CFS/ME is characterised by debilitating fatigue that is unlike everyday fatigue and can be triggered by minimal activity. This raises especially complex issues in adults and children with severe CFS/ME.
People with Chronic Fatigue Syndrome usually experience a wide range of symptoms. The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions.
CFS should only be considered for diagnosis, when symptoms are present for more than 4 months (children) or 6 months (adults).
Most people with CFS go undiagnosed or are misdiagnosed with anxiety or depression.
While anxiety and depression impacts up to 50% of people with CFS, it is not the cause. A misdiagnosis unfortunately can lead to incomplete (and sometimes inappropriate and harmful) treatments.
Also See Myalgic encephalomyelitis (ME)
Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), and recently named "systemic exertion intolerance disease (SEID)," by the IOM, is an illness that affects a person’s nervous system (commonly called a ‘neurological illness’). It can occur at any age and can affect children as well as adults.
The term ‘myalgic encephalomyelitis’ means pain in the muscles, and inflammation in the brain and spinal cord.
ME/CFS is a complex illness and we do not know the cause. For some people, the condition may be triggered suddenly by a viral infection, toxic exposure, anaesthetic, immunisation, gastroenteritis or trauma. In other people, ME/CFS may develop slowly over months or years.
There are many subtypes within the spectrum of ME/CFS, which means that a management plan must be developed for each person with the condition. Applying a particular treatment for one subtype can be very damaging to another subtype. An individual management plan must be developed for each person with ME/CFS.
Around 25 per cent of people with ME/CFS will have a mild form and be able to get to school or work either part-time or fulltime, while reducing other activities. About 50 per cent will have a moderate to severe form of ME/CFS and not be able to get to school or work. Another 25 per cent will experience severe ME/CFS and have to stay at home or in bed.
On average, many people with ME/CFS will improve in the first five years, but others may mainly stay at home or in bed, or may suffer relapses throughout their lives.
The main feature of ME/CFS is a type of exhaustion known as post-exertional malaise, ‘crash’ or ‘payback’. This means having flu-like symptoms after exercise and not having enough energy for daily activities.
Research shows that people with ME/CFS have a different physiological response to activity or exercise from other people. This includes abnormal exhaustion after any form of exertion, and a worsening of other symptoms. The response may be delayed, perhaps after 24 hours. Depending on the amount and type of exercise, it may result in post-exertional malaise for a few days, or serious relapses lasting weeks, months or even years.
People with ME/CFS find that activities they once took for granted take an enormous toll on their health. For example, a short stroll, coffee with a friend, getting their child ready for school or catching the train to work, which caused no fatigue before, is followed by unusual tiredness that takes longer than usual to go away.
Because ME/CFS is a very complex, multi-system, chronic illness, many other symptoms will occur and must be present for diagnosis. These symptoms are compatible with what are experienced by people with Mast Cell Activation Disorders and it's rare cousin Mastocytosis. They are also compatible with the CFS related condition fibromyalgia (often used interchangeably).
- problems with thinking, concentrating, memory loss, vision, clumsiness, muscle twitching or tingling (sometimes called ‘neurocognitive problems’)
- disrupted sleep
- pain or aches in the muscles, joints or head
- a drop in blood pressure, feeling dizzy or pale
- palpitations, increased heart rate or shortness of breath with exertion or on standing
- allergies or sensitivities to light, smells, touch, sound, foods, chemicals and medications
- gastrointestinal changes such as nausea, bloating, constipation, diarrhoea
- sore throat, tender lymph nodes and a flu-like feeling
- marked weight change – extreme loss or gain
- inability to cope with temperature changes.
- A person’s symptoms will fluctuate over short periods of time, even from hour to hour.
Scientists are starting to understand the biological causes of ME/CFS, although they have not yet found a prevention or cure. Genes appear to be a factor in many cases.
- Over 4,000 research articles have found that ME/CFS is associated with problems involving:
the body’s ability to produce and transport energy
- the immune, neurological and hormonal systems
- viral or other infections
- blood pressure, the circulatory and cardiac systems
- biochemical abnormalities.
Currently, there is no single test to diagnose ME/CFS. Doctors make a diagnosis by excluding all other illnesses after a person has had symptoms continually for six months. The person’s results from routine medical tests will often be normal, but additional tests will show abnormalities.
