New Fibromyalgia Blood Test is 99% Accurate

A new blood test for fibromyalgia is more accurate than previously thought and will not confuse the chronic pain disorder with other diseases such as lupus and rheumatoid arthritis, according to the physician who developed the test.

“We have not seen any overlap between the biomarkers in fibromyalgia and the immune system patterns of patients with rheumatoid arthritis or lupus. That really takes the air out of the sails of any naysayers that are out there,” said Bruce Gillis, MD, founder and CEO of EpicGenetics, a bioresearch company based in Santa Monica, CA.

Image courtesy of EpicGenetics

Image courtesy of EpicGenetics

EpicGenetics introduced the FM test in March, calling it the first definitive blood test for fibromyalgia, a poorly understood disorder that is characterized by deep tissue pain, fatigue, headaches, depression and lack of sleep. Test results are usually available in about a week.

The FM test looks for protein molecules in the blood called chemokines and cytokines, which are produced by white blood cells. Fibromyalgia patients have fewer chemokines and cytokines in their blood, according to Gillis, and as a result have weaker immune systems than normal patients.

Critics have said the same immune system biomarkers can be found in people with other illnesses, such as rheumatoid arthritis, making the blood test unreliable.

However, in new research involving over 300 patients with either fibromyalgia, lupus or rheumatoid arthritis, Gillis said only fibromyalgia patients were found to have below normal levels of chemokines and cytokines.

“They do not have the same immune system biomarkers. Not at all,” Gillis told National Pain Report. “The patterns we see in lupus and rheumatoid arthritis, we see this inflammatory process. But we don’t see the same biomarkers in fibromyalgia.”

Gillis said the research is still being finalized and he hopes to have it published in a peer-reviewed medical journal in the next few months.

When the FM test was first introduced, EpicGenetics said it was 93% accurate in diagnosing fibromyalgia. Gillis says the sensitivity of the test is now estimated at 99%, which is about the same as the test used to diagnose HIV.

Dr. Bruce Gillis

Dr. Bruce Gillis

The National Institutes of Health estimates that 5 million Americans suffer from fibromyalgia – and millions more around the world – but so far only a few hundred have signed up to take the FM test. Gillis says the $744 cost, which is generally not covered by health insurance, could be a barrier to many patients.

“A lot of people who’ve been diagnosed with fibromyalgia don’t work. And because they don’t work they don’t have the wherewithal to pay for a test. They don’t have health insurance,” said Gillis, adding that some insurers have paid for the test in worker compensation cases.

“When we first started, it cost us $12,500 to analyze a patient’s immune system parameters. So we’ve brought the price way, way down.”

Gillis hopes to bring the price of the FM test down further by licensing other labs to draw the blood and ship blood samples to EpicGenetics.

Regardless of the cost, fibromyalgia patients are excited that a simple test may finally be available to diagnose a disorder that their doctors and loved ones are often skeptical of. It takes three to five years for the average fibromyalgia patient to be diagnosed.

“Having a reliable blood marker will do more than validate us as patients. It will open a field of dreams and possibilities for researchers compassionate about defining this horrible disorder,” said Celeste Cooper, a fibromyalgia sufferer and patient advocate.

“Once we have a biological test, we will know that study participants do indeed have fibromyalgia. There will be no skewed results, and the talk of psychological illness will be in our review mirror.  This is a savory thought.”

Image courtesy of EpicGenetics.

Image courtesy of EpicGenetics.

In recent months, there have been several potential breakthroughs in fibromyalgia research.

Researchers at Ohio State are in the initial stages of developing another type of blood test for fibromyalgia. Using a high powered infrared microscope, they’ve identified a pattern of molecules in the blood that appears to be unique to fibromyalgia patients.

Another team of researchers in upstate New York has found that fibromyalgia patients have excess sensory nerve fibers in the blood vessels of their hands, which may disrupt the flow of blood throughout the body.

“In less than six months we have two studies reporting on successful analysis of fibromyalgia using blood markers.  It appears to now enter a realm way beyond more than a debate,” says Cooper.

“It is a win for the scientific community and a win for the patient. I doubt this is the last. Expect more research, because the race is on and what a glorious race it will be for those of us who live with fibromyalgia every single day.”

Research could also lead to the discovery of a genetic marker for fibromyalgia – a gene that makes certain people more likely to develop the disorder.

EpicGenetics is saving many of the blood samples it gets from patients who take the FM test, in the hope of someday having them analyzed for RiboNucleicAcid (RNA), molecules involved in the synthesis of proteins and the transmission of genetic information.

“The more patients we have, the more RNA we can look at for gene markers. If we can get thousands and thousands of specimens, it will be that much easier to find the specific gene markers,” says Gillis.

