08.29.2017

Century-old vaccine gives new hope to fibromyalgia community

This article was originally published on Prohealth.com. It is being republished here with permission from the editor. 

If someone could give you a vaccine that would cure your fibromyalgia, would you do it? That may sound like a dream but it’s closer to reality than you might think. Los Angeles-based biomedical firm EpicGenetics and Massachusetts General Hospital researchers are seeking approval from the U.S. Food and Drug Administration (FDA) to conduct a clinical trial next year to test the Bacille Calmette-Guerin (BCG) vaccine as a potential treatment for fibromyalgia.

“BCG is a generic tuberculosis vaccine that is almost a 100 years old and has been safely administered millions of times,” explained Dr. Denise Faustman, head of the Faustman Lab at Massachusetts General Hospital. “For over 10 years, our research group at Massachusetts General Hospital have been actively investigating the role that the BCG vaccine could play in treating various forms of autoimmunity. Our current focus is type 1 diabetes, but globally BCG is being tested in a number of autoimmune diseases. Over the next two years we will begin clinical testing of BCG in fibromyalgia.”

A century-old vaccine for tuberculosis may head to clinical trials next year as a potential treatment for fibromyalgia. | Fed Up with Fatigue

According to the World Health Organization, more than 100 million children are given the BCG vaccine each year. It’s mainly used in developing countries where tuberculosis is still active. The BCG vaccine is not available in the United States because of the low risk of infection. In the U.S., BCG is used in a small number of patients to treat bladder cancer.

So, the obvious question is why would a vaccine for an infectious lung condition be used for fibromyalgia? The answer lies within the immune system.

Vaccines are typically given to healthy people to prevent infection. In this case, however, the BCG vaccine would be administered to fibromyalgia patients in an effort to quell their symptoms.

When EpicGenetics was tasked with creating a diagnostic test for fibromyalgia several years ago, researchers ran all sorts of lab tests on fibromyalgia patients to figure out how they differed from healthy control subjects and what might be causing their symptoms. Researchers discovered several white blood cell abnormalities in fibromyalgia patients, leading them to conclude symptoms are associated with a suppressed immune system.

“We believe [the term] fibromyalgia is a misnomer,” said Dr. Bruce Gillis, EpicGenetics’ CEO. “These people aren’t suffering with anything that’s affecting the muscles, per say. What they are suffering with is their immune system cannot produce normal quantities of protective proteins. …There are cells in the immune system called peripheral blood mononuclear cells. They are not producing normal quantities of the protective proteins called chemokines and cytokines.”

The finding led to the development of the FM/a blood test for fibromyalgia. (Yes, despite what your doctors may have told you, there IS a blood test for fibromyalgia! It’s just not widely accepted in the medical community.) The test analyzes the levels of four chemokines and cytokines found at reduced levels in fibromyalgia patients. These four chemokines and cytokines just happen to be the same ones that are boosted by the BCG vaccine.

“Given what’s been published in the medical literature, we believe this vaccine will reverse the immune system abnormalities [of fibromyalgia],” Gillis said.

Gillis and Faustman are seeking FDA approval to administer the first BCG vaccines to fibromyalgia patients next year.

“This is the first time ever that a direct treatment of fibromyalgia will be done,” Gillis said. “As you know, the medications [currently on the market] for fibromyalgia only treat symptoms. They have no immune system benefits. [The pharmaceutical companies] concede they’re only treating symptoms but you need to treat the disease, and that’s why we’re moving ahead with the vaccine application [to the FDA].”

If Gillis’ theory holds true, then “the chemokines and cytokines that are deficient in patients with fibromyalgia will no longer be deficient [once the BCG vaccine is administered],” Gillis said. “Production levels will normalize, and you have to assume then that their symptoms will disappear. … We think we are on the cusp of something major.”

Because the vaccine has such a long history, it’s not expected to cause any major side effects in patients.

The BCG vaccine is anticipated to cost $20-$25 per dose – a nominal amount when compared to the ongoing expense of taking pharmaceuticals every day.

“We think a fibromyalgia patient would need one or two doses maximum so you can understand why I’m not getting much support from drug companies,” Gillis said.

In addition to the vaccine trial, EpicGenetics is partnering with the University of California, Los Angeles (UCLA) and the University of Illinois College of Medicine Chicago to sequence the genomes of up to 250,000 fibromyalgia patients.

“We’re looking for any type of genetic patterns or anomalies or mutations,” Gillis said.

Patients who test positive for fibromyalgia using the FM/a test will be able to participate in the genomic study.

The FM/a test currently costs $936 but is covered by some insurance companies and Medicare. EpicGenetics’ support team helps patients determine if their insurance company will cover the test. A no interest payment plan is available for people who are uninsured or whose insurance won’t pay for the test.

