Testing

General
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Hi all
I heard a couple years ago about a groundbreaking blood test to diagnose fibro but whenever I ask any of my many doctors they all say there is none. I’ve tried reading about it and have seen It’s called FM/a and proves fibro is an autoimmune disease. does anyone else know more about these developments?

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Hi Spacegurl!
We’ve got massive information on this, quite a few threads with details since 2013, if you do a search, e.g.:

  1. Finally, a blood test available for fibromyalgia! 2013
  2. FM/a test bogus? - Interesting Article from "MedPage Today" and STAT news: Selling Certainty 2021
  3. EpicGenetics new blood test for Fibromyalgia 2018

Bottom line: There is no test for fibromyalgia really.
Docs used to use 18 “tender points” to diagnose it, but this has been ditched as unreliable.
The so-called FM/a test was thought up by Bruce Gillis (company ‘EpicGenetics’) and is not approved by other researchers in any way. It proves only that cytokines and chemokines are different in that person, which would relate it to a whole number of immune problems. These substances are biomarkers of fibro, no proof of the cause or of fibro itself. A few studies, like last year by Goebel / Anderson, have been putting a slight case for fibro to be related to the immune system, praps autoimmune. But the prevailing hypothesis with many more studies is still that fibro is a central sensitisation problem. The problem is with many of these researchers is they are narrow-mindedly saying only they are right and they are proving something about the cause of fibro, which if you look at the studies closely is only very slight.
Gillis embarrassingly has a long history of dubious ethics, if you look at all 3 threads above. The “FM/a test” costs over 1000$ and is paid for by insurances to stop people looking for help further.
According to all modern criteria for fibro, incl. ACR 2016, it is necessary to exclude other conditions to explain our symptoms and this is exactly what the “FM/a test” does NOT do, so it’s a waste of time and money. It’s extremely frustrating for those who test negative but have all the symptoms and actually the diagnosis.

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Thanks super helpful :smiling_face_with_three_hearts: feel well

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“Add-it”:
The subjective feeling that a positive result is a confirmation that puts the mind at rest is an illusion or a placebo. So the “FM/a-test” can also be seen as dangerous if people do that “test” but no others. - Mind you not more dangerous than when docs don’t do “enough” testing, ignoring the criteria, to save time, energy and money.
A pseudo-“confirmation” may be helpful if anxiety is an issue, but it that is the case I’d work on that anxiety instead.
How much testing should be done is a general question of insurance (which may include health politics) as well as being prepared as an individual to fork out the rest. My insurance paid for almost everything I wanted done, but I would have tried to pay for quite a lot of it if not. But on the other end I get the impression that a lot of people on forums ask “Is this fibro?” just to not do anything much about the symptom, no testing, no treatment. I do think radically accepting (as in Acceptance and Commitment Therapy) is an important part coping of this illness, but I’d’ve thougt that goes too far if people just suffer and don’t do much about it, altho help would be there somewhere if they were motivated. But we’re all different and I seem to be pretty extreme / highly motivated the way I sleuth up every single symptom and spend lots of time on doing that. I’m a tumbler.

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Hi there. This is what I got. But I also read it could be blood work for this in about 5 years. So hard to say. Hugs! Take care :green_heart:

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Thanks for your input! :open_hands: Interesting thought. I’d be curious who said that.
What researchers are coming up with at the moment in the way of bloods / biomarkers is far from being accepted by others. And seeing as pain is the core symptom, and also the central sensitisation hypothesis as a cause is the most accepted, maybe it’s more likely that nerve exams might bring us closer than bloods.
I’m wondering if they will be able diagnose any more clearly before they come closer to the causes. Because that will take a lot longer than 5 years, I’m sure, I’d think 15-20.
Other things makes it so complicated is the similarity but difference to ME/CFS on the one hand and the diversity amongst us on the other, making it very likely that there are subgroups, which may have a variety of combinations of causes and tests.

I think all that depends on the development of machine learning / artificial intelligence, however much I fear that this will also be used for a load of dangerous stuff.

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Yes and whatever or however i hope they can figure out something before 5 years. And something that can make you cope and deal with it a lot better then how we are coping now. Hugs to you girl. Take care and stay safe :green_heart:

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