EXPERIENTIAL PERSPECTIVES

‘I got sick one day, and I never got better.’

ME/CFS is experienced as debilitating fatigue – not ‘just tired’ but ‘exhausted and can’t get up’ – accompanied by swollen lymph nodes, pain, and neurological dysfunction.

FROM THE ME/FM NATIONAL ACTION NETWORK WEBSITE

‘Imagine having a cement block tied to each one of your limbs and you are trying to move regardless of these obstacles. With every move you make, you are being held back by the weight of the cement block. The fatigue is overwhelming and disabling. A simple activity of daily living such as taking a shower can be so exhausting that it is followed by bed rest. Some are so severely affected, they are bedridden or housebound.

                                                                                                                

WHAT IS ME/CFS?

ME refers to ‘Myalgic Encephalomyelitis,’ a term used in Britain for many years and used to describe the disease process.  ‘My’ refers to muscle and ‘algic’ to pain. ‘Encephalo’ refers to brain, ‘myel ‘to spinal cord and ‘itis’ denotes inflammation.

CFS refers to Chronic Fatigue Syndrome. (Syndrome refers to a group of concurrent symptoms of a disease).

In some countries the disease has been referred to as ME and in others as CFS, and therefore has now become known as ME/CFS.

In February, 2015, however, a major new U.S. report, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, (Institute of Medicine and the National Academy of Sciences, February 10, 2015) proposed a new name, ‘Systemic Exertional Intolerance Disease,’ that will now be debated, but which clearly moves the classification from a ‘syndrome’ to a ‘disease’ – an important step at this time.

ME/CFS is an acquired illness that affects all body systems; predominantly the neurological, endocrine and immune systems. It is classified as a neurological illness in the World Health Organization (WHO) International Classification of Diseases, and can be severely debilitating.

SYMPTOMS

NEGATIVE RESPONSE TO EXERCISE

Response to exercise in a healthy person gives a feeling of well-being. However, even though post-exertional malaise/fatigue is a hallmark feature of ME/CFS, patients are often prescribed exercise without sufficient care. Research studies have confirmed that ME/CFS patients do not respond to exercise the same way healthy people do. The resting heart rate becomes elevated and oxygen uptake is approximately half of sedentary controls and are unable to achieve an age-predicted target heart rate.

Exacerbation of symptoms from exercise – so-called post-exertional malaise – is diagnostic of the condition. Research studies have confirmed that ME/CFS patients do not respond to exercise the same way healthy people do. The resting heart rate becomes elevated and oxygen uptake is approximately half of sedentary controls, and patients are unable to achieve an age-predicted target heart rate.

Post-exertional malaise has recently been placed at the centre of the new name – Systemic Exertion Intolerance Disease – proposed by a major report recently issued by the U.S. Institute of Medicine of the National Academy of Sciences.

Unrefreshing sleep

Unlike in healthy people, sleep is unrefreshing and unrestorative.

FROM THE COMMUNITY CONSULTATION

‘No matter how much I slept, I still felt exhausted…’

I had requested to my doctor to give me some time off. I was basically falling asleep in her office waiting for her to see me. I remember not having the energy to even be able to hold up my head, resting it on the wall. My doctor had no proof or diagnosis of anything wrong. She agreed to put me part-time [at work]. By May, I begged my doctor to take me off work because I felt I was no longer safe to practice with my extreme fatigue. I would wake up every morning at three o’clock, unable to return to sleep. I was exhausted. I was saying ‘good morning’ when it was afternoon. I had issues with time of day, remembering people’s names and triple checking my medication administration. It was like there was some faulty wiring in the brain that was misfiring, causing delays in my thinking, my movement and alertness. …  At that time, I lived on a second floor apartment with about twenty-five steps. On bad days, by the time I got to the top of the stairs, my legs were aching – plus, plus on bad days – and I was very short of breath. I was so tired. No matter how much I slept, I still felt exhausted. I lived alone at the time. Just getting up was a chore. … having a shower, making a meal, doing dishes – I had no energy for nothing. Joanne ME

                                                                                                                

Extreme, flu-like weakness and fatigue can undermine all functions, multiple body systems can be affected, and this can lead to an inability to physically perform the basic necessities of life.

Isolation, disability and poverty can result from these symptoms.

To find out more read the full reports.

FROM THE COMMUNITY CONSULTATION

Some people are bedridden and housebound

My wife’s] symptoms include what the old consensus definition used to call ‘post-exertional malaise.’ Malaise is not really a good description. She says it’s more like having the flu and PMS at the same time, and it’s pretty miserable. She also has a lot of sensitivity to noise, so she wears earplugs a good deal of the time; she can’t have music on. She also is very sensitive to light, so she wears a visor even in the house to keep some of the bright lights off her eyes. She still has her irritable bowel and various gut upsets, although it’s not as painful as it was. She [also] has some cognitive dysfunction – sometimes trouble finding words. Any time she needs to follow something that’s moving – visual as well as auditory at the same time, so watching movies – can be very difficult. Thomas, caregiver for wife with ME

                                                                                                                

EXTRA! EXTRA! Read the major new report on ME/CFS, compare its findings to our own…

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, Institute of Medicine of the National Academy of Sciences, February 10, 2015.

In this report, the IOM committee recommends that doctors look for the following three core symptoms when diagnosing SEID:

  • The impairment, lasting for more than six months, of one’s ability to engage in pre-illness activities
  • The worsening of symptoms after exposure to physical or cognitive stressors
  • Unrefreshing sleep

Additionally, the committee encourages doctors to identify one of two other symptoms in patients: Cognitive impairment or the worsening of symptoms when one stands up.

Dr. Peter Lin, a frequent contributor to CBC radio and television programming about health had these comments on Wed. Feb. 18, 2015-02-23

“They’re trying to make it easier to tag people… Because all of a sudden, you have a real condition… Disease means ‘this is real,’ whereas syndrome kind of means ‘collection of’ [symptoms]… By being tagged with this name, then basically the patient realizes that… for insurance purposes and for work, now it becomes real.”

 

 
The U.S. Department of Health and Human Services (HSS), which issued a contract to the IOM for the report, must decide how to implement and accept the findings.

Canada must decide whether to adopt them.

Dr. Lin says even the prospect of change allows health-care professionals to imagine improved circumstances surrounding SEID, including those in the workplace of those afflicted by it.