Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)

Do you have some of the following symptoms:

Fatigue not relieved by rest and made worse by exercise or activity, mental or physical
Brain fog, cognitive impairment
Muscle pain, weakness, fainting
Pain in the joints without swelling or redness
Headaches of a new type, pattern, or severity
Swollen or tender lymph nodes in the neck or armpit
A sore throat that is frequent or recurring
Chills and night sweats
Visual disturbances, sensitivity to light and sound
Multiple allergies or sensitivities odours, chemicals, or medications
IBS type symptoms, constipation, multiple and often changing food sensitivities
Nausea, dyspepsia
Depression or anxiety that may be a result of the condition, rather than the cause

Chronic fatigue syndrome is a multi-systemic debilitating condition which may be diagnosed as myalgic encephalitis (ME) and may share similarities with post-viral illness. You may not have received a diagnosis, or may have been told you have fibromyalgia or even depression.

Patient story:

I have been sick for over a year now, and have been off work for 12 months. I have severe brain fog and cognitive impairment. I spend half the week in bed at this point and when I’m tired I can’t handle noise or people. I was put on anti-depressants 6 months ago though I didn’t feel depressed – they had minimal impact.

At first follow up appointment: I am already feeling a bit more like myself, a more normal version of tired but I have some more better days than I used to. I feel more enthusiastic about things. I did the school run for the first time in the whole year. It felt nice to be doing things. I know it is not an overnight fix but I think we are moving in the right direction.

Definition of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome – Institute of Medicine (2015)¹

Diagnosis requires that the patient have the following three symptoms:

Fatigue A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest
Post-exertional malaise* Worsening of symptoms after physical, mental, or emotional exertion that would not have caused a problem before the illness. PEM often puts the patient in relapse that may last days, weeks, or even longer. For some patients, sensory overload (light and sound) can induce PEM. The symptoms typically get worse 12 to 48 hours after the activity or exposure and can last for days or even weeks

AND

Unrefreshing sleep* Patients with ME/CFS may not feel better or less tired even after a full night of sleep

At least one of the two following manifestations is also required:

Cognitive impairment* Problems with thinking, memory, executive function, and information processing, as well as attention deficit and impaired psychomotor functions. All can be exacerbated by exertion, effort, prolonged upright posture, stress, or time pressure, and may have serious consequences on a patient’s ability to maintain a job or attend school full time.

Orthostatic intolerance Symptoms including light-headedness, fainting, increased fatigue, cognitive worsening, headaches, or nausea are worsened with quiet upright posture (either standing or sitting) during day-to-day life and are improved (though not necessarily fully resolved) with lying down. This may be measured in a clinical setting by analysing heart rate, blood pressure anomalies and other tests such as tilt testing.

*Patients should have these symptoms at least half of the time with moderate, substantial, or severe intensity.

Cause/ onset:

Genetic – There may be a genetic predisposition which increases risk and women are more likely to have this condition – see x.

Predisposing factors/ compounding issues – history of infections, contaminated water, possibly mould exposure, toxic chemicals, heavy metals, severe physical trauma such as whiplash/spinal injury/surgery, traumatic brain injuries and severe psychological stress

Trigger – The onset of chronic fatigue syndrome is usually associated with a viral infection, where symptoms of chronic fatigue arise after the initial acute illness. Viruses associated with ME/CFS include Epstein Barr virus (EBV), Human herpes virus (HHV 6 and 7), Cytomegalovirus (CMV), Parvovirus B19 and also bacteria such as Clamydophila pneumonia, Mycoplasma and Coxiella burnettii. Lyme disease caused by Borrelia species and other co-infections also share many similarities.

Identifying a trigger and other compounding factors can sometimes feel like a needle in a haystack unfortunately.

What is going on in the body?

ME/CFS is a multi-system condition. Every patient has a different set of symptoms, some which they might find more debilitating than the next. Prioritising systems is a goal of your nutritional therapist/ functional medicine practitioner. Full recovery may not be expected but improvement of symptoms and management of the condition can be helpful.

Can Nutrition help?

Nutrition will play an important role in recovery as many foods we eat can actively reduce inflammation and support balance in the immune system. In addition, 80% of our immune system surrounds the gut and our microbiome plays a critical role in balancing the immune response. Feeding the microbiome with fibre and polyphenols in a brightly coloured fruits and vegetables is important.

Supplying our bodies with good amounts of essential nutrients can fuel energy production. There is often very high demands for nutrients, so you may need more than just an average healthy diet. We can advise you on supplements as they are needed.

Immune imbalance

Immune imbalance is common to the chronic fatigue condition. A number of studies have identified commonalities such as reduced NK cell function and altered T cell responses, including altered T regulatory cells^2,3. It is believed that after an initial triggering infection, and due to predisposing factors, the immune system does not fully recover. Messages between immune cells become confused and lasting sickness behaviour results even after the initial acute infection is over.

