By Jandra Mueller, DPT, MS, PHRC Encinitas
The recent study titled “Fusobacterium infection facilitates the development of endometriosis through the phenotypic transition of endometrial fibroblasts” by Muraoka et al. has generated significant attention and frenzy in the media.
The media coverage of this article has been intense, with headlines highlighting the potential breakthrough in understanding the pathogenesis of endometriosis, the role of bacterial infection, and how antibiotics may just provide us with the answer we’ve been searching for! If it were only that simple…
Numerous news outlets have covered the study’s results, emphasizing their own interpretation of the research findings and potential treatment approaches. However, it is worth noting that due to the article’s restricted access,* a considerable portion of the media coverage has led to misleading or incorrect interpretations of the actual research findings. Similar to the childhood game of telephone, the dissemination of this partially accurate information has resulted in its continuous circulation among numerous popular social media platforms.
*Restricted access: meaning that the research article in full-text is only available for purchase and is not available to the public for open access. In order to obtain a copy, you will have to pay money for access or you can always email the author and oftentimes, they will give you individual access.
While this study has proposed another potential factor for the development of endometriosis, it’s important to note that the findings of this study are preliminary, and further research is necessary to confirm and expand upon these results, which the authors clearly state in the publication as well as an interview that you can find online.
However, the media frenzy surrounding this article highlights the significance of addressing endometriosis, a condition that affects many individuals worldwide, and the potential impact of novel research findings on improving the understanding of this disease and potential treatment options that offer more than just hormonal suppression. To have more people talking about endometriosis is not a bad thing, but the viewpoints and what is often stated in news and media outlets may become problematic, especially when we are making conclusions and assumptions without all of the information.
As with any scientific study, it is crucial to approach the findings critically, consider the study’s limitations, and await further research and validation before drawing definitive conclusions. It is clear that the interpretation of this article has created a clear division among those that truly understand the complexity of this disease, and those that do not. These interpretations may seem very exciting to those who do not understand the complexity of this disease, but are “insulting and condescending to suffering patients and expert providers who have dedicated their life to studying the disease.“
On the other side are those that have prominent voices in this community and naturally, this media coverage likely did not sit well. It has been disappointing to see opinions voiced as fact, when in fact, many of the statements that were made also lacked understanding of the actual research, and just opposed the views of the news outlets. This may also pose risks and create barriers for future research endeavors in the field.
There were a number of claims from those of us in the community that were disappointing and unfair to say. We absolutely need to be critical when looking at new information, and we encourage everyone to do that. The beautiful thing about this population is that often, patients with endometriosis know so much more about their disease than many providers, because they have to. A few things that were consistently stated are important to highlight and break down.
The Problem:
News media outlets are often purposely framed to meet a certain narrative meant to report focusing on exciting and attention grabbing details of the study. These reporters are not medical providers and want to report on key findings and highlight what they feel will often create engagement, whether that is positive or negative, engagement is viewership.
The Washington Post was heavily criticized by some in the endo community for reporting on a “flawed study,” and they should be more rigorous about posting or publishing “careless information” because the “researches did not have the basics of endo correct and endo could only be stopped by removing organs.” While the WaPo article does make the claim that the only cure for endo is removing a person’s organs, the authors did not. Aside from this, these claims are far-reaching and overall, the WaPo coverage otherwise did a decent job in reporting what this study means: a starting point to look further very clearly, also reporting on the limitations of the clinical applicability of the findings. As far as the claims of “flawed” or “trash research” this is simply false. Below, we have laid out guidelines in assessing quality of the research, which this study meets at every point.
Aside from the WaPo coverage, other media outlets have reported on the study, some less accurately. Remember, these reports are often brief, and misrepresent the actual research findings, offering highlights of very complex topics which are compiled into summaries limited by a word count. This leads to frenzy and evokes emotion from those passionate about the disease, some of which have a loud public voice. This in turn can either fuel the fire to those that have been dismissed and gaslit causing reactive posts which also have their own limitations and are not being objective, though often well meaning.
What is most important is that you learn to be critical of information from third parties, and make your own opinion based on the actual data from the source. Of course, as non-medical providers, and even if you are in the field, this can be a daunting task. Relying on these outlets for true information is hard, especially if generally they are a trusted source, it is still important to approach these topics with a critical mind. Very extreme viewpoints almost never provide accurate facts and are loaded with personal bias.
A few reminders:
- Extreme viewpoints and statements are almost never accurate, there is usually another perspective to consider
- If you cannot engage with others on these topics and better understand their reasoning, there is a reason for that, be critical
- Ask questions, be open minded, if they do not provide a reasoning for their claims or an option to have a conversation and open discussion, this may be a big red flag.
Level of evidence vs. Quality of evidence – these terms are not synonymous
The next issue are the major claims that this research was extremely flawed and was low quality. Level of evidence and quality of evidence are two very different things to be aware of. You may have low level evidence that is high quality, and high level evidence that is low quality, the two are not synonymous.
