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The Massachusetts ME/CFS & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome) or FM (Fibromyalgia), their families and loved ones. The Massachusetts ME/CFS & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

Research articles

Oral Complications in Sjögren's Syndrome and Chronic Dry Mouth

By R. Sanderson

Dry mouth and various oral and dental complications are problematic for many people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), or Fibromyalgia (FM). Persistent dryness of the mouth could indicate an autoimmune illness like Sjögren's, linked to poorly functioning or damaged salivary glands, or be the result of side effects associated with many medications. Either way, it is a problem that warrants prompt medical or dental attention.

Dental caries, which refers to localized disease that causes decay and cavities in teeth, and oral problems have a tendency to progress much more rapidly when there is poor salivation and ongoing dryness. The goal of this article is to provide information about the serious and often devastating consequences of persistent dry mouth and treatments that can help to protect teeth and restore oral health.

Ed. Note: This article features information about oral complications, research highlights, and guidelines for people living with Sjögren's Syndrome and chronic dry mouth. Most of the information used in this article is based on a lecture given by Dr. Athena Papas for the Greater Boston Sjögren's Syndrome Support Group held on December 5, 2013 at Tufts Medical Center, Sackler Building, in Boston, MA. Additional data is included in order to provide some background information and more resources for our readers.

This material was researched and prepared by a layperson with ME/CFS and Sjögren's. Every effort has been made to accurately convey the information delivered by Dr. Papas and represent the research of other scientists brought up in this material. As always, consult with your health care provider for advice and further evaluation of new or worsening symptoms. Please see our Disclaimer

The first part of the article discusses issues around diagnosing Sjogren's Syndrome. If you suffer from dry mouth and are more interested in issues/treatments for this general condition, you may want to skip to the part of the article beginning with "How to minimize oral complications and maximize oral health and comfort."


Challenges of current diagnostic criteria and future screening methods

Athena Papas, DMD, PhD, is the Erling Johansen Professor of Research, the Co-Head of Geriatric Dentistry, and the Director of the Oral Medicine Department at Tufts University School of Dental Medicine. Dr. Papas has published numerous research papers based on her extensive clinical experience in Geriatric Dentistry, Sjögren's Syndrome, medically compromised patients, and xerostomia. At the December 2013 meeting, Dr. Papas discussed research updates and oral concerns and challenges of Sjögren's in her presentation titled, "Living with the Oral Complications of Sjögren's Syndrome."

Dr. Papas began her presentation with a short, educational video, "Does your patient have Sjögren's Syndrome?" released for dentists. The following is a brief description of Sjögren's taken from this video:

"Although hallmark symptoms are dry eyes and dry mouth, Sjögren's may also cause dysfunction of other organs such as kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and about ten percent of patients develop lymphoma of their salivary glands. All instances of Sjögren's are systemic, affecting the entire body."

Sjögren's can exist alone, as a primary condition, or with another connective or autoimmune tissue disease such as rheumatoid arthritis, systemic lupus erythematosus, scleroderma, and other conditions.


Early diagnosis of Sjögren's remains a challenge

Sjögren's is one of the most commonly under-diagnosed autoimmune diseases, often taking 5 to 8 years before a diagnosis is made.

While there are several techniques to assess salivary gland and ocular involvement, tests for certain autoantibodies in serum, and methods to demonstrate tissue changes, no single test is specific and sensitive enough to make a diagnosis.

Lack of international consensus regarding what defined positive evidence of the illness and ways to differentiate the two variants of the illness were some of the reasons for revision of the classification criteria for Sjögren's.

In April 2012, the latest version of the classification criteria was released by a group of international experts which included new details, rules and thresholds for tests and how these need to performed and interpreted. (Source: The Kelley's Textbook of Rheumatology, 9th edition).

The new criteria was intended, in part, to help ensure uniformity in participants selected for research.

To meet the classification criteria, there must be objective evidence in 2 out of 3 tests. For example, one of these tests must show one or more sites of inflammation per 4 mm squared area of glandular tissue for a positive result, according to the National Institutes of Health's release of April 2012, "New classification criteria released for research on Sjögren's Syndrome."

