ME Association comment
A recent and comprehensive review of cognitive dysfunction in Long Covid was published by the British Medical Journal. It's worth reading at least some of the highlighted sections if not the whole article – if you are able. However, as Dr Vikki McKeever rightly pointed out (below), the authors didn't consider the notable overlap with ME/CFS.
This seems to be quite a common practice and one we have raised concerns about before, but we are seeing signs that Long Covid clinicians and researchers are now looking at the similarities and differences with ME/CFS. We hope that there will be a marked improvement in the willingness of those working in the field of Long Covid to learn from ME/CFS research, to share experiences with more ME/CFS clinicians, and listen to ‘both' patient communities. Only if we work together will we solve the puzzle of why some people are unable to recover after an infection. And, with an increasing number of people being diagnosed with ME/CFS as a result of Covid-19, the distinctions between ME/CFS and Long Covid are becoming ever less clear…
British Medical Journal: Practice Pointer
Cognitive dysfunction after covid-19
Authors: Emma Ladds, GP partner and Wellcome Trust DPhil, student, Julie L Darbyshire, research manager and senior scientific officer, Nawar Diar Bakerly, professor in respiratory medicine, Zacc Falope, consultant in rehabilitation medicine, Ian Tucker-Bell, patient advisory group member.
Published 01 February 2024
Extracts
What you need to know
– Cognitive problems are common after acute SARS-CoV-2 infection and can be disabling and frightening.
– Symptoms tend to improve, but this may take up to a year. Those with chronically persistent symptoms lasting more than 12 months have a lower chance of improving.
– Symptoms usually fluctuate.
– Assessment should be directed to documenting the nature and trajectory of the impairment and excluding alternative diagnoses.
– Self-management techniques may help patients manage their condition.
What is causing my cognitive problems?
There is no straightforward answer to this question, which is understandably frustrating for patients. Different areas of the brain are involved in different cognitive processes. Animal and neuroimaging studies in humans with persistent symptoms have shown alterations in the anatomy or functioning of some of these regions correlating with specific impairments, providing a pathological link with symptoms. However, there are many mechanistic hypotheses.
Neuropathological, biomarker, and neuroimaging studies have suggested ongoing viral infection in the brain, viral activation of immune or inflammatory pathways resulting in neuronal destruction or impairment, and dysregulated autonomic function as seen in other conditions. Alternative proposals include microvascular damage caused by endothelial dysfunction and hypoxia related inflammation, and parallels have also been drawn with cognitive difficulties experienced during chemotherapy treatment or in other chronic inflammatory or autoimmune disorders.
Seek to exclude non-specific cognitive blunting from other underlying causes. Alongside specific metabolic, toxic, or (patho)physiological causes (Box 2), poor sleep, diet, smoking, alcohol, and recreational drug use, reduced activity levels, and low exposure to natural light may also contribute. These should therefore be established in the history and improved or mitigated if and where possible.
How do people manage their cognitive problems?
Our engagement with patients in the LOCOMOTION patient advisory group and qualitative studies have highlighted practical strategies to cope with impairments. Many patients have found communicating the fluctuating nature and variable impact of their (largely invisible) symptoms particularly challenging.
One technique is to explain energy levels in terms of battery life, bank balance, or the number of spoons remaining in a drawer. All three analogies describe energy as finite units used up by activities and therefore leaving the person unable to do all they want or need to do. Some activities can be rejuvenating and replenish the store. Planning days with a mixture of differently draining activities can help minimise fatigue and frustration and maximise performance. Similarly, activity and symptom trackers can help identify triggers for mental fatigue that can be avoided or help people prioritise tasks and activities.
Other reported strategies focus on reducing an individual’s general cognitive load (a combination of simultaneous conscious and unconscious cognitive tasks). These “task loads” interact in complex ways but because working memory capacity is limited, even distractions that a person is not consciously aware of can measurably degrade performance. Box 3 outlines different approaches individuals have raised in qualitative interview and focus group studies to minimise their cognitive load. Lessening overall cognitive load can improve functioning in specific domains while also lessening the distress of “failing” at simple cognitive tasks.
BMJ Rapid Response:
The overlapping conditions of Long Covid and ME/CFS
Dr Vikki McKeever, GP with a specialist interest in ME/CFS, Leeds and West Yorkshire ME/CFS Service.
22 February 2024
Dear Editor,
It is refreshing to see work being done to explore the complexities of post-viral cognitive symptoms and provide guidance on management strategies. As an ME/CFS specialist, I would like to point out that there has been no mention of ME/CFS in the article other than on the list of other potential contributors to cognitive impairment (which is potentially confusing). In addition to the cognitive dysfunction, the article covers fatigue and post-exertional malaise (PEM) symptom patterns. Given that debilitating fatigue, PEM and cognitive issues are the core symptoms of ME/CFS it would be prudent to describe the clear overlaps between Long Covid and ME/CFS.
ME/CFS is a defined illness and specialist ME/CFS services existed long before the SARS-CoV2 virus evolved, and the condition has been a much overlooked, misunderstood and underfunded area of medicine. The ME/CFS community have felt hopeful that the new clinical interest and research funding that has come out of the devastating pandemic would also serve to improve the care and treatment options for people with ME/CFS.
In some parts of the UK, it was the existing ME/CFS services that stepped up and provided a Long Covid service during the pandemc. In some other regions the Long Covid services have expanded to provide an ME/CFS service where none existed before. It is clear there is a lot of shared pathophysiology between the 2 conditions (ref 1) and the 2 diagnostic labels are not mutually exclusive. Staff who have experience of supporting people with these complex multisystem conditions have acquired advanced skills that could be utilised for both patient groups.
Very few ME/CFS services can conduct clinical research due to insufficient medical input, lack of research experience and difficulty in accessing investigations or prescribing (Ref 2). Some Long Covid services have been able to secure much better financial support which has helped them make valuable progress in understanding the pathophysiology of Long Covid, but there is still a lot of work to do in this area of post-viral syndromes.
The current waning of interest in Long Covid and potential threat of reduction in funding for services appears to be driven by a short-sighted view that Long Covid might be a short-term problem but as this article shows there are significant numbers of people still significantly impacted by life changing symptoms.
It is estimated there are currently at least 750,000 individuals in the UK with persistent symptoms for more than 2 years (and hence become a long-term condition) (ref 3). Many ME/CFS services are also reporting steady increases in referral numbers and also increased clinical complexity which demonstrates the need for service expansion (ref 2).
The British Association of Clinicians in ME/CFS (BACME) has welcomed involvement from clinicians working in Long Covid services. The development of a Clinical Post COVID Society hosted by the British Society of Physical & Rehabilitation Medicine (ref 4) has the potential to be a positive step forward and we look forward to seeing more collaborative service development that could expand and improve the care for people with ME/CFS, Long Covid and other associated conditions.
Our power will be much greater if we work together.
1. Komaroff AL, Lipkin WI. ME/CFS and Long COVID share similar symptoms and biological abnormalities: road map to the literature. Frontiers in Medicine. 2023 Jun 2;10:1187163.
2. BACME National Services Survey October 2023 Accessed 20th February 2024.
3. ONS. Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 2 February 2023: Office for National Statistics; 2023
4. Sivan M, Heightman M. A new professional society for post-COVID condition and other post-viral conditions. Adv Rehabil Sci Pract. 2024 Feb 9;13:27536351241231351.
Competing interests: No competing interests