If you’d like to learn more about the FM/a test, visit FMTest.com. Click here to read more about EpicGenetics’ fibromyalgia genome project and the BCG vaccine study. If you’re interested in having the FM/a test, please fill out the application form on the home page at FMTest.com. If you have additional questions or experience any issues with submitting the form, you can email the company at ask@epicgtx.com or call (310) 277-4600.

Update 11/6/17: I’ve had a number of people, especially those from the U.K., who have said they received the BCG vaccine and still developed fibromyalgia. I asked EpicGenetics about this, and here is their response:

“These people would have not received the particular species we are using and believe will be effective. The vaccine can only be effective when the abnormal peripheral blood mononuclear cells are being produced, which doesn’t happen until the onset of the disease of FM. People are not knowingly born with FM. The vaccine doesn’t prevent the FM. It only reverses the biology of FM after the FM has occurred. Additionally, in the UK and elsewhere, people tended to only receive one dose of the vaccine, and we believe it will take more than one dose for the BCG to be effective.”

Now it’s your turn: Would you try the BCG vaccine if it were approved as a fibromyalgia treatment? Share in the comments!

Update on vaccine trial, April 2018

I recently contacted EpicGenetics to get an update on the vaccine trial. Dr. Gillis provided the following information:

“The funding regarding the vaccine trial application and planning was provided more than one year ago. We are waiting FDA approval, and we expect it soon. … We continue to encourage people to have the FM/a® Test as soon as possible if they want to be able to be considered as volunteers for the vaccine trial.”

Comments

  1. Vicki Smith says:

    Thank you, Donna, for your commitment to informing the FM community through your blog. I just found you this morning and have enjoyed reading various posts and comments.
    I watched my best friend of 35 years struggle with FM since being diagnosed at 21 years old. Her incompetent doctor’s solution was to keep feeding her opioids, which of course, she became dependent. After 25 years of constant pain, it turned this once vibrant, outgoing, full of life girl, into a depressed shell. She took her own life 2 years ago October 20th.
    My commitment now is to her 24-year-old daughter, who was diagnosed with FM a year ago. She has every classic symptom to the hilt. It has been difficult to find a doctor that knows anything about FM. Being in the Seattle area, that’s sad. I am excited to hear about this testing and we are always searching for any clinical studies that come our way. Here’s hoping for something… anything.

  2. I believe this country can find a cure fir this agonizing disease. I’ve had fm five years before my diagnosis. And have had it for several years . ( I’ve lose count). Life is diminished a lot. I have the want n heart to do it… but don’t have the strength or power within me to follow thru. Fm people need this help “Right now”!!! I’d b willing to be to b a test subject. I sick of this life! Robin in tx.

  3. Deana Hitchcock says:

    I most definitely would take this vaccine! I’ve been suffering with fibromyalgia for ten years now. Well, diagnosed for ten years. I don’t really know how long I’ve actually had it.
    Everyone with fibromyalgia could write a book on their experiences. Except, we’ve all lost the focus and language capacity long ago. Hell, I’m barely holding it together for these paragraphs.
    I need more help. I couldn’t really follow the steps from the top to the bottom. Could you please help me? It would be great if you could list the steps to gets the vaccine in the reply. If it wouldn’t be too much.

    Thank you very much.
    Sincerely Deana Hitchcock.

    • Donna Gregory/FedUpwithFatigue.com says:

      You need to have the FM/a test first. To see if your insurance covers it, you would fill out this form and someone from the company will contact you: https://fmtest.com/#information-form
      If your insurance doesn’t cover it, you would need to pay out of pocket for it.
      If you get a positive test result, then you would qualify to participate in the vaccine trial. Right now, the trial will be at Mass General in Boston, but there may be other locations added. Hope this helps!

      • Marjorie Johnson says:

        My son will surely get the vaccine as soon as it becomes available. There is basically no serious risk. They need to be more forthcoming about the FDA approval process for this study. The vague “soon” is not reassuring to people who are suffering and not even sure if this is a legitimate upcoming option or a blind hope. We have put time and money trusting in this unverified testing method using the vaccine as a carrot. Then we get a form letter in response to our questions about the study. If it is what they say, show us what’s really going on so we don’t have to feel like we are being duped!