Tags: , ,

58 Responses

  1. Ann says:

    I am a longtime sufferer of severe fibromyalgia. I spend most of my days totally bedridden, and I’m only 43. It has robbed me of almost everything, including ability to have children, which my husband and I really wanted! My muscles feel like rocks, and my upper spine and neck has arthritis. My back feels unstable and locks out of place due to the arthritis. My family tries to understand, but they really don’t, and I have no real familial support, save my husband. This disease, if I may call it that, is relentless and sinister, and I want to be able to look forward to some kind of life before I die.
    Please find a cure!!!!!

  2. T. Campbell says:

    I’ve been reading all these posts and people are often missing the real point. If they find these markers are the link among fibro patients, then they have a clue about where to look for the cause of fibro. They can then ask, is this cause or affect and what would cause this change? So, yes, having a definitive test would be great for us the patient, but it’s more important in the search for the cause. I’m personally excited about every little clue they find hoping it will be the one that solves the mystery. I have no problem with someone making money if it keeps the research going.

  3. John Quintner, Physician in Pain Medicine says:

    @ Black Belt w/Fibro. You may have noticed that the Epicgenetics website pronouncements are not necessarily in accord with Dr Gillis’ claims (see above) that they are offering the “First definitive blood test for Fibromyalgia” and that “Only Fibromyalgia patients were found to have below normal levels of cytokines and chemokines”.

    Based upon their own research findings, a score of 50 and above does not necessarily exclude either normality or the presence of a rheumatic disease (RA or SLE). Just how definitive is their test?

    Nonetheless, on the Epicgenetics website readers are informed: “Those who have previously been diagnosed with FM may want to have the test because – until you have the test (in italics) – you cannot be sure that your diagnosis has been accurately confirmed.” Sounds to me like a circular argument.

    Then follows this extraordinary assertion: ” … once a baseline level of FM activity has been achieved via your test score, you and your doctor can monitor the effectiveness of your treatment via objective parameters – hence you will know whether you are improving due to that therapy or not versus just feeling better because of a placebo effect.” There is no published research to back this up! Wishful thinking, perhaps?

    Finally, we read “One may also want to consider having the test to potentially eliminate other diagnoses – like depression – being made incorrectly.”Again, there is no scientific evidence to support this statement.

    You can see why I remain so skeptical of Dr Gillis’ published research.

  4. Black Belt w/Fibro says:

    As you said John, the abstract you are referring to is not the blood test referenced in this article. BECAUSE you continue to attempt to distract readers here I have to wonder if it is because your work has not been published on this website.

  5. John Quintner, Rheumatologist says:

    @ Black belt w/Fibro. I have indeed read the recent abstract, which is available on line, as are the slides that were presented at the ACR meeting last month. All authors (including Professor Wallace) declared that they are associated with Epicgenetics.

    It appears from their results that a person could test positive for Fibromyalgia but not have the condition and be in excellent health.

    Furthermore, it appears that people being treated for SLE or RA can also be diagnosed with Fibromyalgia solely on the basis of their test results.

    Of course this flies in the face of the pronouncement by Dr Gillis that “We have not seen any overlap between the biomarkers in Fibromyalgia and the immune system patterns of patients with rheumatoid arthritis or lupus.”

  6. Black Belt w/Fibro says:

    John,
    My understanding is your are not referring to Gillis’ findings in the in Arthritis & Rheumatism, Volume 65, October 2013 Abstract Supplement, rather, you are referring to the findings from another study; a study you believe may have been impacted by immuno-modulators, such as corticosteroids.

    Because this was a different study and not Dr. Gillis’ study it doesn’t disprove anything. If nothing else, it probably will support Gillis’ results in the end – as his work will most likely support yours.

  7. John Quintner, Physician in Pain Medicine says:

    @ Chelly. Yes, I am talking about the very same (Professor) Frederick Wolfe. Please read my post below of November 8.

    For the record, in the 1990s Professor Milton Cohen and I were very critical of the ACR 1990 Criteria for the Classification of Fibromyalgia, but our warnings about its future status as a discrete diagnosable condition were almost completely ignored.

    We steadfastly affirmed the reality of the symptoms that were gathered together under the banner of FM but have long argued that for a number of reasons that the FM ACR construct was a bogus one.

    Now the “chickens have come home to roost,” With the removal (in 2000) of the tender point count criterion (11 or more of 18 possible tender points), patients with the FM label were left to sit somewhere along a spectrum of “polysymptomatic distress.”

    I dare say most of them will find this situation unsatisfactory. This is where I disagree with Professor Wolfe, as these patients can so readily fall prey to the outdated body/mind dualistic thinking which is so rampant in our societies.

    In 2011, along with Dr Pamela Lyon, we offered a novel hypothesis (explanatory model) that does have the virtue of being testable in a scientific context. It also transcends the body/mind binary that the original proponents of the ACR 1990 Criteria were unsuccessful in overcoming.

    Whether or not our hypothesis will prove useful in furthering understanding in this complex area of pain medicine, remains to be seen.

