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Positive ANA among healthy people is more common in women and over 40s (meaning people over 40 years of age): (These quotes are from the literature review section of a paper by Blumenthal about the differential diagnosis of fibro and lupus. I don't recommend the paper, but the lit review is fine.)

I think it's worth getting the statistics straight. Regarding ANA, your statement is incorrect. I think this is an important one to get right because many of us will have an ANA test done at some point. In the absence of ENAs, a positive ANA does not mean someone's chances of having an...

Very interesting. Walitt et al. 2024 found no difference between patients and controls in plasma norepinephrine, but cerebrospinal norepinephrine "correlated with both time to failure and effort preference in PI-ME/CFS participants" (i.e. with patients' ability to sustain hand grip and...

Yeah, in the symposium they brought up PD but it wasn't remotely similar. In Chong 2015, people with PD had reduced reward motivation, which was resolved with dopamine-increasing medication. We didn't have issues with reward motivation. In my view it was trying to convince us that they were...

Agree.

Something advocates and researchers can do is always cite both responses (and any others that are published in the future) rather than just one. Kirvin-Quamme et al. 2025 and Davenport et al. 2025. I think the most powerful part of Davenport et al.'s piece is the authors - these are...

It's really heartening to have these people standing up for us. Sincere thanks to all. @dave30th @Mark Vink We now have two published responses to the NIH study: Kirvin-Quamme et al. 2025 and Davenport et al. 2025. Hopefully it is clear to others, even if not to Walitt et al., that "effort...

I'd love to hear @Snow Leopard's thoughts on figure 1 in Walitt et al.'s response to Davenport et al. I don't see how this suggests activity avoidance. To me it just looks like people who struggle with CPET also struggle with everyday life. Doesn't tell us anything about why they struggle...

The Ordinary (North America, UK, Ireland and beyond) is a fragrance-free and inexpensive brand for skincare, if you’re looking for things like acids (salicylic, glycolic etc). I have found some of their stuff helpful when I’m getting spots but am not at the need-a-dermatologist stage. I have...

Hopefully a rheumatologist can clarify for you. I found one study, which suggested that by themselves, SS-B/la antibodies have "no diagnostic or prognostic value".

Yes, I know what you mean. I've tried a few of the Toleriane moisturisers and the only ones I like are the eye cream and the "Fluide" one. My skin is changing with age too.

Sorry I missed this! Yes, I use an SLS-free toothpaste because of dry mouth. But toothpaste has never affected my lips. I rinse well.

I'm really sorry you have Sjögren's, @Pibee. I'm actually really interested in this topic, as it may be relevant in my case. There's no question that if someone has another condition, diagnosing it is important. But I can’t find any evidence that this is true: I found it interesting to look...

Not possible for me (severe ME/CFS), but someone else on the thread might like that. I have a big enough store that I could keep going for decades after they stopped making it!

Are the bees left with anything?! Some honeycomb maybe?

Kim et al. 2023 (Scheibenbogen's team) published a study called Characterizing Sjögren-Associated Fatigue: A Distinct Phenotype from ME/CFS. Their starting point was: References 6 & 7 are: Reference 6, Nishikai 1996, found: Reference 7, Sirois & Natelson 2001, found: Kim et al. 2023...

Europe, UK, Ireland: La Roche Posay's Toleriane range is fragrance-free (and made for sensitive skin). They do a nice cleanser that comes in a 400ml pump, and a smaller size. You just wipe it off, no water required, so it could be used from bed. It's got a lovely light texture, feels really...

:hug: We had to buy mattresses recently and I was grateful to be allergic to all the expensive ones - filled with wool, horsetail etc!

Oh I hear you. To eat fruit, someone has to cut it up for me and then I post it into my mouth without touching my lips. If my husband eats something spicy and then kisses me I get big red lumps. (For me this is a lifelong atopic thing, nothing to do with ME/CFS.) You can imagine how...

We use those too, and find them good, though I need a gentler handwash. I use Elave body wash and hand wash. I use the body wash as shampoo too, because the shampoo doesn't get my hair clean. Available in Ireland and UK (Amazon or their own website, plus pharmacies). Great for atopic skin...