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Lack of positive mood is interesting. Often I enjoy doing stuff that gives me PEM. If I exercise I feel quite good during the PEM delay. Once I get PEM, there's a modest tendency to be in a moderate or bad mood. If PEM affects our moods, why? Is it the effect of PEM on the brain, simply because...

Luckily I've never been subjected to that. Once I visited someone in hospice and there were signs asking us to wear their masks, but nobody gave us a hard time. If they did, I would have left. Ironically, we were visiting someone who was potentially dying from long Covid. Her autoimmune issues...

The captions in case you don't have the time or energy to watch: It's amazing there are now people on TV criticizing the BPS model. This never would have happened without long Covid. Edit: no people -> now people. Sorry.

"Exhaustion disorder" is more like burnout than ME.

Absolutely. Many people now recognize that mental health problems are serious and can be debilitating. People with mental conditions aren't blamed for their own suffering. But the psychosomatic model says people only think they're sick because they focus on their symptoms or worry too much...

Similar article about US benefits: How Dehumanizing Administrative Burdens Harm Disabled People

We have some barriers in our disability system. When you claim SSDI (disability benefits based on your previous work record), you cannot collect benefits until 5 months after you become disabled. You have to wait 2 years after that (a total of 2 years 5 months) to get Medicare (government...

Do you have a link for that?

The government needs to consider this when ME drug research gets serious. If someone invents a drug that's effective but very dangerous, perhaps it makes you very vulnerable to cancer, or damages your liver over several years, it should still be approved and pwME should have the choice to take it.

Why do the hard work of understanding pathophysiology, inventing drugs, and getting formerly bedbound people back to normal lives when you can sit in your armchair and philosophize?

Absolutely, even sporadic job losses will put companies in a jam. And mild declines in cognitive function will have major costs when they cause someone to forget a brilliant idea or result in a serious accident. These effects are so subtle that even guesstimating the costs is hard.

Translated by me (not Google!) Banco de España (Bank of Spain): The latest reports from CIS Institution's "health barometer" show higher demand for healthcare in our country and an increase in days of work lost to sickness, short-term disability and accidents. (The graph is titled "Economic...

Maybe it's a year on Uranus, considering its origin.

Excellent job to Workwell and their partners. The graphs can be freely shared (Creative Commons license) and are an excellent demonstration of how exercise affects PwME, and the huge difference between us and healthy controls. Modeling PEM as a "drug" is an interesting exercise but reveals...

It still shouldn't take two doctors.

This was recently discussed in Useful arguments regarding the evidence provided by psychological and biomedical ME research? Here are transcripts. 2-min Twitter vid 5-min highlight vid Edit: Break into manageable-sized paragraphs

99% with PEM, yikes. I'm sure that's skewed because PwLC + PEM are more likely to visit BHC than PwLC and no PEM or mild LC, but the high prevalence of PEM in all PwLC, and almost 100% prevalence in some cohorts, is cause for great concern.

I'm 4 years in. It's been a consistent non-24 pattern and sleeping 10-12 hours, with minimal trouble sleeping besides sleeping at inconvenient times.

I find it odd that the UK is making two major changes in just a decade. (The previous one was the phaseout of ESA?) Disability benefits haven't been reshuffled in the US in decades. Social Security began paying benefits to older disabled workers in 1956 and younger ones in 1960. SSI (for people...