• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Breakthrough Research Reveals Pathway of Fibromyalgia

Gijs

Senior Member
Messages
690
Posted: Thursday, April 18, 2013 7:44 am | Updated: 4:32 am, Fri Apr 19, 2013.
By NAPS,
North American Precis Syndicate

(NAPSI)—For decades, debate has raged over whether fibromyalgia is a real medical disease. Despite the fact that fibromyalgia affects more than 12.3 million people in the United States—comparable to the number of people affected by cancer—some clinicians believe fibromyalgia is nothing more than a “syndrome.” When patients complain of chronic pain, diffuse muscle and joint tenderness, depression, mental fog, digestive troubles, severe fatigue, insomnia and other unbearable symptoms, they’ve often been told the problem is “in their heads.”
Recently published breakthrough research conducted at the University of Illinois College of Medicine at Chicago should end the debate—and stigma faced by fibromyalgia patients—once and for all. These studies, comparing fibromyalgia patients to healthy people, confirm that fibromyalgia is an immune system disorder.

The identification of this immune system pathway was not only honored with the 2012 American Association for Clinical Chemistry’s “Outstanding Research in Clinical and Diagnostic Immunology” award; it has also led to the first objective test capable of making a diagnosis of fibromyalgia.
“What we discovered over years of research is that fibromyalgia patients have an abnormal immune system,” said Bruce S. Gillis, MD, MPH, lead researcher and founder of EpicGenetics. “These peer-reviewed results have finally been able to ‘tear back the curtain’ to reveal that fibromyalgia is an immune system dysregulation disease relating to the production of protein molecules called chemokines and cytokines by a certain type of white blood cell.”

On average, fibromyalgia patients spend 3-5 painful years seeking a diagnosis, and $4,800-$9,300 annually on associated medical costs. By comparison, The FM Test, which costs $744, is a quick, simple blood test that offers conclusive results, usually in a week or less—a fraction of the time and money currently spent by patients seeking a diagnosis.

Anyone with fibromyalgia symptoms can have his or her doctor order the test. Alternatively, patients may take a simple questionnaire at www.TheFMTest.com and utilize an FM Test physician to request a test. Those already diagnosed with fibromyalgia can take the test to confirm and establish a baseline that can be used to track treatment effectiveness.

“The FM Test represents an objective biomarker that will prove useful in the diagnosis of an enigmatic disease,” said Ernest Brahn, MD, professor of medicine, Division of Rheumatology, at the UCLA School of Medicine

http://www.exponent-telegram.com/on...cle_cb57f39b-f852-5367-88a1-ae786336cafd.html
 

clive powney

Senior Member
Messages
206
Location
coventry
this looks like great news - my wife has already printed this off and is taking it to her specialist appointment next week. Are there any pointers to any drugs that may be useful ??
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
This is really excellent news - Clive think the object of the research was just to find diagnostic markers which it looks like they've done. Fantastic really.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Unique immunologic patterns in fibromyalgia

Frederick G Behm1, Igor M Gavin2, Oleksiy Karpenko2, Valerie Lindgren1, Sujata Gaitonde1, Peter A Gashkoff1 and Bruce S Gillis1*

Abstract

Background

Fibromyalgia (FM) is a clinical syndrome characterized by chronic pain and allodynia. The diagnosis of FM has been one of exclusion as a test to confirm the diagnosis is lacking. Recent data highlight the role of the immune system in FM. Aberrant expressions of immune mediators, such as cytokines, have been linked to the pathogenesis and traits of FM. We therefore determined whether cytokine production by immune cells is altered in FM patients by comparing the cellular responses to mitogenic activators of stimulated blood mononuclear cells of a large number of patients with FM to those of healthy matched individuals.
Methods