      • Hannah Aziwu says:

        I’m a Ghanaian and I live in Ghana with a chronic pain which can not be diagnosed so I read till I came across fibromyalgai. The pain is too much but I doubt if I can afford the test in other to be part of trial of the vaccine. I need help

  4. Candace says:

    https://www.arthritiswa.org.au/news/view/fact-or-fiction-the-fm-test.html “The authors have addressed most of the reviewer`s questions, however, the
 reviewer still has some major concerns. This study investigates serum samples
 of FMS patients using one single method and claims to have found the “unique 
pattern” of cytokines in FMS patients. This title is misleading and not well based
 by the data shown and the methodology used. A second method is obligatory 
especially when investigating such a “fragile system” as cytokines that may be 
influenced by many factors and when investigating a non-well defined condition 
such as FMS with an inhomogenous patient cohort – even when using the ACR 
criteria. Otherwise this study will merely add another one to the large body of 
literature on cytokines in FMS, but of unclear significance.”

  5. If this was true there would be no young Fibro suffers in the UK
    We all get the BCG as teens in school, I have the little red smudge to prove it.
    I have a recent fibromyalgia diagnosis although have had gradually worsening sleep issues and fatigue and pain since my early twenties

    • Donna Gregory/FedUpwithFatigue.com says:

      I’ve had several UK readers say the same thing, so I asked the company to respond. Their answer is at the end of the article, which explains why they believe the vaccine will work even in those who have already had it as children.

  6. Alexandra says:

    I would happily try a few doses of the vaccine to decrease or minimize my fibromyalgia symptoms.
    Can you take the bcg vaccine if you have already tested positive for TB with the skin test?

    • Donna Gregory/FedUpwithFatigue.com says:

      I don’t know the answer to your question. You might want to contact EpicGenetics to see what they say.

  7. Teresa Hoeschen says:

    I would definitely try a trial treatment for fibromyalgia. What I wonder is if we have to come off any opioid medications to do so.

  8. First things first. This is the very first I have heard about a blood test for Fibro. You would think that they would want to go back to people who have been diagnosed for years and see about having their blood tested. Also, I teach a course and in it we talk about websites. The FM/a is a .com therefore a money making site and not an informational site looking to help people. To me it screams scam. They have no definite clue as to what causes Fibromyalgia so how can there be a blood test, let alone a cure. They could not pin-point one thing to be able to work on to definitively say that is what we can work on because that is what causes it (this is the common link between all these people.)
    The sad part of all of this is that people waste valuable time and money that they could put into other things (spending time with family, comfort, healthy eating, etc.) Instead they waste it on all these witch doctors and snake oil sales people.
    If you want facts, go to your CDC, Health Canada, NHS or government or hospital resources. Better yet, go to your local Arthritis Society or Rheumatologist.

    • Lorre says:

      I’m glad you mentioned this. I was concerned in my dealings with them because you fill out the application and then they send you an email with information on how to send money for the blood test. They told me my insurance wouldn’t cover it because I didn’t have out of network coverage. When I told them I do have out of network coverage they gave me another reason. The only communication is a very brief email and when I decided to apply again I received the same generic email response. These were not medical people answering my questions, the only communication was how to make my payment. I would love to hear from anyone who has dealt with this company and feels they are valid, and has had a positive experience.

  9. Elspeth says:

    Thanks for article, this is very interesting! I had BCG as a child as did many other commenters. I’m not sure I would want this vaccine other than as originally intended… I wonder what the risks might be. I’ve seen it used in urology as treatment for bladder cancer and a risk there is of patient contracting miliary TB. Likely the risk with vaccine is negligible but that would be my first question about it as treatment for fibro.

  10. How can a vaccine that was mandatory for all school kids be a cure for fibromyalgia?
    Most people have already had it so why would they have it again?
    My flu jab a few years ago nearly killed me I will NEVER have another vaccine as long as I live.
    I wouldn’t touch this with a barge pole.

    • Donna Gregory/FedUpwithFatigue.com says:

      I asked the company the same question. Their response is near the end of the article.

    • Alison says:

      Hi Jools I read your comment about your flu vaccination nearly killing you. I hate to pry and feel awful asking you, but can I ask what happened please? I only ask as I’ve had my flu jab for yrs and no problem, however Oct 2017 I had mine and had some issues and doctors were useless to help me. I too am now debating whether to risk having it again this Oct or take the risk. I’m sorry if this question is out of order.

  11. Colleen says:

    I’m so confused!! I was diagnosed with Fibro about 2 years after I was treated with Chemotherapy for breast cancer. I was healthy prior to having breast cancer. I was in a flare for over a year. I have it so severe that I had to quit my job and I still spend a lot of time in bed. I’d like to try this but I believe Fibro patients have an elevated immune system like someone else had said. The pain I get from Fibro is very similar to the pain I felt when I used to get the neulasta shot the day after Chemo. That shot is supposed to increase your immune system but caused horrible pain.

