Living with ME often called chronic Fatigue

Understanding and Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a debilitating long-term neurological condition that affects the nervous and immune systems. In this weeks blog I aim to provide an in-depth understanding of ME/CFS by exploring its impact on everyday life, its symptoms, causes, recognition challenges, exacerbating factors, available management strategies, and limitations it imposes on individuals' lives.

Living with ME/CFS significantly affects individuals' everyday life, leading to physical, cognitive, and emotional challenges. The following aspects illustrate its impact:

Fatigue and Energy Depletion: Overwhelming fatigue and exhaustion often persist, even after minimal physical or mental exertion. Simple daily tasks can become exhausting, leading to a significant reduction in energy levels and a need for frequent rest periods. This isn’t like your normal tired, it’s beyond tired where your systems can begin to shut down, your cognitive function slows and everyday things are a struggle, from getting dressed, going to the toilet, eating or even sitting. The worst thing to say to someone living with ME is, ‘I’m tired too!’ Unless that person also has ME there is no understanding to be held. For ME tired means the body is slowing, shutting down slowly and function is hard to control . 

Cognitive Dysfunction: people with ME/CFS commonly experience cognitive impairments, known as brain fog. This includes difficulties with memory, concentration, information processing, and maintaining focus. These cognitive challenges can affect work, education, and personal life. Even talking at times is hard and words become slurred or slowed, often being accused of being under the influence, or slow to respond, it can be humiliating and demoralising as the search for the right words becomes frustrating. 

ME/CFS presents with various physical symptoms, including muscle and joint pain, headaches, unrefreshing sleep, flu-like symptoms, and dizziness. These symptoms can fluctuate and persist for extended periods, hindering daily functioning and quality of life. Often made worse by stress, anxiety, extreme heat or cold, change in situations, change in routine or external pressures, nothing helps during a flare and it can bring about sudden onset and deep depression as the daily life becomes limited. 

Individuals may develop heightened sensitivities to noise, light, and certain environmental factors, leading to sensory overload and exacerbation of symptoms. Often not understood by those around them, and sufferers may feel frustrated at the lack of understanding. 

ME/CFS is characterised by a range of symptoms, many of which are not readily visible. The following are the most commonly reported symptoms:

Debilitating Fatigue: Persistent, unexplained fatigue that is not relieved by rest or sleep, often referred to as post-exertional malaise (PEM).it can feel like coming round from a general anaesthetic, with lack of control over the body, it’s function and fine motor skills, also the tiredness is not even measurable against normal tiredness, truly upsetting ME sufferers when others measure their usual tired against that of an ME condition. Those with ME  are tired of being tired and when faced against lack of understanding it becomes demoralising and isolation, if you come across a person with ME who shares they’re tired, don’t measure your own tiredness against theirs, instead ask if you can help support them. 

Difficulties with concentration, memory, information processing, and word retrieval is common and everyday life for one with ME and allowing the person the time to share and speak is vital. The ME sufferer has to choose between events, socialising , work or family, as they simply cannot do all. Often having to let go of  things that bring happiness and choosing responsibilities instead. 

Unrefreshing sleep, insomnia, and disturbances in the sleep-wake cycle.one of the cruelest aspects for ME as the fatigue can be soul destroying, and most would expect after a good nights sleep to feel refreshed. Sadly with ME sleep makes it worse, often broken or short sleep cycles makes for a worsening of symptoms. 

Muscle and joint pain, headaches, sore throat, and tender lymph nodes. Often feeling fluey and as if coming down with something but nothing ever materialises from it  as the immune system is already on high alert, it’s trying to battle illness that isn’t there, so when infection comes along the body is already tired. This heightens symptoms and exacerbates them, they often last for months instead of a week or two in regular people. 

Autonomic Dysfunction: Dizziness, orthostatic intolerance, and problems with temperature regulation. Feeling space or as if you are going to faint is also another aspect and every movement has to be calculated before it’s taken, trips out, shipping, visits to the drs have to be worked through prior to understanding them. Adverse temperatures have a negative impact on the body’s own internal systems, and can suffer heat exhaustion and also cold exhaustion. 

Gastrointestinal Issues: Irritable bowel syndrome (IBS)-like symptoms, such as abdominal pain, bloating, and bowel irregularities. Leading to careful planning on lifestyle, foods, medicines and outings. 

Immune System Dysfunction: Frequent infections, flu-like symptoms, and prolonged recovery periods from minor illnesses. Also limiting life, relationships, work life and everyday living. Making plans becomes a thing of the past, as one day is not the same as the next, and plans on a good day are often pushed aside on the bad ones. 

Lack of sex drive can impede relationships and one’s own needs, causing relational conflict, especially with a non supportive or understanding partner and this can place untold stress on partnerships. 

Causes and Current Understanding: The exact cause of ME/CFS remains unknown, but multiple factors are believed to contribute to its development. Current research suggests the involvement of the following:

Viral Infections: Some individuals develop ME/CFS following a viral illness, leading to speculation that viral infections may trigger the condition. Immune Dysregulation: Dysfunction in the immune system, affecting the body's response to infections and inflammatory processes.Genetic Predisposition: Certain genetic factors may predispose individuals to develop ME/CFS, but more research is needed to understand this relationship fully. Neurological Abnormalities: Studies suggest abnormalities in the central nervous system, impacting various functions such as pain processing, sleep regulation, and cognitive impairment.