Clinicians and researchers who treat Sjögren's patients find these criteria can only detect patients with an established disease, that is, when their glands have already become damaged.

Patients will typically need to consult with at least two clinical specialties for evaluation and testing before a diagnosis can be made. The high cost of diagnostic tests, risks and discomfort associated with some of the procedures, and amount of time required to complete the testing/diagnostic process causes significant delay in diagnosis.

Continued disagreement and proposed changes to the 2012 classification criteria has gotten in the way of research for new treatments. All of the aforementioned issues underscore the importance of finding new ways to diagnose Sjögren's at an early stage of the illness.


Turning to saliva as a diagnostic tool

Saliva is often described by researchers and doctors as a mirror of the body and its well-being. It contains valuable diagnostic biomarkers which can help to screen for periodontal and other oral diseases, various cancers, systemic illnesses, and other conditions.

Other benefits of saliva-based tests are that they are less invasive and are rapid and cost-effective ways to screen for illness or detect early signs of illness.

Saliva analysis has been used, in some capacity, over the past 20 years to evaluate various medical problems; however, the field of research specifically devoted to disease detection and surveillance is called salivary diagnostics.

An investment made by the National Institute of Dental and Craniofacial Research (NIDCR) in saliva analysis over ten years ago, has generated significant advancement in salivary diagnostics. The NIDCR research initiative funded salivary diagnostic technology development at several research centers across the United States.

This research has led to discovery and development of a "diagnostic toolbox"— identification of components in human saliva, with biomarker profiles which can be used in the diagnosis of disease. (Source: A Primer on Salivary Diagnostics, published by the American Dental Association).


The future of salivary diagnostics

One of pioneers in salivary diagnostics is David T.W. Wong, D.M.D., D.M.Sc., the Associate Dean of Research at the University of California-Los Angeles (UCLA). Dr. Wong is also the Director at the UCLA Center for Oral/Head & Neck Oncology Research and Director of the Dental Research Institute at UCLA. Dr. Wong and the UCLA Dental Research Institute group have been instrumental in the development of salivary diagnostic biomarker profiles, which include: proteome, transcriptome, microRNA, metabolome and microbe. The Wong Lab/UCLA has established a research base that can serve as the scientific foundation for future dental and biomedical studies.

The UCLA research group has also developed statistical and informatics tools for salivary biomarker detection and validation. A prototype of this technology is a portable, integrated system that can rapidly detect multiple salivary proteins and other substances. This is an example of "point-of-care" technology that can be used at a healthcare provider's office to analyze oral fluid samples for disease or early signs of disease, eventually leading to chairside screening. Before this becomes common practice, scientists need to further investigate the potential diagnostic value of saliva and develop reliable and feasible technologies with high detection sensitivity. The future use and integration of salivary diagnostic technology may strengthen interdisciplinary patient care by changing the role that dentists and dental practitioners will play in healthcare. (Sources: A Primer on Salivary Diagnostics, American Dental Association. Salivary Diagnostics, The Wong Lab/UCLA School of Dentistry, The Dental Research Institute website).


Potential salivary biomarkers for Sjögren's

Research at the Department of General Dentistry at Tufts University School of Dental Medicine, Boston, MA has focused on both biomarkers and treatment of Sjögren's.

Dr. Athena Papas and Dr. Mabi Singh, who both treat high risk patients at the Tufts Dry Mouth Clinic, were two of several researchers from the Tufts University School of Dental Medicine to partake in a multi-center research study on salivary biomarkers. The aim of this study was to determine if biomarkers that could be used for diagnosis of Sjögren's are present in saliva.

"Discovery of putative salivary biomarkers for Sjögren's Syndrome using high resolution mass spectrometry and bioinformatics," published in the Journal of Oral Science, January 2012, found a biomarker that is unique to Sjögren's. They describe this biomarker as a "proteolytic peptide originating from human basic salivary proline-rich protein 3 precursor."

