12.05.2019

New fibromyalgia & Lyme research studies (December 2019)

New #fibromyalgia & #Lyme disease research studies (December 2019) | Fed Up with Fatigue

It’s time for another research update! The latest fibromyalgia and Lyme disease studies entered into the federal government’s ClinicalTrials.gov database are summarized below.

As usual, you’ll notice a great disparity between the number of fibromyalgia studies vs. those for Lyme. Thank God for the supplement companies because otherwise the Lyme community would be completely left out in the cold (as usual). I’m praying Congress will pass the TICK Act so more federal funding will be earmarked for Lyme research. Find out how you can support the TICK Act here!

As for fibromyalgia, there are several new research studies underway for potential pharmaceutical treatments, most of which I’ve written about previously in this post. You’ll also notice the usual mix of gadgets, supplements, psychological methods and exercise programs being tested out as possible treatments.

Are you excited by any of the studies mentioned below? Share in the comments!

New fibromyalgia studies

1.

A study to evaluate the efficacy and safety of TNX-102 SL in patients with fibromyalgia (RELIEF)

During a 14-week study, Tonix Pharmaceuticals will test out a low-dose, sublingual version of cyclobenzaprine, a common muscle relaxer, to determine if it will reduce fibromyalgia pain and other symptoms.

(Read more: Four new fibromyalgia drugs are under development)

2.

Anti-CGRP for inflammation and pain modulation in small fiber neuropathy/fibromyalgia

Duke University and Eli Lilly & Co. are partnering to determine if three injected doses of galcanezumab will relieve fibromyalgia symptoms. Galcanezumab is currently sold under the brand name Emgality and is FDA approved as a treatment for migraines.

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

3.

Efficacy and safety of NYX-2925 in subjects with fibromyalgia

Pharmaceutical company Aptinyx is conducting a study to determine if NYX-2925, a novel NMDA receptor modulator, is an effective treatment for fibromyalgia. About 300 fibromyalgia patients will participate in the trial, which will be held at 25 clinical sites around the United States.

(Read more: Four new fibromyalgia drugs are under development)

4.

Ambulatory infusions of lidocaine and ketamine for management of chronic pain

From the ClinicalTrials.gov summary: “The aim of the present study is to evaluate the effectiveness of the current routine practice of lidocaine-ketamine infusions conducted at Allevio Pain Management Clinic, a large, outpatient, community-based chronic pain management facility [based in Ontario, Canada]. Lidocaine-ketamine infusions are prescribed to patients that have pain that is considered to be neuropathic for which standard anti-neuropathic medications have been ineffective or poorly tolerated by patients.”

(Read more: An overview of ketamine and fibromyalgia)

5.

Virtual reality as a new therapeutic tool for chronic pain

About 60 Swiss fibromyalgia patients will participate in a study to determine if virtual reality can reduce chronic pain.

(Read more: Virtual reality | A possible benefit in pain management)

6.

Molecular response to custom manual physiotherapy treatment of chronic fatigue syndrome (CFS) & fibromyalgia

Spanish researchers will study if eight sessions of physical therapy (i.e. physiotherapy) performed during twice-a-week sessions will improve symptoms in women with both ME/CFS and fibromyalgia.

(Read more: Physiotherapy, occupational therapy and physical therapy in fibromyalgia syndrome)

7.

Can a relaxometer improve discognition in fibromyalgia patients? (Fibrorilax)

Italian researchers will determine if the use of a device called a relaxometer may improve the cognitive functioning of patients with fibromyalgia. The relaxometer is “designed for the physical rehabilitation of patients with functional problems of upper limbs. It works by moving passively the patient’s fingers in a gradual way (with different speeds) in all directions of space, which is innovative compared to similar machines already on the market,” according to the ClinicalTrials.gov summary.

8.

Fibromyalgia different approaches: Acupuncture vs Migratens (FrIDAy)

Vittorio Schweiger, a researcher from the University of Verona in Italy, is heading up a fibromyalgia study comparing the effectiveness of twice-a-day acupuncture sessions vs. taking Migratens, a supplement containing magnesium, CoQ10, niacin and other ingredients.

