ME - coming out of the wilderness
By Moira Dillon*
I was a fit, healthy professional enjoying my career, motherhood and active hobbies until the age of 35 when I gradually began to struggle at work - continually fighting various chest infections and suffering a lack of energy.
I became unbelievably exhausted with the most intense flu-like malaise made worse by minor exertion - the kind of exhaustion you'd expect to feel after running a marathon.
Then, in 2007, I became extremely unwell following a period of unrelenting stress and two surgeries. I developed a variety of symptoms which made life very difficult: constant musculoskeletal pains; disturbed and unrefreshing sleep; severe constant headaches and migraines with visual disturbances, and persistent brain fog impacting on my cognitive abilities.
I had difficulty stringing a sentence together. I was overwhelmed with fatigue and felt as though I had a serious illness. The results of an echocardiogram and 24-hour Holter monitor, showing arrhythmia, ruled out anything sinister. Knowing there was something wrong but not knowing the problem was frightening.
Despite my disabling illness I continued in my teaching job for two more years, falling into a repeated pattern of collapse and recovery. At work I would feel weak and disorientated all of a sudden. My vision would go blurry and stabbing pains in my legs and arms became a daily occurrence. I'd have to crawl into bed when I got home.
Unable to do the normal things that people take for granted like watching TV and reading a book I had no choice but to leave my job. I had developed newer symptoms: dizziness; muscle twitching; tinnitus; poor coordination; restless legs; sore throats and severe sensory sensitivities.
All my symptoms would fluctuate from day to day and hour to hour. My GP encouraged me to exercise but in an effort to regain a normal life I was punished by a worsening of the very symptoms from which I was trying to escape. A relapse could last for days, weeks or longer. I was slightly relieved but very worried when my GP suggested I might have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), an illness characterised by disabling, unexplained fatigue that is not alleviated by rest.
I assumed that a possible diagnosis would lead to effective treatment but I was in for a shock. My GP offered me antidepressants when the results of routine blood tests came back normal. I was deeply frustrated by the suggestion that clear test results meant I should be treated as having depression, and I was not inclined to agree that antidepressants were the best treatment.
Several ME/CFS patients I have talked to have been given a psychological narrative about depression and anxiety, and have been treated with antidepressants that actually made their symptoms worse.
My GP referred me to a consultant psychiatrist. I begrudgingly attended not knowing what else to do and hoped she would rule out any mental health issue suggested by the GP.
Sure enough the psychiatrist, armed with my medical history, ruled out depression, etc. She prescribed Cognitive Behavioural Therapy (CBT) in the hope of treating suspected ME/CFS but unfortunately seeing a psychotherapist for CBT had no impact at all on my illness. The lack of symptom relief cleared the way for a referral to a neurologist with whom I endured numerous tests including MRI.
Other possible illnesses like MS, Lupus and Lyme disease were ruled out. It might be worth mentioning here that when I go beyond my restricted activity level I suffer a worsening of symptoms which can be severe, often referred to as a ‘crash' by patients with ME/CFS.
The neurologist became aware of my very distinctive abnormal response to exertion (PEM - Post Exertional Malaise) unique to ME/CFS and he confirmed my GP's suggestion that I had ME/CFS. I became an instant statistic, one of an estimated 12,000-plus people in Ireland with ME/CFS.
While this diagnosis brought some relief, it also brought more uncertainty in the absence of any known cure or treatment, and sadly the only advice I got was to continue doing what I already did well i.e. pacing myself and resting.
After a hellish year self-managing in a medical no-man's-land I came across a book written by a fatigue specialist. I believed there was a chance at some recovery if I could get an appointment and follow treatment plans with the writer of the book. On reflection I'd been seduced by the notion that a fatigue specialist was the right person for me because extreme fatigue was one of my main symptoms.
There was no problem getting an appointment and minutes into the first consultation I was prescribed Graded Exercise Therapy (GET). The idea that I'd get better through exercise was so enticing that I tried it and fought fatigue; this in fact did more harm than good as my symptoms just got worse. GET floored me and knocked any possible recovery back months.
Later on, while searching on the internet for a specialist who could actually help me, I stumbled upon the site of the Irish ME/CFS Association. The Association provides information on symptoms, diagnosis, management and research through information packs on ME/CFS; regular newsletters; emails and meetings with ME/CFS experts.
I also came across a very supportive ME/CFS Facebook page. Without these resources I'd have probably given up on life and let ME/CFS defeat me. I've connected with people of all ages, both male and female from all parts of the country - patients with experience of ME/CFS who truly understand what it is like who can act as counsellors to other members.
