Rainbow at shoreline

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

IBS linked to bacteria in gut

Source:  originally distributed by CO-CURE

A research article that found a bacterial link to Irritable Bowel Syndrome (IBS) and bacteria in the gut.  Patients who had been treated with an antibiotic experienced relief of symptoms. Link to the original medical article—The Prevalence of Overgrowth by Aerobic Bacteria in the Small Intestine by Small Bowel Culture: Relationship with Irritable Bowel Syndrome (published in Digestive Diseases and Sciences,  May 2012, Vol. 57, Issue 5, pp. 1321-1329).

 

Dry Mouth Can be Detrimental to Your Health

by R. Sanderson in 2012.

Drs. Ava J. Wu (professor of orofacial sciences) and Troy E. Daniels (professor of oral medicine and pathology) at the University of California, San Francisco and contributors to The Sjögren's Book, Chapter 16 on "The Dry Mouth", report that 15% of adults in the U.S. suffer from dry mouth.

Dry mouth is a common problem for people with Myalgic Encephalomyelitis /Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM), often as a side effect from medications used for symptom management.

Antidepressants (especially those in the tricyclic family), muscle relaxants, antihistamines, some pain medications, and agents for overactive bladder are some of the drugs that cause dry mouth. This group of medications have anticholinergic properties—they work by targeting certain chemicals within the nervous system and their mechanism has an increased potential for certain adverse affects, including but not limited to the regulation of salivary function.

This type of dry mouth is classified as "medication-induced" and it has become increasing more frequent, even in the general population. Patients should report this side effect to their doctors and see if other medications can be substituted.

If switching medications does not help or if patients need to use certain medications, then it is very important to add adjunct therapies, partly for comfort but also to lessen long-term effects of continued dryness.


Dry mouth can also be a sign of underlying disease

Sicca syndrome or sicca symptoms are often listed as additional features in ME/CFS or FM—the term "sicca" refers to dryness of the eyes and mouth (i.e., it describes a symptom). When problems with dryness become chronic and are accompanied by other symptoms or new problems, including noticeable changes in dental/oral health, patients should be professionally evaluated to determine its cause.

The reason to do so is because dry mouth can be a sign of many underlying diseases such as certain types of diabetes or central nervous system diseases, infections, amyloidosis, sarcoidosis, and autoimmune disorders.

For example, dry mouth and dry eyes are the hallmark symptoms of Sjögren's Syndrome (SS) and dryness, in this case, is usually the result of disruption or malfunction of exocrine gland secretion. It can affect other organs and lead to serious problems without medical intervention and follow-up.

SS may be accompanied by other illnesses (i.e., connective tissue diseases, certain thyroid problems, celiac disease, and other autoimmune disorders), including FM. Although FM is not an autoimmune illness, about half of the patients with SS will report symptoms of FM (i.e., as exacerbation of pain, fatigue and cognitive dysfunction).

A comorbidity between FM and SS has been established (i.e., several studies show it may affect 47 to 55 percent of patients); therefore, it is not unreasonable that patients who develop new symptoms or worsening of existing symptoms get worked up for other potential conditions (i.e., doctors should not attribute everything to FM nor any other existing primary diagnosis).

[Comment: Even though ME/CFS is not mentioned as one of the diseases or conditions associated with SS in the book used for this article, leading researchers/clinicians have found SS in a subset of ME/CFS patients. The same advice would apply to patients with ME/CFS.]


Important functions and properties of saliva

The importance of saliva and adequate salivation is a health issue that often goes unnoticed.

In SS literature, saliva/salivary gland function is well covered (to a large extent due to its significant role in that illness) and is held with great regard as something that can greatly diminish one's quality of life once it is lost or severely impaired.

Saliva is essential in so many daily functions: eating, tasting food, chewing, swallowing and digestion. Lack of saliva or adequate lubrication makes speaking more difficult and voice quality can suffer.

Protein components in normal saliva have antibacterial, antifungal or antiviral properties which can decrease the bacteria that can stick to teeth.