The level of evidence refers to the hierarchy or classification of different types of studies based on design and potential for bias. For example: systematic reviews and meta-analysis are the top of the chain followed by randomized controlled trials, cohort studies, case reports, etc. The level of evidence helps to determine the strength of the conclusion and often-times how clinically useful it may be.
The quality of evidence refers to the overall methodological soundness and reliability of the study looking at several variables which determine how flawed or biased the study may be and what limitations it may have based on these factors. Both of these factors are important in utilizing the findings of the research.
This study was not a high level of evidence due to the nature of what was being studied, but was actually very high quality. Overall, we can utilize the findings for further research, but the findings are limited and not clinically applicable until higher level studies are performed. To give a more detailed breakdown of the quality of this study, to give more specific information on this statement.
What makes good research?
Quality of research: the level of evidence for this article is naturally low, because of the type of study they conducted. They used animal models, which is often done in preliminary research to prove your hypothesis before you can ethically study humans, especially if there is a treatment involved. Many types of studies start this way, to build a foundation for future research, not meant to be clinically relevant immediately. Low level evidence can still be good research. All that means is that there is a long way to go before being able to clinically apply the findings.
Study design: the methodologies and techniques to address the research question or hypothesis effectively.
- The authors did this very well, they did appropriate techniques and explained in great detail how and why they did what they did. This is called reproducibility, and is marked higher if the methods are well documented for others to replicate the work, which is important if there is meaning in the outcomes, so that others can validate these findings.
Sample size and selection: there should be a predetermined number set so that they ensure the results are statistically meaningful and representative of the target population.
- The authors in this study did not do a statistical analysis to find the sample size; however, they note in the study that the sample size was based on estimates from pilot experiments and previously published results. Ideally, they should do their own, but they had a method and they explained that, which is also important.
Control groups and comparisons: You need a group to make a comparison too, ideally with minimal variables to control the experiment and compare results to make sure findings were not just by chance, or for some other unknown factor.
- This study did have a control group in both their human tissue samples as well as their animal studies. That being said, one of the issues people had with this study is that they compared tissue samples from women undergoing hysterectomies that did not have endometriosis, but had other issues such as fibroids, cancer, and adenomyosis. The gold standard would of course be tissue samples from uteri that do not have any sort of disease, but that would just be unethical – ask women to undergo a hysterectomy for no reason just to study their tissues? In my opinion, this was a feasible option.
Data collection methods: Studies should use appropriate tools to collect data in a consistent and systematic manner.
- The researchers not only did this, but a significant amount of their research paper is discussing and describing these methods, this also plays into reproducibility. They are transparent every single step in their methods.
Data analysis: Proper statistical analysis should be used, certain statistics are necessary to run depending on the type of data you have.
- Since I am not a statistician, though as a healthcare provider we do take classes on how to do this, it is less important for what we are discussing. What is important is that the authors are transparent about the statistical analysis used, which means anyone interested can double check that they did the correct work. Despite transparency, researchers use the wrong analysis and this can contribute to a lower quality of study. In general, if they are being transparent and an error is found, it is less likely they intentionally ran the wrong analysis.
- Considering this article has strict guidelines on data and statistical analysis, it is fair to say that these standards were met, in-line with the above point that it is very easy for someone to verify their statistics.
Peer Review and Publication: prior to publication, studies often go through a rigorous peer-reviewed process, especially in reputable scientific journals. These studies generally have a higher level of quality. This process ensures that the study has undergone critical evaluation by experts in the field thus improving the overall validity and reliability of the findings.
- This publication was in the Science Translational Medicine journal, which has very strict guidelines in regards to all of the above areas mentioned which you can find in detail on their website. This study meets this guideline.
Ethical considerations: this includes obtaining informed consent from participants, maintaining participant confidentiality, and adhering to ethical guidelines. This protects the rights and well-being of study participants and contributes to the overall integrity of the study. This is true not only for human participants, but animals as well.
- The authors meet this criteria and describe their process for these experiments within the research study.
Furthermore, the authors fully disclose the limitations of their research in the research article itself, and in several of the interviews covering this topic. The ideal of bacteria playing a role in the development of endometriosis is not a new topic and there have been other studies investigating this. This offers information about a correlation, not a causation, of the origin of endometriosis. The bottom line and takeaway from this study is that they found a bacteria that caused a cascade of inflammatory responses and gene expression that grew endometriosis lesions in mice. Because there was significant differences in the human tissues in regards to this bacteria, along with other studies finding similar results in regards to other bacteria, future studies looking into why those with endometriosis are more susceptible to opportunistic pathogens and further studies exploring the role these pathogens play in regards to endometriosis is warranted based on the findings of this, and other studies on this topic.
Looking for more information about Endometriosis or wanting to stay up to date on the latest research? Head over to Instagram to follow our friends at iCareBetter, or their website which has an Endometriosis Specialist Directory! We encourage you to also subscribe to their podcast, iCareBetter: Endo Unplugged, with their host (our physical therapist) Jandra Mueller, DPT, MS!
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FAQ
What are pelvic floor muscles?
