In this blog, Caroline Seale, Nutritional Therapist and IINH Nutritional Therapy Programme Coordinator, shares some of her story around previously living with ME/CFS and its chronic symptoms.
One of the positives from the Pandemic was that it put the spotlight on the ME/CFS illness as Long Covid shares many similarities with other post-viral syndromes including ME/CFS.
Growing numbers of people are showing signs of ME/CFS following acute COVID-19 infection. This isn’t surprising because the illness has long been linked to other infections, including Epstein-Barr virus.
A study of patients ill 6 months after mild or moderate acute COVID-19 found that about half met criteria for ME/CFS
ME (Myalgic Encephalomyelitis), also known as CFS (Chronic Fatigue Syndrome) is a chronic, multi-system disease affecting millions of people worldwide.
New Medical Guidelines for ME/CFS in the UK but not yet Ireland!
The National Institute for Health and Care Excellence (NICE) in the UK now makes it clear that, contrary to previous advice, any programme based on fixed incremental increases in physical activity or exercise, for example Graded Exercise Therapy, should not be offered for the treatment of ME/CFS.
In Ireland, the HSE have yet to issue guidance advising GP’s and other medical practitioners that graded exercise is no longer recommended for ME/CFS patients. It’s vital that they issue this soon, as it could prevent many people from long term severe symptoms and disability.
My experience with ME/CFS
I can write freely about this illness as I suffered from the most acute symptoms at aged 34 from 2006 to 2014. It affected my digestion, immune system, brain, liver and mitochondria function. It had an impact on most of my body systems and was horrendous. During this time, I did have periods of good health but then this followed with relapses. It was the waxing and waning of the illness that was most frustrating.
Prevalence of ME/CFS in Ireland
An estimate of 13,000 people in Ireland (based on international prevalence figures) are affected with the illness but there has not been any official health department analysis of the prevalence. In reality, the figure will probably be much higher, as many people go undiagnosed. Up to 91% of patients in the United States remain undiagnosed² and I would imagine that pattern to be the same here in Ireland.
Despite its high prevalence and disabling nature, medical education programs rarely cover ME/CFS and guidance for practicing clinicians is often outdated and inappropriate. Standard tests typically return normal results, and some clinicians are wholly unaware of or question the legitimacy of ME/CFS. Consequently, people are undiagnosed or misdiagnosed with other conditions, such as depression. To obtain a diagnosis, patients frequently have had to see multiple clinicians over a number of years. Even after diagnosis, patients struggle to obtain appropriate care and have often been prescribed treatments, such as cognitive-behavioural therapy (CBT) and graded exercise therapy (GET), that could worsen their condition.
MY GP listened and was supportive
In my case I was lucky that my GP listened and was supportive. He knew my medical history and that I was generally healthy with the odd chest infection and prescription for inhalers to manage my asthma. He ran an array of standard medical tests. My B12 was suboptimal and when antinuclear antibodies were positive along with my list of symptoms, I was diagnosed within 3 months (normally its 6 months) with ME/CFS. In my opinion his advice to rest as much as possible in the early stages meant that I didn’t end up being bed bound for life with the illness.
An infectious episode near the onset of ME/CFS is recounted by 80% or more of patients3. In prospective studies, 5% to 13% of people infected with certain pathogens developed ME/CFS in later months4. Cases have occurred both sporadically and in clusters5 .
Interestingly in my case I had travelled to Australia 3 months prior to my symptoms developing. I had a chest infection and was still on a course of antibiotics when I ran a 10km charity race (not very wise in hindsight!). After that race I ticked all the boxes for ME/CFS. At the time I was also renting a room out to a lady diagnosed with ME/CFS. Did I pick up a virus in Australia or from the lady I was living with? Did I have a weak immune system to start with and then pushed it to its limits doing the 10km race whilst still on antibiotics? Who knows? All I know is that I was not the same person as I was prior to 2006. I suddenly had chronic ill health that the medical profession had no answers for.
Spectrum of severity
There is a wide spectrum of severity of the illness from mild to very severe. In my case I had moderate symptoms for about 12 months meaning I could not work and had to rely on my parent’s care during that time. I remember suffering with all the symptoms after any type of prolonged mental or physical activity. I had extreme sensitivity to light and sound which were most unusual, and remember having to ask my parents on numerous occasions to turn down the television. Driving at night was something I could no longer do, as the streetlights were blinding.
I then worked part time for a few years. When a voluntary redundancy package came up, I took the leap and changed career. I knew I no longer could work full time in a demanding marketing job in financial services. Now I’m lucky enough to be working full time in a rewarding job that’s helping people to improve their health and feel better. I still must pace my energy, I don’t have a demanding family life with children, and I manage a heightened immune system with multiple sensitivities. However, in general I’m feeling really well and I’m grateful that I didn’t end up housebound long term with severe cognitive difficulties or wheelchair dependent.
