An extensive review on ME/CFS from a multidisciplinary team, including researchers and clinicians, has recently been published. The paper focuses on “describing ME/CFS in terms of symptoms, severity and burden, diagnostic criteria, causes and triggers; followed by an overview of the complex pathophysiology and management of the condition.”
Key points related to diagnosis, causes and triggers:
- “Despite its high prevalence, there are still no universally accepted clinical criteria to characterise ME/CFS, making early and accurate diagnosis difficult”
- “The diverse symptom presentation and patient heterogeneity indicate that ME/CFS is likely to have a multifactorial origin, with multiple physiological processes implicated in the pathogenesis.”
- “Infection is often reported to be a common trigger for the development of ME/CFS, as many patients recognise that the onset of their symptoms coincided with an infectious episode. This is recounted by more than 80% of patients and it has been estimated that two-thirds of ME/CFS cases arise following viral infection.”
- Other potential triggers mentioned include toxin exposure, drug exposure, immunisation, stress, hormonal alterations
Key points related to underlying mechanisms:
- “…it is possible that infectious organisms result in chronic symptoms by interfering with host gene expression, immunity, and metabolism.”
- “It is thought that many chronic illnesses, including ME/CFS, originate with reactivation of latent or dormant viruses that are present in the body, caused by a change in physiological conditions.”
- “Since persistent inflammation and immune cell activation is present in ME/CFS, vascular changes and endothelial damage will coexist due to the interplay between inflammation and vascular alterations.”
- “It has been hypothesised that hypercoagulation plays a significant role in ME/CFS, but there are still discrepancies between studies.”
- “ME/CFS patients often have gastrointestinal (GI) symptoms with gut inflammation, gut microbiome dysbiosis and changes in the gut microbiome”
Management
Whilst acknowledging that there are “no effective therapies and few established non-pharmacological treatments for ME/CFS”, the paper summarises “current available treatments/lifestyle modifications” addressing key symptoms including post-exertional malaise (PEM) and comorbidities such as dysautonomia, headaches and gastrointestinal issues. It is worth noting that NICE guidance states, “No drug treatment has been found to be a safe and effective cure for ME/CFS. Pharmacological interventions are however commonly used for symptomatic relief in people with ME/CFS, for example for pain and sleep, even though evidence from clinical trials in ME/CFS may be lacking.’ NICE further emphasise a ‘cautious approach to medicines prescribing’.
Future directions
Additionally, the authors make future research recommendations, and acknowledge the challenges faced by the ME/CFS community:
- “To improve their reproducibility, studies need to use uniform clinical and research criteria, standardise sample collection, and use thorough statistical analyses.”
- “Standardisation in diagnosis and disease severity is required to create robust and reproducible results. In combination, more effort needs to be made to include correctly matched controls.”
- Referring to the 25% of individuals with ME/CFS who are house or bedbound – “It is important to make research more available for this percentage of ME/CFS cases, since they are the most severely affected by the disease and these severe cases are rarely studied. It is likely that as the condition worsens, so the probability of identifiable biomarkers for the disease increases, making it crucial to study severely ill patients.”
- “It is imperative to provide increased support to the ME/CFS community, a necessity that is steadily growing alongside the establishment of research groups and charitable organisations dedicated to aiding ME/CFS patients.”
Whilst not necessarily providing added information about ME/CFS, this review pools together information from multiple sources to provide a helpful overview of this complex disease.
Read more about why ME/CFS is a biological, not a psychological, illness
