The ME CFS Foundation South Africa

About ME/CFS

Information and resources to help

On this page:

  • What is ME/CFS?
  • What are the symptoms?
  • What should I do if I think I have ME/CFS?
  • How is ME/CFS diagnosed?
  • How can ME/CFS be distinguished from similar conditions?
  • Treatment
  • Resources
  • Living with ME/CFS
  • References

What is ME/CFS?

Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) is a chronic systemic neuroimmune condition characterised by “post-exertional malaise” (a severe worsening of symptoms after even minimal exertion). It causes dysregulation of both the immune system and the nervous system. The effects of ME/CFS are devastating enough to leave 25-30% of patients housebound or bedbound. For moderate to severe patients, living with ME/CFS is like living with late-stage cancer, advanced stage AIDS, or congestive heart failure for decades.

ME/CFS is a biological illness, not a psychological disorder, patients are neither malingering nor seeking secondary gain. (www.cdc.gov) ICD10 Code: G93.3 (WHO organisation.

Unfortunately, there are currently no estimates for South Africa. The Foundation is working towards conducting surveys throughout the country to establish the prevalence of ME/CFS.

 

Terminology and Definition

ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It is also called just ME or CFS. 

The ME CFS Foundation South Africa uses the terminology Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – ME/CFS until there is a global consensus on what term to use. 

Dr Charles Shepherd

Dr Charles Shepherd, Hon. Medical Advisor to the ME Association, explains how M.E. is diagnosed, in a short video that was made by ME/CVS Vereniging.

He explains the different criteria and ends his discussion by saying the International Consensus Criteria is probably the most comprehensive one. The Foundation prefers this criteria. However, as Dr Shepherd says few doctors have the time to go through it in detail.  A copy of this criteria is available under “The International Criteria” further down on this page.

SOURCE: ME Association UK

Images by Chantelle Spies from Chronically Rising

On the right is a video created by Retha Viviers, images from Chronically Rising, Chronically Hopeful and information from ME-International have also been used. The video covers a wide range of issues relating to ME/CFS.


The presentation is also available in pdf format, email info@mecfssa.org for a copy.

What are the symptoms?

ME/CFS includes debilitating fatigue that is constant or recurring. This is not tired because you’ve had a long day, it’s the kind of fatigue you experience when you have the flu or are undergoing chemotherapy. Some patients describe this as feeling like they have lead in their body or that they have no energy, like a dead battery.

But it also has other symptoms, such as waking up feeling drained or like you have a hangover. Most of these patients take more time (up to two hours) to transition from sleeping to awake activity. They may have insomnia or require more than eight hours of sleep, yet still not feel refreshed in the mornings.

ME/CFS also includes trouble with thinking abilities. This could include the inability to process new information quickly (such as when given driving directions or asked to remember a phone number). It could include the inability to do math’s in your head or difficulty multitasking. Forgetting words or getting your “wires crossed” is also commonly reported in those with ME/CFS.

Another symptom, orthostatic intolerance, may make a person uncomfortable standing in one place long. The patient feels a strong urge to lie down or they may feel dizzy. Often patients unconsciously compensate by folding their legs when they sit down or shifting their weight from one leg to another when they stand. They may not know why, but they avoid lines, doing dishes at a sink, or standing at a sink to brush their teeth. Standing in a hot shower exacerbates this feature of the disease.

Other symptoms some patients experience include muscle pain, sore throat, swollen lymph nodes, sound and light sensitivity, cold and heat sensitivity, headaches, easy bruising, and vertigo. In all, about 60 different symptoms can occur with the disease, and each patient’s symptom profile may be different.

How does it start?

The disease can be triggered by an infection or series of infections, surgery, another illness, an accident, or any other physical or emotional stressor. It may come on gradually or suddenly. Commonly, people with the disease say they feel they caught the flu, but it never went away. Some report the symptoms starting one day without any apparent trigger. ME/CFS seems to have a genetic component because it occurs more often among blood relatives.

What causes the symptoms?

Research has revealed brain inflammation, systemic inflammation, low blood volume, immune system deficiency, abnormal gene reactions to exercise, abnormal energy metabolism in response to exercise, and abnormalities in the hypothalamic/adrenal/pituitary system. But none of these biological findings has led to a widely accepted diagnostic marker or led to an understanding of the cause of all the symptoms.

What should I do if I think I might have ME/CFS?

If you suspect you have this disease,  discuss it with your doctor to rule out other illnesses with similar presentation such as fibromyalgia, hypothyroidism, cardiac dysfunctions, infection, or depression. It is possible that one of these other conditions can comorbid with ME/CFS.

