Fatigue following viruses is not a new phenomena but in reality fatigue is only part of the presentation for those with chronic post viral conditions.
A number of children with Long Covid are being diagnosed with ME/CFS - otherwise known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and some are wondering how much the two conditions overlap.
Read on to find out more about the symptoms, causes, diagnosis and treatments.
This blog is a living resource and will be updated and added to as needed.
Overview
Myalgic Encephalomyelitis (ME) is a serious, complex, fluctuating, chronic neurological condition. It is also referred to as Chronic Fatigue Syndrome (CFS) or ME/CFS - although there is debate over the appropriateness of these terms. The term CFS is disliked by many patients and doctors working in the area, as some feel that it perpetuates misunderstanding or trivialising of the condition (by focusing only on the symptom of fatigue).
The WHO recognized ME as a neurological illness in 1969. However, in some countries, ME is not recognised as a physical illness, with some professionals still believing the condition is psychological in nature, despite growing evidence to the contrary. Although there has been a chronic problem with underfunding of research into ME across the world, there is now a considerable amount of research data which confirms ME as a physiological condition.
What we know
The cause of ME is not currently known, however research into the mechanisms causing symptoms is ongoing.
Infection is the most common reported trigger for ME, infections both bacterial and viral. Glandular fever (also known as EBV, Epstein-Barr Virus and Mono) is the most widely report viral trigger. Other viruses reported by patient as common triggers include seasonal flu and VZV (chicken pox/shingles virus). Previous SARS outbreaks and MERS outbreaks have resulted in patients developing ME.
Other documented triggers include injury and surgery. Some people report a series of infections or events which appeared to initiate their illness.
It can affect people of any age, including very young children. However some research suggests that people in two specific age brackets - teens and people in their 30s - have a higher incidence rate.
It is diagnosed more in women than men (approximate ratio of 4:1) (it is noted in research however that women appear to be more likely to seek medical support, so this ratio may be more reflective of chances of diagnosis rather than prevalence of disease and the disparity in gender may not be as extreme in reality).
ME is the biggest cause of long term sickness absence from school in the UK
ME varies in severity and can be classified as;
Mild (may be able to attend school/work full time/part time, while balancing with adequate rest, approximately 50% reduction in overall activity levels),
Moderate (usually unable to work/attend school, often housebound for weeks at a time, limited ability to do daily activities)
Severe (restricted to their home, often may be mostly or entirely bedbound, may require use of mobility aids)
Very Severe (entirely bedbound, some patients at this level of severity may be tube fed, and/or non verbal)
This should be seen as an approximate classification, with some patients falling between two categories.
The recovery rate for children is not clear but anecdotal evidence indicates that with appropriate early diagnosis and management, recovery is possible. Some people with ME report a relapsing remission pattern to their illness over a number of years, rather than a straight forward recovery.
Symptoms
Profound fatigue & Post Exertional Malaise (PEM) /Post Exertional Symptom Exacerbation (PESE) - which is a worsening of symptoms after activity.
Sleep issues
Muscle weakness, muscle and joint pain
Flu-like symptoms such as sore throat and headaches
Brain fog (eg. word finding difficulties, clarity of thought)
Memory problems
Issues with temperature regulation
Dizziness, PoTS, orthostatic intolerance
Digestive issues (IBS type symptoms)
Sensory sensitivities (e.g. to light and sound)
Allergies
Mood changes (anxiety and low mood)
Worsening of premenstrual issues, and other female specific comorbid conditions such as endometriosis
As you can see many of the symptoms overlap with symptoms of Long Covid, however the relationship between the two conditions needs further research before conclusions can be reached. There will be benefits in researchers looking at both conditions, working together.
Diagnosis
Many people with ME struggle to have their symptoms taken seriously and it can end up taking quite a long time to receive a diagnosis. Long delays may lead patients to a poorer prognosis if their illness and energy have not been managed effectively.
This issue of delay is not helped by the absence of specific diagnostic tests.
The key symptom required for diagnosis of ME is PEM/PESE (Post Exertional Symptom Exacerbation) which can be identified via self-report on a screening questionnaire.
CPET is an objective 2 day cardiopulmonary exercise test where performance in two exercise tests is completed 24 hours apart. The goal is to compare the body’s response over these two tests. Research demonstrates that ME patients have decreased function following physical exertion. CPET may play a role in supporting ME patients to obtain social welfare disability payments (which has been a considerable problem for some patients) because they objectively demonstrate incapacitation. The comparison in how the body responds or functions has been shown in research to be notably different in people with ME, although this test is not routinely offered.
