Chronic Fatigue Syndrome
Disclaimer. This web site is for research and educational purposes only. The information given in this site is not intended to replace a therapeutic practitioner relationship.
Chronic Fatigue Syndrome (CFS), also sometimes referred to as myalgic encephalomyelitis, is a disabling condition (Ref. 2). CFS interferes with activities of daily living, causing debilitating fatigue that can be triggered by minimal activity. Patients have other symptoms, such as cognitive impairment, difficulty in sleeping, muscle and joint pains, sore or enlarged lymph nodes, dizziness or nausea, and sore throat. (Ref. 1,3) CFS is a diagnosis of exclusion. However, prompt diagnosis and initiation of a treatment plan can improve outcomes.
The National Institute for Health and Care Excellence (NICE) guidelines state that a diagnosis of CFS can be made when other possible causes of excessive fatigue have been excluded and symptoms have persisted for more than 4 months in adults or 3 months in children - in children, I think that the diagnosis should be confirmed by a paediatrician. (Ref. 1). Symptom criteria have been developed to assist in diagnosing this condition and also for the purposes of research. A commonly used set of criteria are the 2003 Canadian Guidelines. The most common ages for CFS to occur are at 20–40 years and is more common in women (Ref. 4). The average duration is 3–9 years (Ref. 2). But some patients may remain unwell for 20–30 years (Ref. 5)
The cause of CFS is poorly understood and remains controversial (Ref. 1). Suggested causes include viral infection, autoimmune, endocrine, genetic and psychiatric causes, including traumatic life experiences (Ref. 6–8).
As mentioned on my home page, some cases of 'CFS' are not really CFS. The cause has just not been yet found. However, there are in my opinion quite a few cases where there is definitely not yet known cause. The search is really still on for a definite answer in these cases. Over the years we have had various promising theories as well as clinical tests and some of these may yet become officially recognised. One of the more promising 'breakthroughs' that has been reported recently is the research of an Australian group indicating that sufferers of CFS have a problem with certain cell receptor sites that causes them to have lower intracellular calcium levels (see: Nguyen T. et al., Impaired calcium mobilization in natural killer cells from chronic fatigue syndrome/myalgic encephalomyelitis patients is associated with transient receptor potential melastatin 3 ion channels, Clin Exp Immunol. 2017 Feb: 187(2): 284-293)
Primary symptoms of CFS are fatigue, muscle ache, brain fog, gut disturbance, temperature irregularities and immune and nervous sensitivity. Depression, sleep disturbance and anxiety are additional symptoms that may result from the primary ones. In order to diagnose CFS such conditions as the following need to be excluded: thyroid dysfunction, coeliac disease, addisons disease, haemachromatosis, heart disease, sleep apnoea, diabetes and hypoglycaemia.
Classic treatment of CFS, when no cause is known, consists mainly of Graded Exercise Therapy (GET) and/or Cognitive Behaviour Therapy (CBT) (References 9 and 10 below). However, these therapies are still controversial, particularly within the CFS/ME community (see below). I usually only initially recommend gentle, relaxing exercises and slow resistance exercise in my patients with CFS and fibromyalgia. Faster, aerobic type exercise I have found to often result in aggravating the conditions, at least initially. For information on the GET/CBT controversy, see:
reporting-of-harms-associated-with-get-and-cbt-in-me-cfs.pdf
reporting_of_harms._pace_study.pdf
Wiltshire, CE, et. al. Rethinking the treatment of chronic fatigue syndrome - a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT, BMC Psychol., 2018, 6:6. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5863477/)
http://journals.sagepub.com/toc/hpqa/22/9
I have found GET to be particularly applicable to patients who are less than about 25 years of age. For older patients it can be problematic, especially if too much aerobic exercise is used. In commencing GET, it is most helpful to engage the services of an exercise physiologist experienced in treating patients with CFS.
