I could write a long reflection about this, but as you can imagine, I don’t have the energy for it lol.
While it’s a sad reminder, I don’t want it to be a sad day. I’m sad often enough. I’m thinking of ordering sushi to celebrate surviving one year with ME/CFS. Do you do anything to “celebrate” your anniversary?
Rodríguez-Freire, C., J. Navarrete, A. Rozadilla-Sacanell, et al. 2026. “Efficacy of Low-Dose Naltrexone in Women With Fibromyalgia Syndrome: A 12-Month Randomised, Double-Blind, Placebo-Controlled Single-Centre Clinical Trial (INNOVA Study).” European Journal of Pain30, no. 6: e70321. https://doi.org/10.1002/ejp.70321.
Conclusions from the abstract:
“LDN was well tolerated but did not demonstrate a clinically meaningful benefit over placebo for pain-related outcomes, underscoring the need for more effective pharmacological treatments.”
Significance statement from the abstract:
“This RCT provides the first long-term evidence on the efficacy and safety of LDN in FMS. LDN (4.5 mg), administered as an add-on treatment, has a favourable safety profile, but the findings indicate that it does not produce clinically meaningful improvements in FMS symptoms compared to placebo at short- or long-term follow-up. These findings contribute to the growing body of evidence questioning its clinical utility.”
Rodríguez-Freire, C., J. Navarrete, A. Rozadilla-Sacanell, et al. 2026. “Efficacy of Low-Dose Naltrexone in Women With Fibromyalgia Syndrome: A 12-Month Randomised, Double-Blind, Placebo-Controlled Single-Centre Clinical Trial (INNOVA Study).” European Journal of Pain30, no. 6: e70321. https://doi.org/10.1002/ejp.70321.
Conclusions from the abstract:
“LDN was well tolerated but did not demonstrate a clinically meaningful benefit over placebo for pain-related outcomes, underscoring the need for more effective pharmacological treatments.”
Significance statement from the abstract:
“This RCT provides the first long-term evidence on the efficacy and safety of LDN in FMS. LDN (4.5 mg), administered as an add-on treatment, has a favourable safety profile, but the findings indicate that it does not produce clinically meaningful improvements in FMS symptoms compared to placebo at short- or long-term follow-up. These findings contribute to the growing body of evidence questioning its clinical utility.”
When lockdown hit in 2020, I watched a lot of cottagecore tiktok compilations on youtube. I mean, a lot. I would like to watch them again, but it's hard to find the right ones.
The videos I watched had people baking bread, making violet syrup, and all of the classic cottagecore activities. One of the audios I remember talks about getting old and ends in "all fat and sassy" in a lovely voice.
I’m housebound due to my illness (ME/CFS). I miss going out to restaurants, so I order in food to compensate for this loss. What are your favourite places to order delivery from? Bonus points if they have carbonara pasta, I’ve been craving that like crazy
Description from the YouTube video: "This webinar covers the Sequence ME and Long Covid's aims and progress, what the UK government funding means for the next phase of the research, and a Q&A with Action for ME CEO Sonya Chowdhury and Professor Chris Ponting from the University of Edinburgh."
Abstract: Endometriosis is a chronic systemic disease affecting ~10% of women, yet its genetic basis and molecular mechanisms remain poorly understood. Hence, here we conducted a genome-wide association study of endometriosis and adenomyosis in ~1.4 million women, including 105,869 cases, aiming to expand loci discovery across ancestries, dissect symptom-specific effects and integrate multi-omic data. We identified 80 genomic regions associated with endometriosis risk, including 37 new loci, of which 5 are also associated with adenomyosis. We identified putative causal variants underlying over 50 of these associations. Transcriptomic, epigenetic and proteomic analyses across tissues linked endometriosis risk to pathways involved in cell differentiation, immune and hormonal regulation, tissue remodeling and inflammation. Drug-repurposing analyses highlighted potential treatments currently used for breast cancer, contraception and preterm birth prevention. Endometriosis polygenic risk interacted with abdominal pain, anxiety, migraine and nausea. This study advances understanding of genetic risk factors for endometriosis and provides molecular support for several hypotheses on its pathogenesis.
Koller, D., He, J., Løkhammer, S. et al. Multi-ancestry genome-wide association and integrated multi-omics analyses of endometriosis and its clinical manifestations. Nat Genet 58, 1051–1061 (2026). https://doi.org/10.1038/s41588-026-02582-2
In French, POTS is “le syndrome de tachycardie orthostatique posturale” which is shortened to STOP.
So, don’t forget to STOP when you have POTS 😉😂
Please excuse my many off notes and key changes. I’m doing the best with my memory after not hearing this song for over six months.
This song sounds like it has harpsichord or some kind of melodic percussion (but likely not just a piano). The more melodic and less rhythmic part is either a hum, a theramjn, or some kind of string instrument. I don’t remember where I heard this song. I feel like it comes from an older movie, but I heard it in one of my cottagecore music playlists on YouTube. Please help me out!
First paragraph: “In this article, we summarise the most interesting presentations from the 2026 Berlin conference on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Genetic evidence pointed towards neural tissue, whole-body scans highlighted muscles and bone marrow, while trials on immunoadsorption, low-dose naltrexone, and methylprednisolone reported null results.”
This is a question just for the sake of it. I like thinking about this sometimes, but I doubt it will happen for a while since it seems no specialty wants to take care of our patient population yet.
In my opinion, I feel like immunology, neurology, or maybe rheumatology would be best equipped to treat ME/CFS. Immunology is kind of obvious with all of the immunological problems. Neurology would make sense because this is considered to be a neuro-immune disease. If neuroinflammation, becomes better proved, then it would definitely make most sense for neurology to treat us. I think rheumatology would only make sense if there is more evidence for auto antibodies.
I hear of a lot of people getting help from internists, but I don’t really understand how they differ from general practitioners and doctors. And it’s not like we’re the only disease that affects multiple systems. Just look at diabetes. If someone can explain to me what distinguishes internists, that could be interesting. I also think that there is not as many internists as other specialty doctors, so that’s why it would not be my first choice.
I just get so mad so often that we are relegated to healthcare professionals that are interested in us instead of having a dedicated specialty with lots of doctors that can take care of us. Many people have no doctors in their area. Some have one that specializes in it, but also has many other problems or just might not be up-to-date. And then there are some lucky ones. But that’s it. It’s so messed up that we have no dedicated specialty for our disease and are just left to hope that somebody was interested enough to pick up our case. That’s why I like daydreaming about this question, even if it is unlikely to happen anytime soon.
This image is in an article summarizing the 2025 international ME/CFS research conference. It was published a couple weeks ago in the Autoimmunity Reviews journal.
The 2026 international ME/CFS research conference is coming up next week! If you want to learn more, here's the link: https://events.mecfs-research.org/en/events/conference_2026
Source: Fehrer et al., Expert perspectives on Myalgic encephalomyelitis/chronic fatigue syndrome – Insights from the 3rd International Conference of the Charité Fatigue Center, Autoimmunity Reviews, Volume 25, Issue 5, 2026, 104043, ISSN 1568-9972, https://doi.org/10.1016/j.autrev.2026.104043