Unravelling Fibromyalgia-Steps Toward Individualized Management (2017) Hauser, Clauw, et al.

https://www.sciencedirect.com/science/article/abs/pii/S1526590017307009

What I liked is this simple approach to categorizing fibro: as mild, moderate, and severe. Based on daily functioning.

Patient an active partner in determining management of illness.

 

That seems moderately competent. I'm not impressed by further sub-grouping by mental health, I don't think they are particularly relevant here any more than subgrouping about financial proficiency or possible gambling addiction just because chronic illness commonly leads to poverty. Let's deal with relevant things that are significant, shall we?

Also seems like the kind of stuff that should have been done decades ago, though maybe it has.

https://sci-hub.tw/https://www.sciencedirect.com/science/article/abs/pii/S1526590017307009

This bit is weird:

Cultural differences are definitely not the problem here. It's make-believe. You can show it works if you want to, just like astrology. The problem is the make-believe part, fairies are just as fantastic in any lore you want to explore, no matter what place they hold.

There is clearly a lot of hesitancy to call a spade a spade, to bluntly state that efforts so far have been disastrous. I'd really like to see more bluntness in that. I think it's necessary, for us and for other maligned diseases, to recognize just how much nonsense has been peddled and how blatantly wrong it was. Anyway...

Reference is: http://www.chronicpainresearch.org/public/CPRA_WhitePaper_2015-FINAL-Digital.pdf. I remember that. Didn't have much impact.

Some good bits but it's too attached to the nonsense that has dominated research in FM, like us:

It's not as fundamentally wrong as most of the typical research, especially the dumb BPS stuff, but unlikely to bring much clarity.

 

This sounds to me to be following the same logic as the UCH poster presentation. It is being acknowledged that the evidence based for the standardised treatment regimens used in trials is weak. The response is to say that everyone needs personalised treatment. It would be common sense to personalise treatment in any situation, in terms of which symptoms were most troublesome, but that still requires an evidence base for the modalities you choose from.

I detect a backing themselves into a corner effect here.

 

Can't really see how that's economically feasible either. That's a big BPS thing, pretty much all the clinics seem to boast about every treatment being individualized. But on top of not delivering any benefits, that's not realistic. Resources are already insufficient, that's just never going to work.

We used to have a time when every product was individually created. That was before the industrial revolution and most people had nothing because individualizing everything doesn't scale.

I guess that's where the numerous attempts at making those self-delivered through the Internet come in. But then that's the cons of both approaches and none of the benefits. Just like IAPT, which will also fail for the same reasons. The promise of gourmet food with the delivery model of fast-food. Complete pipe dream.

Too much magical thinking involved, or details left to be filled in later, "details" that essentially make up 99% of the thing in practice.

 

I've been reading research since my 1996 diagnosis and wondered about the research results stating high incidence of childhood abuse in FM patients, as well as high history of mental illness. (The team out of Oregon Health Sciences Center did some of that research, as well as developing the FIQ intrument, and discovery of the low levels of growth hormone in FM, if memory serves me).

Theory is that the abuse in childhood, that chronic stress paves the way for later FM.
Maybe so.

Thank you @rvallee for finding the article via sci-hub. If I had first read the article, I would have said it was a mish-mash of old stuff (and who advocated acupuncture, which has been disproved as having an effect on FM?).

I keep hoping for real science. I think the FM research efforts of the last few years have slowed.