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News and experienced related to Cleveland Clinic, one of the most prestigious hospitals in the United States.

In their analogy, ME/CFS and long Covid should be viewed the same way. They're related, not identical, and aspects of pathology and treatment may be shared between them.

Worth every penny.

I didn't notice the word "encouraged" there. In that case, it's just PEM-washing. (Saying they're managing PEM safely without actually doing anything). I hope I'm wrong. The only ethical way to conduct an exercise study on LC patients is to screen for and exclude people experiencing PEM.

They need new guidance developed in collaboration with patients, not 13 year-old trash with small updates from the NICE guidelines.

I agree with @rvallee here. Analytical methods (directly measuring particulate filtration) beat empirical methods (in this case, likely with many weaknesses) every time.

Key passages Google translated: The rest is an amenable discussion of ME/CFS (one heading reads, "Recognized as a physical illness since 1969, but still psychologized") and overview of the new organization:

Wish people gave accounts of how they reacted to the gaslighting. If someone treated me like that I'd explain the scientific consensus on ME, and walk out. Once a doctor tried to blame my symptoms on inactivity, and I straight up roasted her in a MyChart message: It's my policy that whenever...

Encouraging. We'll see whether screening for PEM is properly executed. It would be far better to simply exclude people with PEM. Assuming it's actual psychological support and not ME-CBT, it's a bandaid on a bullet hole.

IRL = In real life

Next up: The wetness of water among rivers in Switzerland, 2023, Smith et all. Jokes aside, no matter how obvious it already is to patients, it needs documented in painstaking detail.

The DSQ is notorious for poor specificity. It's a screening tool at best. Thus I doubt the validity of this study.

There's plenty of diseases that fluctuate over time. Nobody in the US talks about the Lightning Process without scoffing. The overall situation in the US isn't great. Average doctors are still quite bad but the highest levels of the ME/CFS discussion are almost entirely biomedical. We have Dr...

Ah, I thought it was familiar. Good to see this excellent piece getting carried elsewhere.

Long Covid's Cruelest Symptom: Homelessness https://www.rollingstone.com/culture/culture-features/long-covid-homeless-chronic-illness-gig-economy-1312460/

POTS affects roughly as many people as ME but gets one tenth the funding. Embarrassing.

ARFID is an eating disorder where someone can't eat many foods due to sensitivities to certain flavors, colors, or textures. It's common in autism and has nothing to do with body image.

The doc was reciting the criteria for POTS (30 BPM increase). Epic facepalm.

I don't believe tall tales from anyone, and the OMF won't achieve anything magical few years. But they're one of the biggest research charities and fairly prolific. Hopefully their treatment trials, which they announced at the end of last year, will get off the ground. I'm not expecting the...

I don't see anything wrong with that. They're doing research into a neglected disease. Of course they're delivering hope.