In support of ME Awareness week (May 11th - 17th) I would like to bring awareness of the debilitating condition. Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a condition that affects multiple systems throughout the body. The prevalence of chronic fatigue syndrome has been estimated to be from 0.007% to 2.8% in the general adult population (Afari 2003) . Chronic fatigue syndrome is characterised by severe, disabling fatigue, and other symptoms such as musculoskeletal pain, sleep disturbance, impaired concentration and headaches.
ME is a challenge to physicians, the cause of the syndrome remains poorly understood, Rollnik (2017) highlights ‘… there are no convincing models that might explain etiology and pathogenesis of CFS as an independent, unique disease. No consistent diagnostic criteria are available. According to Klimas (2019) ‘…Inflammation, immune system activation, autonomic dysfunction, impaired functioning in the hypothalamic-pituitary-adrenal axis, and neuroendocrine dysregulation have all been suggested as root causes of fatigue…’ Certain infectious illnesses, such as Epstein-Barr virus and viral meningitis have also highlighted a correlation with the prevalence of ME.
There have been concerns that incidences of post viral fatigue syndromes such as ME could possibly be on the rise after a Covid19 infection, similar to how it had been with those tested positive for Epstein-Barr and viral meningitis. In Toronto, a team of researchers were asked to study 22 of those who had been infected which Covid19 who had ongoing health problems that prevented them from returning to work. The researchers found that the participants generally had disturbed sleep, daytime fatigue, pain and weakness in muscles all over their body, and depression. “These symptoms were very reminiscent of CFS/ME,” says Moldofsky. Wilson (2020) Researchers from the University of Leicester are studying a link between Covid19 patients and the chances of development into ME. According to Owen (2020) Dr Clague-Baker highlights the importance of careful questioning to identify potential new ME patients as it may be several months or even years before the symptoms are accurately identified. A reality only too familiar to suffers of ME.
Other common symptoms
Disturbed thermoregulation (temperature control), sensory disturbances including paraesthesia (abnormal skin sensations), photophobia (sensitivity to light) and hyperacusis (sensitivity to noise), headaches, shakiness, balance problems, nausea, gastrointestinal problems, alcohol intolerance and chemical sensitivities, recurrent sore throats, shortness of breath, vision problems. (ME Association 2020)
As a result of such debilitating physical symptoms, the patient may start to experience mental health issues such as anxiety and depression. In my experience working with ME, patients can become depressed from the restrictions that the condition may place on them such as a reduced ability to work or socialise. Invisible illnesses can be really difficult to explain to friends, family and employers, patients can be left feeling misunderstood by the medical system with limited treatment options available. They may feel out of control of their chronic illness and be unable to make day to day plans unable to predict how they will be from day to day, or how long each relapse may last. Anxiety can also be a complication for those suffering with sleep issues, when is someone suffering from insomnia they may become increasingly anxious around bed times which just fuels the cycle even more. With ME, a feeling of being ‘tired but wired’ is a common complaint.
What is it like living with ME?
The word ‘adapt’ comes to mind when thinking of those who I have worked with who suffer with ME and how they have adapted over the years to limitations placed on them due to the illness. Adapting to a life of feeling unwell, weeks of headaches, adapting journeys for those that suffer with hyperacusis avoiding potential loud noises, adapting holidays and busy travelling times, adapting sleeping arrangements, gut health issues can also create a need to adapt to the situation, inability to work or socialise. Feeling left behind.
Symptoms ebb and flow, peak and trough, always evolving. A few patients who have been living with ME for many years have been kind enough to share their personal first hand experience of what it is like living with ME. Through these individuals sharing their experiences, I have gained an insight in to what life is like to live with this debilitating condition.
