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Here’s a Wayback link as well: https://web.archive.org/web/20250126171057/https://www.theguardian.com/society/2025/jan/26/the-mindbody-revolution-how-the-division-between-mental-and-physical-illness-fails-us-all

How liberal publications accept such patently dangerous and pseudoscientific narratives is beyond me: “Mapping the measurable state of the muscle that is the heart, for instance, on to the symptoms the patient is experiencing often shows a poor correlation. This gap, Edwards says, is where the...

You might find Solve ME's CFIDS Chronicle, a newsletter they published from the late 80s to 2010s, to be useful. I've been collecting and digitizing old issues and just finished another set yesterday. I'm up to 66 issues at ~3500 pages, from 1988 to 2007, of the Chronicle and a smaller mid-2000s...

If expert provider’s do anything it should be putting you in the best position to get disability, as @Milo spoke to. Both speaking about the disease in ways that prepare you for the possibility emotionally (especially if you’re on the edge functionally at work) and doing the tests and writing...

Second issue released: https://patientresearchcovid19.com/patient-generated-hypotheses-journal-issue-2-summer-2024/ Topics: Elevated abundance of the Streptococcaceae family within the intestinal microbiome is a consistent and relevant finding for ME/CFS Vijay Iyer Chronic inflammation in...

I have one of the mid-range Zojirushi, a 5 cup Micom. Zojirushi is often regarded as the best brand for rice cookers in the US, but some of the other Asian brands like cuckoo and tiger are apparently just as good. The micom versions have settings for white rice, brown rice, and porridge, as well...

I’ve found a rice cooker to be very helpful. I use it most often for steelcut oats. Cleaning is very minimal with white rice. More so with brown rice as the foam leaves more residue on the lid. Oats leave no residue on lid, but the bowl takes a bit more work to clean. It makes great quinoa as...

Holy hell. This is more nakedly preposterous than I could have imagined. To not define, identify, and measure the cardinal symptom of the illness properly and then conclude the paper with some vague garbage suggestive of old central sensitization theories is so far beyond unforgivable. I’m...

I use my phone for most things and one small adaptation that helps is that I sew ribbon into a band along the back of the case for my fingers to slide through (like this: ). Helps with hand pain as it allows me to hold the phone lighter and to shift my fingers to different positions as they get...

Yeah, I agree, it’s a product of larger forces, and maybe we need this kind of thing as a general kind of statement, maybe the value is more political than scientific, but I tend to think this kind of work probably would have even more impact if approached a bit more carefully. In regard to the...

Patients pursuing treatments that may leave them worse off doesn't bother me, in and of itself, and I think generally that there is value to the idea of citizen science, that patients can advance knowledge through careful experimentation, but I do think it matters that patients are given as...

I imagine it’s probably a factor in most debilitating illnesses, even those with treatments. But I do agree it seems like it’s worse in this disease, or at least similar poorly understood post-infectious diseases, where there’s stigma, no treatments, and ambiguity about what the disease is and...

Happened to me as well, many years ago, but didn’t recur with other or the same antibiotics over the next couple years. That seems to be the norm when I’ve researched this. The partial remission I experienced was part of what led me to try faecal transplants, which was the most disastrous...

The zealousness, in this space and others, really bothers me. There’s significant risk of harm with treatments like this. I don’t think, as Trish said, we should judge patients for pursuing the treatments that make sense to them. But patients that push certainties about things that are very...

I missed that. Thanks!

I’d love to see technology that could aid in helping me pace. But I’m skeptical that current tech has the value we’d like it to have. Pedometers, HR, and HR variability in my Garmin band haven’t been significantly more helpful in preventing crashes than just gauging how I feel waking up and how...

I think the history, science, and personal narratives are persuasive when they’re given a chance. Social media thrives on strong reactions to often barely consumed content, so I tend to view it more as a general barometer of awareness. I was one of the patients who spoke at Quinnipiac’s program...

Reddit definitely tends regressive, and I don’t disagree that the views aren’t representative of what doctors think generally, but I wanted to point out that that Residency subreddit has a 175k or so subscribers, which is far from small, however many bad actors and rubber neckers are also...

For anyone that can’t listen to the podcast, this bit is from 40 minutes in: “We found that there is something which is normally there in every human being. In the patients, it starts to deplete inside the body. And it’s like a balance. You tilt toward one side, you start developing mild, tilt...

Cuisinart and Kitchenaid both now offer food processors that have dicing attachments that process vegetables into 10 and 8mm cubes, respectively. I haven’t bought one yet, but I’m considering it as declining wellness alters what meals I make and how I prepare them. For small batch meals, I’m...