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Last week, as I was leaving the grocery store, someone stopped their car to yell at me, "Psycho! Get the fuck out of here with that Covid shit!" because I was wearing a respirator. So prejudice against mask wearers is a thing here, too.

They're putting a lot of people who can't realistically work in the work-related activity group. If the government tries to force people to do work they can't do, they will develop trauma from being forced and fight tooth and nail any attempts to make them work because they might get forced into...

You might want to discuss the US vs. UK difference in how claims are reapproved as well. In the UK, if I understand correctly, when it's time for PIP to be renewed, you're treated like a new claimant all over again. There's no presumption that you're probably still disabled because you've been...

This is, I mean, utterly extreme compared to how disability benefits are assessed in America. We have a 5-step process. An extremely condensed version would be: Is your condition bad enough that you obviously can't work? (See the Blue Book) If it's not, are there basically no full-time jobs...

So it could be more than 125 million, but the exact amount depends on how much money to government allocates to research? Still, that's very impressive, if the money is well-spent. It's also noteworthy that they're explicitly saying it's for research into the pathophysiology of ME. If they keep...

So 125M Euro? Wow.

There's a subtle shift in the language they use. It used to be researchers assumed pwME were stupid and lazy, now they're throwing away that piece of psychosomatic ideology and acknowledge pwLC want to be active. Doesn't excuse potential flaws like not excluding people with PEM though.

The thing about this paper that surprised me the most was the fact that this team believed she had an illness and made a real effort to accommodate her.

It's best to run your audio through something like Audacity to get your levels right and perhaps apply a compressor before publishing.

I don't think I'm reading the article for this one.

If someone with ME has very positive reactions to COVID-19 vaccination, are they less likely to have a bad outcome from the actual virus? The Covid vaccine (I get the Moderna) gives me a bizarre side effect: A week of near remission from ME, including reduced severity/duration of PEM. I...

I'm so angry that the CDC is considering publishing such utter lies that I don't have a constructive response. Edit, I picked my jaw up off the floor: What's informing the CDC's advice here? A rational approach might be to base recommendations on acceptably low chance of getting severe long...

Another cause of the lack of donations may be the lack of bequests. Death from ME is rare, and when people with ME die, they may have gone decades without being able to work or access disability benefits, meaning they have nothing to give.

On one hand, conflating severe fatigue with ME is severely misinformed. On the other, research into the biochemical and immunological aspects of depression is sorely needed and potentially valuable. If certain physical symptoms are reasonably correlated with immune markers, it's more sensible to...

The heart problems some people with LC experience might be similar. Many have various heart issues, including chest pain or other heart-attack-like symptoms without obvious damage to the heart.

The latency you get in this test will be the sum of your reaction time and the computer's latency, most of which is display latency. Display latency varies widely, and is likely to depend on obscure details of your operating system, graphic card, and monitor. The lag from your mouse counts but...

Really, they use 350 as the cutoff for "indeterminate"? Some people think even levels in the 500s can give you problems and B12 is so easy to supplement. A B12 level around 550 caused me mouth ulcers.

Concise and solid. Explicitly says GET is no longer recommended. Says low dose naltrexone/low dose Abilify can be used but little evidence behind them.

Agreed. Pacing is akin a skit my dad did to poke fun at doctors: Patient: "Doctor, it hurts when I raise my arm" Doctor: "Then just don't do that!" Pacing needs to be universally understood as a coping/management/palliative technique. It's not a treatment. It doesn't make us better and doesn't...

That's an excellent idea. Digestion increases your metabolic rate. If cognition can tip you into anaerobic metabolism, digestion probably can too. Also, I'd really love to see a similar study on mild ME. Do people with mild ME exceed their anaerobic threshold doing simple daily activities, even...