Here’s What You Need To Know About Chronic Fatigue Syndrome (CFS)

What is chronic fatigue syndrome (CFS)?

Chronic fatigue syndrome (CFS) is a complex, chronic health condition that has a profound impact on the lives of those affected. It affects various bodily systems, including the neuroendocrine, nervous, immune, and digestive systems. There is evidence suggesting that there is a dysregulation among these systems which contributes to the vast array of symptoms seen in the illness.  

Throughout its history, CFS has been known by many different names, such as Myalgic Encephalomyelitis (M.E), post-viral fatigue syndrome, and colloquially as "Yuppie flu" in the 1980s, given its prevalence among working professionals aged 20 to 30.

More recently, a new term has surfaced in medical discussions following the global pandemic in 2020: Long COVID. This term gained attention as the medical community noticed a significant increase in individuals experiencing persistent symptoms after contracting an (often mild) SARS-CoV-2 infection, which resembled the classic symptoms associated with CFS.

While researchers are actively investigating whether Long COVID is a distinct condition from CFS, it is certainly evident that there is a substantial overlap between the two. And, as research on Long COVID advances, this will contribute to our collective understanding of CFS over time, too.

Written by Lauren Windas, renowned registered Nutritionist, Naturopath, Author of “Chronic Fatigue Syndrome: Your Route to Recovery”, and co-founder of ARDERE.com 

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).

What are the key symptoms of CFS?

• Persistent fatigue

• Post-exertional malaise (commonly referred to as PEM, a critical diagnostic indicator of the illness which is characterised by a worsening of fatigue and other CFS symptoms after any form of exercise, activity, or exertion)

• Cognitive dysfunction such as brain fog, memory challenges, and difficulty concentrating

• Painful muscles and joints (myalgia)

• Gastrointestinal issues resembling those found in irritable bowel syndrome (IBS), including bloating, indigestion, constipation, and diarrhoea

• Sensitivity or intolerance to certain foods and/or alcohol

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

• Heart palpitations

• Episodes of vertigo and dizziness

• Recurrent flu-like symptoms

• Orthostatic intolerance, where symptoms worsen upon standing

What causes CFS?

The exact cause of CFS remains unknown, however an emerging body of evidence is shedding light on the contributing factors involved. As a result, CFS can be categorised into three main components.

Predisposition: It is widely acknowledged that CFS may have a genetic component. A 2001 twin study found a significantly higher concordance rate among identical twins compared to non-identical twins, indicating that genetic factors may elevate the risk of somebody developing CFS. In addition, a collaborative project involving researchers, individuals with CFS, caregivers and patient advocates began in 2020 called The Decode ME study, which is delving further into potential genetic links, holding promise for unveiling more insights into the genetic underpinnings of the illness.

Precipitating Triggers: Evidence suggests that there is often a triggering episode that leads to the onset of CFS. Investigations into precipitating factors revealed that 72% of patients reported the onset of their CFS following an infectious illness, while 28% linked their condition to a traumatic or stressful life event. Clinical observations indicate that infections, traumatic events, surgeries, and even vaccinations can serve as triggers, representing a classic "haven't been well since..." scenario.  

Perpetuating Factors: Apart from predisposing and triggering factors, there are additional elements that can perpetuate CFS symptoms if left unaddressed, impeding recovery. These include dysregulated systems, which is where physiological processes such as the autonomic nervous system, neuroendocrine system, immune system, mitochondria, and digestive system are not functioning properly. Chronic stressors, stemming from deficiencies (e.g., nutritional deficiencies, thyroid or mitochondrial insufficiencies) and toxicities (e.g., infections, allergies, inflammation and/or environmental exposures), can also contribute to the perpetuation of CFS symptoms and form part of the pie of our understanding of the illness. Examples of deficiencies range from B vitamins to antioxidants such as CoQ10, while toxicities encompass chronic infections (e.g., Epstein Barr), stress, environmental toxins, and heavy metal exposure.

Understanding these three components provides a comprehensive framework for exploring the complexities of chronic fatigue syndrome and helping to support patients on their health journeys.

What first steps would you advise somebody take if they are just starting on their CFS recovery journey?

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

1. Pace Your Activity Levels: One of the key techniques I emphasise to my CFS clients is pacing, which is an essential factor to support recovery. Pacing serves as an energy management strategy, aiming to strike a balance between levels of activity and rest. Pacing is about staying within the limitations (both physical and mental) which are imposed by the illness for a period of time, avoiding the activities that worsen symptoms and incorporating scheduled rest intervals around any activity that is undertaken.  

In order to pace effectively, it is important to assess your daily activities meticulously, adjusting them to a level that your body can handle without falling into the “boom-and-bust” cycle, which is common when you are pushing beyond your activity threshold, leading to subsequent crashes.

The process of pacing begins by identifying your baseline – which is the level of activity (physical, mental or a combination of both) that you can comfortably sustain for at least three to four consecutive days without triggering symptoms. Once your baseline has been established, the pacing method involves reducing this level of activity by 25%, creating space for rest to allow energy to be recuperated. With time, you can gradually reintroduce more activity while closely monitoring your symptoms against this, tweaking as you go.

This systematic approach empowers my clients to gradually increase their activity levels over time, enabling them to function more optimally without encountering frequent crashes or post-exertional malaise (PEM).