    References:

    Cohen ML, Quintner JL. Fibromyalgia syndrome, a problem of tautology. Lancet 1993; 342: 906-909.

    Quintner JL. Cohen ML. Fibromyalgia falls foul of a fallacy. Lancet 1999; 353: 1092-1094.

    Lyon P, Cohen ML, Quintner JL. An evolutionary stress-response hypothesis for chronic widespread pain (Fibromyalgia Syndrome). Pain Medicine 2011; 12: 1167-1178.

  8. Chelly Smith says:

    are you talking abut Dr. Fredrick Wolfe> he dx w FMS back in the 90′s , then when i went in for an appt. later, he didnt treat fms patients anymore…that he didnt believe in it now!?? and he wrote the pamphlet and toured teaching about it? whatever!

  9. John Quintner, Physician in Pain Medicine says:

    @ Black Belt w/Fibro. In answer to your final question – are your theories and Gillis’ results mutually exclusive? – I would say NO.

    Having looked at the results (in Arthritis & Rheumatism, Volume 65, October 2013 Abstract Supplement) may I point out that 32% of SLE and 24% of RA patients tested were judged by their FM profile test results to be POSITIVE for FM. The researchers speculated that this unexpected finding might be explained by the treatment being administered to the SLE and RA patients (e.g. immuno-modulators, such as corticosteroids). In the healthy control group 11% tested positive for FM. No explanation for this finding was offered in the Abstract.

    I am not qualified to comment on how they arrived at a “positive FM profile score” using a Logistic Regression analysis to obtain a statistically determined weighting for each cytokine and chemokine. However, a positive FM profile score was said to be 51 and above, based on a scale of 0-100.

    They concluded that their test “is relatively sensitive and specific for FM compared to SLE, RA, and normals” and that “it remains unclear if these differences are directly related to the pathogenesis of FM.”

    I will now await the (promised) publication of this research in a peer-reviewed journal.

  10. Black Belt w/Fibro says:

    @John Quinter I took a look at your paper on Pain Australia. Because fibromyalgia affects the entire body, isn’t it entirely possible your work and Gillis’ work are NOT mutually exclusive? Doctors are taught to compartmentalize everything – their treatment, their research, and their practice areas. As a result, it has to be natural to apply this thinking to diagnosis and treatment.

    I believe junk science casts doubt on Gillis’ test the same way you were – implying Gillis’ did not compare his results to rheumatoid and lupus patients – which you now know he did. Plus, I attempted to post on that website and they would not approve my comment. Yet another reason to be concerned about them.

    John, are your theories and Gillis’ results mutually exclusive?

  11. John Quintner, Rheumatologist says:

    @ Black Belt w/Fibro. You may be right but unless Professor Fred Wolfe has altered his opinion of the test and its inventor (“Junk Science and Junk Ethics”) and Professor Dan Wallace has changed his mind (“useful in less than 1% of patients”) I must remain extremely sceptical of its value outside the market place.

  12. Black Belt w/Fibro says:

    This blood test is a wonderful advancement in the study of fibromyalgia! The clear protein deficiency markers (not shown in rheumatoid arthritis patients, lupus patients, or normal patients) indicate FM is an immunological disorder.

    This test will save our new healthcare system millions of dollars as well as save FM patients from needless suffering, pointless surgeries, and misdiagnosis.

    “Much to our surprise we found an incredible set of changes in immune system proteins called chemokines and cytokines in the patients with Fibromyalgia. We were absolutely literally blown away when we detected these changes. …. I can tell you unequivocally, based upon this research that these biomarkers are not seen in lupus or in rheumatoid arthritis. They are unique to Fibromyalgia.” — From Fibromyalgia diagnosis: an interview with Dr. Bruce Gillis, CEO of EpicGenetics

    To read the interview go to : http://www.news-medical.net/news/20130723/Fibromyalgia-diagnosis-an-interview-with-Dr-Bruce-Gillis-CEO-of-EpicGenetics.aspx

  13. John Quintner, Rheumatologist says:

    @ Black Belt w/Fibro. Alas, I have no website nor do I have any commercial interests to declare. For your information, Painaustralia is the website of Australia’s peak body which represents professional and voluntary organizations working together to reduce the burden of pain sufferers in this country.

  14. Black Belt w/Fibro says:

    It appears this article has a troll. He says he is a physician and he attempts – comment after comment – to redirect the readers to his research website all the while refuting the facts presented on this one.

    Let’s face it. Anyone who is currently earning thousands if not millions in research dollars to find FM markers is going to be OUT of a JOB. This is why they so vehemently attempt to discredit the facts here.

    Then, there are the physicians who have mistreated, refused to treat, and abandoned patients as well as family members who have a FM diagnosis. The truth of this blood test questions their moral and ethical standing in every community.

