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.

By Rebecca Bradley

Chronic Fatigue Syndrome (CFS), or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), sounds like nothing until you get it. Whether you are self-diagnosed and are still looking for medical validation or already have your "official" diagnosis, the initiation rites into the ME/CFS club are pretty much the same.

There is an overwhelming fear of whom to believe and what to do. Questions roll around in your head, such as: What type of doctor do I need to see? Why do the symptoms change? Am I crazy? What do all the medical terms like EBV (Epstein-Barr virus), CFS (Chronic Fatigue Syndrome), FM (Fibromyalgia), NKCs (Natural Killer Cells), mitochondria and cognitive dysfunction mean?

In particular, when you speak with patients who have been around a few years, many of them seem more relaxed or knowledgeable about all the medical lingo and you may feel like a fish out of water. It is very typical for a new ME/CFS patient to feel overwhelmed and frightened, yet be determined to learn all they can to try and beat this illness. Patients tend to jump right into on-the-job training for their personal "medical degree," no college necessary.

As patients, we are educating the medical establishment, one­-on-one from the bottom up. That is why the old ­timers appear to know so much. It isn't that they are smarter than you; they have just been around longer. You'll catch up.

Fear is one of the worst enemies. As the symptoms move around or change, it is not unusual for a patient to question his or her own sanity. How can so many things be wrong? Why does my mind not work when I want it to? Why do I still feel like a Mack truck is parked on top of my body after I've already slept 14 hours? If I rest, will this go away? Will I ever get better? Where did my life as I knew it go? How dare it go on vacation and not take me with it!?!

Connecting

To overcome fear, a good starting place is to join a support group, even if you can't always make the meetings. They may have a telephone buddy for you, or at the least, someone you can talk with occasionally. Connect to other patients and don't let ignorance or isolation keep you down. Isolation is an enemy.

As For Treatments

There is a lot of misinformation out there. Some treatments help, some don't. That is a typical problem for both doctor and patient. Each person may respond differently to drugs and dosages.

Some patients prefer no treatment, while others seek aggressive intervention. Some want allopathic (standard medical treatment) while others turn to natural or homeopathic treatments. Many use a combination.

You have to learn to listen to your body and take your cues from it. Over time, it will tell you what you need; when to rest, what works, what doesn't. Let your intuition be your guide and develop your "ME/CFS radar." After all, no doctor knows your body as well as you do.

Accept that, as a patienteven if you were previously a medical professionalthe assumption by many in the medical establishment is that a patient knows nothing. Change that stereotype. Don't blindly accept this type of attitude from a doctor.

Another idea is to get newsletters from several different patient organizations and groups. If you are able, read medical articles, speak with ME/CFS specialists, and if your area puts on a ME/CFS medical conference or has a speaker/lecturer, try to attend. Not only will you feel connected, you might learn something.

There is always plenty of floor space on which to lie down if your body gives out (most patients with ME/CFS seem to carry pillows and drinks at all times). If you can't personally attend a lecture, try to get the information.  Many support groups have information packets about this illness; many libraries lend out books and DVDs.

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.