Search results

From a Workwell Email: This is approximately 160 km (100 mi) northwest of their location in Ripon, CA, meaning more people will be able to reach them. However, it doesn't mean much to anyone on the east coast who might want to get tested at Workwell. (Though they have Betsy Keller)

I also think they did a good job. They must have managed to recruit a significant fraction of all people in the UK with a ME/CFS diagnosis. There's an often-cited estimate that 250,000 people in England and Wales are affected, but I imagine most of them are undiagnosed.

This was the most-read article on Washington Post yesterday:

I share my experiences openly because it helps me feel better, and because it might spark change.

Yeah, medical records are extremely GIGO. I'll give you my favorite example. A neurologist said I might have a certain genetic disorder, and to see a geneticist. I asked my PCP for a referral for a geneticist, to see if I had this condition. They gave me a referral and then put it on my chart as...

Could be useful if effective but would be very difficult to prove any effect.

I don't have much to say. I just hope she is able to get to a better hospital or get care at home.

Psychiatry is absolutely, I mean, fundamentally broken when it comes to issues around informed consent. The minute a patient makes a decision psychiatry doesn't like, they're immediately labeled unable to make decisions for themselves. This has no rational basis and no other field operates like...

I don't know. With anorexia, there's this extreme push to make people eat. With ME, there's the assumption that you either don't want to eat or mistakenly think you can't. But perhaps the causes are the same if you look at the big picture: Both are the result of people not treating patients with...

I strongly support giving people with anorexia the option of palliative care. People with anorexia are absolutely competent to make their own medical decisions. If you don't feel comfortable eating, you don't feel comfortable eating, and you have the right not to, whether it's due to a mental or...

On Sunday I visited the ER for a vision issue. I saw many providers, none of whom asked me about my code status. I wanted them to put a DNR/DNI in, to ensure resuscitation would never be attempted at any facility in this healthcare system. When I was about to be discharged, I told the nurse...

This is pretty good news. Unfortunately no details like staffing or funding that would allow us to estimate how much research they'll be undertaking. Regardless, it's part of a trend of increasing awareness of ME/CFS, long Covid, and similar.

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.