The research group concluded that the salivary biomarkers which they discovered, using the methods of detection and analysis detailed in the study, have the potential of serving as diagnostic/prognostic tools for Sjögren's Syndrome. A link to the full text of this research paper is provided at the end of this article.


How to minimize oral complications and maximize oral health and comfort

Dr. Papas has served as the principal investigator of numerous clinical trials and co-investigator of many research studies. She also possesses clinical expertise in the oral healthcare of geriatric patients, patients who are medically compromised as well as those with Sjögren's Syndrome and chronic dry mouth. Her combined and extensive research and clinical knowledge is evident in Dr. Papas' appreciation for the difficulties and complications that patients experience with Sjögren's/chronic dry mouth.


Common causes of tooth decay, dental problems, and oral pain

Saliva is essential for oral health. Once patients lose their saliva, they are at risk of losing their teeth. The effect of persistent dryness in the mouth may not always be understood by healthcare providers. Some, simply lacking knowledge in how to properly care for dry mouth, have given patients very poor advice. It is so important, but often very difficult, for patients to receive expert assistance at the early stages of their dental and oral complications. Many arrive at the Tufts Dry Mouth Clinic with teeth so eroded or broken that only jagged pieces protrude from the gums—the alarming discovery is many of these patients had extensive dental work, but it was no longer working. Dr. Papas tried to explained how this could happen.

Saliva is what keeps the enamel of teeth hard. Low amount of saliva production or loss of saliva leaves tooth enamel much more vulnerable to a wide range of dental problems. It is the weakening and erosion of tooth enamel which leads to many devastating complications.

The following list is a summary of the recognized as well as lesser known causes of tooth decay, deterioration, and erosion:

Acid in foods and beverages can affect teeth by accelerating demineralization of teeth (i.e., removing vital minerals). Frequency of consumption also matters—it is better to drink an acidic beverage all at once, rather than to keep sipping on it.

Acid reflux, found in at least half of Sjögren's patients, can cause stomach acids to backflow into the mouth, eat away at enamel, and even get at the pulp. Indications of acid backflow are soreness at the back of the throat, shiny amalgams, or signs of the enamel becoming eaten away around the amalgam. This acid can sometimes be so severe that it has completely worn away a person's teeth.

Brushing too hard can wear the teeth down (referred to as toothbrush abrasion) and brushing immediately after consuming acidic foods or drinks can make matters worse, by stripping away enamel.

Dryness cause teeth to dry out; when teeth dry out, they are much more likely to crack. Dryness can be the result of an underlying disease, like Sjögren's, or as a side effect from many drugs. Every effort needs to be made towards restoring moisture to the mouth.

Failed dental work, even in patients who have undergone a lot of dental work, is greatly due to inadequate preventative care. Work done on teeth that are already weakened or in an unhealthy condition or in a mouth with chronic dryness will simply not hold!

Fillings falling out of teeth often happens in teeth that are not hard enough. In most cases, it is not the filling but the teeth which have changed or deteriorated. This problem points back to causes of failed dental work. Getting a root canal or getting a tooth crowned does not eliminate future problems nor the need to continue protective therapy. In fact, teeth that have been worked on require even more attention and ongoing fluoride treatments or preventative measures. A tiny gap can easily develop along the edge of a crown and allow debris or bacteria to seep in.

Inflammation can occur in salivary glands as well as in the gingival margins of the teeth. In Sjögren's, it usually does not go below the gum line, like in periodontal disease.

Thick saliva; the watery part of saliva is the first to go in Sjögren's. Advanced dryness caused by the lack of saliva or damaged glands in Sjögren's can be so profound that a wooden tongue depressor will remain stuck on a patient's tongue.

Tooth Decay, particularly in Sjögren's, often occurs at the gum line, especially as gums start to recede. The root is much more sensitive to decay than the crown of the tooth. When there is a lot of tooth decay along the gum line, the tooth can shear right off.

Triggers of oral pain, sensitivity, and burning sensations

- Candidiasis: As saliva decreases, the development of candidiasis increases. A significant percentage (60%) of Sjögren's patients have candidiasis, especially the erythematous variant. This will present as red, irritated oral tissues and a red, raw tongue. It causes a lot of soreness and sensitivity inside the mouth. It can also develop as cracks at the corners of the mouth.