The pelvic floor muscles are a group of muscles that run from the coccyx to the pubic bone. They are part of the core, helping to support our entire body as well as providing support for the bowel, bladder and uterus. These muscles help us maintain bowel and bladder control and are involved in sexual pleasure and orgasm. The technical name of the pelvic floor muscles is the Levator Ani muscle group. The pudendal nerve, the levator ani nerve, and branches from the S2 – S4 nerve roots innervate the pelvic floor muscles. They are under voluntary and autonomic control, which is a unique feature only they possess compared to other muscle groups.
What is pelvic floor physical therapy?
Pelvic floor physical therapy is a specialized area of physical therapy. Currently, physical therapists need advanced post-graduate education to be able to help people with pelvic floor dysfunction because pelvic floor disorders are not yet being taught in standard physical therapy curricula. The Pelvic Health and Rehabilitation Center provides extensive training for our staff because we recognize the limitations of physical therapy education in this unique area.
What happens at pelvic floor therapy?
During an evaluation for pelvic floor dysfunction the physical therapist will take a detailed history. Following the history the physical therapist will leave the room to allow the patient to change and drape themselves. The physical therapist will return to the room and using gloved hands will perform an external and internal manual assessment of the pelvic floor and girdle muscles. The physical therapist will once again leave the room and allow the patient to dress. Following the manual examination there may also be an examination of strength, motor control, and overall biomechanics and neuromuscular control. The physical therapist will then communicate the findings to the patient and together with their patient they establish an assessment, short term and long term goals and a treatment plan. Typically people with pelvic floor dysfunction are seen one time per week for one hour for varying amounts of time based on the severity and chronicity of the disease. A home exercise program will be established and the physical therapist will help coordinate other providers on the treatment team. Typically patients are seen for 3 months to a year.
What is pudendal neuralgia and how is it treated?
Pudendal Neuralgia is a clinical diagnosis that means pain in the sensory distribution of the pudendal nerve. The pudendal nerve is a mixed nerve that exits the S2 – S4 sacral nerve roots, we have a right and left pudendal nerve and each side has three main trunks: the dorsal branch, the perineal branch, and the inferior rectal branch. The branches supply sensation to the clitoris/penis, labia/scrotum, perineum, anus, the distal ⅓ of the urethra and rectum, and the vulva and vestibule. The nerve branches also control the pelvic floor muscles. The pudendal nerve follows a tortuous path through the pelvic floor and girdle, leaving it vulnerable to compression and tension injuries at various points along its path.
Pudendal Neuralgia occurs when the nerve is unable to slide, glide and move normally and as a result, people experience pain in some or all of the above-mentioned areas. Pelvic floor physical therapy plays a crucial role in identifying the mechanical impairments that are affecting the nerve. The physical therapy treatment plan is designed to restore normal neural function. Patients with pudendal neuralgia require pelvic floor physical therapy and may also benefit from medical management that includes pharmaceuticals and procedures such as pudendal nerve blocks or botox injections.
What is interstitial cystitis and how is it treated?
Interstitial Cystitis is a clinical diagnosis characterized by irritative bladder symptoms such as urinary urgency, frequency, and hesitancy in the absence of infection. Research has shown the majority of patients who meet the clinical definition have pelvic floor dysfunction and myalgia. Therefore, the American Urologic Association recommends pelvic floor physical therapy as first-line treatment for Interstitial Cystitis. Patients will benefit from pelvic floor physical therapy and may also benefit from pharmacologic management or medical procedures such as bladder instillations.
Who is the Pelvic Health and Rehabilitation Team?
The Pelvic Health and Rehabilitation Center was founded by Elizabeth Akincilar and Stephanie Prendergast in 2006, they have been treating people with pelvic floor disorders since 2001. They were trained and mentored by a medical doctor and quickly became experts in treating pelvic floor disorders. They began creating courses and sharing their knowledge around the world. They expanded to 11 locations in the United States and developed a residency style training program for their employees with ongoing weekly mentoring. The physical therapists who work at PHRC have undergone more training than the majority of pelvic floor physical therapists and as a result offer efficient and high quality care.
How many years of experience do we have?
Stephanie and Liz have 24 years of experience and help each and every team member become an expert in the field through their training and mentoring program.
Why PHRC versus anyone else?
PHRC is unique because of the specific focus on pelvic floor disorders and the leadership at our company. We are constantly lecturing, teaching, and staying ahead of the curve with our connections to medical experts and emerging experts. As a result, we are able to efficiently and effectively help our patients restore their pelvic health.
Do we treat men for pelvic floor therapy?
The Pelvic Health and Rehabilitation Center is unique in that the Cofounders have always treated people of all genders and therefore have trained the team members and staff the same way. Many pelvic floor physical therapists focus solely on people with vulvas, this is not the case here.
Do I need pelvic floor therapy forever?
The majority of people with pelvic floor dysfunction will undergo pelvic floor physical therapy for a set amount of time based on their goals. Every 6 -8 weeks goals will be re-established based on the physical improvements and remaining physical impairments. Most patients will achieve their goals in 3 – 6 months. If there are complicating medical or untreated comorbidities some patients will be in therapy longer.