Understanding Chronic Fatigue Syndrome: The Science, Symptoms, and Key Steps to Help Support Your Recovery

By Lauren Windas, Registered Nutritionist

 
 

What is chronic fatigue syndrome (CFS)?

Chronic fatigue syndrome (CFS) is a complex, chronic illness that significantly impacts the lives of those who experience it. It impacts various bodily systems including the neuroendocrine, nervous, immune and digestive systems, with evidence that there is a dysregulation between these systems, helping to explain the complex picture of symptoms that are seen in the illness.

CFS has been known by various names throughout its history, such as Myalgic Encephalomyelitis (M.E), post-viral fatigue syndrome, and was even colloquially referred to as "Yuppie flu" during the 1980s, due to being widespread amongst 20 to 30-year-old working professionals. 

More recently, a new term has emerged in the medical discourse following the global pandemic in 2020: Long COVID. This term gained prominence as the medical community observed a significant rise in individuals experiencing persistent symptoms after contracting an (often mild) SARS-CoV-2 infection, which mirrored the classic symptoms associated with CFS.

Whilst experts are actively researching whether Long COVID is a distinct condition from CFS, it is undeniable that there is a substantial overlap between the two. As research into Long COVID progresses, this will bolster our collective insights into CFS as well.

What are the symptoms of CFS?

  • Persistent fatigue

  • Post-exertional malaise (this is often referred to as PEM, a crucial diagnostic marker where fatigue and other CFS symptoms worsen following any exercise, activity, or exertion)

  • Cognitive impairment, which may manifest as brain fog, memory issues, and difficulty concentrating

  • Painful muscles and joints (myalgia)

  • Gastrointestinal symptoms such as those common in irritable bowel syndrome (IBS), including bloating, indigestion, constipation, and diarrhoea

  • Intolerance to certain foods and alcohol

  • Heightened sensitivity to chemicals, odours, temperatures, light, or noise

  • Heart palpitations

  • Episodes of vertigo and dizziness

  • Recurring flu-like symptoms

  • Orthostatic intolerance, where symptoms exacerbate upon standing

What is the cause of CFS?

We don’t know exactly what causes CFS. However, the evolving body of evidence is starting reveal key insights into the contributing factors at play.

As a result, CFS can be characterised into three key components:

  1. Predisposition

  2. Precipitating triggers

  3. Perpetuating factors


Predisposition:

Its widely acknowledged that CFS may have a genetic component. In 2001, a twin study investigated concordance rates related to CFS, which assess the likelihood that two individuals sharing the same genes will develop the same disease. The results of the study reveals a significantly higher concordance rate among identical twins compared to non-identical twins, which indicates that genetic factors, rather than environmental ones, may elevate the risk of somebody developing CFS.

In 2020, a research grant was awarded to further investigate potential genetic links to CFS. The Decode ME study, a collaborative effort involving researchers, individuals with CFS, caregivers, and advocates, is spearheaded by the ME/CFS Biomedical Partnership. This study is currently exploring DNA characteristics that may predispose someone to developing CFS. As our understanding of CFS continues to evolve, these endeavours hold promise for unveiling more insights into the genetic underpinnings of the illness.

Precipitating triggers:

Evidence also indicates that there is often a trigger episode that causes the onset of somebody becoming unwell with CFS. An investigation into the precipitating factors of CFS revealed:

  • 72% of patients reported the onset of their illness following an infectious illness

  • 28% of patients experienced no apparent infectious trigger but instead linked their condition to a traumatic event, such as a car accident, a fall, or surgery.

  • Stressful life events were also commonly cited in the year leading up to the onset of the illness.


In my clinical practice, roughly 90 percent of the CFS patients I encounter mention recently experiencing an infection (primarily viral, though occasionally bacterial or parasitic). It becomes evident how the term "post-viral fatigue syndrome" was coined in such cases.

However, the onset of CFS is not exclusively tied to infections. I've also seen clients who became unwell following recent surgical procedures. Additionally, some individuals had glandular fever in childhood, only to develop CFS years later after experiencing a significant traumatic or stressful event. Others were asymptomatic carriers of infections before succumbing to CFS. There have even been reports of CFS occurring after vaccination, breast implant surgery, and exposure to chemical toxins.

These scenarios all represent classic examples of a "haven't been well since..." situation.

Perpetuating factors:

In addition to the factors that make someone predisposed to develop CFS and the things that can trigger its onset, there are also other factors that can keep the symptoms going. Left unaddressed, they can perpetuate the symptom cycle and impede recovery.

These perpetuating factors include:

  1. Dysregulated systems: When the body's physiological processes are not working sufficiently and are out of balance. Examples of systems that can become dysregulated in CFS include the autonomic nervous system (ANS), the neuroendocrine system, the immune system, mitochondria and the digestive system.

