ME/CFS – the early years
In the early 80s, my practice in family medicine evolved into a practice in environmental medicine. I was seeing more patients with chronic fatigue and in order understand what each patient was feeling, I had to learn what questions to ask to get an accurate description of what they meant by fatigue. At that time, fatigue was already being described as the most common, yet least understood and most neglected symptom in medicine.
By the late 80s, papers started to be published in medical journals using the terms Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME). Since many of the early identified cases seemed to develop after a viral illness, the term Postviral Fatigue was used. It was also called Chronic Epstein-Barr Virus Syndrome because frequently evidence is found for recent exposure to the Epstein-Barr virus. Given the confusion, CFS was chosen as the best name proposed for the complex of symptoms associated with chronic fatigue and a working definition was proposed.
We’ve come a long way
Now, there are more than 6600 papers published on the subject of chronic fatigue. When using the search engine of the US National Library of Medicine (Medline), the terms CFS and ME are now used interchangeably.
The early definitions of CFS did not emphasize what we now know: that the critical symptoms for the diagnosis are post-exertional malaise and memory and concentration problems. The criteria for ME identified patients with more severe post-exertional malaise symptoms and more functional disabilities.
Some people still argue that ME is different from CFS. The term encephalomyelitis implies that there is inflammation in the brain and myalgic refers to muscle abnormalities. But the evidence that this really separates ME from CFS is weak. We see evidence for inflammation in both, but what it really amounts to are chronically activated, generalized immune and inflammatory pathways. The inflammation is systemic. These changes are not just confined to the brain. Inside cells, we see evidence for damage to the energy factories, called mitochondria, and it is also systemic, not just found in muscles.
How far have we come in the last 30 years?
Patients with CFS, or ME, (or ME/CFS to be politically correct) still struggle. They have a poorly understood, invisible disability and it is still frequently implied that they are malingering or lazy. Because we cannot find biological markers, disability insurance carriers argue that there is no medical evidence to support any diagnosis. They arrange for independent medical examinations using inappropriate assessments of fatigue to deny claims. Some poorly designed studies imply that all these patients need is cognitive behavioral therapy to remove any false beliefs that there is something organically wrong, and a good exercise program to improve enough to return to work.
Meanwhile, we still have no specific treatments that are beneficial except for pacing, to manage the condition and to obtain some improvement in quality of life. But the fatigue and post-exertional prolonged recovery persists. The good news is that we have been able to prove ME/CFS exists objectively by repeat cardiopulmonary stress testing.
Nothing else has really been resolved. Endless discussion persists about the best way to measure fatigue, whether CFS and ME are the same entities, how to define the condition(s), what the mechanism is, and how to treat the condition. There is very little information provided in medical school training, and evidence based effective treatments, except for managing energy, are lacking. Insurance companies challenge the diagnosis due to “lack of medical evidence” and promote assessments without an evidence base, which almost always ensure denial of disability.
How supportive is government?
At the request of several US government agencies, an expert committee was convened by the prestigious Institute of Medicine (IOM), to examine the evidence base for ME/CFS. They produced a report entitled, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. They proposed new diagnostic criteria, which they felt would facilitate timely diagnosis and care, and enhance understanding among health care providers and the public. In addition, they recommended that the name of the disease be changed – from ME/CFS to systemic exertion intolerance disease (SEID) – to more accurately capture the central characteristics of the illness. The most important outcome of the IOM conclusions is that they state the condition is biological, and they emphasize the inability to tolerate both physical and cognitive exertion.
There are some who criticized the IOM conclusions and recommendations, which is always to be expected when there are conflicting opinions.
What was the response of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, which represents the major professional medical and scientific community? In an open letter to the expert IOM panel, they wrote: Generally we agree with the majority of the Panel’s recommendations but believe that the elephant in the room – research funding – alluded to in the report (e.g. Line 8) needs to be addressed more strongly and specifically. Federal funding for ME/CFS research over the last 3 decades has been inadequate to the broad-ranging and complex challenges presented by this illness. In recent years, only $5-$6 million annually has been awarded on an extramural basis, resulting in ME/CFS being the least-funded out of 240+ conditions that NIH (National Institute of Health) tracks annually.
Ontario taking a lead
The Ontario government has been funding the Environmental Health Clinic at Women’s College Hospital in Toronto, since 1996. It has the mandate to assess and make recommendations for treatment for patients referred for ME/CFS. Why this clinic? Because there is a large body of evidence that points to an environmental impact on cells. The cells’ detoxification systems are becoming dysfunctional, just like in many other chronic conditions and illnesses linked to the environment, including fibromyalgia and multiple chemical sensitivity. Known as oxidative stress, this dysfunction is what is causing damage to the mitochondria and systemic inflammation.
The Ontario government has an opportunity to promote better care and support for ME/CFS patients. They have created an Interministerial Task Force (Ministries of Health and Long Term Care, and Environment) to consider the development and expansion of the Environmental Health Clinic, including the proposed recommendations from the medical and scientific community. The government has already begun funding a Fellowship training program for the next three years, and the present clinic is being moved to a better location within the hospital.
May 12th is the birthday of Florence Nightingale. Since 1992, it has been designated as International Awareness Day for Chronic Immunological and Neurological Diseases, such as ME/CFS, fibromyalgia and multiple chemical sensitivity.
I’m pleased to join the #May12BlogBomb awareness event.
Happy International Awareness Day to all.