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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.

Some of my results came back. My EBV antibodies are in. I'm seronegative for all of them. Seemingly, I'm one of the 5% of people who's never had EBV. My CMV antibodies came back and it's negative. Lyme is still out. My CBC (blood count) has several mildly abnormal values that could point to...

I was personally diagnosed GAD due to neurocognitive symptoms from PEM, mild depression due to the grief of having an incurable disease, and then somatic symptom disorder, before getting an ME diagnosis.

(Context: I'm autistic) Autism shouldn't be viewed as solely a disability. Mostly people need psychosocial support for autism. Sometimes autism comes with co-occurring conditions like speech impediments or anxiety that should be treated. Autism support must focus on symptoms the autistic persons...

It's gonna be hilarious when the accountants swing from calling biomedical treatment a waste of money to calling BPS treatment a waste of money.

Eh I'm not worried about the Lyme test. It's to rule something out. My current symptoms aren't remotely similar to when I had Lyme disease. I'm more interested in whether my EBV or CMV levels might be high. I would see that as a non-specific sign of illness.