    The markers are clear. Gillis’ research shows there is NO
    “overlap between the biomarkers in fibromyalgia and the immune system patterns of patients with rheumatoid arthritis or lupus.”

    To all the physicians who have failed us – get on board or lose what little credibility you have left. And – to the researchers who want the money pipeline to keep flowing in their direction – your best bet is to work with Gillis in finding a genetic marker and a cure.

    This blood test has proven FM is an autoimmune disorder of some kind. Any physician who publicly refuses to deal with these fact has a self-serving interest at heart and must be patently disregarded.

  15. John Quintner, Physician in Pain Medicine says:

    @ Black Belt w/Fibro. The main point for me is that Dr Gillis and his team have a long way to go to convince the scientific community they have in fact found “true identifying markers” for this condition, which you believe is a chronic progressive auto-immune disease. I hope your hunch turns out to be correct.

    For what it is worth, mine is that we are looking at undampened activation of evolutionarily conserved stress response systems that are usually under tight control. This hypothesis has been published and can be downloaded from the website of Painaustralia. Go to Health Professionals and then to Research (from Australia).

  16. Black Belt w/Fibro says:

    Data to consider as all of you move forward researching:

    1. I believe fibromyalgia is a chronic, progressive autoimmune disease. Take a look at my family history. Mother and sister with M.S. I and my 22 year old daughter have fibromyalgia. Neice and nephew both have rare autoimmune diseases. Allergies and asthma run rampant in my family. All adults in my family are college educated or above, most with gifted or above IQ’s.

    2. I believe I was born with fibromyalgia. Sleep disorder, pain, underlying anxiety and low grade depression began in early adolescence. I always thought the pain was a result of athletics – lol. I covered the anxiety and depression up. They were my secret.

    3. Married, had a daughter, was a full-time teacher, moved to part time. Was sick 1/2 the year – caught every virus. Suffered from stabbing pain in the neck and back. Felt chronically tired (is tired even the right word?) except when I would exercise. Pain, fatique, anxiety, depression would briefly subside when I worked out then immediately return. Studied several martial arts. Maintained a smile on my face. Switched to working part-time.

    4. Mid life – working on one of my black belts – diagnosed with osteo arthritis of the spine. About 2 years later began to have problems sitting down – by this time I owned a small business and worked from home so I could get enough sleep if I needed it. Set up a stand up desk because it hurt too much to sit. I would see 80 year old’s sitting in a restaurant and think, “doesn’t it hurt them to sit??” Pain and stiffness increased year by year. Suffered from horrific bladder infections plus caught every virus. Exercise no longer temporarily relieved my symptoms. Went to a back surgeon who told me I didn’t need surgery and sent me to a rheumatologist. Officially diagnosed – treated me with trazadone and gabapentin. I work part of the day about half the year and most of the day the other half. My sleep disorder is somewhat relieved and the pain is reduced by 1/2 – 2/3′ds depending on the day. I still study martial arts once a week as well as walk, do yoga, and strength train 3 times a week. I miss running very very much but just can’t do it without pain.

    Fibromyalgia is progressive and debilitating. Sadly, many beautiful, intelligent women have suffered from this overwhelming disease. The fact that Dr. Gillis has found true identifying markers is a great start.

    To the naysayers out there – do you have a better test? A cure? If not, then make constructive use of your energy and do whatever you can to support those who are seeking to identify and solve this stealer of lives.

    Thousands if not millions of smart, motivated women to work without the burden of chronic sickness, pain, exhaustion, depression, and anxiety! Imagine how this would benefit families and our economy. No more SSI! I believe I speak for all sufferers when I say – We want to be productive! We want to feel as close to normal as possible! Help us achieve these goals.

  17. Angela Burkett says:

    I have fibromyalgia and i hate every day of my life if there is any help out there i need it bad. I will even be a genie pig for testing. Please Help November 15- 2013

  18. John Quintner, Rheumatologist says:

    @ Debra. Please see my comment of the first of August. The other issues you raise are not really relevant to a discussion of the scientific merits of the “test” bring marketed by Dr Gillis’ company.

    But as you may not know, I too have been critical of my own discipline of rheumatology in relation to its approaches to the problem of Fibromyalgia. Professor Wolfe and I do not agree on some very basic issues. If you follow the threads on his blog, Fibromyalgia Perplex, you will readily see our differences of opinion.

  19. Debra says:

    John Quinter and Fred Wolfe, do you have something better to offer Fibromyalgia sufferers? I say, give the test a chance to prove itself. It is always easy to be a doubter. I actually have doubts about rheumatologists, from personal experience.