    • Kimberly says:

      Everyone I know personally that have Fibromyalgia started seeing symptoms after a stressful or “triggering” event. Yours may have been cancer/chemo. Mine was a very difficult pregnancy and labor/delivery when I was 18. My Mom had 7 chrildren and on her third labor/delivery her heart stopped and she was technically dead for several minutes. She had difficulty with pregnancy also. My sister started seeing symptoms after she got Rheumatic Fever and a subsequent cheating spouse ending in divorce. Everyone starts different, but my doctors have said the same in that trauma can be a trigger for Fibromyalgia. When I have really high stress 99% of the time I’ll have a horrible flare a day later.

  12. Tanya says:

    Hi to All. I have had FM for most of my life, before the initial vaccine was given to me. I have it in all parts of my body. The pain has been so horrendous, that I have contemplated ending my life numerous times. To say its been an up hill battle is an understatement. I’ve seen many of the ‘get your hopes up’ articles that frequent the internet…. But, this one I feel is different. It makes sense to me. I am truly excited at the prospect of being able to at least try this vaccine! If it means that I get my life back, i’ll do it! I’ve tried SO many other things, as we all know and have experienced, the let downs and disappointments, the other symptoms that come with the multitudes of pills we have to take…. its just not good enough. Also… I think some people need to take into account that ‘because’ of all the fake/get hopes up articles that ‘have’ been around for years…. its not helped at all. I feel its created such a negative mindset in our community. I understand it, for sure! But I do wish that people would try to keep an open mind. It IS inevitable that ‘one day’ a cure will be found. Can we as a community be open to that please? I wish you all Good days.

    • Tanya, I agree. I just took the FM/a blood test yesterday and should get results next week. (Medicare is covering it). If they are able to help us with the vaccine, I’ll be first in line. I researched this thoroughly and believe it is the real thing.

  13. I think this is a load of BS. They are praying on us and trying to make a buck

  14. Sarah says:

    So many people here are mentioning about the injection they had as a preteen and I understand that the response is that no it doesn’t work that way. You need the injection after you’ve been diagnosed with fibromyalgia. However, I’ve had fibromyalgia since I was around 10/11 years old and had the injection when I was around 14 and it didn’t stop it from getting worse. I still live with, flares, constant pain and spasms, sleep deprivation and sadly the list goes on and on. It’s nice they are looking to help all fibromyalgia sufferers like me but I’m proof that it will not help.

    • Donna Gregory/FedUpwithFatigue.com says:

      Because so many people asked this question, I asked the company to respond and this is what they said:
      “These people would have not received the particular species we are using and believe will be effective. The vaccine can only be effective when the abnormal peripheral blood mononuclear cells are being produced, which doesn’t happen until the onset of the disease of FM. People are not knowingly born with FM. The vaccine doesn’t prevent the FM. It only reverses the biology of FM after the FM has occurred. Additionally, in the UK and elsewhere, people tended to only receive one dose of the vaccine and we believe it will take more than one dose for the BCG to be effective.”

      • Myself and others will tell you we were born with it. Seems like yet another scam. How does this reconcile with other studies showing involvement of the hypothalamus? Connective tissue problems and endocrine system problems with fibromyalgia don’t seem to be addressed. Very skeptical.

    • Tanya says:

      Hi Sarah, the article and the update explains why it wouldn’t work with only one dose.

  15. Sue C, says:

    I would take this vaccine right now- this very moment if it were available! I think I would be a good person to try this on as my white blood count is low which leads me to believe what they are saying to be true. I went through chemo which totally made my white blood count drop to a minus number- but my white blood count has always been low before chemo. The pain – burning and tingling from fibro makes me wonder why I went through chemo to survive and suffer so much from fibro. Please get this vaccine out to us who suffer so much! I am sure my insurance will not pay for the blood test as I am on social security and another to cover some of what they don’t pay for. It’s a shame we might loose out on a treatment we can’t afford!!! And why does that blood test cost so much to determine if you have fibro???

  16. Freda Lovell says:

    People, I had this checked out by Devin J. Starlanyl, who is a retied MD and for years has research and study guide fibromyalgia a myofascial pain syndrome and dysfunction and has written a ton of books on both subjects and she looked into these people and did not have anything positive to say about their research and their work other than it’s just a way to make the greedy dollar and raise up our hopes and it’s not going to go anywhere positive and that’s all I’m going to say about this but please be careful about getting your hopes up about this particular vaccine or hopes of I think it’s just about the dollars guys it’s not about making you as well

  17. ISABELLE MOUNET says:

    Hello there,
    I have found this article most interesting. As I am French, I was vaccinated, age 9, with the BCG.
    Yet, I still developed Fibromyalgia, and so did my sister, also vaccinated.
    I wonder if I should/could get vaccinated again
    Your views really matter to me. 😀

