by Viola Sampson

The Fulcrum, Issue 83 May 2021

In November 2020, in the UK alone, there were already more than 186,000¹ people suffering from long-term symptoms following COVID-19, the illness caused by the virus SARS-CoV-2.  With the surge of cases that followed over the winter months, that number is expected to have risen significantly. Although COVID-19 was initially considered to be primarily a respiratory disease, it’s now clear that the virus affects multiple organ systems in the body – including the central nervous system, circulatory system and digestive system – leaving many with persistent symptoms now recognised as post-acute COVID-19 syndrome or long COVID.

A significant proportion of COVID-19 patients don’t fully recover after their initial illness of two to three weeks. Many are left with incapacitating and distressing symptoms…

Previous viral outbreaks such as MERS, Ebola, H1N1 and the Spanish flu have all been associated with long-term fatigue symptoms. However, due to a lack of research, chronic fatigue conditions are poorly understood and patients are largely unsupported by conventional medicine. Although at this early stage, it is unwise to assume parallels with other chronic fatigue conditions, long COVID encompasses a multitude of similar symptoms (of which persistent fatigue is just one). Hopefully, the current interest in long COVID research will also prove beneficial for the millions of people who have long suffered chronic fatigue conditions, such as myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS).

It was my personal experience of fifteen years of ME/CFS and recovery that led me to train as a craniosacral therapist and specialise in chronic fatigue conditions. The digestive symptoms that preceded ME/CFS, and persisted long after I had resumed an active life, then led me to my research into the community of bacteria and other microscopic life in the gut, known as the microbiome. I now have an established practice as a microbiome analyst, working with probiotics, prebiotics, food and lifestyle changes to address imbalances in my clients’ unique gut bacteria profiles. With these two modalities, I work from “both ends of the vagus nerve”, as I like to describe it.

As the news of persistent complex symptoms following COVID-19 began to appear, like many in the ME/CFS community I recognised the symptoms only too well. US patients soon coined the term post-COVID long haulers to describe themselves and large online support groups rapidly established, connecting patients all around the world. As with other post-viral syndromes and fatigue conditions, many long haulers found their doctors often did not believe them, downplayed their symptoms or dismissed them as psychologically-induced – known as medical gaslighting. However, long COVID is being taken increasingly seriously by a significant proportion of the medical community and care guidelines have recently been published by the British Medical Journal for GPs and consultants to follow². NICE guidance has also been published, although criticised by some doctors and health professionals as not providing adequate guidance for healthcare providers³.

With increasing awareness of the growing numbers of people left with long-term debilitating symptoms, there is urgent need for research into long COVID and to provide good support, medical investigations and ongoing treatment for long haulers. An individualised, integrated approach involving their primary medical care provider and other healthcare practitioners – both conventional and complementary – are likely to be most beneficial for many sufferers.

What is long COVID?

A significant proportion of COVID-19 patients don’t fully recover after their initial illness of two to three weeks. Many are left with incapacitating and distressing symptoms, including debilitating fatigue, severely altered smell or taste, recurrent fevers, breathlessness, low oxygen levels, heart conditions, and numerous other painful and troubling symptoms – many of which currently have no satisfactory medical explanation or effective treatment.

Estimates vary on what proportion of COVID-19 patients develop long COVID (as many as one in ten, or one in three 4) with many unable to return to their work or responsibilities many weeks and months after falling ill. Recent UK data suggest that as many as one in 50 are still unwell after three months(5), while a study in the Netherlands found one in three patients were still dependent on carers after three months(6). A study published in early 2021 presents the largest and longest insight into post-COVID-19 symptoms published to date, in which 1,733 hospitalised COVID-19 patients from Wuhan, China, were followed for at least six months. A striking 76 percent of all patients reported at least one continuing symptom six months later. The most common lasting problem was fatigue or muscle weakness, reported by 63 percent of all patients. Around a quarter of the patients also reported sleep difficulties and anxiety or depression(7).

