06.03.2019

New fibromyalgia & Lyme disease research studies (May 2019)

I was on ClinicalTrials.gov earlier this month to research another article, and these bright blue boxes with the word “NEW” on them kept catching my attention as I was scrolling the pages. It seems we have quite a few new fibromyalgia and Lyme disease research studies in the works, so I thought it would be interesting to compile a summary of them.

As usual, there are the typical exercise- and cognitive behavioral therapy-related trials for fibromyalgia, but there are few promising listings, too, including one that’s looking at the effectiveness of cannabis for chronic pain and another that’s studying the repurposing of a migraine drug for fibro.

You’ll notice there are fewer Lyme studies, and all of them tend to focus on treatment of acute infections. Unfortunately, this will probably remain the case until the Centers for Disease Control & Prevention (U.S.) finally admits the frequency of chronic Lyme disease.

Would you like me to continue sharing these research updates? I find these summaries really interesting, but maybe I’m just a research nerd. Let me know your thoughts in the comments section below!

New fibromyalgia research studies

1.

Repetitive Transcranial Magnetic Stimulation (rTMS) in fibromyalgia

Izmir Katip Celebi University researchers in Turkey are studying “the effectiveness of high-frequency [repetitive transcranial magnetic stimulation] to the left dorsolateral prefrontal cortex in fibromyalgia patients,” according to a ClinicalTrials.gov summary.

(Read more: Previous and ongoing rTMS/fibromyalgia studies)

(Read more: rTMS eases symptoms of depression, improves well-being of fibromyalgia patients, study finds)

2.

Study of the influence of POLD manual therapy in fibromyalgia

Researchers from the University of Lleida in Spain are studying the impact of the POLD method, a form of manual physiotherapy, on fibromyalgia. “This therapy is based on a passive, oscillatory mobilization, performed at a resonance frequency and applied throughout the time of the therapeutic session, on the vertebrae and the muscles of the back, without interruption,” according to the ClinicalTrials.gov summary.

(Watch: An introduction to the POLD method)

3.

High-intensity interval training in patients with fibromyalgia

Investigators from Hittite University in Turkey are testing a hypothesis that “six weeks of five weekly sessions of high-intensity interval training will show superior effect reducing the impact of fibromyalgia and improving pain degree, functional capacity and health-related quality of life in women with fibromyalgia compared to moderate-intensity continuous training,” according to a study summary.

(Read more: What fitness training works best with fibromyalgia?)

4.

Brain imaging study on biomarkers for fibromyalgia

The Nova Scotia Health Authority in Canada will be investigating brain, social and psychological factors that “enhance or reduce the effectiveness of pain treatments in people suffering with fibromyalgia pain. … The investigators aim to study these factors to identify and develop feasible and robust indicators based on a person’s biological makeup (also called biomarkers). These biomarkers will allow doctors and researchers to predict more accurately which treatment and prevention strategies for a particular disease will work in which groups of people.”

(Read more: Unique fibromyalgia brain signature could lead to easier diagnosis)

5.

SHUTi versus usual care for management of insomnia in patients with fibromyalgia

Mayo Clinic “researchers are evaluating if cognitive behavioral therapy for insomnia delivered over the internet will help with fibromyalgia symptoms.”

(Read more: 13 tips for getting a better night’s sleep with fibromyalgia)

6.

Cardiovascular autonomic function and endogenous pain modulation

This Marquette University (Milwaukee, Wisconsin, U.S.) study has three goals: “To investigate the influence of cardiovascular autonomic function on pain sensitivity at rest in patients with fibromyalgia and age- and sex-matched controls; to investigate the influence of cardiovascular autonomic function at baseline and during exercise on the pain response following submaximal isometric exercise; [and] to study the relation between the pain response following physical and cognitive tasks (exercise and mental math, respectively).”

7.

