At 21, Josie Eldred Downes has been ill with myalgic encephalomyelitis (ME) for eight years. Throughout that time, the illness has devastated her young body: Every day, she contends with symptoms such as nausea, pain, headaches, and severe exhaustion, so that she spends most days in bed. Even taking a shower is a major effort. Yet the medical establishment has struggled to successfully diagnose or treat her.
ME has become linked with chronic-fatigue syndrome (CFS) as though it were the same illness. For example, the Canadian Consensus Document defines ME/CFS using a certain set of criteria, which, according to Penny Abrahams, chief-executive officer of ME/CFS Australia, are the best protocols available for definition. Abrahams explains that an international team of ME/CFS practitioners and researchers with the combined experience of treating more than 20,000 people with ME/CFS drew
up the consensus.
However, according to Dr Byron Hyde, author and founder of the Canadian-based Nightingale Research Foundation, a charitable organisation dedicated to the study and treatment of ME and CFS, ME should be diagnosed distinct from CFS.
“ME/CFS is a convenient term. It should read ME and CFS,” says Hyde. “CFS has become a garbage-bag diagnosis for too many doctors.”
In his book Missed Diagnoses: Myalgic Encephalomyelitis & Chronic Fatigue Syndrome, Hyde defines ME distinct from CFS based on his own clinical experience. He points out that ME is a disease (as recognised by World Health Organization), while CFS is not. Hyde also explains the specific tools necessary to diagnose the disease; however, he asserts that ME is far from a simple diagnosis.
Nightingale defines ME as a clearly defined disease process and documents its features and testable criteria. Hyde explains that it begins as an infectious-disease state that affects the central nervous system. As a result, patients experience brain dysfunction, such as severe headaches, major sleep problems, and muscle weakness. There are also hormonal issues and concerns with the heart, whereby this vital organ is unable to increase or decrease in speed and pump volume in response to an increase or decrease in physical activity. However, says Hyde, “fatigue was never a major diagnostic criterion of ME … Fatigue and loss of stamina are simply indications that there is something wrong.”
Jodi Bassett, founder of the patient-advocacy group The Hummingbirds’ Foundation for ME (HFME), writes on the organisation’s website: “Despite the existence of the tests for ME … the unfortunate reality is that many people who suspect they have ME do not have access to the appropriate tests or to doctors who are able to make a diagnosis.”
CFS: An Umbrella Term
Currently, Eldred Downes sees Dr Richard Schloeffel, who specialises in CFS and has had great success in the diagnosis and treatment of many of his patients, with 50 per cent able to make a full recovery, he says. However, he views Eldred Downes as one of his “20 per centers” – he has been able to help relieve her symptoms but has been unable to find a cause for her illness.
Schloeffel views CFS as an umbrella term, which includes a number of disease categories. He also asserts that it’s Chronic Fatigue Immune Dysfunction Disorder in America, it’s ME in England, and it’s CFS in Australia. “It’s all the same thing,” he says.
Bassett disagrees. In her book, Caring For The ME Patient, she writes: “Just as you can’t research diabetes by looking at groups of patients that have broken legs, the flu, rashes, and headaches, you can’t research ME by using vague ‘CFS’ patient groups that may or may not happen to contain a small percentage of actual ME patients.”
Bassett believes that the medical community should stop using the CFS label altogether. “The bogus disease category of ‘CFS’ must be abandoned completely, along with all the other similarly vague, misleading, and unhelpful umbrella terms, such as ‘ME/CFS,’ ‘CFS/ME,’ ‘ME-CFS,’ ‘CFIDS,’ ‘Myalgic Encephalopathy,’ and others.” She goes on to explain that it has nothing to do with her wanting a fancier or scarier-sounding name for mere fatigue. “It is about a severe neurological disease being covered up by a fictional and vague ‘fatigue syndrome,’ ” she writes.
ME And CFS: Not The Same Thing
The issue is twofold: A diagnosis of ME/CFS doesn’t validate ME as a distinct disease, as Hyde suggests it should be, and a diagnosis of ME/CFS doesn’t mean that a patient has ME. That is, CFS and ME are not the same thing; the names are not synonymous. “The definitions of each are quite distinct,” says Bassett. “It’s not just about names. It’s about definitions being wrongly mixed up and misused.”
There have been suggestions to change the name CFS to ME. “This does not seem to me to be a useful initiative,” Hyde writes in Nightingale’s documents defining ME. “It would simply add credence to the mistaken assumption that ME and CFS represent the same disease processes. They do not.”
Finding The Right Treatment
Eldred Downes feels the treatment advice she received when she first became ill made things worse (read her story at right). Her health practitioners recommended that she keep to her routine, do physiotherapy, and focus only on the positives in her life – not on her symptoms.
Indeed, one of the treatment protocols for people with CFS is graded exercise (physical activity that starts very slowly and gradually increases over time) and cognitive-behaviour therapy (CBT), but you use these only when patients are in recovery, says Schloeffel.
Bassett believes that a graded-exercise program is probably the single-most inappropriate treatment that a doctor could recommend to an ME sufferer.
“Exercise or exertion intolerance is one of the many things that separates ME … from various postviral fatigue states or other illnesses involving ‘chronic fatigue,’ ”
she writes on the HFME website. She also references a paper written by Dr Melvin Ramsay, an ME researcher and advocate. Ramsay writes, “Those patients who are given a period of enforced rest from the onset [of ME] have the best prognosis.”
According to Schloeffel, the problem is that “we are all writing different protocols, and we’re not getting around the round table enough to establish definitions.”
Bassett, on the other hand, feels that the facts and definitions for ME already exist and that they simply need to be listened to and not ignored.
The HFME website, which recognises ME as a distinct disease and not synonymous with CFS, lists numerous articles and research on ME. The evidence seems overwhelming. Why, then, aren’t people listening?
Living with ME: Josie Eldred Downes, 21