Where a patient does not have access to such testing, diagnosis can be made by an ME literate doctor using the ICC (International Consensus Criteria). When symptoms are tracked and there is a clear indication of PESE (considered the cardinal symptom of ME) and there is the presence of enough other key symptoms from the criteria, and when other disease has been ruled out, a diagnosis of ME should be considered.
Treatment
There are currently no specific medical or rehabilitative treatments recommended for ME.
GET & CBT
The 2021 review of the NICE guidelines removed the recommendation for treatment using Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT). Many patients with ME have raised issues for quite some time that GET had a negative impact on their illness severity.
Whilst CBT is unlikely to be harmful, patients have complained that having CBT as a 'treatment' strongly implies that ME is not a physical condition. In the past, CBT was used by some practitioners to encourage ME patients to try to avoid unhelpful thoughts such as 'I do not have the energy for this walk'. Since ME patients, in order to manage their illness need to assess their energy limits, if a patient were encouraged to ignore thoughts like this and to 'push through' this could be very possibly be harmful and cause deterioration in their condition.
CBT can be helpful to ME patients in much the same way as any person suffering from a life changing physical illness; it can act as a support if the person's mental health has suffered and help assist a person with issues such as anxiety, low self esteem etc.
What can doctors do for ME patients?
Medical professionals aim to improve quality of life and functioning by managing the symptoms of the condition and its commonly co-occurring conditions. For example, where sleep is poor, medication/supplements/lifestyle changes might be prescribed. Muscle/joint pain may be managed with analgesics. New allergies are identified and managed.
Many patients with ME have other conditions which are very possibly related to the mechanisms at play within the condition. For example, women with ME appear to have a higher incidence of endometriosis than women without. It would be important that any other conditions be diagnosed and treated promptly.
It is also important to ensure that other disease is ruled out with appropriate testing where indicated. As ME can cause a large variety of symptoms including chronic pain and gastrological issues, it is important that the treating doctor ensures that new symptoms are not always assumed to be down to the ME without considering all possibilities. There is a risk of a new second condition/disease going undiagnosed and untreated. Therefore ME patients with evolving symptoms should be reviewed regularly.
Some alternative therapies such as acupuncture may benefit some individuals in terms of their symptom management but more research is needed to demonstrate this objectively.
Energy Management
Pacing and other energy management techniques (e.g. spoon theory, energy envelope, heart rate monitoring) are often used as a management method. These strategies generally become a way of life for people with ME and should not be considered curative, although pacing can support improvements in the ability to function for some people. ME patients who use pacing effectively tend to report fewer PEM episodes commonly known as 'crashes' or episodes of longer more severe relapse. Anecdotal reports suggests that patients who consistently avoid PESE may be more likely to improve over time, and see a stabilising of their symptoms (for example an improvement in muscle pain frequency and severity).
An example of an energy management approach:
Spoon Theory is a method of approaching energy pacing whereby a person determines how many spoons (which signify energy) they have available for use on a given day. This may vary day to day depending on a number of factors including things like quality of sleep the night before, whether a patient is in a 'crash' etc.
Each activity will use one or more spoons depending on how much energy it requires. For example a patient may determine that they have eight spoons available on a given day. For a severely ill patient, a shower may use up five spoons. For a more moderate ME patient, a shower may require only one spoon. The idea is to plan out your day and the use of your energy and not surpass your spoons allowance.
By this method, the patient is more likely to have stayed within their energy allowance for the day, which will avoid triggering PESE. People who use spoon theory in their day to day lives sometimes refer to themselves as 'spoonies'. See also Long Covid Kids Pacing Penguins.
A note on Long Covid and ME communities
It is important to acknowledge that there have been some tensions between some members of the ME and the Long Covid communities. People with ME have voiced that they have felt invisible for a long time and some have expressed frustration that Long Covid is gaining attention from media and the medical community when ME has been so grossly overlooked for so long.
That said it is very likely that research on either condition may benefit the other and it would be to the benefit of ALL people living with either condition to work together to advocate for better research of and the development of treatment for all post viral illnesses.
Some Long Covid patients report having received beneficial advice, support and solidarity from members of the ME community.
Where can I learn more:
LCK Lead Representative for Rep. of Ireland
Date 30/3/22
About
In 2021 Long Covid Kids became the first UK-based, international registered charity advocating for families, children and young people living with Long Covid.
The charity focuses on recognition, support and recovery and has already received recognition from the NHS and the Centre for Disease Control in the USA, as well as being a recommended resource in the NICE Long Covid guidelines.
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Purpose
We believe all children should be able to thrive and look forward to a positive future. That is why we represent and support children and young people living with Long Covid and related illnesses and the parents and caregivers that look after them.
Our Vision
To achieve recognition, support and recovery for Long Covid and related illnesses in children and young people