Severity of COVID-19 does not predict whether someone develops long COVID – many who had mild symptoms, or were even almost asymptomatic, have since developed long COVID. With more than 117 million (8) people having had COVID-19 worldwide at time of writing, it is plausible that millions more are currently suffering from, and more will develop, long-term symptoms with an unknown prognosis. Given the long-term nature of post-viral syndromes and the current poor medical understanding of long COVID, many people are understandably concerned that their new health difficulties may be lifelong, or even life-threatening.

What causes long COVID?

There are three theories currently dominating medical thinking around long COVID: that of a persistent virus, a dysregulated immune response and autoimmunity; and there may be three subgroups of long haulers for each of these.

A minority of people with long-term COVID-19 symptoms do have an active infection, i.e. they test positive frequently in the months following the initial infection. These tend to be people taking immunosuppressant medication for other health conditions. However, most long haulers repeatedly test negative for SARS-CoV2. Many of the long COVID symptoms are likely to indicate a dysregulated immune response persisting after the viral infection has ended. However, there is currently no consensus whether long COVID (or indeed other fatigue conditions) are truly post-viral, or whether there continues to be low-level or dormant viral presence in the body. This would be like the herpes family of viruses that can remain dormant in nerve cells and produce cold sores or shingles intermittently – once again an active and contagious viral infection. There has, however, been a long, fruitless search for a viral element to ME/CFS and other fatigue conditions that leads many to conclude it is indeed post-viral, and the same may well be true for long COVID. The difference is that we know which virus we’re looking for, if not which tissues it could be dormant in.

One of the leading medical theories explaining long COVID symptoms postulates that regulation of the body’s inflammatory processes breaks down, leading to excessive inflammation in certain tissues (including blood vessels) and more widely through the body. For example, studies have shown people have signs of heart inflammation and injury months after COVID-19 (9). Researchers have confirmed that SARS-CoV-2 can infect the brain, causing neuroinflammation, but research also shows that inflammation elsewhere in the body can activate an inflammatory response in the brain, with the vagus nerve playing a key role (10).

The COVID-19 pandemic has been a tragedy, and its impact will continue to be felt around the world for many years to come.

As well as the inflammatory symptoms (such as the cytokine storm), which make acute COVID so dangerous, the neurological manifestations are becoming more widely recognised. These include anosmia (loss of smell), headaches and neuropathy (nerve pain) that are now known to be common symptoms of long COVID. Many of the symptoms are also consistent with a breakdown in the regulation of aspects of the nervous system that support rest and recovery from illness (known as autonomic nervous system dysregulation), with some patients being diagnosed with a poorly-recognised condition known as dysautonomia.

Both excessive inflammation and autonomic nervous system dysregulation are thought to underlie other chronic fatigue conditions, including ME/CFS, postural tachycardia syndrome (POTS), fibromyalgia and post viral syndrome.

Finally, for some long haulers, damage to the lungs, heart tissue, kidneys and possibly other organs, from the active infection, may play a role in their ongoing symptoms. Preliminary findings from 201 patients in a prospective, longitudinal, observational study suggest up to 66% of people with long COVID have organ damage and 25% have damage to multiple organs (11).  For those who had severe symptoms, requiring ICU care, intubation or long-term treatment, a long recovery time from those medical interventions is to be expected, and some of these people may develop long COVID symptoms in addition.

How might complementary therapists support people with long COVID?

Craniosacral therapy already plays a valuable role in supporting people living with fatigue conditions. With a skilful practitioner, it is gentle enough not to overwhelm a highly sensitive and depleted system, offering powerful symptom relief and – for a lucky few – supporting full recovery. Anecdotal reports from colleagues show CST is now offering similar support for people with long COVID.