A study to test the effectiveness and safety of fremanezumab on patients with fibromyalgia

Researchers from Teva Branded Pharmaceutical Products will study the effectiveness of fremanezumab administered subcutaneously for fibromyalgia pain. The U.S. Food & Drug Administration approved fremanezumab (sold under the brand name Ajovy) last year for the prevention of migraine. The company estimates it will complete its phase 2 fibro trial in 2021.

(Read more: The migraine drug explosion begins | Could fibromyalgia and ME/CFS benefit?)

8.

Repetitive thinking in fibromyalgia

Centre Hospitalier Universitaire – Amiens researchers in France will study if rumination increases fibromyalgia pain.

(Read more: Rumination worsen fibromyalgia symptoms)

(Read more: Rumination modulates stress and other psychological processes in fibromyalgia)

9.

Subjective aging in fibromyalgia

Researchers from Gaziosmanpasa Taksim Research and Education Hospital in Turkey will look at the subjective age (i.e. how old do you feel vs. chronological age) of fibromyalgia patients and how that might correlate with increased depression, anxiety, fatigue and other factors.

10.

Outcomes mandate national integration with cannabis as medicine

Omni Medical Services will conduct a “multistate, multicenter clinical study to determine the efficacy and safety of medical cannabis for a wide variety of chronic medical conditions” including fibromyalgia.

(Read more: Could fibromyalgia be caused by an endocannabinoid deficiency?)

(Read more: Can cannabis treat fibromyalgia better than prescription drugs?)

New Lyme disease research studies

1.

Novel diagnostics for early Lyme disease

During this study, MicroB-plex and Johns Hopkins University are “introducing a novel, blood-based diagnostic method that will enable clinicians to diagnose infections earlier and to monitor the success of their interventions.”

(Read more: Think your doctor ruled out Lyme disease? Probably not!)

2.

Tick-borne encephalitis and possible borrelial serology

University Medical Centre Ljubljana in Slovenia will “assess the proportion and clinical implication of proven and possible coinfection with Lyme borreliae in patients with [tick-borne encephalitis], and to evaluate the association between anti-borrelial antibiotic therapy and clinical outcome in the subgroup of patients with possible coinfection.”

(Read more: The truth about Lyme disease coinfections)

3.

Inflammatory mediators in erythema migrans

The objective of this University Medical Centre Ljubljana study in Slovenia is to “characterize the inflammatory proteins, gene polymorphisms and transcriptome profiles in patients with erythema migrans to gain better insight into pathogenesis of early Lyme borreliosis and to define new immune modulators that could serve as biomarkers of disease activity.”

4.

Different amoxicillin treatment regimens in erythema migrans patients

This third study out of University Medical Centre Ljubljana in Slovenia will “compare the efficacy of different amoxicillin treatment regimens in patients with erythema migrans.”

New #fibromyalgia & #Lyme research (May 2019) | Fed Up with Fatigue

Comments

  1. Yep. Keep ’em coming. And please check out the protocol I made. It’s free, unlike a lot of other scumbag scammers’ websites!! https://imdoingwitchcraftoverhere921091042.wordpress.com/2018/07/28/the-hydra-protocol/

  2. Leicia says

    Donna, study 1 sounds intriguing. Depending on how it was conducted; research methods; etc. could you possibly post the full journal reference. I would love to read it and see the implications of the details. Thank you for Fed up with Fatigue, and helping others.

    • Donna Gregory/FedUpwithFatigue.com says

      The study is new and hasn’t been completed yet so you might want to bookmark the link and check back in a few months.

  3. I have a long term Lyme infection and a bartonella henselae infection. I consider myself a bit of a research nerd as well and enjoy your updates. I was pleasantly surprised to open your newsletter to see that the header had changed to include Lyme. I am glad that you were able to transform your understanding of what is causing your fibromyalgia symptoms. I sat for a year with two fms diagnoses and tried with everything I had to follow diet and exercise recommendations. It frustrated me to no end that, despite all my efforts, my symptoms were not changing and I even felt like they were worsening. I’m improving under the care of a naturopath in 6 months moreso than I ever did depending on western medical doctors for that whole year I struggled. I bit the bullet and paid for private testing. Many others will not pay and will continue to suffer cluelessly. Little do they know it’s only the surface of their suffering as treating and experiencing herxheimer reactions has been an absolute living hell. But finally my suffering has a purpose and most importantly an end game. My naturopath has used the word cure. Medical doctors continue to tell me there is no cure. I let it fly out the other ear.

