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This is an exemplary and badly-needed paper. It describes my experiences as a person with ME to a tee, and the accounts I hear from other chronically ill people. It highlights that uninformed or demeaning care creates a significant burden of iatrogenic harm. I'd like a further discussion of how...

Coverage from an EDS doctor: https://vm.tiktok.com/ZMYkc6nrY/ (5-minute video)

Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes https://www.sciencedirect.com/science/article/pii/S2667321523000215 Abstract: Patients with hypermobile Ehlers Danlos Syndrome often experience...

What's the supposed sign for functional cognitive disorder?

I'm pretty sure Glenn Chan was the author of this video. I'm immediately suspicious of its findings because it lists ivermectin. Since it doesn't help in acute Covid and there's no evidence for it in long Covid, it tests the study's methodology similar to a placebo.

The researchers are being far more patronizing to patients than anything I've seen in biomedical ME research. I'd expect to see these remarks in a BPS paper but it's shocking to see in serious research.

I'm pretty certain that functional cognitive disorder is a made-up diagnosis. When did doctors become so darn certain of everything that they stopped using the word idiopathic?!

Could refusing care be a factor in life expectancy? Many PwME have very poor quality of life and thus may let nature take its course when they get a life-threatening condition.

Then that's useless. I've seen people attempting to argue that being gay was unhealthy based on obituaries from the gay community. This approach is fundamentally flawed because it only counts the dying, a sort of reverse survivorship bias if you will.

US broadcaster PBS aired a very tactful and empathetic segment on long Covid on the news last night. People living with long COVID explain how the disease changed their lives It's 10 minutes long and includes a transcript. People with LC were candid about their physical, emotional, financial...

Moved posts Yikes. If only doctors had listened to PwME's symptoms, there might have been a treatment for PEM that allows PwME to resume their normal activities, and we wouldn't face the health burdens of extreme inactivity.

That's awesome! I hope lots of people sign up.

Well, that's embarrassing. Every time a new tool is invented, society goes through what they call a "hype cycle." First everyone thinks, "Wow, this is gonna change the world!" Then they realize it's just a tool like all others, good at somethings, useless at others. Over time, it finds...

No mention of PEM in the entire study.

I'm not terribly surprised personally. ME can skew towards physical or mental impairments. Unfortunately there's no statistics on this. I can walk for 30-45 minutes without getting PEM, but I have trouble taking care of myself due to cognitive impairment, so I can grasp that someone can only...

As someone who's not a woman, if they invented a biomarker that only worked for women, so be it. Better some people than none. Besides, such a technique could likely be adapted to be gender neutral in time.

I'm glad it's appearing in a paper: Long Covid isn't going away on its own or with conservative treatment. The obvious next step is basic research and drug repurposing, advancing to design of new drugs once we can blame certain chemical pathways.

:rofl::rofl::rofl:

I like your critical eye. I evaluate ME hypotheses with a similar yardstick: Could they explain PEM? Very few researchers have even tried to. One of the few that tries is hypersensitive microglia, with the additional advantage of proposing an explanation of physical and mental PEM. We're very...

Fascinating and very unexpected. Levels of many chemicals in healthy controls rose after exercise, but stayed flat in pwME. We often view PEM as an aberrant change in our bodies. But this study hints that in PEM, certain changes that should be happening are not.