Sickness behaviour – the immune response requires high amounts of energy. In order to conserve energy, pro-inflammatory signals (during infection) enter the brain and induce energy conservation including fatigue, lethargy, reduced activity, behavioural inhibition, failure to concentrate and reduced cognitive activity, malaise and anhedonia (inability to feel pleasure).

Restoring immune balance in chronic fatigue syndrome means restoring NK cell and Treg cell function along with reducing pro-inflammatory signals in the brain.

Best Tests

Advanced Immune profile (very comprehensive) OR NK cell activity

Energy production

An immune imbalance, as when sickness behaviour is induced, tells our body not to use or waste energy. Therefore correcting this signal might be considered a first step in recovery. Prescribing exercise in chronic fatigue syndrome is not recommended – overdoing it, pushing yourself or trying even to build up to an exercise routine gradually can all make things worse⁴.

We also need to support energy production. The mitochondria inside our cells are responsible for creating the molecules of energy from the food we take in. The metabolism is a complex web of interactions and chemical reactions which requires a vast number of nutrients as co-factors. Some of these are common deficiencies, particularly when we are under stress and recovering from infection or have ongoing immune imbalance. It is necessary to restore any deficiencies that might be slowing down energy production.

Beyond this, there may be damage to the mitochondria during inflammation. Increasing antioxidant support to protect the mitochondria is often warranted and there are some clinically proven supports which some patients can find effective.

Best Tests

ATP production (energy molecule produced by mitochondria)

Digestion/ microbiome

The microbiome plays an essential role in immune balance. Beneficial bacteria may be depleted in chronic illness and restoring good gut function is a very important step. Unwanted bacterial growth, yeasts or parasites can further upset immune balance and may need to be addressed. If there is inflammation coming from the gut, this might be a major driver of immune issues systemically.

Given that many people with ME/CFS experience digestive symptoms and often changing food intolerances, it will be important to work with a Nutritional Therapist to slowly augment the diet to support gut health and reduce gut symptoms rather than exacerbate. Including a diet high in polyphenols, such as found in brightly coloured fruits, vegetables and herbs, can be very beneficial to immune balance and support reduction of inflammation in the brain. However, many of these polyphenols act via the beneficial bacteria in the gut so this may need improvement first. We will work with you to prioritise dietary interventions, it is not a once size fits all.

Best Tests

GI Ecologix Stool analysis

Hormonal interactions

There is higher incidence of ME/CFS and post-viral illness in women. Some patients will feel like their symptoms wax and wane through the menstrual cycle and hormonal imbalances could impact their wellbeing further.

Cis-gender females express immune receptors differently to males, having higher responses to viral infection, producing more antibodies and more severe reactions also to immunisation for example⁵. A higher immune response is associated with greater risk of developing post-viral fatigue. In addition, this increases the risk for autoimmune disease in women also – when the immune cells get confused and mount a response against self.

Low oestrogen in the perimenopause or menopause can also mimic a number of symptoms and be a significant confounding factor in recovery. Ageing also impacts the immune system in females differently, with effects on NK cells which are already implicated in the pathology of ME/CFS.

Best Tests

DUTCH Comprehensive Hormones Test

Detoxification

This may not relate to everyone but if you can identify some compounding factors such as heavy metals, exposure to chemicals or mould sensitivities, supporting your natural detoxification pathways may be helpful to reduce toxic burden and improve some of your symptoms. Your detoxification protocol should be carefully designed by your nutritional therapist/ functional medicine practitioner in relation to your current level of health.

Best Tests

Mould toxicity

Glyphosate levels

Heavy metals

Other factors/ causes of fatigue

Adrenal function may be impacted by illness. Often lifestyle interventions are important including maintaining a good circadian rhythm and utilising gentle approaches that will not exacerbate fatigue.

Thyroid function is critical to immune balance, energy production, hormone production and digestion amongst other systems. It is essential to rule dysfunction in or out as a confounding factor.

Nutrient deficiencies like iron, B12, zinc, magnesium are not the cause but can be overlooked.

Best Tests

DUTCH Adrenal profile

Thyroid testing – comprehensive panels via at-home pin prick test or phlebotomy via our clinic

Functional Nutritional Profile – blood test for nutrients

Where to start?

Because ME/ CFS is a complex and multifactorial illness, it is best to have an initial consultation with our team so that we can tailor your protocol specific to you.

Make an Enquiry

References

Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine (2015) Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness Washington (DC): National Academies Press (US); 2015 Feb 10
Rivas etc al (2018) Association of T and NK Cell Phenotype With the Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Front Immunol 9;9:1028
Curriu et al (2013) Screening NK-, B- and T-cell phenotype and function in patients suffering from Chronic Fatigue Syndrome. J Transl Med 11:68
Loy etal (2016) Effect of Acute Exercise on Fatigue in People with ME/CFS/SEID: A Meta-analysis Med Sci Sports Exec 2016 48(10): 2003-2012
Klein (2012) Sex influences immune responses to viruses, and efficacy of prophylaxis and therapeutic treatments for viral diseases. 34(12): 1050–1059.