There is a company called EpicGenetics in Los Angeles, CA they have developed a blood test to determine if you have Fibromyalgia. It’s call FM/a blood test. You need to either go their website or give them a call. (310)■■■■. They will take you insurance info to see if your insurance company will pay for it. They will ask you what medications you are on etc. I am going to take the test because if it comes back positive then I will be able to be in some of their clinical studies. Unfortunately, I had a steroid shot in August so now I have to wait till November to take the test. But if anyone is interested I would recommend you going for it.
I read about that on Facebook and just now checked out the website. Sounds promising. Unfortunately medicaid doesn’t cover the test and it is over $1000 for it, you can make payments though and since I am not working right now I would have to.
If you get into the study update us on how it is going.
Wow I guess this is not for my pockets.Lol
Medicare will cover it and some insurance. The doctor in charge has stated for years that he would start administering the trial vaccine as soon as the FDA approved it but he is not keeping his word. It was authorized in October 2018 and, with unknown dozens or hundreds of us who took the test waiting since 2012, Dr. Bruce Gillis stated that has decided “to wait a while before” starting. True compassion, now already six months, I could be dead before he goes ahead.
sounds like a scam to me. reputable docs and labs have come up with NO kinds of tests, yet i was diagnosed 40 years ago by what I told the doctor. If this place can get $1000 fromjust 50 people, that’s $50,000 – possibly more will fall for it and now Dr. Gillis is checking out a little grass hut in some foreign country. Glad I didn’t pay into it. I feel sad if everyone loses their money :=(
I had the blood test and tested high for fibromyalgia. My neighbor, who also had the blood test, received a letter from epicgenetics stating that they need more participants so that they can proceed with the second trial using the TB vaccine to enhance the patient’s immune system. I encourage people to check it out.
**Thanks for your post, helpful info and more recent than mine. Epicgenetics is his private company and he is financing this on his own. I’d like to think he just underestimated the number of fibies who could pay $1000. It is unusual to pay to be in a trial but there aren’t any grants I don’t think.
That said, we are all in pain and can’t wait six more years.
I took the test and came up with a 91/100 score for fibro (very high) I was disappointed with the letter that accompanied my test results. It said that they don’t have a diverse enough age group yet, nor enough men, to start the vaccine part of the trial. They have mainly women over 50, and want women as young as 18. I hope this isn’t a scam where Dr Gillis got a patent on the blood test and is making a ton of money, but never really plans to go any further. Many of his colleagues feel that the whole patent idea was a huge conflict of interest that he did not divulge in the beginning. I am still hopeful, but not as much.
It’s not necessarily a conflict. How could doing original research be a conflict? It is a regulatory issue and definition of endpoints for a study. Something is screwed up there. 18 year olds and men don’t often get fibro. BTW years ago we had similar problems with a breast cancer drugs. It literally took an act of Congress to get a study approved.
FINALLY the FDA is now requiring natural history as a part of all trials which is slowing down some progress. It’s highly doubtful there is a patent in the offing for the test anyway. You can’t patent a gene and that genetic information can be determined in a number of ways including a full array test (something that BTW may soon be available to all Ben’s Friends Community members) The vaccine will have a very limited patent life.
The fact that we are way behind on protecting research for the folks investing and doing it, is actually slowing it down. What company is going to spend 200 million dollars developing something that a company down the road can copy at no expense.
FWIW Ben’s Friends Staff is attending and participating in the World Genome Conference next week advocating for our communities. It’s an exciting opportunity to promote our communities and the interests of the 74K members we have across the 44-community BensFriends.org network.
In the meantime here’s what has been going on in the courts that is really slowing down treatment: http://www.global-engage.com/life-science/diagnostic-method-patent-claims/ Not an entertaining read, but an informative one!
It’s not the vaccine their patenting, it’s the blood test, and I think they’ve already done it. The vaccine is some derivative of the already FDA approved tuberculosis vaccine.
I think you may have a few things going on in research run together.
You can’t patent a diagnostic test and never have been able too. You can patent the tools (MRI etc) but those are easily duplicated. That was again recently upheld in court.
In this case they are using EMA test/markers that was developed to identify metabolic markers years ago for Crohn’s Disease, (this different than the EM/a blood test.The research team believes they have identified metabolic markers present in FMS. EpicGenetics is seeking to understand fibromyalgia’s possible genetic cause. The University of California, Los Angeles (UCLA) and University of Illinois College of Medicine Chicago have been contracted to sequence the exomes of research participants. Free genetic testing* as part of Campaign 250 is offered to those who receive a positive FM/a® Test result.
The vaccine IF THERE EVER IS ONE isn’t like the one for measles it is a precision medicine product that alter the genes in an effected individual. It is currently a process being to used to treat cancer. Most have failed but a few have succeeded. It is the future but… The reason “precision medicine” is growing is because that process (making a medication for one) maintains margins while using existing technology. Some of these meds can cost $150.000/dose. That blood test has been around in one form or another for a few years.