    For myself, I am incredibly concerned about the numerous studies that suggest that Borellia burgdorferi may have the capacity for sexual transmission. My 8 year partner is getting sicker all the time, mentally and physically and his joints are being affected immensely.

    What frightens me is that the research that has found the spirochetes that cause Lyme in vaginal and testicular secretions as well as genital lesions are not new… the studies are 5 years and older. Yet a sound scientific model to find out definitively is nowhere to be seen.

    Something weird is happening. This should be considered urgent information to uncover with multiple research teams on it.

    Combined with transmission from unfelt tick bites from ticks as small as the tip of a ball point pen and overwhelming numbers of anecdotes from mothers who claim they have infected their children (some with strains from overseas yet the child never travelled — there’s a case study documented like this) this disease undoubtedly has the potential to reach epidemic levels. Climate change is also a major factor affecting how active the vector insects are, extending their reach into territory that they originally were not an issue and once bitten, warmer temperatures have the potential to allow for faster transmission of the disease causing micro-organisms to the victimized host. Our governments continue to tell us that it is preventable with some bug spray. I’m not so sure.

    Furthermore, it’s not just Lyme we have to worry about. There are a large number of co-infections that ticks can carry. These infections are no less disruptive to a quality life and no easier to diagnose or treat than long-term Lyme. Medical doctors are cluelessly spreading misinformation all of the time. Very few are on the same page.

    North America especially is ridiculously ill-prepared to fight back… CDCs unwavering dismissal of the existence of chronic Lyme disease is hurting us all. If an acute, early infection is not treated thoroughly it becomes chronic. The microbes reproduce. This fact should not be dismissed so easily. Huge populations have already been crippled with more to come in the near future.

    The spirochetes can pass the blood brain barrier and infect our brain. It burrows through tissue using its corkscrew shape (a shape it shares with syphillis) There is evidence supporting neurospirochetosis as a causative factor of Alzheimer’s Disease. MS, Parkinson’s, ALS, lupus are being associated with microbial infections. Mental illness is spreading like wildfire causing related crises in our health systems. Doctors continue to ignore that there could be an infectious cause for this. There’s a documented case of a young boy who had treatment resistant schizophrenia. Once bartonella was treated, his schizophrenic symptoms completely disappeared.

    Reported cases of Lyme (that pass intense elimination criteria which refutes many legitimate cases from the numbers) are growing at an extremely alarming rate.
    Patients have more fuel to fight back now more than they ever have. Don’t let them keep us sick for the sake of profits and politics.

    • Donna Gregory/FedUpwithFatigue.com says

      I could have written exactly what you just did! It’s very frustrating!!!! Have you read Kris Newby’s new book “Bitten” yet? It explores the possibility that today’s Lyme is a biowarfare agent that somehow got released to the public. Yeah, I know how crazy that sounds, but Newby was able to back up her theory w/ lots of documentation. There’s evidence that we aren’t just fighting a spirochete, but something else. It’s a great read and shocking and disturbing, and explains why so many of us aren’t able to get rid of this stuff w/ just antibiotics.

      • No I have not but it is on my radar. I’ve watched some YouTube clips from the author who explained she took a lot of time collecting concrete evidence so that it could no longer be brushed off as a conspiracy theory. There is already tons of online information about “Operation paper clip” on Plum Island and one of the scientists even admitted to being involved years ago. A short 9 mile trip to where the first recorded outbreak of Pediatric Lyme occurred in Lyme, Connecticut. I am relieved that you are familiar with my comments.

        I’m seeking the care of a BC naturopath in Canada hailed by many to have given them a new lease on life and some even say he saved their life altogether. Email me personally if you would like some information.

