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Something I kept in mind while we were house-hunting is that stair-lifts are an option, usually adding a couple thousand euros or dollars to the bill. Some house designs are a lot easier to work with for installing them, but it's probably possible to work around any quirks for more money. But...

B12 injections and being careful with my muscle use :-P

These sorts of "diagnostic" tests just mean that someone found something a bit different from controls in a lab test, slapped a patent on it, and put up a website to sell it. They're 100% bullshit. At best they found something which needs to be more rigorously researched and replicated, but...

Yes, that's why it is important that the funding of health care not be a business - or at least a VERY tightly regulated one. If there is insurance (versus free care paid for with taxes), it has to be universal with universal fees.

Overthrow the government? But basically, if we don't like what government agencies are doing, the only supposed solution is to elect a different president.

The CDC and other US government agencies are essentially immune to lawsuits. The exception is if they choose to allow themselves to be sued. Needless to say, that almost never happens :p

He implies, basically presenting the supposed evidence that patients are depressed haters of psychiatric disorders, but rarely going so far as to flatly deny that ME has a biomedical mechanism. He wants to control the narrative and reap the benefits of it without accepting accountability for the...

It depends on the style ... but it looks like that company goes ultra-modern on the townhouse exteriors, so they aren't going to look very nice in a row. Our new house is a townhouse, but they look like cute little cottages from the front even though in reality are nearly as big as the grander...

Ben Goldacre and #AllTrialsButPACE :-P

We moved into a new house 15 months ago, and haven't had any problems. We immediately went with tile floors downstairs (underfloor heating) which looks like nice planks of reddish-brown wood, and minimally treated wood upstairs, so no carpet chemicals to deal with. Any pesticides in the ground...

That's basically what they're designed to do now. Low voltage, and they automatically shut themselves off if there's any overheating.

Electric blankets (or mattress covers) are extremely safe now, unless they're very old or they've been damaged.

It's not listed by the NIH in their data elements for ME/CFS. The report from the fatigue subgroup doesn't mention it, even as "exploratory", despite that two other fatigue scales only previously used in research with crappy criteria were listed as exploratory: The message may be that the CFQ...

Even in my mid-20's people assumed I was about 10 years younger. In my early 30's a dentist perplexed me by scolding me for having the teeth of a 30 year old :confused: That was all before I got sick. And I lived in rural Oklahoma for a couple years (lots of playing & working outside) and then...

From a BBC article: This isn't really news. Cluster 1 = Type 1. Cluster 2 is genetic diabetes, caused by mutations on certain genes. Clusters 3-5 are Type 2 with varying levels of insulin resistance. There's also diabetes caused by mitochondrial disease or other dysfunction. I think what...

Yes, that certainly can happen. There are more tests that can be done for markers of how well B12 is being used - MMA, I think? It's important to find the source of the problem so it can be treated properly, and not just supplement (if that would even help) to cover it up.

There are many different ways to advocate, and it isn't sensible or fair to criticize someone for failing to do it in every conceivable way or a certain preferred way. You can do it your way, they can do it theirs. It isn't doing you or anyone else any harm. And while I think AfME has very many...

PEM summary: https://www.commondataelements.ninds.nih.gov/Doc/MECFS/PEM_Subgroup_Summary.pdf This is also looking pretty good, though I still strongly object to including immediate symptoms of exercise intolerance as part of PEM. I think they took the patient recommendations (the survey some...

https://www.commondataelements.ninds.nih.gov/Doc/MECFS/Fatigue_Subgroup_Summary.pdf is interesting ... They are acknowledging that fatigue measurements are lacking, though I would argue that fatigue isn't going to be suitable for defining cases. They might be starting to understand that at...

A previous version from December 16th is at https://web.archive.org/web/20171216062535/https://www.commondataelements.ninds.nih.gov/MECFS.aspx#tab=Data_Standards