Normal salivary flow has the ability to naturally wash away acids and bacteria and it provides a buffer against acidity, including gastric reflux.

Moreover, normal saliva contains beneficial levels of calcium and phosphate that help to replenish these elements to the surface of teeth. When this wonderful biologic fluid becomes compromised, so might be a person's health and well-being.


Problems caused by lack of saliva or chronic dryness

The more serious consequences and complications of poor salivation and chronic dryness may not be immediately recognized. Patients may find their mouth has become sensitive or painful, which could be caused by the thinning and irritation of oral mucosa.

Patients may find redness and crusting in the corners of their lips. They may suffer frequent fungal infections (i.e., patients with SS tend to present more often with erythematous candidiasis than typical "thrush"). In susceptible individuals, an overgrowth of this organism can cause their tongue to become red, grooved and feel raw (i.e., burning tongue).

Bad breath (halitosis) can develop from a build-up of odor-causing bacteria. People may have trouble with dentures because their tongue, from lack of oral lubrication, keeps pushing them out of place.

Progressive deterioration of teeth, increased cavities, particularly those found along the gum line of teeth, and increased periodontal disease are other frequent problems linked to chronic dry mouth.


Treatments to alleviate dry mouth and associated problems

Although dry mouth can have many diverse causes and require individualized treatments, most treatment strategies focus on improving oral comfort, alleviating symptoms, and finding ways to reduce further damage to teeth and oral tissues. Patients should always consult with their health care provider before initiating treatments on their own.

Current management recommendations include the following:

• Hydrate—drink water, in frequent, small sips that will help to hydrate and cleanse the mouth. Consume small amounts of water and limit total intake (to an amount that still provides adequate hydration) throughout the day, which may reduce frequent urination (i.e., it is not necessary to consume huge amounts of water for this type of hydration).

• Moisturize—try some of the products promoted for dry mouth, like rinses, gels, sprays or lubricants that are applied inside of the mouth or to the lips. These can be especially soothing when applied at bedtime, when traveling in a dry car or public transportation, or whenever water is not readily available.

• Chew—chewing gum or sucking lozenges helps to stimulate saliva production. The chewing motion by the jaw is therapeutic because it actually helps to activate the glands that will start to release saliva. Gum sweetened with Xylitol is generally recommended because bacteria in the mouth will not respond to Xylitol as it would to simple, refined sugar. (But do not use Xylitol in excess, as it can trigger gastrointestinal problems).

• Humidify—set up a room humidifier while sleeping because salivary function is decreased at night, plus there is a tendency for more mouth breathing at night.

• Oral hygiene—strict adherence to daily oral hygiene is strongly advised in order to remove bacteria/plaque throughout the day (so brush after meals and use floss). Sonic brushes are preferred to clean teeth and tongue. It may be necessary to see the dentist more often for check-ups and cleanings. (Some patients may go as often as every 3 months).

• Fluoride—use of high-concentration fluoride toothpaste (some need a prescription), topical fluoride applications (creams or gels that can be applied at home) and fluoride treatments (applied by the dentist) are recommended treatments because fluoride can repair and strengthen the surface of teeth. Remineralizing solutions, with high concentrations of calcium and phosphate, have been shown to repair mucosal tissues as well as repair/prevent dental caries. Most of these products are available by prescription and the prescribing dentist or oral specialist will examine the patient and determine if these products are actually helping.

• Stimulate—salivary output can be further increased with medications (i.e., pilocarpine or cevimeline). These are available only by prescription and may not be suitable for patients with certain conditions. Relief is usually temporary and dose-related.

• Dietary changes—minimize sugar/sugary foods, especially sticky sweet foods, spicy and salty foods. Avoid acidic and caffeinated beverages, alcohol and tobacco.

• Treat—identify/treat fungal infections. If patients have persistent burning sensation in their mouth, they should be cultured and treated with topical antifungal preparations.


Where can patients find help for dry mouth?