Some more information on ME/CFS and it’s symptoms
Chronic fatigue and post exertional malaise are usually the defining symptoms of this condition. Chronic Fatigue Syndrome (CFS) may be diagnosed when a person has experienced persistent fatigue for more than 6 months. Fatigue is different to tiredness; symptoms of tiredness indicate that a person is sleepy and needs to rest. A person with fatigue will experience low energy levels often without tiredness, although they may still need to rest as they have little energy. The level of fatigue experienced can vary over the course of a week, day, or even an hour.
Varying levels of fatigue add to the frustration this condition can bring to the sufferer (and suffer they do). When a person experiences periods of higher energy, they do not know if this change marks a recovery or if a relapse, a worsening of symptoms, will follow with increased activity. With this condition it can be difficult planning activities when you do not know how you will feel.
Post Exertional Malaise
A second common symptom is ‘post exertional malaise’. This is a term which describes a symptom in which exercise or exertion can bring on malaise (illness). In the case of people with ME/CFS, malaise often occurs during a period some 24-72 hours after exertion. For example, in some cases, a short walk can worsen ME/CFS symptoms two days later. This is very frustrating as one can feel well and feel motivated to take on mental or physical activity only to crash a couple of days later when days or sometimes weeks of rest is needed to build up energy reserves.
What the research says….
When sedentary but healthy people or people affected by a number of other chronic illnesses are asked to exercise to their maximal ability on 2 consecutive days, energy test results do not change significantly from one day to the next. They may not use oxygen as efficiently as healthy, physically fit people, but their energy efficiency remains the same on repeated testing.
In contrast, in ME/CFS, the ability to generate energy deteriorates on a repeated test the second day. For instance, the work rate at ventilatory threshold can drop significantly, with 1 study reporting a drop of up to 55%.
Other studies have reported high levels of lactate or increased acidosis in the blood, cerebrospinal fluid, and muscles. This could be due to increased production or decreased elimination. If aerobic metabolism is impaired, cells switch to anaerobic metabolic pathways instead, which produce more lactic acid but 18 times less ATP per glucose molecule. Repeated exercise improves lactic acid disposal in healthy people and other conditions but not in ME/CFS. These changes may explain why patients have difficulty with tasks they tolerated before illness and with sustaining activities. Damage to more than 1 energy generation system may account for why severely affected patients are often so limited. Tomas and Newton and Rutherford et al have provided comprehensive reviews of these metabolic issues.
Source: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management – ScienceDirect
Brain Fog & Other Symptoms
People with this condition also experience an array of symptoms which may include cognitive dysfunction, muscle pain, depression, anxiety, mood swings, sore throat, and/or swollen lymph nodes, headache and sensitivity to light and noise. ‘Brain Fog’ is often used by people with ME/CFS to describe a state in which their mind is not functioning properly. When someone has ‘brain fog’ their memory may be poor, they may be unable to concentrate and when they talk, they may find it hard to recall certain words.
Finally, a few thoughts on “What not to say to someone with ME/CFS”
“You look great”
ME/CFS is an invisible illness. You might meet a friend or colleague who has it and think gosh they don’t look sick, and you might compliment them on looking so well. This leads to more isolation where they don’t feel believed, and that they are suffering from chronic ill health. The person has probably rested for days to have a window of energy to engage in life but then they crash again once they return home.
“Why not get some exercise”
Graded exercise has been the standard medical advice up until NICE overruled it last year in the UK as mentioned above. This advice can often make people feel worse, in some cases bedbound for decades. I learned to pace my energy, do light exercise like hatha yoga and I was able for short walks on the good days.
“I’m tired all the time too”
People with ME/CFS want to feel heard and understood. They experience tiredness that is not normal tiredness and it is not relieved by lots of sleep. With any type of prolonged mental or physical exertion they crash, get brain fog and many other symptoms and cannot experience that ‘normal’ feeling of having enough energy to get through a day.
“You’re fine all your tests are normal”
ME/CFS sufferers are so disheartened when they hear this from their medical professionals. They want answers. It’s ok to say, “we don’t have all the answers”. Listen, empathise and be kind.
“Are you feeling depressed”
On my good days I had tones of motivation, I was full of determination and thoughts on what to try to get well. I certainly wasn’t depressed. On the days that I crashed I could have gone into depression but was lucky not to. Often people do get depressed out of pure frustration that nobody can help or understands.
What can you do or say to those who are housebound with the illness?
- Listen, empathise and be kind
- Offer to cook a meal or pay/offer for their bathroom to be cleaned (cleaning leads to crashes!)
- Offer to do their food shop
- Socialising uses up their energy, they may say “No” to social engagements and wish they were there. If they can’t meet up, drop them a nice email, text or write a letter to let them know your news and that you are thinking about them.
- Bring some humour to their lives – they are living with pain daily and are constantly searching about what they can do to get well. They need a break from these thoughts and humour can do wonders.
This blog post was kindly written by Caroline Seale, you can find more information about Caroline or and her Nutritional Therapy services on her website Discover Nutrition or on her social media channels below.
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