2. Consult Your GP: Start by consulting a doctor to rule out other potential causes of your symptoms and to help secure an official diagnosis. I would advise seeking out a doctor who is open-minded and supportive and who fully recognises that CFS is a legitimate physical condition (this is because CFS has a history of being psychologised).  If needed, remember that you can always explore second or third opinions until you find the right healthcare professional who validates you and your symptoms. If you struggle with poor memory and concentration during your doctors’ appointments, then why not bring a friend or family member to help you out? You can also book double appointments to have more thorough discussions regarding your situation.  

3. Consider Functional Testing: Functional testing is a form of testing that assesses the body’s overall physical functioning and can be ran through private laboratories, which are typically arranged or organised via functional medicine providers or nutritional therapists. Functional tests include adrenal function, microbiome analysis, thyroid function and chronic infection testing, which can provide greater insights regarding dysregulations beyond traditional NHS testing. Tailored nutrition, lifestyle and supplement recommendations based upon your test results can thereafter be offered, providing you with a personalised roadmap for your health journey moving forwards.  

4. Prioritise the Health of Your Nervous System: While CFS primarily manifests as a physical illness, it significantly impacts physiological functions. This highlights the importance of the mind-body connection in the recovery journey from CFS and this is because the thoughts we think can ultimately shape our physiology and physical symptoms.  Put simply, persistent thoughts—sometimes subconscious—centred around CFS symptoms or negative perspectives about your health, especially during symptom aggravations, can trigger your nervous system's stress reaction. If you are continuously activating this "fight-or-flight" response, this can impede crucial bodily functions, impacting your energy levels, digestion, and various other aspects of health.

So instead, I would advise that you redirect your focus towards relaxation techniques and mindfulness practises. Combat stress responses triggered by negative thoughts through breathwork, meditation, and seeking mental health support. Addressing belief barriers is also integral to fostering a positive mindset about recovery, with self-compassion and gratitude playing pivotal roles in reshaping your narrative around chronic illness as well.

It's also important to avoid placing blame on yourself for your circumstances. Dealing with a chronic illness like CFS can drastically alter life's trajectory, affecting your mindset, which can indeed pose a challenge to adapt to. Show yourself some compassion, embrace acceptance, and nurture a deeper self-awareness while also fostering gratitude for the invaluable insights gained from your journey with this illness. This can significantly reshape your story and fuel your progress on the recovery journey as you learn more about yourself and your resilience.

5. Adopt a Well-Balanced Diet: It's widely recognised that your dietary decisions profoundly affect your overall well-being. But in particular, they can have a significant impact on your energy levels, immune function, digestive health, mood, and much more. In the context of CFS, its important to focus on dietary adjustments to support your physiological systems as a key component of recovery.

I firmly believe in the concept of bio-individuality, which acknowledges that each person holds unique biochemical and nutritional needs. That being said, I've also noticed a few common trends among my CFS clients, particularly food intolerances and sensitivities which are often triggered by culprits including gluten, dairy, FODMAPs, and histamine-rich foods.  

Ultimately, my approach involves collaborating with clients to craft a dietary plan aligned with their unique tolerance levels. The aim is to reduce inflammation, stabilise blood sugar levels, and nurture gut health through increased fibre intake and removing trigger foods while the gut can repair and restore. I often advocate for my clients to eat balanced meals such as below:

• A palm-sized portion of lean protein (e.g., chicken, fish, beef).

• Two handfuls of non-starchy vegetables (e.g., rocket, bell pepper, tomatoes).

• A fist-sized portion of complex carbohydrates (e.g., sweet potato, lentils, brown rice).

• One to two thumb-sized servings of healthy fats (e.g., avocado, nuts, seeds, extra virgin olive oil).

For vegan clients, the focus shifts towards plant-based proteins (half the plate), paired with fibre-rich vegetables (the other half of the plate) for dietary balance. Plant proteins should always come from a mixture of complex carb- and fat-sources, rather than one or the other, so keeping the variety there as much as possible.  

Promoting dietary diversity is also absolutely crucial. I always recommend my clients embrace various plant sources and experiment with new ingredients weekly to enrich their gut with a diverse cocktail of fibres. Did you know that fibre nourishes your gut bacteria and acts as a food source for them to synthesise anti-inflammatory compounds (known as short-chain fatty acids) which can help to alleviate chronic symptoms? Knowledge is power, which fosters motivation and habit change!  

So, I encourage you to experiment – why not try two new plant-based ingredients each week and avoid monotonous eating? Diversity of the diet adds vitality to life and offers substantial rewards for your overall wellbeing! Its such a great investment in your overall health and longevity!

What types of supplements do you commonly recommend to your clients with CFS?  

When it comes to supplementation in CFS, it really depends on identifying the root cause of your concerns and addressing the identified chronic stressors from there. This involves factoring in your main presenting symptoms, medications you are taking, life stage and co-morbidities.

I always say that supplementation is entirely personal and should never replace the diet (my motto is always that you cannot out-supplement a poor diet – therefore it’s a good idea to make the nutritional changes outlined above as a starting point). All that being said, there are some fabulous and very supportive supplements out there that can indeed support the body’s physiology, cellular health and longevity, and some of these include:

• Magnesium Glycinate

• N-A-C

• B complex

• Ashwagandha KSM-66

• Omega 3

• Vitamin C and D

• Quercetin

• Zinc

• Phosphatidylcholine