Plasma and peripheral blood mononuclear cells (PBMC) were collected from 110 patients with the clinical diagnosis of FM and 91 healthy donors. Parallel samples of PBMC were cultured overnight in medium alone or in the presence of mitogenic activators; PHA or PMA in combination with ionomycin. The cytokine concentrations of IFN-γ, IL-5, IL-6, IL-8, IL-10, MIP-1β , MCP-1, and MIP1-α in plasma as well as in cultured supernatants were determined using a multiplex immunoassay using bead array technology.
Results

Cytokine levels of stimulated PBMC cultures of healthy control subjects were significantly increased as compared to matched non-stimulated PBMC cultures. In contrast, the concentrations of most cytokines were lower in stimulated samples from patients with FM compared to controls. The decreases of cytokine concentrations in patients samples ranged from 1.5-fold for MIP-1β to 10.2-fold for IL-6 in PHA challenges. In PMA challenges, we observed 1.8 to 4-fold decreases in the concentrations of cytokines in patient samples.
Conclusion

The cytokine responses to mitogenic activators of PBMC isolated from patients with FM were significantly lower than those of healthy individuals, implying that cell-mediated immunity is impaired in FM patients. This novel cytokine assay reveals unique and valuable immunologic traits, which, when combined with clinical patterns, can offer a diagnostic methodology in FM.


Greetings :) I can't comment on the actual test that is being marketed and that is I notice trademarked; but thought you might like to read the research behind it all at least.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
This idea of testing samples under stress in isolation is paying dividends. It worked in OI, it worked in FMS and I vaguely recall it was used somewhere else, though it might have been an early release of the FM data that I am misrecalling. Finding the cells, isolating them, then challenging them and comparing that to controls gives you an assay if there is a significant difference. This is really good news for many millions of FM patients, especially if they are being diagnosed under psychogenic diagnoses and need to fight it, or are struggling to be recognized for insurance or benefits.
 

clive powney

Senior Member
Messages
206
Location
coventry
This is really excellent news - Clive think the object of the research was just to find diagnostic markers which it looks like they've done. Fantastic really.
Hi maryb, I (hopefully)understand the overall outcome of this, but the missus hasnt had a proper diagnosis yet and the specialists keep changing their minds between FM , RA and AS. I also know from my experiences in the UK the NHS are very blinkered for some reason and many of the doctors seem to think they know everything in their field and become very arrogant and dismissive of cutting edge research from elsewhere. So it is an opportunity to maybe open at least one specialists eyes. He might at least look into it, I certainly would if I were in his position.
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
I'm not intending to dismissive but this reads to me more like an EpicGenetics press release.

Surely if a biomarker for fibromyalgia had been validated and accepted it would have been really big news given the 12 million Americans affected and the still commonly held opinion that its another 'medically unexplained' syndrome.

Unless I've missed the press coverage elsewhere?
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I'm not intending to dismissive but this reads to me more like an EpicGenetics press release.

Surely if a biomarker for fibromyalgia had been validated and accepted it would have been really big news given the 12 million Americans affected and the still commonly held opinion that its another 'medically unexplained' syndrome.

Unless I've missed the press coverage elsewhere?

Hence my 'no comment' about the 'test' itself, Marco. Who knows how effective it really is? There is little information about it or whether it has been validated independently. The research is interesting, but the market is overflowing it often seems with commercial tests. Then I am ever a cynical buggar :)
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
clive powney
I know the feeling Clive:( I hope he will look at it , anything that actually gets them to think is good.
I know the problem with the UK is you sometimes get to see an inexperienced doctor when you need to see a really experienced person, and then sometimes even the consultants are crap - luck of the draw. Arrogant and dismissive definitely.
I just dropped lucky in that I got a rheumatologist, he was old school - actually now retired - to confirm fibromyalgia, funnily enough I saw an orthopeodic surgeon recently who was looking at my back, bye the bye he said, obviously fibromyaligia too....
But to get 3 different diagnosis is hard on anyone - I mean what is so difficult??
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
Hence my 'no comment' about the 'test' itself, Marco. Who knows how effective it really is? There is little information about it or whether it has been validated independently. The research is interesting, but the market is overflowing it often seems with commercial tests. Then I am ever a cynical buggar :)

Not only am I also a cynical bugger - I'm also pragmatic enough to know that if I take an unvalidated (not to mention not FDA or NICE sanctioned) test result to a GP it'll be treated with the same respect as a Holland and Barrett food 'allergy' test.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
A UK GP would be hard pressed to even understand what this means. I've taken immune system results to GP's and even to consultants and they are so badly behind immune system advances that they were unable to read or appreciate what they were.

