@Simon, I've had debates about this with
@Jonathan Edwards, and he remains adamant that brain research, as long as it is "good science", has a place in understanding our illness. Maybe it can. Maybe the brain's contribution can be modified in some way to help patients feel better. I'm sceptical, because sometimes even what looks like "good science" ends up being a reframing of psychological accounts.
The hard thing is navigating the terrain of cognitive neuoscience. Its so hard to tell which hypotheses are really offering something different, and which are just neuroscience instantiations of earlier, psychological models. I can pick it instinctively, but I do this sort of thing all day. I need to be able to produce a cheat sheet for everyone else.
Here it is - the neurobabble meter for brain studies of ME (studies that don't just report observation, but make suggestions about what those observations might mean).
1. Causal Role of the Brain in the Whole Illness
Is the brain dysfunction said to be the
primary cause for the illness (either its original cause, or the reason for the illness being maintained over time)? Score 1 for this.
Or are the abnormalities seen as consequences of some other disease process? So brain is responding normally to messed up incoming information. Score 0 for this. Skip the other questions. Your total score is 0.
If causality is left as an open question, and various hypotheses are considered, score a 1 (this amount of hedging often indicates a psychological approach).
2. Reason for the brain dysfunction itself
What, in the authors' view, gave raise to the actual brain dysfunction? If it was "learned experience from a previous severe and prolonged illness", and it is hinted that such learned changes might be "unlearned", score 1. This is a psychological model, phrased in neuroscience terms.
If the dysfunction is said to have a direct, biological origin (dysfunction caused by long term effects of inflammation on brain function, actual tissue damage/ or irreversible loss of tissue), and it cannot be modified through learning, score 0. If you score 0 here, then you need not complete the other questions (insert a score of 0 for each one).
If left open, or not explained clearly, score a 1.
3. Nature of the brain regions whose functions are said to be affected?
Score a 1 if some or all of these regions are mentioned:
-insula, anterior cingulate (any part), basal ganglia, prefrontal cortex or orbitofrontal cortex
But few or none of these regions are mentioned:
- temporal lobes, occipital lobes, parietal lobes.
The first set of regions are often discussed in relation to psychiatric disturbances involving motivation, interpretation of pain and other bodily signals, anxiety etc. Genuine brain dysfucntion will affect both the first and the second group of regions most likely equally. If only the first set are mentioned (preodminantly or exclusively), the authors are subtly moving in the direction of a neuropsyhciatric model (a model based on impaired emotion, motivation, responseivess, disorted pain perception).
4. Reason why only a subset of persons with severe infections get ME
If this is not considered, score 1.
If it is suggested the "individual differences" come into play, score 1 (this is hinting at a psychological explanation)
If a good account is given, that doesn't appeal to personality factors or had waving "individudal differences", but rather emphasises biological variables (good luck finding one of those!). Score 0.
5. Other clues
Those with psychological views about ME are aware that patients don't like them, so they can be good at avoiding any statements that might say as much. So I think its reasonable to look beyond the study to find other evidence of their view.
Score 1 if there is no mention of any research that does not focus on brain or mind accounts of ME.
Score 1 if the only symptom discussed is fatigue, without even mention of others or justification for the focus on fatigue.
Score 1 if the researcher has made other statements in other work to suggest he/she believes psychological factors are at play in ME/CFS.
How did you score?
4-7: Disregard this study. Its psychobabble dressed up in neuroscience terminology
2-3: There are red alerts here. Not all may be as it seems. Treat with caution
0-1: This could well be good research that contributes new information.
EDIT: PS Simon, see thread on Neil Harrison's work for an example of a proposed brain study that Jonathan and I disagree on (his view, its good science; my view, its a new framework for describing an essentially psychosomatic view of the disease):
http://forums.phoenixrising.me/inde...ing-mri-fmri-spect-and-pet-scans.44961/page-4