9.

A comparison of the effect of two types of whole body vibration on fibromyalgia

Spanish researchers from the University of the Balearic Islands will “compare the effectiveness of two types of body vibration platform, one vertical and one rotational, through a 12-week training in patients with fibromyalgia,” according to the ClinicalTrials.gov summary.

(Read more: Potential benefits of whole body vibration in the management of pain and physical function

10.

Biofeedback training, efficacy evaluation of fibromyalgia treatment, a pilot study

University of Cagliari researchers in Italy will “verify the feasibility of an HVR biofeedback training protocol in patients with fibromyalgia, and also to verify improvement induced by the technique in relation to: quality of life; quality of sleep; perception of pain; depressive symptomatology; anxious symptomatology,” according to ClinicalTrials.gov.

Note: I believe HVR, the acronym quoted above, is incorrect. I think the author of the summary likely meant HRV, which stands for heart-rate variability.

(Read more: A meta-analysis and a systematic review of randomized controlled trials on the efficacy of EMG- and EEG-biofeedback in fibromyalgia syndrome)

11.

Augmentation of EMDR with tDCS in the treatment of fibromyalgia

Parc de Salut Mar researchers in Spain are studying if Eye-Movement Desensitization and Reprocessing (EMDR), a trauma-based form of psychotherapy, in tandem with transcranial direct current stimulation (tDCS), a non-invasive stimulation technique used for chronic pain, can reduce pain, depression and anxiety associated with fibromyalgia.

(Read more: Extended course of home-based tDCS effective for fibromyalgia pain relief)

12.

An emotional regulation brief procedure (PbRE) for fibromyalgia using ICT’s (PbRE)

Spanish researchers will evaluate “the efficacy of a Brief Procedure of Emotional Regulation for Fibromyalgia (PbRE), … a word reading task [implemented] through an app developed for smartphones. The patient will choose emotional positive and negative words related to personal and clinical characteristics. This exercise has been shown useful in analogous tasks in relational frame theory (Hussey y Barnes-Holmes (2012) or in bias computer training (Salemink et al., 2014),” reads the ClinicalTrials.gov summary.

13.

Efficiency of an optimized care organization for fibromyalgia patients | The FIMOUV 2 study

Around 330 fibromyalgia patients will participate in a Netherlands study to compare the effectiveness of a hospital-led physical activity program vs. at-home physical activity. The hospital program will involve two weekly exercise sessions for one month followed by two months of activity via an outside sports organization or club. Patients doing the at-home program will receive routine advice and recommendations on autonomous physical activity.

(Read more: Science, fibromyalgia and exercise)

14.

Quality of life and the effects of tailored health coaching in fibromyalgia patients

Taipei Medical University researchers in Taiwan are carrying out a two-prong fibromyalgia study. First, the symptomatology of about 300 patients will be assessed in an effort “to identify phenotypes of patients with fibromyalgia according to symptom clusters and to compare differences in quality of life among different phenotypes,” reads the ClinicalTrials.gov summary.

Then, researchers will recruit around 110 fibromyalgia patients to “examine the effects of technology-assisted and tailored health coaching in comparison to telephone support on health status, [quality of life], pain catastrophizing and self-efficacy…”

(Read more: Coaching for fibromyalgia)

15.

Evaluation of respiratory function in fibromyalgia

Uppsala University researchers in Sweden will conduct “an observational cross sectional study with the purpose to examine respiratory function in people with fibromyalgia and compare with age-matched controls,” according to ClinicalTrials.gov.

“This study will evaluate respiratory function in people with fibromyalgia and whether or not breathing patterns in this patient group can be explained by stress, emotional or biomechanical variables. In addition, [the study will] examine the relationship between physical ability and lactate values.”

(Watch: The importance of oxygen to our body and its ability to heal)

16.

Randomized controlled trial of PENFS for fibromyalgia

This Veterans Affairs (U.S.) study will assess if percutaneous electrical nerve field stimulation administered via Innovative Health Solutions’ BRIDGE device could be used an a non-opioid-based pain reliever for fibromyalgia.

New Lyme disease research studies

1.

