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I also have a "likely pathogenic" variant expected to cause a nonfunctional protein in a gene involved in fatty acid oxidation, for which no population frequency data exists, and which has no entry on ClinVar. Sounds promising. PS: but the associated disease has an autosomal-recessive...

I have access to my own raw data and am looking through it slowly. One of the interesting findings so far is a series of mutations in the HLA-DQB1 gene, and one in the HLA-DRB1 gene which are all associated with increased risk for multiple sclerosis. PS: also many variants in HLA-DQA1. I also...

It was similar for me. I didn't have as much contact with the healthcare system early on due to a slow and insidious illness onset but still received the mistreatment by family members (two of which are doctors) and teachers. The MUS and CBT model of ME is just the same dumb prejudice carried...

Sounds great. The patients are expected to need treatment every 10 years or so (nobody knows for sure). So quite not a cure, more like a really good, low maintenance treatment.

I can see the validity of both arguments here. There are some ugly and rarely opened expressed prejudices ingrained in the medical and research system. It's the only explanation that makes sense because otherwise the observed behaviour cannot be explained. What we hear often, that there are no...

Maybe it's more that they must invent new reasons for their own professional existence? As far as I'm concerned the ancient Greeks had human nature mostly figured out already.

I have this now. My brain feels chronically undersupplied with blood, and spending time upright makes it worse. While lying down it's not a strong effect but noticable.

Worse than I imagined.

I have a feeling that this LP study could go badly due to recruitment process. If I understood right the patients will be referred by the government agency responsible for welfare payments to sick people. These patients might feel like they have no choice but go along with the process, including...

I clearly remember that Ron Davis some years ago said they were seeing high levels of lipids in cells in one of the experiments they did. Maybe in connection with cells being lighter? Accumulation of lipids is something that can happen when the peroxisomes are not working well.

Is the peroxysomal dysfunction sufficient to cause accumulation of certain fatty acids? If yes, that would make reduction of fat intake or some kinds of fats a potentially useful treatment.

Maybe the right time is to measure every day for a week while the patient is doing a little too much. Not enough to cause a serious crash but enough to be a little too much.

A study by Morten and his Polish collaborators found a decrease in central energy metabolism in patients with ME/CFS when comparing pre and post exercise program timepoints. There was no control group so this was not published. This study of exercise for long covid also seems to be reporting...

Is this saying that oxygen-dependent energy production decreased?

I've been going swimming almost every day lately and there is a trend of finding it increasingly difficult over time. I keep having to reduce the time and intensity and have to spend more time horizontally during the rest of the day. This is similar to other periods in my life so it's probably...

I believe that something like LP has a high risk of long term harm because it attempts to persuade patients to believe in something that is not real. In the short term this might lead to some positive feelings but in the long term it cannot be good. A person that believes they can and should...

As far as I know, there's still no evidence somatization is actually a thing. They can't even define it clearly enough to allow falsification of the concept. Some people just really want to roleplay a thing where they explain to patients that their reality is false and that they're emotionally...

@DMissa are you interested in hearing some ideas on how to investigate PEM and ME/CFS?

They defined it as tendency to avoid unwanted experiences.