Very often, dentists will be the first health care providers to pick up on signs of dry mouth. They often receive samples of over-the-counter products formulated for dry mouth and may be more familiar with the newer topical fluoride products or moisturizing agents.

They can help to select the most effective products. More often than not, if other prescription medications are needed, they will refer patients to their primary care providers. These drugs (pilocarpine or cevimeline) have side effects and must be used with caution in some patients; therefore, it is better for the patients if these are prescribed and monitored by the primary doctor who is more closely involved with their medical history.

However, most doctors should be able to provide a basic screening for dry mouth by asking questions about when and how dry mouth bothers the patient. They can check their salivary glands for tenderness or enlargement and order lab tests to screen for certain antibodies associated with some autoimmune disorders.

Patients may be referred to ear, nose and throat (ENT) specialists or oral surgeons for further evaluation of dry mouth. Oral surgeons (or other oral specialists) can perform tests to measure salivary flow rate, examine the quantity and quality of saliva produced, and if warranted, do a biopsy of the minor salivary gland (along the inside of the lower lip) to check for presence of lymphocytes, a component of SS and other diseases.

Lastly, there are Dry Mouth Clinics available at some of the larger medical centers, dental schools, and hospitals that do a lot of research.

[Comment: The majority of the information presented in this article on Dry Mouth is based on the book cited below. However, some personal experiences and suggestions are included in the last section for patients and where they can go for help. The Sjögren's Book is recommended reading material and the clearly marked chapters help patients hone in on specific topics.]


References

1.Fox PC,  Singh ML, and Papa AS, "Treatment of Dry Mouth", in The Sjögren's Book. ed. Daniel J. Wallace, M.D. (New York: Oxford University Press, 2011), 201-209.

2. Vivino FB, "Diseases Associated with Sjögren's Syndrome," in The Sjögren's Book. ed. Daniel J. Wallace, M.D. (New York: Oxford University Press, 2011), 144-146.

3. Wu AJ and Daniels TE,"The Dry Mouth," in The Sjögren's Book. ed. Daniel J. Wallace, M.D. (New York: Oxford University Press, 2011), 157-167.
 
For additional information

National Institute of Dental and Craniofascial Research (NIDCR) provides information about Sjögren's Syndrome, ongoing research and the newest diagnostic criteria. (http://www.nidcr.nih.gov/OralHealth/Topics/SjogrensSyndrome/)

The Sjögren's Syndrome Foundation (SSF) is a credible source of information and it offers brochures, pamphlets, and information sheets that can be downloaded. (http://www.sjogrens.org/)

ME/CFS Research Recap 2012

This is a recap of studies and relevant articles on ME/CFS published during 2012  (formerly posted on our News around the Web page).

Half of CFS patients with high HHV-6 & EBV titers improve 30% or better on Valcyte: Montoya (ProHealth) Review of a recent article, "Response to valganciclovir in chronic fatigue syndrome patients with human herpesvirus 6 and Epstein-Barr virus IgG antibody titers", published by Jose G Montoya, et al, in the Journal of Medical Virology, Oct 10, 2012;84(12), pp 1967-1974.

Longitudinal investigation of natural killer cells and cytokines in chronic fatigue syndrome/myalgic encephalomyelitis (BioMed Central, open access article, as PDF) Brenu et al, a research group from Australia which also included Dr. Daniel Peterson, a well-known CFS/ME specialist from Nevada, USA, studied Natural Killer (NK) cell cytotoxic activity, NK cell subsets and cytokines in patients with CFS/ME over the course of a 12 month period. Their research was published in the Journal of Translational Medicine, 2012, 10:88, and for the entire period of time, they consistently found altered regulation of immunological function, in particular reduced cytotoxic activity of innate immune cells, in CFS/ME patients.

Constellation of 5 immune markers—may be diagnostic for post-mono ME/CFS (ProHealth) ProHealth provides a summary about a study published in the Journal of Translational Medicine, Sept. 13, 2012, by a group of ME/CFS researchers at clinics in Canada and several US states that looked at broad range of cytokines in patients who had developed an infection with the same pathogen, Epstein-Barr Virus (EBV), and remained ill at 24 months post infection. The study was able differentiate these patients from recovered control subjects by identifying an atypical immune response in post-infection group. 

