ME/CFS

What is ME/CFS

The Australian ME/CFS association states:

‘Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a severe, complex, acquired illness with numerous symptoms related mainly to the dysfunction of the brain, gastro-intestinal, immune, endocrine and cardiac systems. ME has been classified as a neurological disorder in the World Health Organisation’s International Classification of Diseases (ICD 10 G93.3) since 1969.’

Blake Graham has some fantastic information on his site about ME/CFS and its causes.

Symptoms of ME/CFS

‘Symptoms include overwhelming post-exertional fatigue from mental or physical activity; dysfunctional sleep; pain; problems with memory; sensitivity to light, touch and sound; problems with standing and balance; problems with body temperature and weight; and recurrent flu-like symptoms; that persist for at least six months in adults; or three months in children (Carruthers et al, 2003).’

‘The manifestation of symptoms is highly individualised often making diagnosis difficult. Until recently, diagnosis often occurred as the result of elimination tests for other conditions and disease states. The key document for diagnosing ME/CFS is the Canadian Guidelines for Medical Practitioners, which was written by a consortium of worldwide renowned ME/CFS researchers and medical practitioners, published in 2003. This document provides a comprehensive analysis of symptoms, guidelines and a checklist for medical practitioners to make an accurate diagnosis. It is the accepted standard for diagnosis of ME/CFS in Australia and across the world.’

Here again are the guidelines for treating and diagnosing ME/CFS:

Canadian guidelines

Australian guidelines

Dr Bells disability scale

A more detailed, comprehensive list of symptoms includes:

  • Persistent or recurring unexplained mental and physical fatigue that substantially reduces normal activity levels.
  • Post-exertional malaise; following physical and mental exertion there is a worsening of symptoms that may be delayed for 24 hours or more and recovery after activity is slow.
  • Dysfunctional sleep; unrefreshing sleep, inability to fall asleep, excessive, sleep, frequent awakenings, restless legs, abnormal sleep rhythms.
  • Pain; burning, aching and shooting pain in muscles and/or joints, headaches of a new type and severity, widespread tenderness.
  • Cognitive problems; brain ‘fog’ problems with processing and recalling information; difficulty with finding the right word, reading and writing, mathematics and short term memory, losing track of things; forgetting names; disorientation; inability to concentrate on more than one thing; trouble with decision making
  • Light headedness on standing
  • Shortness of breath with exertion
  • Extreme pallor
  • Palpitations
  • Disturbance of balance and clumsiness
  • Muscle twitching
  • Sensitivity to light, touch and sound
  • Nausea
  • Gastrointestinal and urinary problems
  • Sore throat
  • Tender lymph nodes
  • Sweating and feverishness
  • New sensitivities to foods, medications and/or chemicals
  • Intolerance to temperature changes
  • Cold extremities
  • Marked weight change, abnormal weight gain or loss
  • A worsening of symptoms with stressors e.g.: New infection, travel, anaesthetic

It is not restricted to the above symptoms. I suffer the above symptoms plus other symptoms which I wont mention; some are classic but others are just bizarre! Feel welcome to contact me if you want to talk symptons.

What causes ME/CFS?

‘The cause of ME/CFS is a topic of much research and debate. Multiple factors may be simultaneously involved. ME/CFS can follow acute infection, such as glandular fever and upper respiratory infections; a flu-like illness; exposure to chemicals, environmental pollutants or heavy metals; immunisation; and severe physical trauma such as major surgery or a serious accident. Recent research is finding strong links with food malabsorption, food intolerance and gut dysbiosis.’

‘ME/CFS frequently appears with other medical conditions, the most common being Fibromyalgia, a name given to a group of symptoms marked by generalised pain and muscle stiffness felt in any area of the body (Arthritis Victoria, 2009); and Multiple Chemical Sensitivity, a name given to those whose low-level exposure to everyday chemicals (like perfumes and deodorants, cigarette smoke, car exhaust) cause headaches or trigger asthma (AESSRA, 2009). These conditions contribute to the deterioration of the quality of life for people with ME/CFS, and contribute to severity of ME/CFS symptoms.’

Who gets ME/CFS?

‘ME/CFS affects men, women and children of all ages, cultures and socioeconomic backgrounds. The prevalence of ME/CFS is also a contentious topic. In the year 2002, the Royal Australasian College of Physicians (RACP) attributed the prevalence of ME/CFS between 0.2% and 0.7% of the Australian population (RACP, 2002) which is over 180,000 people.’

‘International studies conducted in recent years have put the prevalence of ME/CFS between 0.4% to 2.6% of the population (Jason, 2007) however varying definitions and classifications of ME/CFS have impacted on reporting and diagnosis of the condition. As awareness about ME/CFS among researchers, patients and health practitioners increases, prevalence statistics are also likely to be affected.’