- Burning tongue/burning mouth: The lack of lubrication in the mouth can make the tongue become dry and rough due to friction against teeth and causes burning sensations. An interesting finding is that women have more taste buds than men. This difference may point to early means of survival that women were born with as they were the ones to determine if plants or foods were safe to eat by tasting them for their bitterness. When nerve endings on all of these extra taste buds become dry, irritated or inflamed, the patient will experience a burning mouth.


Treatments that make a difference and reduce tooth decay

Dr. Papas reviewed many treatment options which can help to minimize oral complications and maximize overall comfort and well-being. While there are many over-the-counter products advertised for dry mouth, she cautioned these products are primarily for comfort. They can be used, but they will not treat or protect the mouth or teeth. Treatments that make a difference, many times a prescription product, will help to stimulate salivation, restore moisture, protect and restore tooth enamel, and prevent anticipated complications.

The most important treatments and techniques for patients to start with are listed below:

Fluoride toothpaste – prescription-strength: Daily use of prescription-strength fluoride toothpaste is recommended (brand name, Colgate PreviDent). Research has shown that Sjögren's /dry mouth patients had less tooth decay with regular use of fluoride (i.e., as toothpaste, oral rinses, treatments provided by the dentist).

Fluoride varnishes: New ways to deliver fluoride, as a clear film that gets brushed on by the dentist. Discuss this option with your dentist.

Brushing techniques: Be sure to brush your teeth correctly. Don't scrub. Power toothbrushes with sonic technology are recommended for Sjögren's /dry mouth patients. These are found to more thoroughly remove plaque from teeth and gums.

Night-time routine: This should include brushing teeth with a prescription-strength toothpaste, followed by an application of MI Paste™ over the teeth, and then going to sleep (without rinsing). This regimen serves as an overnight treatment that will help remineralize and protect teeth.

Remineralize teeth by using a topical cream like MI Paste™ that contains calcium and phosphate. Place a small dab on a fingertip and spread it over teeth. Note: MI Paste contains RECALDENT™, a special milk-derived protein which helps to release the active ingredients. It may not be suitable for people with milk protein allergies. It is usually provided or sold by a dentist or an oral specialist, although it is sold at several online stores. Discuss this treatment option with your dentist.

Increase salivation with use of sialogogues: Sialogogues are agents or drugs that help to increase/stimulate salivation. Two of the most commonly used systemic sialogogues are pilocarpine (brand name, Salagen) and cevimeline (brand name, Evoxac). These are prescription drugs and may cause side effects in some patients. Research has shown that patients who had used Salagen for 4 years had much less tooth decay.

Increase salivation by chewing: Chewing gum can also help to stimulate production of saliva. Xylitol gum is preferred because it helps to generate moisture in the mouth. Too much xylitol can cause diarrhea; therefore, the recommended consumption is no more 8 pieces per day.

Improve salivation by massaging glands: See massage techniques to relieve painful or swollen salivary glands, described in detail, at the end of this list.

Chlorhexidine: an antimicrobial oral rinse, available by prescription (brand name, Peridex, Periogard) is used to treat swollen or infected gums.

Anti-inflammatories, like Celebrex, have been shown to reduce inflammation in periodontal disease. A short course may help Sjögren's/dry mouth during a flare.

Omega 3 fatty acids can help to reduce inflammation and improve salivation.

Lubricate the inside of your mouth with extra virgin olive oil or vitamin E capsules.

Increase dental cleanings/exams plus fluoride treatments—ideally, four times per year to effectively manage and care for Sjögren's /chronic dry mouth.

Check for early signs of lymphoma, very important to do in Sjögren's as lymphoma is detected in about 10% of patients— don't ignore little things—a warning by Dr. Papas.

Dental implants, consider implants if all else fails. There have been 200 implants done at the Tufts Dental Specialty Clinic with a 97% success rate. Implants can also serve as a base for dentures.


