What Is ME/CFS?
Myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS), also known chronic fatigue and immune dysfunction syndrome (CFIDS), is a complex and debilitating chronic disease with a serious impact on one’s quality of life.
What are the symptoms of ME/CFS?
The most common symptoms of ME/CFS include post-exertional malaise (PEM), unrefreshing sleep, concentration problems and muscle pain, typically lasting at least six months.
Post Exertional Malaise (PEM) – PEM is a cardinal symptom of ME/CFS. PEM occurs following mental or physical exertion and is described as worsening symptoms lasting 24 hours or more.
Unrefreshing Sleep – Disrupted and unrefreshing sleep is another hallmark of ME/CFS that causes patients to wake up feeling tired even after periods of rest, to experience excessive daytime sleepiness and to have difficulty falling asleep and staying asleep.
Concentration Problems – Many ME/CFS patients consider concentration problems to be the most serious and debilitating symptom. They experience difficulties with attention, concentration and memory that have been linked to problems in how the brain processes information – particularly processing speed and complex information processing.
Pain – For a long time pain was not thought to be a prominent symptom in ME/CFS, but muscle pain, joint pain and headache are common in ME/CFS patients. It is likely that these four major symptoms of ME/CFS are intertwined, each affecting the other and potentially exacerbating the disease. This is why physicians who understand ME/CFS try to treat pain and sleep disturbances with medications in an attempt to relieve the severity of the overall ME/CFS symptom complex.
The severity of ME/CFS varies greatly from patient to patient, with some people able to maintain fairly active lives. For others, ME/CFS has a profound impact. About 25 percent of people with ME/CFS are disabled by the illness and there’s often a pattern of relapse and remission. Most symptoms are invisible to others, which makes it difficult for family members, friends and the public to understand the challenges of the condition.
It is not uncommon for people with ME/CFS to have some of these symptoms:
Visual disturbances (blurring, light sensitivity, eye pain)
Difficulty maintaining upright posture, dizziness, balance problems and fainting
Chills and night sweats
Allergies and sensitivities to foods, odors, chemicals, medications
Brain fog and cognitive impairment
Gynecological problems including PMS
Irritability, depression and mood swings
Because these symptoms are shared with many other illnesses—and because many of these conditions lack a diagnostic test or biomarker—unraveling which illnesses are present can be difficult. Some patients actually receive diagnoses for multiple conditions.
Common conditions that occur along with ME/CFS:
Irritable bowel syndrome
Temporomandibular joint disorder
Chronic pelvic pain
Multiple chemical sensitivity
Who gets ME/CFS?
At least one million people in the United States have ME/CFS and the condition affects millions more worldwide. Although research has shown that ME/CFS is about two to four times as common in women as men, ME/CFS strikes people from every age, racial, ethnic, and socioeconomic group.
How is ME/CFS diagnosed? Studies show that fewer than 20 percent of ME/CFS patients in the United States have been properly diagnosed. Diagnosing ME/CFS is a challenging process because there is still not one diagnostic test or biomarker that is conclusive. The process requires tests to rule out other conditions that may present similar symptoms before a diagnosis of ME/CFS can be established. It can take months.
Diagnosis can also be complicated by the fact that the symptoms and severity of ME/CFS vary considerably from person to person. Seek care first from the health care provider who knows you best and will work with you to rule out other possible causes of symptoms and identify other conditions.
How is ME/CFS treated?
Since no cause or cure for ME/CFS has been identified, treatment is directed at relieving symptoms. Although there’s no single treatment that fixes the illness at its core, there are treatments that can improve symptoms, increase function, and allow people with ME/CFS to engage in activities of daily living. Sleep problems, pain, heart rate irregularities, gastrointestinal difficulties, allergies, and depression are some of the symptoms that can be relieved treated.
Alternative therapies are often explored in an attempt to relieve symptoms. Acupuncture, hydrotherapy, yoga, tai chi, and massage therapy have been found to help and are often prescribed for symptom management.
If you think you may have ME/CFS, take this quick online questionnaire to learn more.
Can ME/CFS Be Caused by Lyme Disease?
By David S. Bell MD
Question: 1) Can Lyme disease result in permanent ME, even if all signs of the bacteria are gone? Can the Borellia bacteria that causes Lyme Disease also cause ME? Which is worse: severe ME, or severe Lyme Disease?
