Fibromyalgia FM/a Test Scandal

This is a long well researched article on fibromyalgia and Dr. Bruce Gillis' FM/a test advertised on SiriusXM. Dr. Gillis claimed to the associated with the Faustman Lab at Mass. General Hospital. I called the lab and asked about the test and was told that Dr. Gillis was not associated with the lab. I sent this information to a reporter and that eventually became this article in STAT magazine. At the end in the comment section I tell about how I became involved.
Best regards,
Alan
 
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Hi Alan,

We were discussing the scandal around Dr. Gillis not long ago in another thread. You can read it here. Thank you for sharing - and raising the alarm!
 
Nice of you, Alan / @alanfromny , to reach out to us yourself, after having uncovered this, thank you very much!
I'd always been very skeptical of Gillis, as his ideas are quite far off from everything evidenced.
I saw this new scoop quickly and had already written a lot about it here and elsewhere.
Dr. Gillis claimed to the associated with the Faustman Lab at Mass. General Hospital. I called the lab and asked about the test and was told that Dr. Gillis was not associated with the lab.
However as you can see in the other thread @Jemima mentioned, there is evidence by the lab itself that he definitely had been associated.
I'd thought you'd gathered that, as it also says so in the STAT-article.
His major wrongdoing was continuing to claim the association after he had dropped it, on order to motivate people more to do his test.
So what you have written is not wrong, taken literally - at that time this was the case.
Of course someone could argue, like he did & praps still does himself, that he'd been doing fibromites a service, giving some of us security (via the test) and hope (via the miracle cure of the BCG vaccine), albeit in a Macchiavellian, snake oil merchant way...
I haven't read from the Gillis (ex-?)disciples I'd read yet, how disappointed they are, whether they still defend/cover/go to bat for him.
Maybe you're the first, and you're obviously not batting for him...
 
I was diagnosed with FMS over 20 years ago by a rheumatologist. I have BEEN FIGHTING with all of the classic symptoms throughout these years. Today I received my results from EpicGenetics with a score of 38.0 - NEGATIVE! You can imagine the fright I feel, so out of control of my health! What should/can I do now?? I will be 78 in February, I want to know how to get better, and what is wrong with me?
 
Hello Carol, and welcome to our very supportive forum! Good idea to reach out in this situation.
Oh dear, how perturbing your situation would seem to be! So long on the FM-track, and a result which maybe was meant to dispel doubts rather than confirm them, which is now de-tract-ing you.
But: You have been diagnosed and you yourself are sure your symptoms have always been the classic ones.
So safe that sounds that I'm wondering why you felt you needed this test at all.
And landing on Alan's thread means you probably know that the Fm/a test itself is not ... necessarily.... a scandal, like the title suggests, it's more the fact that Gillis pretended to keep up his idea of a BCG vaccine being tested as a cure, to reinforce the legitimacy of his test. That might be why you haven't just bitterly retorted that the negative result is obviously wrong, like Gillis.

Well... Your Fm/a-test has only measured that the amount of cytokines and chemokines in your blood are different to the levels Gillis expects for FM. Meaning you might still have a different subtype of FM, so still have FM, like you and the rheumatologist have thought all along. Also: All fibro-researchers see cytokines etc. at most as a possible biomarker, their levels don't even necessarily support the autoimmune hypothesis, aside from the other big hypotheses (Central Sensitization, Mast Cells & ATP).
Remember Gillis is not a researcher, he is an "entrepreneur". I'm still not even happy with the snake oil name "EpicGenetics"....

So you have many reasons to consider the test as wrong. Wrong for you, or even wrong for fibro generally.
And even if you can't "let go" (yet?) - your mode of action can be the same. If you as you say have the classic symptoms of fibro, whether or not you can see yourself as truly fibromite or not: You are very welcome with all that here, to read & follow @sunkacola's advice-post and all the other good ideas here on the forum, ask detailed questions, moan & vent, whatever. ("You aren't an imposter, don't let Gillis make you believe that").

So you could say nothing (much?) has changed, you're still on track! 🤗
 
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