Mitochondrial dysfunction and the pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) —link to original, full text article. [International Journal of Clinical and Experimental Medicine, published June 30, 2012; Volume 5, Issue 3:208-220] The authors of this study, Norman E Booth, Sarah Myhill, and John McLaren-Howard, found measurable mitochondrial dysfunction in white blood cells in all patients tested which correlated with the severity of the illness.

ME/CFS associated with later life non-Hodgkin lymphoma: Medicare statistics (ProHealth) An article based on a study, "Chronic fatigue syndrome and subsequent risk of cancer among elderly US adults" (Cancer, May 30, 2012) that looked at chronic immune activation or an infection in CFS which might explain this increased risk.

The NIH on ME/CFS in 2012: Pt II—the STUDIES!
 Cort Johnson, the creator of the Phoenix Rising website, writes about the challenges and rigorous procedures that investigators face when applying to the National Institutes of Health (NIH) for research grants. This investigative piece includes a comprehensive list of ME/CFS research and clinical trials, in progress or about to end, funded by the NIH.

A Double-Blind, Placebo-Controlled, Randomized, Clinical Trial of the TLR-3 Agonist Rintatolimod in Severe Cases of Chronic Fatigue Syndrome (PLoS ONE, Mar 14, 2012,  link to free, open access, full text article)  Research results from a 12-site clinical trial of rintatolimod (U.S. brand name,  Ampligen) show objective improvement in severe CFS. Rintatolimod has been used to treat ME/CFS in Canada and several European countries since the late 1990s, but in the U.S. it has been met by many delays and conflicts.

Chronic fatigue syndrome and impaired peripheral pulse characteristics on orthostasis—a new potential diagnostic biomarker (Physiological Measurement, vol. 33, p. 231-241, 2012) An in-depth evaluation of pulse wave analysis in CFS patients and its potential use as illness biomarker.   

Loss of capacity to recover from acidosis on repeat exercise in chronic fatigue syndrome: a case-control study (PubMed, Feb, 2012) Abstract of research published in the European Journal of Clinical Investigation that provides more evidence in how exercise impacts individuals with CFS differently from healthy controls.

Understanding the Immune System A good, basic  explanation, with illustrations, of the immune system response prepared by the National Institute of Allergy and Infectious Diseases (NIAID). Once at the NIAID site, click/select desired subtopic to view from the left side bar.


List of videos or audios released by researchers during 2012 on various topics pertaining to ME/CFS:

Now Available for Viewing A series of videos made by Dr. Kenneth Friedman for cfsKnowledgeCenter, during 2012, covering physiological aspects of ME/CFS, causes, biomarkers, and more. Once at the ME-CFSCommunity home page (part of the cfsKnowledgeCenter organization), please follow their instructions on how to sign in and access the videos and other valuable information.

Dr. Peterson Says ‘Hold On, There's Hope' (Pro-Health) A video interview (approximately 11 minutes long) of leading ‘chronic fatigue syndrome' clinician Daniel Peterson, MD by ME/CFS Alert (episode 26) co-host Llewellyn King

VIDEO: ME/CFS Alert # 31— Virologist Konnie Knox (ProHealth) Llewellyn King interviews Konstance Knox, PhD, a renowned virologist from Milwaukee, who has collaborated with Dr. Dan Peterson on ME/CFS research since 1996. She has a particular interest in the neurocognitive component of this illness and reviews her theories on the role of viruses in ME/CFS as well as Fibromyalgia.

VIDEO: ME/CFS Alert #32: Staci Stevens explains post-exertion malaise testing (ProHealth) Llewellyn King features Staci Stevens, an exercise physiologist at the Pacific Fatigue Lab in Stockton, CA, who describes the testing process for post exertion malaise (PEM) and explains how it can provide objective evidence of PEM.

 

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.