  20. Kenneth Davies says:

    I am a consultant clinical physiologist who was involved in investigating myalgic encephalomyelitis (ME) ans post viral syndrome (PVS) eventually we got these chronic fatigue syndromes recognised as medical conditions as did my predecessors with polio myelitis in the late 1940′s. There area number of issues with Gillis stating the FM test is reliable (i) the sample is too small (ii) there are no demographics (iii) to say in such a relatively small pool of data there is 99% repeatability after the initial was lower without saying what was the reason for the change in the statistical analysis (iv) what types of FM took part in the study. Gillis may have a difficult issue in having his test data published in a high impact peer review medical journal prior to publishing in the public domain etc. Should Gillis work prove not to be as reliable as stated in the future then this will be a great disappointment to sufferers because it will bring greater controversy to the whole topic. The adage here is ‘one swallow does not make a Summer’ especially at $750 a pop.

  21. Mary Ellen says:

    As a trained facilitator for the local American Chronic Pain Association
    http://Www.theacpa.org
    I know too many men and women who lost their
    Marriage as well as their homes, jobs, and health with the fibromyalgia
    Diagnosis. Me too. A large part of it was the perception
    From docs and spouses and friends and family that you are crazy
    And trying to get attention by pretending to be ill. We were told we were
    Crazy. Then they left us and shunned us for their perception of the
    Right to live their lives away from us.
    I cried when I read this article. Proof we are not crazy and can demand
    The respect that is given to persons living with real pain and diseases.
    We now join the ranks of legitimate disease sufferers. No pity
    We want treatment!

  22. laura heaton says:

    I would like to say that we need to find the cause of FMS before we can find a cure. I have had FMS for many years now and decided to stop fighting others to believe in FMS. I give them the facts that I know to be true and leave them to their own thoughts. I recently had to change doctors and for my first appointment I treated it like a job interview, except the doctor was applying for the job. She found it refreshing. anyways I want a cure. I need a cure! Gentle hugs to all the fibros out there.

  23. Jennifer says:

    To say that there is no such thing as autoimmune diseases is extremely irresponsible and completely wrong. Type 1 Diabetes is autoimmune. Celiac disease is autoimmune. There are several different autoimmune diseases. The person who said that is obviously quite ignorant of medical conditions.

  24. Carol Ireland says:

    For Lesley King. My Physical Therapist uses a book by this lady Doctor & another by a co-author (also a Doctor)….both sufferers of Fibromyalgia. He says they were so ill they were down to treating one patient a day at one stage & sometimes they could only write a line at a time for their book. Blessings, Carol Ireland. The Fibromyalgia advocate: getting the support you need to cope with Fibromyalgia and Myofascial pain syndrome

    Front Cover
    Devin J. Starlanyl, Devin Starlanyl
    New Harbinger Publications, 1 Nov 1998 – Family & Relationships – 377 pages
    9 Reviews

    The welcome successor to “Fibromyalgia and Chronic Myofascial Pain Syndrome,” this book offers readers a wealth of practical suggestions for dealing with an often skeptical medical establishment and getting the help and support they need. In four parts (Managing Your Health Care Team, Fighting for Your Rights, Dealing with Your World, Ammunition), Dr. Devin Starlanyl shows patients how to identify sources of help and assemble a functional healthcare team; explains how to maximize visits to professional caretakers; offers advice on dealing with the legal aspects of the healthcare system; and finds the best approaches to educate family and friends about the condition and enlist their help and support.
    More »

    Fibromyalgia and Chronic Myofascial Pain: A Survival Manual (2nd …
    http://www.amazon.com › … › Chronic Fatigue Syndrome & Fibromyalgia‎
    The management techniques found in Fibromyalgia and Chronic Myofascial … Mary Ellen Copeland, M.S., M.A., is coauthor of the first edition of … I was loaned a copy of this book a year ago by a friend (and fellow FMS/MPS … By David Bonro … “Dr. Starlanyl’s” expertise and how it’s so nice that a Medical Doctor has FMS …

  25. FMS = Lyme disease.

    Medicine likes to label things like POTS (Postural Tachycardia). POTS is caused by Lyme, but it seems like no one wants to go further to the actual cause. Autonomic Dysfunction is yet another one.

    Lupus=Lyme. ANA test is non-specific. We see pos. ANA in Lyme all the time. Doesn’t mean you have Lupus.

    Medicine needs to stop making labels for these so called Auto Immune disorders. The truth is, there arn’t any. The body doesn’t attack itself. Have you ever heard of the word Homeostasis ? Everything has a cause, it’s usually Bacterial, Viral, or Parasitic.

    Don’t believe me, take some Banderol and Samento. See if you have a Die Off. I guarantee you will then look towards Lyme and Co-infections.

  26. Carol Lloyd says:

    I am 42 yrs. old, I was diagnosed with Fibromyalgia when I
    Was 23 yrs old. It started in my upper arms. I told my Dr. I think I have arthritis. She did blood work and sent me to a rheumatologist. My first visit, I told him all that going on and he gave me the point test. Then he said the words I’ll never forget..”You have Fibromyalgia”. I don’t have money to take the test but I would be willing to help out in any way that I can. You can contact me via email if there is something I can do to help. People say they don’t need a test to know they have it…and I’m still hoping it’s something else..not fibromyalgia..something they can fix.

