Conclusions
Despite no significant differences in absolute steroid levels, network analysis revealed profound disruptions in steroid-steroid relationships in ME/CFS compared to controls, suggesting disrupted steroid homeostasis.
Collectively the results suggest dysregulation of HPA axis function and progestogen pathways, as demonstrated by altered partial correlations, centrality profiles, and steroid ratios.
These findings illustrate the importance of hormone network dynamics in ME/CFS pathophysiology and underscores the need for more research into steroid metabolism.
Chris, I'll try to explain what it's like to read those conclusions, when the data is not nearly good enough to support them and the evaluation of the literature expresses bias, as a woman with ME/CFS and the mother of a young man with ME/CFS. Maybe then you can understand why I feel so strongly about this paper and have criticised it so harshly, when equally bad papers from psychosomatic proponents so often just get a few snide posts and a bit of a laugh from us. I write these posts because I think that you can do things better.
People with ME/CFS have been told that all sorts of things are wrong with them, pretty much all of them based on inadequate data and very often poor analysis. We are routinely called neurotic, perfectionist, unwilling to make an effort, militant, fearful, hysterical and overly dramatic, unable to express emotions, overly ambitious, hypochondriacal, overactive to stress, low cortisol due to burnout, cognitively impaired, depressed, anxious, heartsink inducing, many more.... A few of the descriptions may be correct, but we need them to be solidly based in evidence and described very precisely.
Of course there is something wrong with us, we want to find out what it is. But it's a blow when a paper like this comes out, produced by people we respect, people that some of us are actually helping to fund. It can easily be interpreted as definitively saying 'people with ME/CFS have hormones that are out of whack' when there really is not good data to support that claim. The way the abstract is worded, the conclusions can easily become to be seen as an established fact. That can hurt how people with ME/CFS see themselves and how they are seen by others, in quite a number of ways. For example, the mention of progesterone pathways might lead people to think that women with ME/CFS as a whole might have difficulty with fertility. Imbalanced hormones go nicely with accusations of hysteria. Many people are ready to offer self-improvement strategies to tackle "altered HPA axes".
The paper also produces a loss of trust in the people we are relying to find the answers. It makes me feel that we are simply fodder for the advancement of careers, even though I know that that is not how you see it most of the time. I get the feeling that the researchers might think it is worth stretching the truth if it results in funding (I believe truth has been stretched to breaking point here). Ratios of hormones were not found to be significantly different, and yet the abstract says that they were. The data is not clean enough to warrant any conclusions about differences.
I really hope that the study that is following on from this paper will correct the problems of this one. I hope that it will be cautious in its claims, understanding that it is very easy to create harmful myths that can suck scarce research funds into unproductive areas.
Perhaps you can tell us more about the next study and what safeguards you are building into it.