ME/CFS specialists:

I have found the below resources very helpful

Australia

International

Dr Sarah Myhill’s book in Diagnosing and Treating ME/CFS

Blake Graham’s ME/CFS treatment protocol

Dr Kenny De Meirleir’s presentation on the link between the gut and ME/CFS

My take on the causes of ME/CFS

Of course for everyone who suffers ME/CFS the journey to developing the condition is varied as well as what treatment works for them. From my personal experience I believe my condition manifested because of many factors:

Primary susceptibility/Predisposition: Genetics

Genetic abnormalities could relate to immune function, stress response, the bodies ability to detoxify itself, endocrine function, poor gut function, blood coagulation mediators etc. Genes can change because of environmental stimuli you are subject to so it isn’t always because of what you are born with.

Secondary Predisposition: Biological abnormalities

These secondary factors I believe are the most important of all as you can have genetic predisposition for a number of illnesses but it does not mean you will develop these. BUT there are many secondary predisposing factors that can set you up for illness, these include nutrient imbalances, negative effects of low-grade chronic exposures to environmental chemicals, pesticides and chemicals in food, skin care, cosmetics, cleaning products, air pollution; gastrointestinal candida overgrowth and systemic infection; development of type 1, 2,  3 or 4 IgE and IgG allergies; abnormal gastrointestinal flora, leaky gut; various side effects of pharmaceutical medication (the pill, antibiotics, anti inflammatory etc) and immunisations plus many many other factors!

General lifestyle factors play a huge role including not enough rest, too much stress, poor diet and generally just doing too much!

Now to top it all off there is generally a trigger which an individual is subject to which their body, because of the effects primary and secondary factors have had cannot cope with. In the majority of cases this trigger is a viral infection. These may include the Herpes virus Epstein Barr, HHV-6 or Ross River fever etc, but in no way exclusive to.

Generally there are a number of triggers these may include:

  • Again viral infections
  • Bacterial and parasitic infections
  • Toxic chemical exposures
  • Excessive physical activity
  • Traumatic event(s)
  • Vaccination reaction
  • Blood transfusion
  • Long airplane flight
After such trigger/triggers the individual does not return to their previous state of health. For some the onset of ME/CFS is very sudden, for me it was very gradual over many years, starting very mild and becoming severe after a range of triggers. I believe the immune system becomes hyperreactive, TH2 dominant, and in a sense autoimmune, attacking what comes into contact to it from external sources ie: food, environmental toxins, inhalants etc. There is also an over production of pro-inflammatory cytokines.
Other helpful links for ME/CFS information:

3 thoughts on “ME/CFS

  1. I’m so glad I’ve found you! What an amazingly helpful site, thank you so much for finding time to help others whilst dealing with ME. I too have ME and have tried everything to help the healing process. I have recently started paleo but my symptoms seem to be worsening. I have looked at the auto immune paleo but I think that living on meat and vegetables only will be detriment to my health. I already have removed nightshades as I know they contain many toxins and nuts as since doing paelo (just over 3 weeks now) I was developing severe bloating and stomach pain when eating them. I am worried about cutting out too many food groups and that my blood sugar levels will drop drastically. I have also noticed that I seem to be gaining weight and fast, which I wondered if that is “normal”? I’m used to snacking and eating 6 small meals a day rather than 3 meals of protein. I also also finding it hard to snack on paelo since removing nuts and am noticing a difference in my energy levels. I used to eat brown additive free rice cakes with almond butter or avocados or a handful of nuts and a piece of fruit. Can you help with any advise?! I’m really at a loss and am thinking of turning my back on paleo although 😦

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    • Hey Nicole! Thanks so much for you kind words. Sorry to hear you are struggling with this illness and with diet.
      I was like you and had to be constantly eating throughout the day because of hypoglycemia. But I was eating mostly quickly metabolised carbohydrates. For me changing my diet was a slow process. If I knew what I do now I would of made more changes earlier on, but it is also important to be gentle with yourself. Especially when you are ill, abrupt changes may not be ideal. How long has it been since you changed your diet? When I first went off grains and legumes I was still looking for that ‘fix’ and would eat sooo many nuts and experience gut aches daily. It does take the body a while to get used to burning new fuel (more good fats) and less sugar/starch. It is so vital during this transition to include good quality fats for energy and satiation. You will find that your blood sugar levels will stabilise and that you can go for many hours feeling satisfied after consuming a well balanced meal with adequate protein, good fats and carbohydrates from vegetables and fruits. Initially I could not tolerate any fructose, but now I enjoy berries daily to give an antioxidant, vitamin c and b boost and occasionally other higher fructose fruits. Having food pre-prepared in the fridge and freezer is helpful too. Consulting with a nutritionist really helped me during this time of transition. If you like you can email me at amy.southorn@hotmail.com if you would like to speak further about this! I can give you some snack/meal ideas. x

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