  27. Ursula Chokker says:

    I think it’s great that they are working on this and I’m for one am very greatful. I have had Fibro for years now and have watched everyone struggle to understand it. Without tests like this we wouldn’t go forward. I don’t know much about the chemistry side of things and the possibility of this test working or not, but I do know every no is a step closer to a yes. Thank you guys, you are doing great!

  28. Priscilla N. says:

    If someone has fibro, with low cytokines, and Lyme disease, with high cytokines, how is the test going to be accurate?

  29. Debs says:

    In my opinion, anyone who has been diagnosed with any of the ” invisible illnesses” should first obtain copies of their medical records, and check to see if they have ever been prescribed fluoroquinolone antibiotics ( Cipro, Levaquin, Norfloxacin, Avelox, before going through with this test.
    There are thousands of people walking around ( if they still can ) with these diagnoses that have actually really been poisoned by these “antibiotics” ( for this substitute, synthetic, neurotoxic, chemotherapeutic agents) straight from hell.

    I am speaking from first hand experience, having been Formally ( mis) diagnosed with M.E/CFS years ago, only to find out when I received my medical records that I had instead, been what is commonly known as “floxed”, this condition is also known as fluoroquinolone toxicity.

    After spending much time in various forums/groups, over time, connected with this condition,and doing much research of my own, I can categorically state that the amount of people joining/passing through these groups who have a diagnosis of either Fibromyalgia, M.E, CFS, is vast, way over represented, too many to be coincidence, and we all have the same sorry story to tell

    I am sure there will people reading this, who think I am completely on the wrong track, or have never heard about this before, to you I say : Whether you agree with me or not, google fluoroquinolone toxicity, at least look into this possibility, if only for curiosities sake. If they are not there at least you can rule this out, Obtain copies of your medical records, more often than not, you will find them. Finally remember their names. If you are ever told you need them, unless you are going to die without them, it means your Dr does not have a clue how dangerous they are. say no, refuse them, to do so may one day literally save your life.

  30. Jennifer says:

    There’s a test for FM. So what! My doctors have already confirmed I have Fibro but the only thing they want to do is prescribe Cymbalta and Lyrica which are both ineffective and Lyrica has HORRIBLE side effects. Concentrate on finding a cure or effective treatment that gives us our lives back or at least makes living bearable!

  31. Terry Aston says:

    Fibro is nothing but nerve damage caused by toxins…such as pesticides, GMO’s ….medicines..from Big Pharam that cause Fibro. Fluroqinolone antibiotics cause Fibro and so do a whole lot of other drugs….GOD nerve intended our bodies to carry such a burden of toxins.

    They have a pill for everything..talk to people who never go to the doctors… they feel good…Talk to people who go to doctors and…. they feel like crap !

  32. Lesley King says:

    Seems as if voiced complaints of pain are basically ignored by the medical field. Basically your left to feel like “It can’t be a 9-10 on the pain scale all the time.” Although pain tolerance is what it is…..If I say its a 9, then it’s a 9 !!!! If a test actually exists, then it only seems advantageous to all Fibromyalgia sufferers to be tested. Shamefully, that may be the only way our signs and symptoms may be believed. Among all the other symptoms that come along with this horrible, debilitating, diagnosis, I am often left feeling like I’m just wasting my time. Ever felt like you had one foot nailed to the floor and your just going around in circles? Like other “new” treatments and medications, how long will it actually be before we can all afford to have testing done? I would certainly volunteer for any drug, lab test research being conducted. I’m sure that I’m not alone !!! I just can’t believe that most Dr’s think that it’s all in our head. Like we just wake up one morning, put our feet on the floor and decide that insomnia, headaches, brain fog, poor sleep,fatigue and pain is not real, It’s just in my head !! I would actually like to know if there is a MD that actually has Firomyalgia, and how they continue to function at normal capacity. The disability route basically say’s “your education level is high enough for you to do sedentary work, paying no attention to the fact that you actually feel like you have the flu every day. Or SSI judge say’s “well, you don’t look sick. ” My response should have been ” well you don’t look like most assholes !” Your apparently judged by your looks and the last time I checked, people who have 99% blockage in an artery don’t look sick either. Migraine’s, pulled muscles, stomach pain, stress and other diagnosis TNTC do actually exist without someone else’s ability to judge just by looking at someone. If that were the case, we’d all be Dr’s !!!! and the SSI judges would not need any medical reports at all. Ignoring Fibromyalgia should be negligence, just like it would be if you had any other illness/diagnosis ignored and left untreated by the medical community.