A doctor who is an ME/CFS specialist was recommended to me via the Irish ME/CFS Association. Regrettably he wasn't taking on any new patients at the time I tried to get an appointment but then I heard about another specialist, a hospital consultant who also had an interest in ME/CFS.
Getting an appointment with him through my new GP was very worthwhile because I found him a very sympathetic specialist with a positive attitude towards ME/CFS. He immediately collaborated with me to reach agreement on symptom management. His suggestion of numerous tests to be done paved the way to very vital treatments and improvements in some of my symptoms.
A full thyroid profile and blood tests provided clinical evidence of Mitochondrial Dysfunction, a problem common in ME/CFS; an OGD, biopsy and coeliac screen ruled out disease but showed some inflammation in the gut; and extensive blood test results in the low end/below normal range pointed at deficiencies and explained why I had numbness in my extremities and numerous other symptoms.
Ironically, when most people would be distressed getting positive test results, I became enthused. I was prescribed medication which helped migraines, sleep problems, restless legs, etc. At this point I have to mention that I also attended a very supportive nutritional therapist, who suggested vitamins, sleep hygiene tips and diet.
Collectively, the treatment regime prescribed by the ME/CFS specialist and the therapist brought an increase in my energy levels and I felt improvements in a plethora of symptoms for the first time in seven years. On reflection there was no doubt in my mind that the delay in both my diagnosis and lack of appropriate treatment had led to a development of new symptoms and a prolonging of my illness.
The importance of having an early diagnosis for patients with ME/CFS and the potential harm done by late diagnosis are key issues I would like to see resolved in Ireland. The UK National Institute for Health and Clinical Excellence (NICE) guideline for ME/CFS emphasises the importance of an early diagnosis. I believe that obtaining a diagnosis should lead to a process of compassion, adaptation and enablement to increase the chances for early improvement and recovery.
I've come across other guidelines that promote awareness and encourage appropriate diagnosis, tests and treatments, e.g. The International Consensus Primer provides a comprehensive picture of ME/CFS. Written by ME/CFS specialists for physicians, etc... in an effort to enhance the understanding of ME/CFS and promote consistency in diagnosis and treatment, it describes the illness as a complex acquired multi-systemic disease which affects all body systems and is characterised by debilitating chronic fatigue, cognitive problems and PEM (post-exertional malaise).
There are four categories of ME/CFS patients: mild, moderate, severe and very severe. Patients with very severe ME/CFS are bed-ridden. At my worst, my illness was severe. During a ‘crash' I'm too ill to leave my bed but generally I'm moderate these days, i.e. mostly mobile, not completely housebound with some disabling symptoms.
Sadly, the one thing that can be worse than ME/CFS is the unsupportive attitude towards it. ME/CFS sufferers like me face an ever-ending battle to access the support and understanding from medics, etc. that is accorded to others with more widely recognised illnesses.
Despite my diagnosis, I spend most of my consultations with my GP being defensive or feeling unable to communicate the full extent of my condition. The fact that I see my GP when I'm feeling well and not when I'm suffering from disabling symptoms and the fact that I may not look sick can I believe contribute to inaccurate perceptions of my condition. I can feel helpless and frustrated with the lack of empathy.
The low status of ME/CFS in general practice is reflected in experiences ME/CFS friends have recounted. Many describe themselves as experiencing limited attention and medical care. Imagine that someone could have a severely debilitating illness for which there is no cure, no relevant primary care and no sign of recovery.
I recognise that ME/CFS presents difficulties for both patients and doctors, reinforcing the need for them to work together. I believe that without a functioning GP-patient relationship communication breaks down and a therapeutic relationship needed to manage symptoms becomes non-existent.
After nearly a decade in an ME/CFS wilderness, relapsing several times after periods of physical or mental stress, I recognise my limitations. I manage my illness by leading a restricted lifestyle with gentle exercise and good nutrition, pacing myself, managing symptoms and avoiding stress.
ME/CFS has robbed me of my life and career but I'm optimistic about recovery and remain hopeful that a medical breakthrough may come soon. A more flexible approach where medical school training aims to equip practitioners with the skills needed to understand, support and manage patients and provide referral to specialist treatment could be very progressive.
We need to turn this thing on its head and make provision for curricula in training schools with the aim of educating medical students as well as guiding GPs to diagnose and manage ME/CFS appropriately.
* Moira can be contacted at: firstname.lastname@example.org
Further information on ME/CFS is available here
[Posted: Wed 26/08/2015]