People who receive an early diagnosis and early treatment tend to do better. Having a supportive community of family, friends, school, work, employers and health workers, who understand the potential seriousness of ME/CFS, can improve recovery for people with the condition. It is important to find a doctor who is not only sympathetic to ME/CFS, but can also treat it. Treatment choice will vary and will depend on the results of the additional testing.
ME/CFS can cause different levels of disability in different people. Like all other chronic illnesses, ME/CFS can be anywhere from mild or moderate to severe, meaning:
mild – the person’s activity is reduced by at least 50 per cent
moderate – the person is mostly housebound
very severe – the person is bed-bound and dependent on help for all daily care.
Some people with ME/CFS are too ill to work, go to school, socialise, and manage their family or their own affairs. A person’s finances may be seriously affected. Some people in the community think wrongly that a person with ME/CFS is ‘just being tired’, that the illness is ‘in their head’ or that they should ‘just push through’. This misunderstanding is not helpful and can often cause a person to keep pushing beyond their limits, which will cause relapses and make their condition worse.
People with ME/CFS react to physical activity differently. Exercise can be a problem for some people, because physical activity can worsen their symptoms. Medical opinion has been divided on whether people with ME/CFS should attempt regular exercise or not.
Vigorous aerobic exercise is helpful for many chronic illnesses, but people with ME/CFS can’t tolerate traditional exercise routines due to post-exertional malaise and must learn to pace activities. It is important that they work with their healthcare professionals to create a weekly routine that is especially for that person and focuses on doing as much activity as is possible, without any worsening of symptoms in the following days or weeks.
A person with ME/CFS should never be coaxed to push past their limit as it can be dangerous and cause long-term relapse. The goal is to balance rest and activity to avoid decreasing fitness levels from lack of activity and flare-ups of illness due to overexertion.
For some people with ME/CFS, as time passes and their condition improves, they will find they can do more, but it is a slow and gradual process.
It is very important that any activity plan be started slowly and increased slowly. When beginning an activity program, some people with ME/CFS may only be able to stretch for as little as a few minutes.
Pacing, or keeping within your activity limits, will help you make sure that you don’t overdo activity or exercise
CFS GUIDELINES 2002 Medical Journal Australia (40 pages)
The Better Health Channel (Vic Gov) Fact sheet https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs
- Levels of chlorinated hydrocarbons may be increased415,416 (Level III-3).
- Chronicexposuretoindustrial solvents, insecticides or pesticides may cause an illness resembling CFS417-419 (Level IV).
- Silicone breast implants may be associated with asyndrome resembling CFS75,84,118,420-423 (Level IV).
- Ciguatera poisoning may precipitate a syndrome resembling CFS424,
Chronic Fatigue Syndrome following Toxic Exposures -
The Science of the Total Environment 270 Ž2001. 2731
Clin Infect Dis. 1994 Jan;18 Suppl 1:S43-8.
The Role of Toxic Mold in Chronic Fatigue Syndrome
Is there an association between exposure to chemicals and chronic fatigue syndrome? Review of the evidence.
Luis Carlos Nacul1*, MD, MSc, PhD
Eliana Mattos Lacerda1, MD, MSc, PhD Dikaios Sakellariou2, MSc, Doctoral candidate
US scientists claim ‘robust evidence’ that ME/CFS is a biological illness | Columbia University press release | 27 February 2015
Immunological aspects of chronic fatigue syndrome.
In the mind or in the brain? Central sensitization in chronic fatigue syndrome
A Review of Hypothalamic-Pituitary-Adrenal Axis Function in Chronic Fatigue Syndrome
Persistent burnout theory of chronic fatigue syndrome
Stress -Bruce Campbell.
- Date:March 12, 2015
- Source: University of Florida
The mechanism that causes high-performance athletes to 'feel the burn' turns out to be the culprit in what makes people with chronic fatigue syndrome feel exhausted by the most common daily activities, new research shows.
Nutrient Deficiencies such as Vitamin D or B12 can worsen symptoms
Enzyme deficiencies impacting digestion and liver detoxification are common to people with CFS/ME - some studies link this to food intolerance related IBS, food chemical sensitivity and multiple chemical sensitivity.