  33. Lori says:

    $744.00?!!! 1 stress test $1,100.00, 1 blood test for my vitamin D level $200.00. Thats ONLY 2 of the MANY test I had done which gets this test to about 1/2 the price. The thing I find more important is that it took 10 different doctors (last being Mayo Clinic) in over 10 years & every diet under the sun to get the answers as to what is wrong….but worst of all, to not be believed & treated as a “faker” while I was just getting sicker, and thats from ‘loved ones’. This test would have changed my life had it been around to spare me from the hell that this has put me through. But on the up side, I sure have got rid of the toxic people in my life!

  34. Taniko says:

    I was a healthy, active 29 yr old and overnight my life changed due to an illness which mayo clinic couldn’t even identify and now has turned I to fibromyalgia/chronic fatigue syndrome. Numerous tests and doctors and even the Mayo clinic the best doctors determined my diagnosis which formed from an illness which was thought to be meningitis. A blood test won’t take the past three years of severe pain, unable to walk at times, having to use a wheel chair or walker while trying to maintain a somewhat normal lifestyle for my now 6 yr old son whom has has to see his mom in the hospital numerous times, in pain, unable to play like I used to before my condition. Instead of doctors prescribing narcotics and multiple medications that are going to eventually destroy our liver and or some get addicted why not put the energy and studies into a medication to help cure fibromyalgia. How is paying over $700 going to ease my pain when in already head over heels in medical bills. If the concern is people getting misdiagnosed that is that individuals lack of research of doctors and going to the top as I did to the mayo clinic. I’m not rich and still paying years later the medical bill but I exhausted every outlet and doctors. Confirming in writing from a blood teat pitting ne more in debt isn’t going to change my condition or pain. Educating more doctors and physical therapist how to treat patients with fibromyalgia would benefit us more and actually help us.

  35. Charles Wersal says:

    My wife was diagnosed wit Fibro years ago. We are sure she has it and don’t feel a need for the test. Come up with a cure or decent treatment to relieve the pain and then you will have a whistle to blow.

  36. Carol says:

    I know I have it, I don’t need proof of that, I need a cure, so get researching that while I’m still here…………please

  37. Dawn Nulph says:

    Its a small price to pay if this test can prove to doctors and people around the world that fibro is real..The pain is real…Our stories are real..And maybe behind this there will a cure down the road..Of course its skeptical but I’m all for it..I have suffered and been looked at like I’m crazy..Would be a joy to throw this in the doctors field that research needs to be taking seriously as this disease has taken a toll on so many life’s…Let’s not be so quick to judge until this has been fully evaluated with promising statistics. .This could be the beginning of something wonderful or just another dead end..I will be praying for all of us who has suffered mentally, physically, and financially…

  38. margie says:

    what about us fibros that can not afford the 750.00 test what good will it do us?

  39. Joel (Jody) P. Dietz Jr. says:

    I would like to thank you all for your input/responses to this article.
    At least there is forward momentum regarding Fibromyalgia and it diagnosis. It seems I have a lot to investigate here.

  40. John Quintner, Rheumatologist says:

    @ Brenda. It is all very well to have a label (= a diagnosis) but are you any the wiser now that your doctor has decided to award it? Most people tend to go around in circles when they try to make sense of “Fibromyalgia”. They soon discover that the medical landscape of “chronic pain” is characterized by “linguistic bewilderment”. How do you make sense of the diagnosis? I know this sounds like me being difficult but there is a lot riding on the answer to this question.

  41. Brenda says:

    It took me 20 years before a Doc would say I had Fibro it was always something else.

  42. John Quintner, Rheumatologist says:

    @ Ros. To the best of my knowledge, it is not an established test for Fibromyalgia, although it has been heavily marketed on the basis that it is such a test. I agree that it may be a “big win” for somebody but not necessarily for people in pain. I suggest you wait until Dr Gillis publishes the results of his latest research in a peer-reviewed medical journal.

    What we do need is a biological marker for activation of stress/sickness response systems. We have hypothesized that the clinical phenomena known as Fibromyalgia could represent undampened activation of stress response systems. This would imply that such activated systems are no longer able to turn themselves off.

  43. Ros says:

    I have had FM since the end of 2006, diagnosed 2008. This test, if it turns out to be as reliable as they say, should be shared with the world. America isn’t the world!! Why not share the testing process with the world and the price will drop to almost nothing, as any decent lab could perform it.

    I also wonder why almost everyone commenting here is so skeptical? ? What a revolution for fibro, people!! It will rule out drug seekers using the condition to get narcotics and it will show up anyone who says its all in our heads. It also has the potential to save lives. People being misdiagnosed with FM when it could be a life threatening condition, shouldn’t happen again . Or the people that get diagnosed with FM, then any and every complaint is put down to fibro, the docs can run bloods as they love to do and it would be safe to assume that the blood markers would be worsened if the condition worsens, so if bloods stay the same, docs know to look for something else. I often wonder what people are afraid of? Is it you have just had enough of researchers saying things about FM one minute, then proving themselves wrong the next? Or are people afraid that their blood will show they don’t actually have fibro? Once its available in Australia, I’ll be lining up for it. Then any additional symptoms I develop, might not just get blamed on fibro!! Hopefully this is a big win for us!!