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Isabelle, I had a number of people share they were previously vaccinated and ask why that didn’t protect them from fibromyalgia. I posed that question to the company and this was their response:

      “These people would have not received the particular species we are using and believe will be effective. The vaccine can only be effective when the abnormal peripheral blood mononuclear cells are being produced, which doesn’t happen until the onset of the disease of FM. People are not knowingly born with FM. The vaccine doesn’t prevent the FM. It only reverses the biology of FM after the FM has occurred. Additionally, in the UK and elsewhere, people tended to only receive one dose of the vaccine and we believe it will take more than one dose for the BCG to be effective.”

      I hope this is helpful in answering your questions.

  18. Jean Price says:

    It’s so VERY sad that pain…and the people who have it…are judged AND misunderstood!! Yet PAiN has to be one of the most individual, most personal, and most difficult to communicate conditions there is in life!! Why it’s also has become one of the most maligned and most discriminated against…especially now…is beyond reason!! There has never been a verifiable technique to measure pain…so discernment and observation has always been the way pain was gauged, by knowledgeable and caring physicians. Now this has been largely been replaced by skewed judgments….and the deceit of the current anti-opioid hype!!

    We have technologies to show us our ancient global connections to other people with DNA….yet WE HAVE NOTHING that can show us the TRUE AND REAL quantifiable and qualifiable amount of pain a person is in!! Well, except the ridiculous 10 point scale…or the happy and sad faces of the 5 point scale, that is!! More of a joke than a tool, I’m afraid!

    For instance, when someone asks me my pain score…it would make much more sense for me to ASK THEM what their OWN 10 would be!! Before I answer! Because if their own 10 is a stubbed toe…which CAN really HURT…YET MY 10 is an almost amputated nerve root in my low back…then when I say MY pain NUMBER, they will assess it with only their OWN pain experiences as a reference…regardless of how bad I KNOW my pain truly is!! (Even when our experiences are close to the same, we still differ in how pain affects to us…and we know even those WITH pain judge others who have pain, too!!)

    So THIS current METHOD can definitely leave them with a lessened sense of the level of OUR pain, and how it is affecting all OUR functioning! And probably also leaves them wondering many times why WE would even consider taking a pain medication!! There is no good way to convey our pain to another…to be totally understood, without judgement being part of it!! Either the judgement of…yes, you must hurt! OR…no…you can’t possibly hurt as much as you say!! And these judgements all rely on what’s observed RIGHT THEN…like the issue with understanding Lady Gage’s pain…when most healthy people can’t imagine doing a show like she does…EVEN without pain!! And, like when nurses see a patient talking on the phone, or laughing…and think oh, they’re not in pain!! Or when our doctors see us showered with hair combed and out of pajamas…they don’t realize they aren’t really seeing our USUAL LEVEL OF LIFE…our pajamas for days on end…and rarely showering except when absolutely necessary!! And rarely getting out except to go to the doctor!!

    The basis for treating pain RELIES on the doctor BELIEVING what the patient says…within reason and with using their skills of perception and their skills of discernment, after observing and doing a thorough physical exam!! Yet these days…no one with pain is considered believable!! Doctors don’t do much in the way of physical exams…and they don’t practice their discernment enough to even trust it…about our pain, about how we are taking our meds, about being totally compliant, about being innocent of any abuse!!

    So the judgments come in and then DISTORT our care…and INFLUENCE how others think OF us…whether we are just a regular person, or a nationally recognized entertainer! We are guilty until proven guilty…and condemned by our government for being drug seekers…instead of being people with legitimate life limiting pain! Regardless of our status in life, regardless of our diagnoses!

    The problems with pain care now are relatively easy to define..the solutions are not!! Because they involve too many layers of deception and greed, instead of just good solid medical knowledge and good practices!! A return to basics would help…a “pain-o-meter” being invented would maybe help, too! Mostly it’s a return to sanity I think we need now!! And I don’t see this happening anytime soon! Sad!

  19. N. Ferguson says:

    Absolutely- I am so tired of being in pain all the time. It is infuriating and exhausting for me, and frustrating and misunderstood by my family.