  2. Chronic stressors: These are ongoing problems in the body that can be triggered by factors such as not having enough of something your body intrinsically needs (aka deficiencies) or having too much of something harmful (aka toxicities).

Examples of deficiencies: nutritional deficiencies (such as B vitamins, iron, antioxidants), thyroid insufficiency, mitochondrial and adrenal insufficiency. 

Examples of toxicities: infections, allergies, oxidation, inflammation, gut dysbiosis, stress and trauma, as well as environmental toxic overloads including raised exposure to heavy metals and mould.


What steps would you recommend somebody with CFS take when first embarking on their recovery journey?

When you are beginning your recovery journey from CFS, here are my top 5 tips to consider when starting out:

  • Pace your activity levels:


One of the fundamental strategies I teach to my CFS clients is the concept of pacing, which plays a crucial role in supporting their recovery. Pacing is an energy management technique that aims to strike a harmonious balance between activity and rest. It involves living within the physical and mental limitations imposed by the illness for a period, avoiding activities that worsen symptoms, and potentially incorporating scheduled rest breaks around any activity undertaken.

To pace effectively, it's essential to assess your daily activities carefully and adjust them to a level that your body can handle without falling into the "boom-and-bust" cycle, which often occurs when you push beyond your activity threshold and subsequently experience a crash.

This process begins with identifying your baseline — which is the level of activity, whether physical, mental, or a combination of both, that you can comfortably sustain for at least three to four consecutive days without provoking symptoms. Once you've determined your baseline, the pacing approach involves reducing it by 25%, creating a buffer for rest, allowing your energy levels to gradually replenish. Over time, you can slowly reintroduce more activity into your routine while closely monitoring your body's response for any emerging symptoms.

This structured approach empowers my clients to eventually build up their activity levels, helping them to function without experiencing crashes or post-exertional malaise (PEM).

For more comprehensive guidance on pacing, please refer to Chapter 15 of my book, "Chronic Fatigue Syndrome: Your Route to Recovery."

  • Speak to your GP:

Begin by consulting your doctor to initiate the process of ruling out other potential causes of your symptoms and to help obtain an official diagnosis. It's advisable to seek a doctor who is not only open-minded and supportive but also somebody who fully recognises CFS as a legitimate condition with a physical basis (this is because CFS has a history of being psychologised).

If your current GP doesn't align with these criteria, remember that you have the right to seek second or even third opinions until you find a healthcare professional who meets your needs. You can enquire with the receptionist at your current practice to see if any of the doctors there have experience working with CFS patients or those with other complex chronic illnesses. Alternatively, if necessary, you can request a referral to another local medical practice.

If you struggle with memory and concentration during appointments, consider bringing a partner, friend, or family member along with you to assist in discussing your health concerns. Additionally, if you anticipate needing more time to address your issues thoroughly, it's a good idea to book a double appointment to ensure you have ample opportunity to communicate your health concerns.

  • Explore functional testing:


Functional testing assesses the body's overall functioning and can be conducted through private laboratories, typically arranged with the assistance of healthcare providers like nutritionists. Most of these tests allow for samples to be collected at home, although occasionally, a nurse or phlebotomist may need to perform a blood draw.

In contrast to NHS testing, which primarily focuses on markers for diagnosing diseases, functional testing concentrates on identifying dysfunction through markers supported by extensive clinical data. I often recommend functional testing on a case-by-case basis for my clients dealing with CFS, depending on their specific symptoms and medical history.

Some examples of tests that I may recommend for individuals with CFS include:

  • Adrenal function testing

  • Analysis of the microbiome (gut health)

  • Assessment of thyroid function

  • Testing for chronic infections (including chronic Lyme disease)

  • Organic acids testing

  • Genetic testing

  • Toxicity screening

Following the interpretation of your lab results by your practitioner, you will receive tailored nutrition, lifestyle, and supplement recommendations. These personalised protocols provide you with a unique roadmap for your health journey, customised to address your functional health.

Please note that the most appropriate functional test(s) for you will depend on your individual case and circumstances.

  • Enhance your nervous system health:

While CFS primarily manifests as a physical illness, it significantly impacts physiological functions. This underscores the importance of the mind-body connection in the CFS health and recovery journey because what we think can ultimately shape our physiology and physical symptoms.

In simple terms, if you frequently have thoughts (which can sometimes be subconscious) that revolve around CFS symptoms, negative perceptions of your health, or spiral when symptoms worsen, it can activate your nervous system's stress response. Repeatedly activating this "fight-or-flight" response can hinder key physiological processes, affecting your energy levels, digestion, and so much more.