Treating post-Lyme disease syndrome with acetogenins

This study from Optimal Health Research will assess the effectiveness of acetogenins in treating post-Lyme Disease syndrome using a supplement called ReaLife+.

2.

A novel nutraceutical to combat post-Lyme disease syndrome

This second study from Optimal Health Research is an expansion of the study mentioned above in which around 100 Lyme patients will take ReaLife+ as a treatment for post-Lyme disease syndrome.

3.

A non-interventional pilot study to explore the role of gut flora in Lyme disease

From ClinicalTrials.gov: “The goal of this research study [conducted by ProgenaBiome] is to better understand how the genetic information in [a] subject’s microbiome correlates to the information provided in surveys and in medical records regarding Lyme disease.”

(Read more: Six things you can do to improve your gut health when you have Lyme disease)

Now it’s your turn: What do you think of these studies? Are you hopeful or excited by any of them? If not, what do you wish they’d study instead? Share in the comments!

You might also like…

August 2019 fibromyalgia & Lyme research update

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

May 2019 fibromyalgia & Lyme research update

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

Comments

  1. Camille Todor says

    I think as more time goes on and the Government and Medical communities (establishment types) continue to ignore or punish Lyme Patients-we must think there must be a reason-the more I think that the information in the book “Bitten” may be the primary problem. If the Government experimented with bio-weapons in the WWII period and after-weaponizing insects-it makes sense that they would not want to admit that there is something about Tick bites causing illnesses they do not want to admit are happening!!!!!!

    • Donna Gregory/FedUpwithFatigue.com says

      I agree w/ you, Camille. I think the government can’t admit ANYTHING … not even that CHRONIC Lyme is a real disease … b/c if they admit even one little bit, then they’re scared the rest of it is going to trickle out. That book is amazing! Kris Newby is one of my heroes! I run a fibromyalgia group on Facebook, and I’m sure you know the connection between Lyme and fibromyalgia. Yesterday I had a woman who had just been diagnosed w/ Parkinson’s. You know immediately what I thought, right? Her “fibro” and “Parkinson’s” is likely undiagnosed Lyme. Of course, she claimed there’s no way she could have Lyme b/c she’d been tested and the test came back negative. Then I had to take the time to educate her on the issues w/ the testing … again. I literally explain the issues w/ the testing several times a week to people. I don’t mind doing that b/c I always want to help people, but as I was doing it … again … for this women newly diagnosed w/ Parkinson’s, I just became angrier and angrier at the fact that I have to do that. How dare our government continue to push testing that they KNOW FOR ABSOLUTE FACT IS NO GOOD? They KNOW it misses around HALF of all Lyme infections! They know that! There’s no doubt whatsoever! There are so many people – many of them diagnosed w/ conditions like fibro, chronic fatigue syndrome and MS, who are suffering when many of them (not all) likely have a TREATABLE disease. I’m not saying Lyme is EASY to treat, but it’s at least treatable – unlike fibro where doctors just try to cover up symptoms w/ pills. How many people are out there sick, missing out on their lives, b/c that crappy testing didn’t show Lyme in their blood? It infuriates me to no end. And it infuriates me that I’m also a victim of this b/c maybe I would be better now if my Lyme infection had been caught sooner and treated, but it wasn’t b/c of that horribly inaccurate test. Sorry to get on my soapbox, but I just don’t understand how this farce can continue.

  2. Patricia says

    Hi Donna
    I would just like to make a comment about cyclobenzaprime
    It definitely helps my pain level although it does have some side effects I have to deal with. I only take it when the pain gets really bad. Im sure their study will come out positive in favor of the drug.

    • Donna Gregory/FedUpwithFatigue.com says

      Hi Patricia, I took cyclobenzaprime a few months after I was first diagnosed w/ fibro. The biggest issue I had w/ it is that it made me so super sleepy the next day, so like you, I would only take it when I was in bad shape and basically just wanted something to help me pass out and sleep. This newer version that’s being tested is an extremely low dose and is sublingual, so that should eliminate the issue w/ daytime sleepiness. If it makes it to market, I might actually ask my doctor is I can try it! It did help me to sleep.

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