  20. StevefromMA says:

    Hi Donna,

    Hope you don’t mind my posting this here, you,of course, can also screen out. I’m kind of the unofficial (unpaid) poster boy for the Epicgenetics study and am doing all I can to publicize it to enroll people. Unless you’d rather have fibromyalgia than the faint chance of mercury being in the BCG vaccine (I have no idea if it is and don’t care) , enrolling in this is a no-brainer. If you don’t have insurance, they’ll help you figure out how to pay for it. At 69, with terrible and worsening FM for 30 years, at this point, I would try almost anything that won’t immediately kill me. As a Ph.D. scientist (not employed by Epicgenetics), I’m well aware of research protocols and risk/benefit calculations. I just don’t see the risk here and like some others, I hope to be the first to get it! I recently was interviewed by our ABC News affiliate after separate interviews by them with Drs. Gillis and Faustman. Some of you might find it interesting and you can see it here|:

    http://www.wcvb.com/article/mass-general-researcher-investigating-possible-fibromyalgia-vaccine/10364683

    BTW, whoever noted that the vaccine is not a preventative but a treatment is correct;that issuewas discussed elsewhere by Dr. Gillis, so having gotten the vaccine at some point does not immunize you from getting FM.

    Stephen Golder

  21. Carole Sarvis says:

    I was born 1943. In 1962 I was working in a TB hospital and received BCG as did all people who worked there. 1996 I was diagnosed with fibromyalgia by a Rheumatology Professor and I had the symptoms for at least 4 years before that. I can’t imagine that the BCG would have any effect for me. For the last 15 months I have been going through the worst flare I have ever had.

  22. Michelle Alvarez says:

    Hell yes! Not only the vaccine but I want to do the other stuff too. Blood test and genome project. Also, I’m so grateful for this site!! I could never do all the research done here. So…THANK YOU.
    Best, Shelley A.

  23. Ingrid Hanson says:

    Hell yes! I immediately signed up for it. Some medications (in my case, Nasonex, a nasal steroid) could interfere with the blood test, so I need to be off of it for 30 days, then will have the blood test done, and wait for the next stage of the trials, the vaccinations, which begin after the first of the year. Donna, a huge thanks to you for posting this article! I’ve also let friends with fibro know about it, and if they know anyone with fibro, to pass it on.

  24. Pam Trotter says:

    I would try it! My life has been an uphill battle of pain and fatigue….. LDN has been so tricky to get on. I would love to be part of their test. At 57 my life feels over.

    • Lynn W says:

      Pam. Get on the ldn. I’ve only been on it 6 weeks and see improvements in pain level as well as mood/outlook. I’ve tittered slowly from 1 mg at night to 2 and can go as high as 4.5 if needed. My GP prescribed it.

      • Marylou Gunning says:

        Can i ask you Lynn W. What is Idn. ? Suffering from fibro for almost 20 years… Thank you!

  25. I guess I’m a little leery of it because we don’t know if Fibro is a virus.

  26. I’ve had the BCG injection as a pre-teen upon immigration to Canada. I have FM and am wondering, if this injection is theoretically supposed to help – why am I suffering? Also, wouldn’t it be prudent to conduct a study on immigrants to find out how many people who have had the BCG injection also suffer from FM before spending a tonne of money injecting people unnecessarily?

  27. Dagmar MacQueen says:

    I had the vaccine as a youngster and tested negative for the booster in my teens. i probably wouldn’t take part in the trials as I agree with a previous comment, I feel my fibro is down to constant stress and trauma throughout my life. I’m much improved since taking LDN for about a year now but any stress leads to a flare. That can be any combination of energy collapse, pain and migraine.

  28. Tuknits says:

    Not sure if I would or not. Part of me says hell yes. The last rheumatologist I saw told me there was nothing else he could do for me so currently I take nothing but OTCs for my pain and it really sucks. Nothing really touches the pain. Another part of me thinks hold off. I have so much going wrong in my body (FM, arthritis, seizures, and moyamoya disease) can I really afford to throw an unknown into the mix with the chance that my body may not react kindly. Definitely something to think on.
    On a side note, I had no idea there was a test for FM. Thought I had been tested for everything under the sun.

  29. Deborah says:

    Some of you are arguing that it won’t work because you had it BEFORE you had Fibro. They are not proposing it prevents fibro, they are checking to see if it is effective as a TREATMENT for Fibro. Speaking as a former scientist, these two things are very different. I would try absolutely anything with some real science saying it works.

  30. I live in the UK where until the beginning of this century we received the BGC in year 9 (age 13-14) – if it actually cured fibro how come I, along with many others, have developed fibro?

    And yes, I definitely was immunised, age 13 I was old enough to remember it, and I have the scar from the vaccination!

    • I wondered about that while I was reading this article. However I quickly dismissed the thought that this study had any true potential without having read your query yet. If I come across as skeptical, I apologize. I really do want to be optimistic but chronic pain & fatigue, plus the vast research I have been able to do; (now that I can no longer work) have taught me that there is not likely to ever be some kind of miracle cure for people who suffer from fibromyalgia.