In any event the initial trial of the test only only involved 50 patients. They are currently designing a large scale trial and attempting to define the end points The researchers plan to perform a larger-scale clinical trial to reproduce the study results. In the next study, the researchers want to examine 150 to 200 subjects per each disease group they previously tested. It is a minimum of 5 years away. This is University research in a combined effort of several universities and is 501c3 foundation supported. There will be no patents. The FM/A test is something different and hasn’t generally been accepted.
Thank you for the clarity. I have tested positive on the FM/a, but I haven’t been offered any genetic testing. If their test has not been widely accepted, I’m surprised that Medicare covers it. I felt hopeful at the beginning of this process. Now, not so much.
The FM/A is a confirmation test. Being positive doesn’t mean you have it but when coupled with other diagnostic tests helps confirm those results. We all carry genetic markers for a lot of things and those markers have been abused in the past and worse continue to be abused. 23and Me, Ancestry etc have greatly abused the testing and have at one time or another been wacked by the FDA.
One prime example that comes to mind is HLA B27 It was discovered than many folks with seronegative spondylopathy were HLA B27 positive. (Includes things such as Ankylosing spondylitis, psoriatic arthritis etc) Somehow for a brief period it v became a “gold standard” It wasn’t what they failed to do was test nonsymptomatic folks. When they did they discovered 30% of them were HLA B27 positive and had NO disease. conversely 30% or more of symptomatic folk were HLA B27 negative. Some very sick folk were denied treatment. Finally the dropped it from diagnostic criteria. The test is still being used but except for some very ignorant (usually old) docs its ignored. BUT when you have a patient that is symptomatic and meets the other criteria a positive HLA B27 test can speed up the move to aggressive treatment.
The same exists with FM/A if they think based on tenderpoints etc that are normally used to DX AND FM/A is positiv its puts one on a shorter road to treatment and make some of the newer EXPENSIVE treatments on the table quicker. I’m in HOPES that the genome testing and FMA studies lead to even quicker treatment at some point.
Th one good thing that has come out of all of this that except for a few old and ignorant Docs, (there are plenty of those) its rare to find a medical person these days that still denies FMS as an actual disease and passes it of to some imagine somatic disorder…
They must all live in Pocatello, Idaho. That would be just my luck right?
No, there is at least one in Kansas!
When you say “newer, more expensive, treatments,”to what are you referring?” I want to make sure I haven’t missed anything.
Debstinydogs, I think you are referring to a comment made by TJ of @ModSupport . He’ll be happy to explain, but he’s out of town at the moment and may not be checking his email as often as usual. I’ll remind him, but you may not have a response for a few days.
The same exists with FM/A if they think based on tenderpoints etc that are normally used to DX AND FM/A is positiv its puts one on a shorter road to treatment and make some of the newer EXPENSIVE treatments on the table quicker.
[quote=“Debstinydogs, post:16, topic:11505, full:true”]
When you say “newer, more expensive, treatments,”to what are you referring?” I want to make sure I haven’t missed anything
I’ll dig out this old thread, if that’s OK, cos I think it’s got valuable discussion on it, in days apparently when TJ had a bit more time for us…
And I’m adding a few pubmed studies, incl. one from Jan21 saying that cryotherapy helps get the cytokines under control! -
I thought I’d written about it here somewhere else, so if you can find where, remind me.
I’ll give a bit of my background on what I’ve read about it.
This Fm/a-test claims to be very accurate (the % they mention varies…). It measures proteins called cytokines & chemokines. Problem is this is a very idiosyncratic hypothesis, not as yet proven by studies. The background of the people behind it seems to me to be it a bit dubious. (Lastly they originally claimed to be developing a vaccine for it, based on their hypothesis. Thankfully at least they’ve dropped this last claim… - ehm, not sure about this, that was the last I read, a few months ago). Nothing could get me to do anything with these people after reading their side of things, checking on their claims and what the other side says about them. I won’t say scam. Praps cytokines will someday be a diagnostic help. But it isn’t. And other docs aren’t taking this particularly seriously.
The research I can find on pubmed:
“Fibromyalgia and cytokines” 2014, Current evidence suggests that cytokines and especially chemokines may have a role in the pathogenesis of this syndrome. Cytokines are small soluble factors that work as immune system messengers. They can be classified as pro-inflammatory and anti-inflammatory cytokines. Chemokines are a special kind of pro-inflammatory cytokines that guide the movement of circulating mononuclear cells to the injured side. Some pro-inflammatory cytokine levels (i.e. IL-1RA, IL-6, and IL-8) and, recently, some chemokines’ levels have been found to be increased in patients with fibromyalgia. Thus, herein we review the current knowledge regarding the role of cytokines in fibromyalgia patients and their possible clinical relevance.
“Low-grade chronic inflammation mediated by mast cells in fibromyalgia: role of IL-37”: Mast cells are involved in FM by releasing proinflammatory cytokines, chemokines, chemical mediators, and PGD2. Ah, I’d heard of mast cells before as a new FM-theory.
Interesting to me cos of my whole-body cryotherapy is this one: Serial whole-body cryotherapy in fibromyalgia is effective and alters cytokine profiles" - very new: Adv Rheumatol. 2021 Jan 13;61(1):3.
OK - if it’s gonna make you try whole-body cryotherapy, like me, I’m with ya…