With CFS one of the issues that I come across quite often is that some possible contributors have not yet been considered because they are not that well recognised or they have just not been checked out quite enough. These causes include:, Sick Buildings, Long term Infections, Poisoning, Mental/social/spiritual stress, Nutritional and gut problems, Hormonal problems Epigenetics and Sleep disturbances. You can read my opinion on these possible causes in other pages of this site. I have found toxin producing Staph in quite a few patients with CFS/Fibro that I have tested. For more information please see our Sinus page.
Although CFS is primarily diagnosed clinically there are some tests that tend to be characteristic of CFS. These include the tilt table test in which those with CFS characteristically demonstrate abnormal blood pressure readings and unpleasant symptoms. Another test is called a SPECT brain scan. It is a type of MRI scan of the brain. Someone familiar with CFS abnormalities is needed to accurately interpret the images.
Another label that you may have heard of is Myalgic Encephalomyelitis (ME). This label is believed by some to describe a distinct condition that is not CFS but shares many of its symptoms. It may occur in episodic localised clusters, like a mini-epidemic, and causes a higher concentration of symptoms relating to the nervous system and to brain function in particular. My personal opinion is that CFS and ME can be caused by the same factors, but that they represent distinct symptom patterns. ME is more neurologically focused. CFS is more muscle and gut focused.
It is important to avoid just 'firing' hoped for 'magic bullets' at CFS. Certain medications and complementary therapies or supplements were highlighted by the NICE 2007 guidelines (Ref. 1) as not being useful for treatment of CFS. These include monamine oxidase inhibitors, glucocorticoids (such as hydrocortisone), mineralocorticoids (such as fludrocortisone), dexamphetamine, methylphenidate, thyroxine and antiviral agents.
The National Institute for Health and Care Excellence (NICE) guidelines state that a diagnosis of CFS can be made when other possible causes of excessive fatigue have been excluded and symptoms have persisted for more than 4 months in adults or 3 months in children - in children, I think that the diagnosis should be confirmed by a paediatrician. (Ref. 1). Symptom criteria have been developed to assist in diagnosing this condition and also for the purposes of research. A commonly used set of criteria are the 2003 Canadian Guidelines. The most common ages for CFS to occur are at 20–40 years and is more common in women (Ref. 4). The average duration is 3–9 years (Ref. 2). But some patients may remain unwell for 20–30 years (Ref. 5)
The cause of CFS is poorly understood and remains controversial (Ref. 1). Suggested causes include viral infection, autoimmune, endocrine, genetic and psychiatric causes, including traumatic life experiences (Ref. 6–8).
As mentioned on my home page, some cases of 'CFS' are not really CFS. The cause has just not been yet found. However, there are in my opinion quite a few cases where there is definitely not yet known cause. The search is really still on for a definite answer in these cases. Over the years we have had various promising theories as well as clinical tests and some of these may yet become officially recognised. One of the more promising 'breakthroughs' that has been reported recently is the research of an Australian group indicating that sufferers of CFS have a problem with certain cell receptor sites that causes them to have lower intracellular calcium levels (see: Nguyen T. et al., Impaired calcium mobilization in natural killer cells from chronic fatigue syndrome/myalgic encephalomyelitis patients is associated with transient receptor potential melastatin 3 ion channels, Clin Exp Immunol. 2017 Feb: 187(2): 284-293)
Primary symptoms of CFS are fatigue, muscle ache, brain fog, gut disturbance, temperature irregularities and immune and nervous sensitivity. Depression, sleep disturbance and anxiety are additional symptoms that may result from the primary ones. In order to diagnose CFS such conditions as the following need to be excluded: thyroid dysfunction, coeliac disease, addisons disease, haemachromatosis, heart disease, sleep apnoea, diabetes and hypoglycaemia.