Women aged 35-50 are at a higher risk of contracting this disease. The second most common group to develop it includes adolescent boys and girls (aged 11-23). However, it can strike anyone, including men and young children. The illness doesn’t discriminate between race, age, sex or socio economic class.

Source: Open Medicine Foundation

International Consensus Criteria

Over the years different criteria for diagnosing ME/CFS have been developed for different purposes. Herewith information on the International Consensus Criteria with a summary of other types of criteria, their requirements and purposes.

Source: ME Advocacy

How is ME/CFS diagnosed?

There is no single laboratory test that can diagnose ME/CFS. Patients have consistent biological abnormalities demonstrated in research settings. Many specialist physicians use these tests to aid in forming a diagnosis, although the diagnosis is at present most frequently made by excluding other conditions that cause similar symptoms and by using one of several diagnostic criteria. Due to lack of education and awareness about ME/CFS, many patients are undiagnosed, misdiagnosed with other conditions, or told that their severe disabilities are imagined.

SOURCE: Open Medicine Foundation

 

Understanding PEM in ME/CFS

How can ME/CFS be distinguished from similar conditions?

Post-exertional malaise (PEM) also referred to as Post Exertional Neuroimmune Exhaustion (PENE) is a distinguishing hallmark symptom of the disease.

Patients with mild or moderate cases of ME/CFS may have brief periods without noticeable fatigue or other symptoms. It doesn’t last long. Within hours or a few days of the activity, the patient experiences a “crash” of feeling sick to the point that they can’t function. 2,3.  It may last hours, days, or weeks. Depending on how bad the episode is, the “crash” symptoms may include a hoarse voice, debilitating fatigue, mental fog, body aches, headache, hot and cold flashes, nausea, and vomiting.

Some patients find they can start off at work feeling pretty good on Monday because they rested over the weekend. By Tuesday afternoon or Wednesday, they are struggling to finish the workday. In addition to mental or physical activity, other triggers for a “crash” include infections, surgery, an accident, or stress.

In severe cases, about 25 per cent of the estimated 1 million Americans with the disease, patients struggle to take care of their daily needs, such as changing clothes and preparing a meal. 4. Some patients with severe ME/CFS are totally bed-bound and too weak to feed themselves, talk or even breath.

Source: Open Medicine Foundation

Different levels of ME/CFS severity:

It is crucial to understand that there are different levels of severity of ME/CFS, especially with regards to management of the disease.

Severe ME and Very Severe ME patients are so ill there is basically zero room for pacing. Brushing their teeth could result in a big crash for these patients.

It is also important to note that ME/CFS patients do not meet the criteria for deconditioning. They have an energy deficit on a cellular level.

Treatment

Resources

Living with ME / CFS

These are real-life relays of people living with ME/CFS around South Africa and all of Africa!

Take the time to visit each persons relay page to get a clear picture of what was stolen from communities and families around the globe, no matter status/culture/race or whatever – ME/CFS doesn’t care about the who/what/where/when or even how – simply just wants to invade the host and rule forever more … or not!

Retha Viviers: Founder

Nathalie

Leigh-Anne

Melanie

ASHANTI

References

  1. Berne K, Ph.D. Author of 1995 book: Running on Empty, The Complete Guide on CFS (CFIDS), pp 57-60, wwcoco.com/cfids/bernesx.html
  2. Christopher D Black and Kevin K McCully, “Time course of exercise induced alterations in daily activity in chronic fatigue syndrome,” Dyn Med. 2005; 4: 10. Published online 2005 Oct 28. doi: 10.1186/1476-5918-4-10, www.ncbi.nlm.nih.gov/pmc/articles/PMC1280928
  3. Brown A, M.A., Evans M, M.A., Jones, N, M.A., and Jason, LA, Ph.D. “Examining the Energy Envelope and Associated Symptom Patterns in ME/CFS: Does Coping Matter?” Chronic Illn. Published in final edited form as: Chronic Illn. 2013 Dec; 9(4): 302-311. Published online 2013 Apr 12. doi: 10.1177/1742395313478220 PMCID: PMC3893101, NIHMSID: NIHMS544489, www.ncbi.nlm.nih.gov/pmc/articles/PMC3893101
  4. Pheby D and Saffron L., “Risk Factors for Severe ME/CFS,” Biology and Medicine, Oct.-Dec. 2009; 1 (4): 50 – 74, www.prohealth.com/library/showarticle.cfm?libid=15073
  5. Forgotten Plague – About ME/CFS
  6. Myalgic encephalomyelitis: International Consensus Criteria
  7. Canadian Consensus – A Clinical Case Definition and Guidelines for Medical Practitioners