Answer: These three questions all revolve around chronic Lyme disease, and will be answered differently by every ME/CFS specialist you ask. It is a subject that I had thought about a great deal, and I am aware that is a great deal of contention in the opinions. But with the understanding that we do not know all the answers, I will put forth my opinion.
In 1986 we had, over a two-year period in Lyndonville, New York, a large group of children and adults who came down with what we are now calling ME/CFS, or perhaps SEID1. Central to this outbreak was a group of children who suddenly became ill in October, 19852. Among their many symptoms was very prominent lymph node tenderness, and after consulting with the New York State Department of Health and the CDC, it was decided to biopsy the armpit lymph nodes in a group of these children. Although none of them had the characteristic Lyme disease rash, it was my thought that they could have Lyme disease, although the appearance of a cluster outbreak argued against this, as did the rare prevalence of Lyme disease in this area. The families signed the permissions and I explained to the children what was to happen, and one day we performed an axillary (armpit) lymph node biopsy on all eight children.
The tissue was carefully handled and divided into portions to study as much as possible on them. The standard tests were all normal, and routine viral and bacterial cultures were negative. All samples were sent for silver staining, at that time, the ‘state of the art’ to look for Lyme disease, and one lymph node came back positive. Further analysis on this positive sample was not done. Based on this positive, I treated the children with doxycycline which appeared to have a beneficial result. At a later time, a double-blind study with doxycycline and placebo did not show benefits. To my regret, none of this was submitted for publication.
In the intervening years, I saw many persons who had been diagnosed with chronic Lyme. The symptom pattern, along with the onset pattern, response to antibiotics, and questionable laboratory results led me to believe that there was no difference between ME/CFS and chronic Lyme. I have no doubt, however, that some persons with ME/CFS have their disease initiated by the Lyme organism.
This brings us to the underlying infectious organism that causes ME/CFS. I had the good fortune to study persons with post Q fever debility syndrome under the guidance of Professor Barry Marmion when I delivered to him some raw milk I was suspicious of. He had been following abattoir (slaughterhouse) workers with established Q fever who did not become well with the standard treatment3. In 2004 the CDC and Australian government did a prospective study looking to see who became ill following infection with Q fever, Ross River virus and Epstein-Barr virus in a well-designed and carefully controlled study4. One year after infection with one of these agents 6% developed CFS by the Fukuda criteria5. Of the many remarkable things in this study, it was 6% of those with EBV, 6% with RRV, and 6% with Q fever, three completely different organisms. To me, this meant that many infections could initiate the process of ME/CFS, including infection with the Lyme organism. That is why over the past twenty years we have been talking of enterovirus, mycoplasma, and many other organisms. I have seen patients with ME/CFS following Histoplasmosis, Psittacosis, and other strange bugs.
However, in my thinking, ME/CFS is defined by the symptoms, and not the initiating organism. If the disease turns out to be autoimmune6, this makes very good sense. It is as if several people got splinters, would we call them different injuries if one person had a maple wood splinter and another oak?
So, I believe that chronic Lyme is ME/CFS that is initiated by the Lyme organism. Whether this is true or not, we should know in a couple of years with the research that is bound to follow Drs. Fluge and Mella’s discovery. If this is true then the three questions above are easy to answer.
1. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. 2015.
2. Bell K, Cookfair D, Bell D, Reese P, Cooper L. Risk factors associated with chronic fatigue syndrome in a cluster of pediatric cases. Rev Inf Dis. 1991; 13(Suppl 1): S32-8.
3. Marmion B, et al. Q Fever persistence of antigenic non-viable cell residues of Coxiella burnetti in the host – implication for post Q fever infection fatigue syndrome and other chronic sequelae. QJM. 2009; 102(10): 673-84.
4. Hickie I, Davenport T, Wakefield D, Vollmer-Conna U, Cameron B, Vernon S, et al. Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. BMJ. 2006; 333.
5. Fukuda K, Straus S, Hickie I, Sharpe M, Dobbins J, Komaroff A, et al. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Intern Med. 1994; 121: 953-9.
6. Fluge O, Risa K, Lunde S, Alme K, Rekeland I, Sapkota D, et al. B-lymphocyte depletion in myalgic encephalopathy/chronic fatigue syndrome. An open-label phase II study with Rituximab maintenance treatment. PLoS ONE. 2015; 10(7).
David S. Bell, MD, is one of the world’s leading experts on ME/CFS, and is a pioneer in its diagnosis and treatment.