        I am 6 months into treatment (herbs and antibiotics) and I have noticed some small improvements in bothersome symptoms. I once felt that I had a brain tumour because my headaches were so chronic and so painful that I turned to weekly lidocaine injections in the base of my skull for relief. I can now manage mild daily headaches with small amounts of cannabis again. That’s just one of many improvements.

        My medical doctors of course keeps telling me there is no cure for fibromyalgia or for Lyme disease “if I had it.” They ignore my international blood tests from germany and the US that gave identical positive results to boot. They can’t get over the 3 Canadian elispots that I had that were negative. I’ve travelled overseas to India, and a few times to Europe. It’s possible that I have strains that Canada doesn’t even test for.

        What’s more is that doctors have left me without anything to manage pain even when I agreed to stop cannabis for their reasons that had little to no scientific evidence (familial history of cancer). As far as they know I still havent picked it back up (Arizer vaporizers are amazing and affordable) and I’ve been left with no help to manage for 3 long months now and with pharmaceutical trials like gabapentin increasing my pain levels to the point of vomiting. Dismissal and constant invalidation of daily pain is enough to drive the strongest souls to suicide.

        My microbiology background and detailed knowledge of my microbes are what keep me sane through my insane world of symptoms that doctors are shrugging off and allowing to continue. Western medicine has failed me for far too long — I’ve endured half a decade of life disturbing symptoms that have largely stolen my 20s. I know there are others who don’t have the knowledge to fight back and are lost to the cruelty and hopelessness offered by fibromyalgia drugs. My trust in doctors is shattered beyond repair and I once was training to join the health system.

  4. Elaine says

    The more we know the better. I also research a lot and find it interesting and I am vigilant on finding out what works for me.

  5. Thank you Donna! I appreciate the time and effort you put into your research, grateful that you share it with us, they are interesting and informative. Your website is a valuable resource.

  6. I find all this research fascinating. Thank you! Please continue if you can.

  7. Helen Cooper says

    I also am a “RESEARCH NERD”!! —- It is the ONLY way that I have gained ANY real knowledge about Fibromyalgia.. I believe that I know more about Fibromyalgia now than my Rheumatologist does!!!! I also know doctors that have never even heard of Fibromyalgia, or do not believe it exists even if they have heard of it. Summer is an especially BAD time for my Fibromyalgia. Having Fibromyalgia is a difficult and painful road.
    Us FIBRO sufferers need all the help that we can get!!!! Keep up the good work!!

    Thanks
    Helen

  8. I am fascinated that there are so many fibromyalgia studies happening in Turkey! Are there more cases there? Do they have more doctors who spend more time or energy on it there? Just makes me wonder…

    • Donna Gregory/FedUpwithFatigue.com says

      I noticed that, too. I think it would be interesting to look at how fibro is treated in other countries.

  9. Keep going please, the more info found the closer we get to beating these illnesses

  10. I appreciate your diligence in research. Please keep up the good work.

  11. Yes I’m a research nerd too, please keep the info coming!

  12. Bernadine says

    I’m certainly curious to see if Ajovy is helpful for fibromyalgia, and not just migraines. I just started on it a month ago as a migraine preventative. Since starting on it, I’ve had no migraines or severe headaches. Typically I suffer more migraines during the summer months than at other times of the year, This year has been much different and I started having multiple migraines that raised a red flag for my neurologist. So far medical cannabis has been the only effective treatment for the fibromyalgia.

  13. Dana Carpenter says

    Yes I love research too-so keep it coming !

  14. Denise says

    Yes, please continue with the research announcements. And, thank you for what you do for all of us fibro suffers.

  15. Katje Sabin says

    Yes, this is great and I hope you keep doing it! Thank you!

    • Rhonda says

      Rhonda Yes, I am very interested in all updates on Fibromyalgia. Thanks for all the information.

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  1. […] guys liked my first new research summary so much that I’ve decided to keep doing them every few […]

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