Massage techniques to relieve painful or swollen salivary glands

The parotid glands are located in the upper part of each cheek, close to the ear, and secretions from the glands have to pass through a complex pattern of ductwork. The parotid glands are encapsulated and have a thick fibrous coating. These glands can become obstructed with a mucus plug or stones in the ducts and cause swelling, pain and damage to the ducts.

Therefore, it is very important to keep the flow of saliva moving and good way to encourage flow of saliva is by massaging the glands.

For parotid glands, place two fingers behind the ear and slide them forward along cheek, while applying gentle pressure.

For the submandibular/sublingual glands, place two fingers under the jaw and slide them forward, along the edge of the jaw line to promote flow of saliva into floor of the mouth.

These are self-applied massage techniques that can help to keep saliva flowing. Warm compresses can be used to soothe painful glands.


 A promising treatment for dry mouth is in the pipeline

Dr. Papas ended her presentation with encouraging news about her work with Dr. Howard Green, at Harvard Medical School, who had developed artificial skin for severely burned patients. They have conceived a treatment plan for a moisturizing agent that would be delivered by way of a mucoadhesive film (attached to the mucosa) into the oral cavity. They have asked the Forsyth Institute in Cambridge, MA to help them create this product, and it has shown an interest in it.


References

"A Primer on Salivary Diagnostics", American Dental Association, 2009. 

"New classification criteria released for research on Sjögren's Syndrome," National Institutes of Health's New & Events, Release of April 11, 2012: http://www.nih.gov/news/health/apr2012/nidcr-11.htm.

Shiboski SC et al, "American College of Rheumatology classification criteria for Sjögren's syndrome: A data-driven, expert consensus approach in the Sjögren's International Collaborative Clinical Alliance Cohort", Arthritis Care & Research 64, no. 4 (2012): 475–487, doi: 10.1002/acr.21591. Full text of this article (Wiley Online Library) as PDF: http://onlinelibrary.wiley.com/doi/10.1002/acr.21591/pdf.

Spielmann N and Wong DT, "Saliva: diagnostics and therapeutic perspectives," Oral Disease 17, no. 4 (2011): 345–354, doi:10.1111/j.1601-0825.2010.01773.x. Full text of article as NIH Public Access Author Manuscript: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3056919/

St. Clair, EW. "Sjögren's Syndrome," in The Kelley's Textbook of Rheumatology, 9th ed. Gary S. Firestein, M.D., et al (Philadelphia: Elsevier/Saunders, 2012), Ch. 73.

Zoukhri D  et al, "Discovery of putative salivary biomarkers for Sjögren's syndrome using high resolution mass spectrometry and bioinformatics," Journal of Oral Science 54, no. 1 (2012). Full text of this article: https://www.jstage.jst.go.jp/article/josnusd/54/1/54_1_61/_pdf.

 

For additional information on salivary diagnostics/salivaomics

Dr. David T. Wong extends an invitation to anyone who would like to explore more of research done by the UCLA School of Dentistry, Dental Research Institute to visit their website, Salivary Diagnostics

A chart that illustrates the scientific development of salivary diagnostic toolboxes can be seen at: Salivaomics Knowledge Base (The Wong Lab, at the UCLA School of Dentistry, Dental Research Institute).

Listen to an informative Podcast by the American Association for Clinical Chemistry, September 2012 issue, that features Dr. David T. Wong. In this 15 minute interview, Dr. Wong reviews one of his recent research papers and explains how the evaluation of RNA in saliva has the potential of becoming an emerging diagnostic technology in disease detection: "The Human Salivary RNA Transcriptome Revealed by Massively Parallel Sequencing." The link for this podcast can also be accessed on the Home page of The Wong Lab /UCLA Dental Research website.

Dr. Anthony Komaroff Fall 2013 Lecture Video

The Massachusetts CFIDS/ME & FM Association was pleased and honored to welcome back Anthony Komaroff, M.D., Simcox-Clifford-Higby Professor of Medicine at Harvard Medical School, Clinician and Researcher, as the keynote speaker at our Fall 2013 Educational Lecture. The title of Dr. Komaroff's talk was "CFS Research: Recent Progress and Challenges." The lecture took place on Saturday, November 2, 2013 at the Morse Institute Library in Natick, MA.