“ I was diagnosed approximately 22 years ago after many visits to my GP. Blood tests showing with out my knowledge I had had Epstein bar virus at some point prior to developing ME. The variety of symptoms have not only varied to their severity over the years but still change not only on a daily basis but on some days can vary on an hourly basis. The hardest thing for me was having to give up my career and life passion of nursing about 8 years ago, this being my lowest point ever, feeling as if I had lost my identity. However over the years I have adapted to my new normal, trying to accept little by little that I still have other things I can be good at such as being a wife and mum. Taking joy in the little things that I can do, starting new hobbies such as crafting on the days I have the energy. Resting for me is the most difficult thing in the world to do and that is my down fall so to any one newly diagnosed I would advise that listening to your body rather than your mind is probably the most important thing to do.If I had done this in the early days following my diagnosis I think I would have had a different outcome, instead of pursuing my dream of becoming a ward sister, which I did achieve but at a great cost to my health. Over the years I was always secretly searching for a cure, be it herbal medicine or something else but I now know that you can’t seek a cure but look at ways of improving symptoms. For me acupuncture with the right person helps. Since seeing yourself my sleep as improved enormously ,insomnia being just one of the symptoms I have battled with since diagnosis. I am so grateful for that.
Overall my advice to anyone newly diagnosed is be patient, be kind to yourself and learn to accept your new normal, but never give up and don’t allow the diagnosis to define you as a person. If you give in to the illness it will engulf you and all those around you.”
“Because of its chronic & misunderstood nature, many sufferers become prone to anxiety and depression, feeling abandoned by the world. In the UK especially, this has often led it to be seen as a psychological condition, and sufferers often hear things like “Oh, you’re just lazy!” or “You just need to think more positively!” Comments such as these can make us feel more misunderstood than ever, and denigrate what we’re going through. But perhaps the biggest misconception we face is is this: “Oh, is that the thing that makes you tired all the time?” It’s often asked innocently, and sufferers can be tempted to agree, because to explain the truth of the matter would take more energy than we have! Yes, we’re always having to rest and sleep more than most people. Yes, we often barely have the energy to get out of bed… but “tiredness” hardly even scratches the surface of how we feel.
Imagine having the flu (but not the runny noses and sneezes), on top of the worst hangover ever, on the day after running a marathon. Now imagine feeling that way all the time. Even the slightest exertion can bring about deep, bone-aching fatigue, fatigue so enervating that you can barely function, and that is rarely helped by sleep. This is tiredness, ME-style.
And it doesn’t stop there. Add in constant and severe aches & pains in the the muscles and joints, cognitive impairment, dizziness and nausea, super-sensitivity to sound, light, temperature, chemicals & medication, and digestive troubles such as IBS, and you’ll begin to understand why this condition affects every area of the sufferer’s life. We’re basically reduced to existing, unable to work or socialise in any meaningful way, and ever dependant on others for even the basics of living. Because of the lack of support from Western medicine, sufferers often find themselves approaching alternative therapies, such as yoga and acupuncture, in desperation. The irony is that these alternative therapies usually help more than anything that might be offered by GPs or hospital specialists. The holistic, whole-body” approach to treatment that Eastern methods pursue is far more suited to treating such a wide-ranging condition as ME, and I can honestly say that acupuncture is the only thing that has consistently helped keep a rein on my symptoms, giving me extra energy and reducing the aches and pains that plague my life. It’s not a cure, but it helps a great deal in making day to day life more manageable, which is why I always heartily recommend it to fellow sufferers."
Does acupuncture have a place in the treatment of ME?
In my experience, Chinese Medicine can help to improve levels of fatigue, muscular pain, headaches, low mood, anxiety, improve sleep and therefore may improve quality of life for sufferers of ME. Methods such as acupuncture, moxibustion and gua sha have a regulatory effect on the immune system and can be part of treatment plan. Commitment of regular sessions must be a consideration for those that suffer with ME, starting weekly (or twice weekly) graduating slowly to 3-4 weekly sessions (with improvement) is an approach that I find most suits patients dependant on severity of symptoms. The focus of treatment is to improve quality of life from reducing stress (stress is an immune system suppresser and not helpful in the instance of ME), supporting the immune system and work with the individuals presentation of symptoms which may vary session by session.