So what can you do to take back control? Redirect your focus towards relaxation techniques and mindfulness practices that shift your body into a healing state conducive to recovery. Examples include breathwork, meditation, journaling, and seeking support from a therapist who specialises in mental health. It's worth noting that we have psychology services available at the ARDERE clinic to assist individuals in this regard.

Addressing belief barriers is also a pivotal aspect of my work with CFS clients because so many individuals may not believe in their potential for recovery. Overcoming these obstacles is an integral part of the process to help move the needle in my client’s wellbeing.

It’s also important to never blame yourself for your situation. Dealing with a chronic illness like CFS can profoundly alter life's course, impacting your mindset and this can certainly be a challenge to adjust to. Be compassionate toward yourself, practice acceptance, and cultivate heightened self-awareness while also fostering gratitude for the valuable lessons learned from your illness journey. This can significantly reshape your narrative and empower your progress along the path to recovery.

  • Eat a well-balanced diet:

It's a widely acknowledged fact that your dietary choices profoundly impact your overall health. But did you realise that your food choices can have a significant influence on your energy levels, immune function, digestive health, mood, and much more? In the context of CFS, it's important to focus on dietary adjustments that support the wellbeing of your physiological systems, to promote recovery.

I firmly believe in the principle of bio-individuality, which recognises that each person has unique biochemical needs when it comes to nutrition. Nevertheless, I've observed some common patterns among my CFS clients, including prevalent food intolerances and sensitivities that can often trigger their symptoms. These commonly involve culprits such as gluten, dairy, FODMAPs, and histamine-rich foods.

In essence, my approach involves collaborating with clients to help them discover a dietary regimen aligned with their individual tolerance profiles. This dietary plan aims to reduce inflammation, maintain stable blood sugar levels throughout the day, whilst fostering a flourishing gut microbiome through increased fibre intake. I often advocate for balanced meals, such as:

  • A portion of lean protein (e.g., chicken, fish, prawns, beef) about the size of your palm.

  • Two servings of non-starchy vegetables (e.g., rocket, bell pepper, tomatoes, onions, garlic) equal to two handfuls.

  • A portion of complex carbohydrates (e.g., sweet potato, chickpeas, lentils) roughly the size of your fist.

  • One to two servings of healthy fats (e.g., avocado, olive oil, nuts, and seeds) about the size of your thumb.

*For vegan clients, the focus shifts to dedicating half the plate to plant-based proteins derived from a combination of carbohydrate and fat sources, while the other half is filled with non-starchy, fibre-rich vegetables with ample variety.

Dietary diversity is another key strategy I emphasise in my nutrition and wellness practice. This entails incorporating a variety of plant sources (fruits, vegetables, nuts, seeds, whole grains, legumes, herbs, and spices) and experimenting with at least two new ingredients each week. By constantly varying your food choices, you provide your gut with a cocktail of different fibres. Did you know that fibre nourishes your gut bacteria, enabling them to produce anti-inflammatory compounds that safeguard your health and alleviate chronic symptoms?

That’s why I encourage you to experiment—try incorporating two new plant-based ingredients into your diet each week and make a conscious effort to avoid eating the same foods day in and day out. While we naturally gravitate toward familiar choices, remember that diversity adds zest to life and offers remarkable rewards for your wellbeing!

For more information, science and support when it comes to Chronic Fatigue Syndrome, get your copy of Lauren's book "Chronic Fatigue Syndrome: Your Route to Recovery" by clicking here.

 
 

ABOUT THE AUTHOR:

Lauren Windas,
Registered Nutritionist

Lauren Windas is a renowned registered Nutritionist, Naturopath, Author of “Chronic Fatigue Syndrome: Your Route to Recovery”, and co-founder of ARDERE.com, a holistic wellbeing company, comprising of a private wellness clinic and natural self-care products.

Lauren runs a clinical practise which involves working with clients who suffer with chronic fatigue and post-viral conditions (including ME/CFS and Long COVID), as well as IBS and digestive concerns, and also supporting those struggling with their weight or poor relationships with food (disordered eating). Lauren is also qualified as a Master Practitioner in Eating Disorders and Obesity with the National Centre for Eating Disorders (NCfED) and has a diploma in NLP.

Lauren journeyed into the world of wellbeing and nutrition as a result of her own health problems at university with CFS and IBS, which led her to support others who are battling chronic illness.

Lauren has appeared on numerous health and nutrition podcasts, including The Liz Earle Wellbeing Show, The Medicinal Chef’s “Nutrition Nuggets” podcast and CNM’s Natural Health podcast. She has contributed writing and comments towards various publications including British Vogue, The Telegraph, Women’s Health, Harper’s Bazaar, Marie Claire, SheerLuxe and Cosmopolitan.

Mindset, Eating Disorders, Nutrition, SleepSarah Macklin