YouTube links (YouTube versions can be only be accessed from this site or from the direct links; the videos are not searchable on YouTube):

Dr. Komaroff's 2013 lecture "The Latest Research on CFS" (56 minutes)

Dr. Komaroff's 2013 lecture Questions & Answers (37 minutes)

Some of the highlights from Dr. Komaroff's talk included advancements in gene technology and other methods which have improved the ability to research CFS and other illnesses. Dr. Komaroff explained that every gene can now be identified, but even more important, researchers can determine whether genes are turned on or off and detect changes or abnormalities in this process—these differences are what really matter because they may provide the link to the development of disease. He also reviewed several new treatments that have been studied scientifically and have shown encouraging results. Lastly, Dr. Komaroff emphasized the growing interest in CFS by scientists around the world.

Tips for living with ME/CFS and FM—in real life and online communities

Life for most patients diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia (FM) will become different from how it was prior to illness.

Different means that patients will have tested their limits and made changes to previous norms or expectations, to help them achieve a better quality of life.

While no one can completely escape negative or stressful situations, people with chronic illnesses may find that stress, pain and illness can become intertwined. Even getting through activities of daily living, an easy task for someone in good health, will usually pose a significant challenge for individuals with chronic illness.

So, it becomes essential that patients learn how to manage their time and energy as efficiently as they can, within the constraints of their illness. Patients will also need to examine and recalibrate their expectations.


Expectations

The first step is to determine which situations they can control or change from those they cannot; then, decide on how to best respond to these. Some things may be worth fighting for while others will need to be let go (e.g., much like the timeless message in the Serenity Prayer by Reinhold Niebuhr).

When it comes to expectations, patients need to consider the role of outside sources on their own expectations and personal assumptions, fears or beliefs which they themselves could be attaching to these. For instance, patients might be trying to live up to their pre-illness level or they might be doing more than they can realistically handle, for the sake of gaining approval.

It is important to remember that no one can be everything to everyone; people who push themselves and attempt to do this will only further jeopardize their health and self-esteem.

Realistic expectations are linked to time—the period of time when a patient tends to feel or function at their best. This window of time should be spent on high priority tasks or something meaningful to the patient—time is a precious commodity which needs to be used judiciously.


Making livable choices

Initially, patients may be quite concerned about their public persona, especially while they are learning to adjust to life with a chronic illness. They may struggle to redefine themselves because many were recognized primarily for their line of work—now what?

Therapists who coach people with chronic illnesses advise that patients make livable choices, seek a healthy medium and avoid going to extremes, like longing for ideal health or viewing themselves as hopelessly ill.

It is understandable that someone's situation can become very discouraging and when that happens, professional counseling or intervention could be very helpful. The choices that patients make will most likely be reviewed and readjusted to accommodate changes in the illness.


Growing beyond the illness

Another word of caution to patients has to do with patient's dependence on others. There is absolutely nothing wrong with asking for help with things that a person can no longer do and the amount of help needed will depend on the severity of the patient's condition.

On the other hand, relying on others too much may impose more limits and restrictions on the patient. Sefra Kobrin Pitzele, now deceased, wrote about dependence in her first book, We Are Not Alone: Learning to Live with Chronic Illness (Workman Publishing Company; 1st edition (January 9, 1986)), "If we allow it [dependence] to happen, we can let our spouse and children and parents and friends put us into a very small box in their minds and hearts—the box they reserve for pity. Sooner or later, we all want more love and respect than that. To get it, we must grow beyond our illness and relearn how to live with risks, anger, discomfort, challenges and everything else in life."

Ms. Pitzele used her own experiences (as a person living with lupus) to teach others with chronic illness how they could redesign their lives, so they could live them better. She encouraged patients to take pride in things they could still do and discouraged them from making excuses, getting angry or feeling apologetic about things they could no longer do.


Pick your battles

Nowadays, many people don't think twice about making snap judgments or remarks that are inappropriate or impolite—sometimes, even compliments are meted out without discretion or understanding.

