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What would Carson make of the observation that the following things are typical of ME/CFS but not typical of depression? Having to lie flat at least some of the time Delayed worsening of symptoms in response to activities Rest in a quiet, darkened room improves symptoms. Can have significant...

Yes, it's backwards. The study results confirm the validity of what was done, that includes the diagnostic criteria, recruitment process, and analysis. The identified regions are different from those found in GWAS of other conditions and seem to tell a coherent story about a disease initiated...

It's more that adults aren't comfortable with children having an unexplained disease. The adults cling to the narrative that it's psychological because that helps them extinguish their own discomfort. The children are actually being abandoned.

Merged Staphylococcus toxoid was once claimed to be an effective treatment for ME/CFS and fibromyalgia. To my surprise, I discovered that a clinical trial report existed. Is it possible that this treatment was genuinely effective, but was forgotten due to circumstances? Is there some error in...

It sometimes feels like an ordinary infection will reset something in the body for a few days, during which I feel better... that background feeling of sickness improves. It's not all infections, just some. The staphylococcus toxoid vaccine was allegedly also effective as treatment for ME/CFS.

DecodeME is in the health section of La Repubblica, one of the most important newspapers in Italy. https://www.repubblica.it/salute/2025/08/11/news/sindrome_stanchezza_cronica_indizi_genetici-424783863/

The thinking is that in the terminal stage of the illness, the immune suppression of the virus would fail. Since symptoms and signs of brain infection don't seem to be a common phenomenon in terminal cases, brain infection doesn't seem convincing. There are going to be patients who also have...

It sometimes feels like the underlying issue is that disability is framed as psychological problem because society cannot accept that the patient is disabled (and unable to work or contribute in a meaningful way). A useful message, bluntly expressed, could be to "hate the disease, not the...

I noticed a similar dynamic, albeit less extreme when doing psychotherapy. It seemed that the starting point is the assumption that the patient is doing something wrong. Since the therapist cannot know what that is, they can only propose different variations of "this is what you're doing wrong"...

In ME/CFS we have the problem that we don't know what diagnostic criteria are best. We can create different diagnostic criteria according to what we believe best describes the disease, but that's just an opinion-based process. If we had an objective method for defining ME/CFS, then we could...

I didn't say it was the criteria that should be used. It's just a possibility. It should be possible to devise some criteria that fulfills the purpose. I'm thinking that the 8 hits in DecodeME is a powerful sign that there is at least one specific disease whose signals the study was able to...

I'm wondering if it's possible to use a GWAS to develop better diagnostic criteria for diseases with no objective tests and unspecific symptoms. One could use GWAS data to compare different diagnostic criteria or combinations of different parameters to see which ones give the most hits above...

I suspect that it has more to do with how ME/CFS is viewed in each country among healthcare professionals than case definitions. In Italy nobody uses the ME label, and Fukuda criteria are used and my impression is that there's a lot less toxicity towards patients and the illness. It's widely...

https://www.mdpi.com/2076-3921/13/4/449

One of the candidate genes in the DecodeME preprint. Curcumin increases PRDX6 expression.

Is it possible that we struggle to understand ME/CFS because we don't understand much about how the body returns to normal after an infection? In the sense that we know a lot more about infection, inflammation, autoimmunity than about the restoration of homeostasis that follows that fighting...

Yes. I interpreted it differently, along the lines of "To our surprise, we were unable to explain why women are more likely to have ME/CFS". I was thinking of total risk. What is actually meant is that the portion of risk that comes from the variants examined is insignificantly small. It...

It was mentioned in the abstract. To me that makes it seem that it was not something a person with basic knowledge would expect.

If that is the case, why did I have the impression that the result of finding no explanation for the increased risk in women was surprising?

ME/CFS does have a problem with misdiagnosis, and my intuition tells me that heritability estimates will be more accurate for diseases where there's less diagnostic uncertainty. In the Neale database, h2 for fibromyalgia is 0.0112 (or about 1%). ME/CFS is doing pretty well in comparison.