Rainbow at shoreline

The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & 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.

After carefully arranging an assortment of pillows, finding comfortable positions for one's head, shoulders and back, and finally being able to let one's body melt into the bed, sexual activity is likely the last thing to appeal to someone with ME/CFS or FM. For many, sleep will win "hands down" over sex.

Chronic illness disrupts most daily functions and becomes an intrusive bed partner. The pain, fatigue/exhaustion and multiple other problems that are part of ME/CFS or FM tend to wear a person out. Medications used to manage these problems can be very sedating and some of these may also decrease libido.

Other factors that may squelch that loving feeling are worries about feeling more pain or triggering other symptoms, anxieties about performance or response, or finding that sex takes too much energy. Therefore, it is easy to understand the physical and emotional ramifications of these illnesses on intimacy and relationships.

Sending the other spouse or partner off with yet another "rain check" will not be a healthy resolution to what already might be a fairly sensitive issue. Much like the person who is ill and needs to have his or her feelings be taken into consideration, it is only reasonable and fair to extend the same to the other spouse or partner who might feel rejected and frustrated. But things don't necessarily have to stay this way.

There are things that individuals can do to overcome some of these obstacles. Dr. Mark J. Pellegrino, a physician who specializes in FM but is also someone with that illness, wrote a featured article, Sex and Intimacy in Fibromyalgia (but clearly this can easily apply to ME/CFS), for the WebMD Fibromyalgia Community earlier this year. He encourages individuals to try and redirect their attention to the positive aspects of sexual intimacy.

Some of the many benefits of sex, according to Dr. Pellegrino, is how it "increases our body's endorphins; it improves blood flow, removes toxins from cells, and boosts our immune system; it results in stretching and then relaxation of our muscles; it reduces stress; and it re-connects us emotionally and intimately." Of course, the situation for couples will not change simply by changing their focus. This will be something both parties will need to work towards, with a sincere interest to restore or improve this aspect of their relationship.

Communication plays a key and vital role. Dr. Pellegrino urges couples to talk openly and caringly with each other about their fears and desires, especially how the illness has interfered with intimacy. During this process, it is also important to pinpoint specific problems which could be improved by medical treatment.

Dr. Pellegrino wants to discourage people from blaming it all on the "fibro" (or ME/CFS) and thinking there is nothing they can do about it. Instead, he advises that these problems be reviewed with the doctor, for it is possible that a different medication could be prescribed with less effect on one's libido, or to have something be prescribed for muscle spasms or pain, and to review if medications or products that enhance sexual response might be suitable in some cases.

Other suggestions are to figure out the best time to get together (i.e., nighttime may not necessarily be the right time for individuals who are struggling with pain and sleep disorders), allow plenty of time to lead into sexual activity and to try different positions which could help to reduce pressure on painful areas.

He also encourages couples to explore different ways to be comfortable with each other as well as other forms of sexual activity. Dr. Pellegrino suggests that individuals consider professional counseling if there appears to be a deeper problem, below the surface, which continues to interfere with sexual intimacy or does not respond to modifications or medical treatment.

Aside from the medical perspective on sex and intimacy, many couples, especially those who have been together for a long time, regard another type/level of intimacy to be just as, if not more, fulfilling and important as part of the emotional closeness that develops in deeply committed relationships.

Having someone you trust and with whom you can talk "heart to heart", do things that are interesting or fun, or provide comfort and contentment through caring words or gestures are ways to cultivate togetherness. For many couples, though understandably not for all, the passion and lust (from youth and perhaps, a more carefree time) will subside. What keeps a relationship thriving will be something more profound and lasting.

The American Association for Retired Persons (AARP) magazine published an interesting article, "Love American Style", in their January/February 2010 issue with results from a poll they had conducted on love. Though their survey focused a lot on the differences between Americans and the French when it came to sex and love, it also brought to light the humanistic/psychological aspects of love.

A much higher percentage of Americans, 77% compared to 35% of the French, stated that "true love can exist without a radiant sex life". Some participants remarked in how they value the stability in a long-term relationship.

Helen Fisher, Ph.D, a biological anthropologist at Rutgers University in New Jersey and an author of numerous articles and books, has devoted much of her career to studying love and attraction and what leads to successful lifelong partnerships. Her research includes conducting brain scans and analyzing brain mechanisms involved in love. She discovered that individuals, whether they were 18 or 80, had similar brain chemical activity in response to love. Dr. Fisher concluded the article with an important take-away message, "The body gets older, but the basic emotion-the need to be in love—remains the same."

Not everyone in a relationship is in love. If you are both in a relationship and in love, try reaffirming that love by creating your own little rituals.

Notice about names

The Massachusetts CFIDS/ME & 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) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.

Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.