  31. Jacqueline Gladwin says:

    I live in Scotland, UK. I was given the BCG as a young child, but it was determined I didn’t need a second dose in Secondary (high) School. I don’t understand why they believe in this when so many people from countries that had TB programmes in place have this condition.

    • Linda Kearney says:

      Yes Jacqueline Gladwin I had it and they determined I didn’t need a booster I have had Fibromyalgia for years so I can’t see how something this old can help especially when you have already had this vaccine and yet developed Fibromyalgia, I think they just grasp at straws.

  32. Tammy Randall says:

    Why can I not copy and paste this page in order to print it out?

    • Donna Gregory/FedUpwithFatigue.com says:

      I had to install a program that stops people from being able to cut and paste articles on my site b/c I was having too many people steal my articles and then put them on other websites for profit. I’m sorry for the inconvenience but it was necessary to protect my work from being plagiarized by others. If you’d like, I can email you a copy of the article. Just let me know.

  33. Julie E Parsonshat happens in what the long term use of the vaccine says:

    No I think I’ll wait to see wair to see what will happens in the long term use of this vaccine.

  34. Yes definitely I would try it. I am willing to try anything that would take pain aeay. And get me off theall the medicines. I do not take any prescription pain pills, I refuse to take them. But my doctors they they are not afective on fibro pain anyway. If I could find something that would release the muscle tightness and spasms I have would be a article for me…

  35. Mary Mc Sherry says:

    BCG vaccination has been given to all babies in Ireland since the 1950’s. I was given it. My fibro developed 9 years ago after chronic pain post neck injury and previously I had no medical issues.
    Like others here, am very wary of vaccinations now due to the amount of additives

  36. It will be interesting to see what the clinical trials show.
    The article nicely describes that there are certain immune chemicals (cytokines) that are low in fibro. But it doesn’t discuss the fact that some cytokines are elevated in Fibro.
    The article incorrectly says that the ‘The immune system is suppressed’ in fibro.
    If anything, its the opposite in most cases, which is why we see so much fibro in people with autoimmune disease.
    The overall bulk of the research out there suggestions that its overactive immune system that is involved in fibro.

    Most of you probably know about the work of Jared Younger, and others, who have shown that the immune system produces too much of several cytokines. And that this is part of the mechanism of action of Low Dose Naltrexone (LDN), which reduces pro-inflammatory cytokine levels.

    That said, there are some cytokines that are anti-inflammatory. Not sure if the ones that the vaccine boosts are anti-inflammatory or pro-inflammatory.

    Anyway, I’m glad they’re trying….

    p.s for those who ask whether the BCG that they got when they were young would make a difference. Probably not. But as with everything else, its very individualized. Antibodies and cytokines are very dynamic and can change over the lifespan. It’s likely that the cytokine changes that happened to you when you got BCG as a kid are no longer persisting.
    May everyone have speedy and complete healing!

  37. Gloria Hurta says:

    I would probably be allergic to it, as I react to almost everything, so, no I would not chance it!

  38. Anita Meeks-Chambers says:

    I would like to know what preservatives or extenders will be used. I thought Mercury had not been used for ?? years in vaccines. But , I am definitely interested in relief from being so exhausted all the time

  39. Grant says:

    I’m certainly not against this, however I feel this is perhaps being driven without thought to further information gathering from other countries prior. The USA never had a mass population TB vaccination program like some countries did in efforts to fully immunise their populations.
    ((As an aside it is now known (as is discovered with many drugs years later) that the developed countries with full TB vaccination programs had no lessening of TB occurrence rates when compared with those that didn’t have vaccination programs but instead implemented better diagnosis, monitoring, prevention and treatment initiatives.))
    That aside there are countries like Australia who had almost total population vaccination programs running through the country by vaccinating all children in school from the 1950s to the 1980s before it was discontinued (excepting two states that remained independent and would not implement the program in schools). That is a vast number of vaccinated individuals to draw from. How many of these individuals have gone on to develop Fibromyalgia anyway?
    I seem to recall there being a stipulation around TB vaccines not being given to any individual with any compromised immune system issues. Now we know Fibromyalgia sufferers have compromised immune systems and I fear this could potentially be a mistake.
    There is a potential for partial temporary improvement as the bodies immune system is coerced to produce more compounds to attack the antigen. However Fibromyalgia sufferers have organs that are depleted of full functioning capacity all round due to the lifetime drain of being at elevated stress/response levels. This is part of the problem medical science is yet to realise. Placing a further demand may simply provide a short term boost as it forces organs to produce more whilst in reality actually draining the near last reserves and abilities the organs have to produce such. This has the potential to lead to an even greater crash after a relatively short term gain.
    Pushing the immune systems of immunocompromised individuals is prone to known negative medical outcomes and I’m hesitant regarding any long term benefits of this one.