NHS labs just don't test for these things. I tried through my local PCT and the only immune function they could offer was a CD4 count to their HIV patients. That's in London where we have an abundence of hospitals.

<snip from article above>
Cytokine levels of stimulated PBMC cultures of healthy control subjects were significantly increased as compared to matched non-stimulated PBMC cultures. In contrast, the concentrations of most cytokines were lower in stimulated samples from patients with FM compared to controls. The decreases of cytokine concentrations in patients samples ranged from 1.5-fold for MIP-1β to 10.2-fold for IL-6 in PHA challenges. In PMA challenges, we observed 1.8 to 4-fold decreases in the concentrations of cytokines in patient samples.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
A UK GP would be hard pressed to even understand what this means. I've taken immune system results to GP's and even to consultants and they are so badly behind immune system advances that they were unable to read or appreciate what they were.

Doctors I have seen have often been unable to interpret the results even of tests they have ordered themselves. Then attempts to get copies of the results so that I can analyse them myself have been met with hostility, bewilderment and obstruction. I was even referred to a hospital's legal department when trying to obtain them!
 
Messages
15,786
Surely if a biomarker for fibromyalgia had been validated and accepted it would have been really big news given the 12 million Americans affected and the still commonly held opinion that its another 'medically unexplained' syndrome.
Yes, the biomarker claim sounds like a giant pile of BS. My guess is that someone ran a study testing a bunch of substances, and found some abnormalities for the FM patients. There are hundreds, if not thousands of studies which have done this for FM and ME/CFS.

But then some genius decided to call these abnormal results a biomarker, even though there's probably dozens of other studies which partially contradict the current results. And, of course, I doubt they bothered to see if the abnormal results they found in FM patients are similar to the abnormal results in any other diseases, meaning there's no guarantee that being positive for FM looks any different than being positive for RA, etc.

Useful research maybe, but they are grossly over-hyping it.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I'm not intending to dismissive but this reads to me more like an EpicGenetics press release.

Surely if a biomarker for fibromyalgia had been validated and accepted it would have been really big news given the 12 million Americans affected and the still commonly held opinion that its another 'medically unexplained' syndrome.

Unless I've missed the press coverage elsewhere?

FM thou has as poor of coverage as ME/CFS gets. Any big breakthrous could take a while before getting any media attention. Being new research thou.. its not going to be accepted etc for a while.
 

PhoenixDown

Senior Member
Messages
456
Location
UK
I agree with Marco in that it's difficult to get establishment to acknowledge the meaning and validity of these tests, and until we do, they may not be of much use. It depends on how supportive your family and friends are to begin with, they could either stand by you and accept that tests like these demonstrate objective abnormalities which require special consideration or they can side with the majority of the medical establishment (no matter how obviously flawed their logic is) and say it's a will power thing, part of the human condition, or entirely imaginary.
 

PhoenixDown

Senior Member
Messages
456
Location
UK
Just found this:

Interleukin-5 has long been associated with the cause of several allergic diseases including allergic rhinitis and asthma, wherein a large increase in the number of circulating, airway tissue, and induced sputum eosinophils have been observed.[7] Given the high concordance of eosinophils and, in particular, allergic asthma pathology, it has been widely speculated that eosinophils have an important role in the pathology of this disease

Interesting, IL-5 concentrations were shown to be decreased in Unique immunologic patterns in fibromyalgia. , but given some of my allergy symptoms one would think the opposite is true. So I'm quite curious now. It depends exactly where you find the cytokines I suppose.