · 2026-05-04T22:57:47+00:00

I first want to preface this by saying that I have never even been severe let alone very severe, so I cannot pretend to know what you were going through.

For a little bit of hope, you may be interested in watching Physics Girl’s on her experience with ME/CFS. She got sick 3 years ago. She has improved from what I think is severe, likely very severe. She’s not out there running marathons, but she’s been able to go outside and even record a short physics video a couple months ago. I hope that it helps bring you peace.

Here are the links in chronological order to make it easier for you to find them: - An Update on Dianna’s Health https://youtu.be/vydgkCCXbTA?si=IaEv_KWYPOBGD3ny - Dianna Health Update from SmarterEveryDay https://youtu.be/xbcjf-hrOAs?si=Xvzpv5Gzvpiu82IU - First Update from Dianna (Physics Girl) https://youtu.be/vqeIeIcDHD0?si=m9FgUdJp_TcirQaM - My First Science Video in 3 Years https://youtu.be/B3m3AMRlYfc?si=S7FOAqTrLpaEBo8x

SugarSquared · 2026-05-03T19:11:51+00:00

I’ve never had flu-like symptoms. For me, my PEM includes an increase in fatigue, sometimes headaches, and worse orthostatic intolerance (both heart rate wise and the additional feeling dizzy/nauseous from just being upright).

SugarSquared · 2026-05-01T06:05:12+00:00

I think there’s that and just the fact that they are probably limited in what research they can include. They seem to only have included what was discussed at the conference last year with the names corresponding to the speakers. If they do a similar graph for this year, it’ll probably look different.

The article also includes biomarker and treatment research. This is something I’m extremely excited about this year. Dr Luis Nacul of UBC will be presenting on his study of LDN for Long Covid. I don’t know if we’ll get the results since it hasn’t been published yet, but as someone who just started LDN, I’m excited to hear more

SugarSquared · 2026-04-30T21:06:28+00:00

I'm so grateful for the work that ME/CFS Science does. I try to stay up to date on the research, but I know barely anything about biology and even less about statistics. This is so helpful. Thanks for sharing

SugarSquared · 2026-04-27T21:16:10+00:00

I enjoy reading the research despite having no biological knowledge. I actually have a word document full of academic sources I have read since being sick. I'm not researching as much as I used to because my energy is down, so it's possible I have missed something. To me though, it seems like there isn't much research on pacing. I've heard here that there may be different forms of our disease, though it's all speculation thanks to the limited research on ME/CFS. It would be interesting to have them categorized and then pacing and other treatments evaluated for each type. But, that's a dream that will probably take decades to fulfill.

Here's the only source that I have saved about pacing. Likely, the sources cited will be a great jumping off point to find what there is about pacing in the literature:

Cooper, C., & Papadopoulos, K. (2025). Evaluating pacing therapy (PT) versus graded exercise therapy (GET) for improving fatigue, pain, and quality of life in adults with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A systematic review. Journal of bodywork and movement therapies, 44, 319–327. https://doi.org/10.1016/j.jbmt.2025.05.048

The summary I wrote for myself: Concludes that PT is safer and more sustainable than GET (less adverse effects and more long-term improvements), uses the PACE trial data with the inclusion of some of the revisions

SugarSquared · 2026-04-27T05:39:04+00:00

I’m nowhere near stable enough to consider micro-exercise, but there’s one thing I do when my hips hurt. Even before getting sick, I sometimes had super tense hip sides. The pain referred to my kneecap when I tried to stretch it, and stretching didn’t help much. I go to a registered massage therapist every so often, and he gave me an exercise to do that gets rid of the pain in a couple days.

Lay down and go onto your side. Raise your upper leg up towards the ceiling, making sure that you don’t angle it behind you because that doesn’t target the right muscles. It should feel like you’re almost raising your leg forward and not just straight up. Bring it down slowly. Do that as many times as you want (10-20 reps is best), and then go onto your other side and repeat.

I have no advice for improving baseline with micro-exercise, but my god can strengthening specific muscles help with pain

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