  40. Ellen Saville says:

    I have had this illness for 40 plus years. I am now 71. To even begin to think of a life without all this pain and fatigue would be a dream come true. I don’t know much about medicine so I don’t understand the concern about the mercury and aluminum. But, if my doctor said it would be okay with me taking the vaccine, I would do so just to be able to have a few more years of life pain free.

  41. Linda McFarland says:

    Can I be the first? I’ve had disabling FM for the last 27 years and counting. What’s a little mercury if I could live the remainder of my life (I’m 65) like a normal person….

  42. we had this is secondary school UK, I didn’t have it done as the pre test indicated I didn’t need it!?!

  43. So if this is a solution being offered can they pinpoint the people who have already had this vaccine many years ago? If so can they find out if any vaccinated people have Fibro or symptoms as surely this would be a good place to start before new testing happens.

    • Nicola says:

      Try magnesium oil .. fibro sufferers are usually deficient in magnesium; every cell in the body needs magnesium to function correctly. I have only positive results from it..

      • Momlady says:

        I added magnesium to my regemine when my restless leg syndrome got out of control. It has worked beautifully.

    • Nicola says:

      Agree. I’ve had fibro since age 6 I’m now 49. I alao had the vaccine aged 14.

  44. Bonnie St George says:

    Yes I would be willing to participate in the trial. I have moved from Alaska to Kentucky last year and now I’m not able to find any medical help for my pain. Anything would be better than living most of my time in bed in terrible pain with no relief.

  45. Screnshaw says:

    If they want us to be guinea pigs they should pay for the test. They sure would have a lot more volunteers that way!

    • Becky says:

      Screnshaw, I totally agree with you.

      • J Taylor says:

        Hummm… what about we pay for our own test… to weed out any ‘wanna be’ subjects, and they pay for the treatment and any resulting ailments or conditions related to the treatment that the subject endures?

    • Rochelle says:

      Agreed! I live in Canada and contacted the company and was told I’d have to pay the full amount, which works out to about 20-25% higher in Canadian dollars. No way was I going to pay that! Most medical research pays the test subjects for their participation.

    • Frida says:

      I thought they’re suppose to do some kind of controlled animal testing first. I don’t understand how researchers can justify using the vaccine without more statistics. I do have concerns about being a human guinea pig.
      At the same time if i could live the last of my years not suffering from enormous pain and exhaustion. It might be worth it.

      • Donna Gregory/FedUpwithFatigue.com says:

        The vaccine under consideration has been used on humans for nearly 100 years. That’s probably why animal testing is not needed.

  46. StevefromMA says:

    I don’t know if the vaccine has mercury in it but it can’t be worse than my life-destroying FM. I “passed” the test, paid for by Social Security, and hope to be one of the first treated. Disappointing to hear you got FM, Donna, despite getting BCG in high school but there’s almost no one else out there offering real treatment with a theoretical basis. Nothing works for everybody and nothing has worked for me. Dr. Gillis is convinced the vaccine will work.

  47. I’d try it and I would hope that because my son has had it (some of my husband’s family is in India so we qualified) that he has less chance of getting it!!

  48. I’ll be keeping an eye on this with interest. I was actually given the BCG vaccine at high school; it was routinely administered and I think they stopped it the year after I had it. My gut feeling is I feel biased against it because of this. It was many years before I developed fibro but I was routinely sick all the way through my teenage years so I don’t think it had any positive impact on my immune system! It will be interesting to see how the studies turn out.

  49. Indeed this looks promising except for one thing. Vaccines usually contain mercury (thimerasol) as a preservative and aluminum to trigger the immune response. The aluminum crosses the brain barrier bringing the virus with it. I don’t like this particular approach to treatment.

Trackbacks

  1. […] Last spring, Los Angeles-based biomedical firm EpicGenetics began seeking approval from the U.S. Food & Drug Administration (FDA) for a clinical trial to test the Bacille Calmette-Guerin tuberculosis vaccine as a potential fibromyalgia treatment. […]

  2. […] Last spring, Los Angeles-based biomedical firm EpicGenetics began seeking approval from the U.S. Food & Drug Administration (FDA) for a clinical trial to test the Bacille Calmette-Guerin tuberculosis vaccine as a potential fibromyalgia treatment. […]

  3. […] information, you can check out my previous post on the FM/a test here. I’ve also written an article on the vaccine that EpicGenetics may be trialling as a potential fibro […]

  4. […] You can read my previous article about the FM/a test here and about EpicGenetics’ possible vaccine for fibromyalgia here.  […]

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