The British Acupuncture council (2020) illustrates that Acupuncture may help to relieve symptoms of chronic fatigue syndrome stimulating nerves located in muscles and other tissues, which leads to release of endorphins and other neurohumoral factors, and changes the processing of pain in the brain and spinal cord. Acupuncture stimulates opiodergic neurons to increase the concentrations of beta-endorphin, reduces inflammation, by promoting release of vascular and immunomodulatory factors, improves muscle stiffness and joint mobility by increasing local microcirculation and reduces insomnia through increasing nocturnal endogenous melatonin secretion.
According to Wang (2014) Traditional Chinese Medicine (TCM) appears to be effective in alleviating the fatigue symptom for people with CFS in a study of 23 Randomised control trails (RCT) involving 1776 participants. However, Wang also concluded there could be a risk of bias of the included studies and larger, well-designed studies are needed to confirm the potential benefit in the future.
The ME association
A Small charity investing in the research of ME. Almost everyone who works for the ME Association has personal experience of M.E., is currently living with the condition or has a loved one who has been affected. In support of ME awareness day they are holding a virtual tea party online.
They provide helpline 365 days per year to support those suffering with ME and also offer a monthly magazine subscription.
ME Research UK
A UK based Charity, keep up to date with the latest research, fundraise, donate and volunteer when opportunities come available to take part in studies
The Optimum Health Clinic
The uniqueness of the Optimum Health clinic is that most of the staff are recovered ME/ Fibromyalgia sufferers and all staff have their own personal experience. The charity offers free resources downloads and documentaries. There are also options of 90 day programmes which currently are discounted whilst they undertake research to validate the effectiveness of their methods.
The British Acupuncture Council
To locate your local licensed Traditional Acupuncturist visit www.acupuncture.org.uk. British Acupuncture Council (BAcC) Members are licensed acupuncturists with minimum of three years full time training in traditional acupuncture. BAcC members meet with standards set out by The World Health Organisation (The WHO) and are Professional Standards Authority (PSA) Approved.
A huge thank you to those who shared their personal experiences for the purpose of this post.
Acupuncture.org.uk. 2020. Chronic Fatigue Syndrome. [online] Available at: <https://www.acupuncture.org.uk/a-to-z-of-conditions/a-to-z-of-conditions/1129-chronic-fatigue-syndrome.html> [Accessed 10 May 2020].
Afari N, Buchwald D. Chronic fatigue syndrome: a review. Am J Psychiatry 2003;160:221-36.
Cairns R, Hotopf M. A systematic review describing the prognosis of chronic fatigue syndrome. Occup Med (Oxford) 2005;55:20-31.
Klimas NG, Broderick G, Fletcher MA. Biomarkers for chronic fatigue. Brain Behav Immun. 2012;26(8):1202‐1210. doi:10.1016/j.bbi.2012.06.006
Meassociation.org.uk. 2020. [online] Available at: <https://www.meassociation.org.uk/wp-content/uploads/MEA-M.E.-Research-Summary.pdf> [Accessed 11 May 2020].
Owen, D., 2020. Patients May Be More At Risk Of ME After Catching Coronavirus. [online] leicestermercury. Available at: <https://www.leicestermercury.co.uk/news/leicester-news/patients-higher-risk-developing-after-4109963> [Accessed 10 May 2020].
Reid S et al. Chronic fatigue syndrome. BMJ Clinical Evidence. Search date September 2007
Rollnik JD. Das chronische Müdigkeitssyndrom – ein kritischer Diskurs [Chronic Fatigue Syndrome: A Critical Review]. Fortschr Neurol Psychiatr. 2017;85(2):79‐85. doi:10.1055/s-0042-121259
Wang YY, Li XX, Liu JP, Luo H, Ma LX, Alraek T. Traditional Chinese medicine for chronic fatigue syndrome: a systematic review of randomized clinical trials. Complement Ther Med. 2014;22(4):826‐833. doi:10.1016/j.ctim.2014.06.004
Wilson, C., 2020. Could The Coronavirus Trigger Post-Viral Fatigue Syndromes?. [online] New Scientist. Available at: <https://www.newscientist.com/article/mg24632783-400-could-the-coronavirus-trigger-post-viral-fatigue-syndromes/> [Accessed 9 May 2020].