Despite growing scientific evidence, ME/CFS faces challenges in recognition and acceptance as a legitimate medical condition. However now with Long Covid ( which is ME, just wrapped up in a more acceptable name) there is much more money being outed into research and also it is becoming more widely acceptable. 

Recognition Challenges: ME/CFS has historically faced skepticism and misunderstanding, leading to significant recognition challenges. The factors contributing to the lack of recognition include:in the 80’s it was referred to as ‘Yuppy flu’ and dismissed as being all in the head. Leading to deep depression in suffered as they not only battled the illness, but the understanding to, as often labelled as lazy, idle, lack of drive and motivation. The medical world also blame other factors and patients have battled not only the illness but the sympathy of the medical field for to many years, often being dismissed by the medical understanding they need, this has slowly been changing and with the arrival of Long Covid it feels now that the medical world is being forced to look into it with more depth. 

Surprisingly ME is often found in over achievers, those who have had to hold it all together, not only academically, but also financially, relations and family, it’s as if they have used up all their energy to fast or quickly. 

Diagnostic Complexity: ME/CFS lacks a  definitive diagnostic test, causing difficulties in diagnosing the condition accurately and leading to potential misdiagnosis or dismissal by healthcare providers. Stigma and Misconceptions: Perceptions of ME/CFS as a psychosomatic or imagined illness have contributed to stigmatisation and inadequate support for individuals with the condition, sadly this is still widely the case and impacts the sufferer deeply with their mental health and wellbeing. 

Limited Medical Education: Lack of adequate training and knowledge among healthcare professionals hinders appropriate diagnosis and management of ME/CFS. Inconsistent Definitions and Criteria across Countries: Varying diagnostic criteria and classifications among healthcare systems worldwide contribute to diagnostic confusion and inconsistent treatment approaches.

Exacerbating Factors: Several factors can worsen the symptoms and overall condition of individuals with ME/CFS. Recognising these exacerbating factors is essential for managing the illness effectively: Overexertion and Physical Stress: Engaging in physical or mental activities that exceed an individual's energy reserves can lead to increased fatigue and a prolonged symptom flare-up. Infections: Viral, bacterial, or other infections can trigger symptom exacerbations and intensify the overall illness. Environmental Triggers: Exposure to certain chemicals, allergens, loud noises, or bright lights can worsen symptoms and cause sensory overload. Emotional and Mental Stress: Psychological stress, such as anxiety, depression, or emotional distress, can contribute to symptom flare-ups and overall well-being.

Management Strategies: While ME/CFS currently lacks a cure, there are various management strategies that can help individuals cope with the condition and improve their quality of life: Pacing and Rest: Learning to pace oneself by balancing activities with periods of rest is crucial in managing energy levels and preventing symptom exacerbation. Cognitive Behavioural Therapy (CBT): CBT can help individuals develop coping strategies, address negative thought patterns, and manage the psychological impact of living with a chronic illness.

Holistic Therapeutics for the mind such as Clinical Hypnotherapy, and tailored counselling, somatics to help release the traumas and emotional aspects such as EFT and Breathwork are a positive companion. Gentle energetics such as Bach Flower Remedies or herbal preparations are found to be supporting, along with Reiki practices to help energise the body and its systems. 

Graded Exercise Therapy (GET): Under professional guidance, carefully prescribed exercise programs can aid in improving physical abilities and overall well-being without exacerbating symptoms. This is dependent on individuals and upon each case as a separate as for some exercise worsens the condition  

Symptom-specific medications, such as pain relievers or sleep aids, may be prescribed to alleviate specific symptoms and improve overall functioning. Dietary and Lifestyle Adjustments: Nutritional support, dietary changes, and lifestyle adjustments can help manage digestion issues, sleep disturbances, and overall well-being.

Limitations and Impact on Life: Occupational Limitations: ME/CFS can significantly impact education and employment, often leading to reduced work hours, career changes, or complete inability to work.

Social and Relationship Challenges: Individuals may experience isolation, as the limitations imposed by ME/CFS can disrupt social activities and strain relationships due to difficulties attending events, maintaining commitments, and participating in previously enjoyed activities.

Financial Implications: Reduced or halted work capacity can result in financial strain, as individuals may face challenges in meeting medical expenses and maintaining a suitable standard of living. Emotional and Psychological Impact: Living with a chronic illness can result in emotional distress, depression, anxiety, and a diminished sense of self-worth. Mental health support is essential for managing the emotional impact of ME/CFS.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) significantly impacts everyday life and imposes numerous physical, cognitive, and emotional challenges on individuals. Recognition challenges, limited understanding, and stigma associated with the condition further hinder appropriate diagnosis, treatment, and support. However, with continued research, raising awareness, and improved medical education, there are management strategies available to mitigate symptoms and enhance individuals' quality of life. Building a supportive environment and validating the experiences of those with ME/CFS are crucial steps toward improving recognition and support for this debilitating condition. 

Alternative therapy such as hypnosis, breathwork, EFT, Aromatherapy, reflexology, reiki, and mindfulness can hold a positive aspect to navigating this debilitating and life limiting illness and gift back a positive outlook within a challenging and daily navigation of living with a chronic condition such as ME / CFS. 

I have personal experience of this condition and truly understand its limiting outlook, if you want to talk about it, with a practitioner who truly understands and empathises fully with you and to explore how Holistic Therapy's may support you please reach out. You are not alone. 

If you feel you would like support, and you feel therapy may be the answer. I offer 15 minute free insight calls, for you to have the chance to discover how therapy might support you. Visit my website for more information. 

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