Why is this still happening?

[Kathy Bungard]

I realize it is from the UK and they are die hards about giving patients any kind of respect, but even they have to at some point stop this!

The association between borderline personality disorder, fibromyalgia and chronic fatigue syndrome: systematic review.

Of all the things they could and should be spending on research this is still what they are doing?

A pox upon them and the horse they came in on!

 

[Paw]

Seems they're on a fishing expedition, yes, but that's the nature of scientific research. The focus here is BPD because they happened to have some relevant cross-tab data.

I realize that our community is rightly advocating for much more of certain kinds of research, but that shouldn't preclude other research that might prove illuminating in the long run. These researchers state that BPD appears to be connected to physiological alterations in certain areas of the brain. To my reading, they are not particularly interested in behavioral linkages between BPD and FM/CFS.

They are agnostic about whether brain-function abnormalities are the cause or consequence of medical disorders such as CFS. They are equally interested in inherited abnormalities and environmental influences -- which is certainly appropriate given how much more we need to learn about the mind/body connection and its impact on disease.

They ask: What are some of the factors that can lead to permanent changes in neurocircuitry, causing an entire system to be hyper-vigilant and overly aroused? This, of course, is not the only important question out there, but that doesn't make it insignificant or malicious. For some of us, it can be an intriguing and fruitful path to examine, provided we don't get overly defensive about concepts such as "mental health."

 

[ShyestofFlies]

Your average decent small-medium study costs a few million, in the US that means we would get probably 3 such studies a year if we used our entire government budget and no private funding.

This may not be a US study but just as an example of why we might feel robbed having possible 1/3 - 1/4 of what we might be awarded in a year thrown at a study that lumps us in with a personality disorder in particular, since there is already such a shuffling to decry eveyone with fibro and cfs/me as "type A personalities".

I can understand people's frustration with being tied to mental illness all the time (It's beyond coincidental at this point I'm sure we can all recognize that we are being pigeon holed). I do see value in integrating mental illness sometimes, as someone who is also mentally ill, but being boxed in like this continuously is really not helping anyone.

Unfortunately every study that combines in this way ends up being glossed for just the title and interesting tidbits that news sites pick out rather than being taken for their value as a study, which ads to our issues but says far more about the quality of medical professionals right now.

 

[Paw]

I don't know the details of how projects in the UK are funded, but, in general, I applaud any researcher who, in good faith, picks at any thread of this huge tangled ball of string. Like the recent "dauer state" headlines, all new partial insights are subject to superficial misunderstandings. But that's a minor annoyance compared to the alternative of trying to dictate what research is legitimate and what's not. Even Einstein recognized that the path to new discoveries is not a straight line. Insights come from all directions.

Our reflexive shunning of any attempt to unravel the complex connections between abnormal brain functioning and disease manifestation seems to me not only short-sighted, it actually might reinforce certain preexisting perceptions about our community's defensiveness. But that's all just background noise. More than anything it seems to me unhelpful to refuse to even look at any research that involves the psychiatric scientific community.