  44. Julie says:

    I beg your pardon… I was doing 15-20 hours per week of ballroom dancing in the year before my fibromyalgia diagnosis. I eat very healthy and at that time was in the best condition of my life. How could I not be with that kind of exercise? But the pain and fatigue forced me to quit dancing.

  45. Binder C. says:

    @ Forest. What about a positive test – decreased immune markers – in a healthy, active, stress-free six-year old child ?

  46. ver says:

    Are they sure these people they testet it on didn’t have EDS?

  47. John Quintner says:

    As a naysayer to Dr Gillis, I look forward to the publication, in a peer-reviewed journal, of data that would “take the wind out of my sails”. Until then, I must remain highly skeptical of the validity and usefulness of the test he is promoting.

  48. Cozette says:

    I too am waiting for some controlled data studies to be done.

  49. luz says:

    God has bren litening my pray. Finally at least soñé proof that we are not crazy, amen. Finalmente Dios escucho mis ruegos, finalmente pruebas de que no estamos locos. Amén.

  50. i wish I could get the test done having this and Raynauds so painful to walk and sleep….

  51. Shana C says:

    How wonderful, after four decades, there is the answer and hopefully I will stop being treated as a hypochondriac. So, at 67, how will this change my life?

  52. Becky K says:

    I broke out crying reading this. So many days every inch of my body hurts. It takes all I have in me to get up and go to work. I am unable to do anything outside work. I have been diagnoised by several doctors with Fibro. People around me act like it is something I am llnaking up, or all in my head. I have very little quality of life in my opinion. All I can do is work. I have started making making mistakes, and missing work.

  53. Nancy says:

    I have been diagnosed with not only Fibromyalgia, but also Psoriatic Arthritis, Rheumatoid Arthritis and Osteoarthritis.
    How will this test tell the difference, or rather will it be able to tell the difference?

    Like Susan Levy, I am a bit skeptical.
    I was diagnosed with Fibromyalgia in 1999. Things have changed so many times that it’s hard for me to believe that all of the sudden there’s a test. I read almost everything that comes out about it and participate in several groups. I don’t remember reading or hearing anything about a test being developed until the last 3-4 months.

  54. Kay Redmon says:

    Is this test as honest as EpicGenetics would like us to believe?? The cost of such a test is quite high & above the means of most sufferer’s as most haven’t worked in years due to the severity of this illness. It does put a doubt into the back of your mind…

  55. Forest S. says:

    I was wondering if someone might be willing to clarify whether the decreased immune response might be a result of a combination of stress, lack of exercise, and other factors that are present in FMS patients but not in healthy controls.

    Obviously, this depends on how much the immune response differs in FMS patients compared to the normal controls. Therefore, I’ve reproduced some data from tables 3 and 4 from the original published paper below:

    Column 1: Cytokine name
    Column 2: Mean Concentration in Unstimulated Controls
    Column 3: Mean Concentration in PHA Stimulated Controls
    Column 4: Mean Concentration in PHA Stimulated FMS Patients

    Table:
    MCP-1 299 3497 1968
    IL-5 2.6 47.7 7
    IL-6 215 2799 276
    IL-8 771 17456 5751
    IL-10 23 80 12
    IFN-γ 538 1516 569
    MIP-1α 33 1084 204
    MIP-1β 222 4413 2900

    As someone without medical training, I found the above numbers pretty stunning. Consider IL-6. It’s almost like the stimulation no longer has an effect. And IL-10…

    Could stress, lack of exercise, and other factors associated with FMS cause that level of decrease in cytokine production?

    I’ve read the original paper, the fmperplex post and all associated comments, and the article that Dr. Quintner linked to. They provided very valuable information.

    http://www.biomedcentral.com/1472-6890/12/25

  56. John Quintner says:

    @ Susan. Yes, I agree with you.

    My own assessment of “The FM Test” is posted on the website of Arthritis and Osteoporosis Western Australia – http://www.arthritiswa.org.au/news/view/fact-or-fiction-the-fm-test.html

    Needless to say, this opinion coincides with that of Professor Fred Wolfe.

  57. Susan Levy says:

    What about a control group? Did they test anyone without symptoms? They might have the same results without symptoms and so this test is worthless…..

  58. John Quintner, Rheumatologist says:

    I have said it before and will say it again – Let the buyer beware (Caveat emptor). Professor Fred Wolfe has used the terms Junk Science and Junk Ethics in relation to the research behind the “The FM Test” that is being so energetically marketed by EpicGenetics at $740 a pop. You can read all about it on his blog-site “Fibromyalgia Perplex”.

113 queries. 0.562 seconds.