Classic treatment of CFS, when no cause is known, consists mainly of Graded Exercise Therapy (GET) and/or Cognitive Behaviour Therapy (CBT) (References 9 and 10 below). However, these therapies are still controversial, particularly within the CFS/ME community (see below). I usually only initially recommend gentle, relaxing exercises and slow resistance exercise in my patients with CFS and fibromyalgia. Faster, aerobic type exercise I have found to often result in aggravating the conditions, at least initially. For information on the GET/CBT controversy, see:
reporting-of-harms-associated-with-get-and-cbt-in-me-cfs.pdf
reporting_of_harms._pace_study.pdf
Wiltshire, CE, et. al. Rethinking the treatment of chronic fatigue syndrome - a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT, BMC Psychol., 2018, 6:6. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5863477/)
http://journals.sagepub.com/toc/hpqa/22/9
I have found GET to be particularly applicable to patients who are less than about 25 years of age. For older patients it can be problematic, especially if too much aerobic exercise is used. In commencing GET, it is most helpful to engage the services of an exercise physiologist experienced in treating patients with CFS.
With CFS one of the issues that I come across quite often is that some possible contributors have not yet been considered because they are not that well recognised or they have just not been checked out quite enough. These causes include:, Sick Buildings, Long term Infections, Poisoning, Mental/social/spiritual stress, Nutritional and gut problems, Hormonal problems Epigenetics and Sleep disturbances. You can read my opinion on these possible causes in other pages of this site. I have found toxin producing Staph in quite a few patients with CFS/Fibro that I have tested. For more information please see our Sinus page.
Although CFS is primarily diagnosed clinically there are some tests that tend to be characteristic of CFS. These include the tilt table test in which those with CFS characteristically demonstrate abnormal blood pressure readings and unpleasant symptoms. Another test is called a SPECT brain scan. It is a type of MRI scan of the brain. Someone familiar with CFS abnormalities is needed to accurately interpret the images.
Another label that you may have heard of is Myalgic Encephalomyelitis (ME). This label is believed by some to describe a distinct condition that is not CFS but shares many of its symptoms. It may occur in episodic localised clusters, like a mini-epidemic, and causes a higher concentration of symptoms relating to the nervous system and to brain function in particular. My personal opinion is that CFS and ME can be caused by the same factors, but that they represent distinct symptom patterns. ME is more neurologically focused. CFS is more muscle and gut focused.
It is important to avoid just 'firing' hoped for 'magic bullets' at CFS. Certain medications and complementary therapies or supplements were highlighted by the NICE 2007 guidelines (Ref. 1) as not being useful for treatment of CFS. These include monamine oxidase inhibitors, glucocorticoids (such as hydrocortisone), mineralocorticoids (such as fludrocortisone), dexamphetamine, methylphenidate, thyroxine and antiviral agents.
References
- National Institute for Health and Care Excellence. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management of CFS/ME in adults and children [CG53]. London: NICE, 2007.
- Cairns R, Hotopf M. A systematic review describing the prognosis of chronic fatigue syndrome. Occup Med 2005;55:20–31.
- Fukuda K, Straus SE, Hickie I, et al. The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Ann Intern Med 1994;121:953–59.
- Prins JB, van der Meer JWM, Bleijenberg G. Chronic fatigue syndrome. Lancet 2006;367:346–55.
- Ax S, Gregg V, Jones D. Chronic fatigue syndrome: illness attributions and perceptions of control. Homeostasis 1998;39:44–51.
- Arroll M, Arroll B. Chronic fatigue syndrome: a patient-centred approach to management. Aust Fam Physician 2013;42:191–93.
- Bansal AS, Bradley AS, Bishop KN, Kiani-Alikhan S, Ford B. Chronic fatigue syndrome, the immune system and viral infection. Brain Behav Immun 2012;26:24–31.
- Hatcher S, House A. Life events, difficulties and dilemmas in the onset of chronic fatigue syndrome: a case-control study. Psychol Med 2013;33:1185–92.
- Larun L, et al, Exercise therapy for chronic fatigue syndrome, Cochrane Database Syst Rev. 2015 Feb 10
- Werker CL et al, Clinical Practice: Chronic fatigue syndrome, Eur J Pediatr. 2013 Oct
Images and content © D. Bird 2017