There is a difference between telling someone that they look nice today or they are glad to see them and putting undue emphasis on "but you look so great" or "you don't look sick." It may be easier and better to overlook these sorts of remarks from strangers, by chalking it up to their ignorance or ill manners; however, people who are closer to a patient might do the same thing.

Anyone who bears the burden of illness on a daily basis will need to pick their battles wisely and not feed more energy or emotions into situations than they warrant. A simple honest reply may do, or using a little humor or creating a couple of clever quips can help patients end the situation in a way that can also let the other person know they made a faux pas.


When others cross the line

But there will be times when what is said by another person will be unacceptable, totally unfair or inaccurate—these should be addressed, to the best of the patient's ability.

People who are ill will typically become flabbergasted by these unexpected remarks and many won't be able to say anything on the spur of the moment. Depending on the individual, this can be turned into an opportunity to educate the other person, by responding in an honest and unapologetic way that speaks to the heart of the matter.

If the other person still does not get it, then it would be reasonable for the patient to remove themselves. Sometimes the other person could be someone's doctor whose remarks or conduct was very dismissive or in some way, offensive.

One option is to send a letter to the doctor about the incident after the patient has had a chance to quietly digest and reflect over the details of the incident. [But the patient shuld be aware that the letter will be made part of his/her record.]

The worst thing that patients or anyone can do is to respond by lashing out with their offensive remarks and/or stooping to the level of the offender.


Unspoken etiquette on social media

Since many people with chronic illnesses are involved in various online communities, it is important to address the need to be internet savvy. The internet is a wonderful resource for information, support, one's leisure and entertainment.

Social media allows housebound people to stay in touch with friends and family, but few might be aware of the "unspoken etiquette", especially on places like Facebook. Take parents, for example, who might be accepted as "friends" by their adult children on Facebook and assume this is a "warm welcome" for ongoing interaction with their kids on Facebook; well, it really is not (in most cases).

Adult children want to maintain their privacy, even on a social networking site, and use it as a place to primarily "hang out" with their peers. They won't be too thrilled to have their comings and goings be followed and "liked" by their parents.

Some things are implicitly viewed as being taboo, which include too many comments being posted by the parents on their kids' Facebook wall; clicking too often on the "like" button (which leaves the impression that Mom or Dad are watching their activity a bit too closely); "tagging" their adult children (or anyone else, for that matter) in photos without permission; and posting private family plans, news or other information on Facebook.

These features, "like", "tagging" and "share" are just some of the built-in tools on Facebook, which actually help to broadcast and/or further circulate a post or picture—in other words, these highlight activity on timelines, profiles, and in news feeds by the links that are automatically created and travel with the post or image.

When one stops and thinks about it, Facebook provides a window into the lives of adult children, relatives, friends, neighbors and other people which, in real life, does not readily exist. How much does it really matter to know what one's friends or neighbors are having for supper?


Leaving digital footprints

Some other things to consider is the amount of time spent in online communities, social media sites, or playing games. Whenever someone posts a comment or photo online, they may be hit with a slew of responses.

A lot of time can slip away, looking at the feedback and keeping the virtual dialogue going. It might be a good idea to monitor this and determine if some of this time should go to more essential things. Patients might also consider taking a social media sabbatical every couple of weeks.

People tend to be less reserved in what they blurt out on the internet than what they might say in person and this also applies to patients.

What one does online, stays online!

Social media is not a good place to vent one's personal issues, to post ongoing complaints or frantic comments, and to reveal too much information. Everyone's internet activity leaves digital footprints and a trail that others can easily follow, track someone's activity or interests, and/or end up in unknown destinations.

For instance, when someone "likes" a product or a business, the web browser will send information about that person's visit to a website. That person becomes automatically linked to that site and they might be displayed on that site or in their news feed.

People may not realize how a click here and there, has the potential of making them quite visible and getting targeted for a lot of unsolicited ads.

Overall, social media, message boards and blogs are "good things" providing people use these with a basic understanding of how things work as well as discretion and moderation.

Subcategories

Notice about names

The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS. 

Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.