All the learnings from those of us who have had chronic fatigue conditions, or treated those who have, will also be valuable for long haulers. They are already benefiting from the knowledge that proper rest early on improves long-term outcomes. For clients with long COVID, who experience clusters of puzzling and frightening symptoms, CST will no doubt offer the support they need to come to terms with their illness and help them access the deep parasympathetic rest that is required for healing. By supporting clients to develop embodied awareness during treatment, practitioners will be able to encourage body awareness skills that allow for proper pacing of activity and rest, and offer non-judgmental presence to accompany them on what is likely to be a very challenging therapeutic journey. We will also be able to provide an affirming mind-body perspective to counter the profoundly negative impact of medical scepticism or gaslighting.

The role of trauma histories and PTSD

The physiology of ME/CFS and other fatigue conditions is thought to be very similar to PTSD, and certain shared symptoms suggest the same may be true with long COVID. Several studies have shown people with ME/CFS commonly have trauma histories, with rates of ME/CFS being two to three-fold higher in those who experienced childhood adversity (12). It may be that traumatic experiences predispose people to post-viral fatigue, and for many, unresolved trauma is a maintaining factor. Trauma skills have been essential in my craniosacral work with ME/CFS clients, albeit with the important consideration that when very unwell, someone with ME/CFS may not have the resources to attend to that part of their therapeutic process, so it may take many months or even years to build up the physical, emotional and situational resources to do that.

People with fatigue conditions have often found CST when they have exhausted all that the NHS can offer them.

The traumatic experience of the illness itself could be an important focus of the therapeutic process and PTSD could be a factor. Early on, the pandemic was a very scary time for those who became ill with COVID-19 and for their loved ones; there was less news of people surviving the virus and even in quite severe cases of breathlessness, medical services were difficult to access or unavailable and patients were told to stay at home. Now, after many months of limited access to resourcing activities, wider social connectedness and support networks, the strict isolation of COVID-19 patients, whether at home or hospitalised, is likely to be traumatic too. We should also remember that developing a debilitating illness, and the various losses that come with that, together with a life changing diagnosis that is so poorly understood and potentially questioned or disbelieved, is also traumatic.

Vagus nerve stimulation and microbiome awareness

At its most basic, and perhaps at its most powerful, CST offers vagus nerve stimulation. The role of the vagus nerve in regulating inflammation is still poorly understood, but widely accepted. The gut microbiome also has a well-recognised role in inflammation – with some species contributing to inflammation locally in the gut and elsewhere in the body, and others reducing inflammation. Some are known to interact with our autonomic nervous system too and affect its function. From research and experience, I consider the vagus nerve and the gut microbiome as a continuous functional unit, and this is often an important focus in CST sessions.

The latest clinical research on the gut microbiome suggests that microbiome imbalances could play a role in both COVID-19 symptom severity and long COVID symptoms. For example, the gut microbiomes of COVID-19 patients are depleted in certain bacteria, including those that protect against inflammation (13). Researchers have also found that the more severe the disease, the greater the alterations in the microbiome, and these microbiome differences persisted after clearance of the virus. The need for research that investigates the role of the gut microbiome is greater than ever and my current research programme will contribute to a greater understanding and appreciation of the role that food and lifestyle interventions can play in treating long COVID.

The COVID-19 pandemic has been a tragedy, and its impact will continue to be felt around the world for many years to come. People with fatigue conditions have often found CST when they have exhausted all that the NHS can offer them. This is where our individualised, holistic approach to health and healing is so vital. With perhaps millions of long COVID sufferers joining the millions already living with chronic fatigue conditions, complementary therapies together with a deeper understanding of the medical and social factors in microbiome health, must play a hugely important role as we emerge from this pandemic.

Viola Sampson BSc RCST is a craniosacral therapist and microbiome analyst based in London. Drawing on her early career as a published research scientist, Viola is currently conducting a case study programme, to be peer-reviewed for publication, that investigates the role of the gut microbiome in long COVID symptoms and assesses the potential for prebiotics, probiotics, food and lifestyle interventions in its treatment. For webinars on the microbiome and COVID-19, please visit www.violasampson.com.  

References:

1. Office of National Statistics: https://www.ons.gov.uk/
2. Greenhalgh et al (11 August 2020). Management of post-acute covid-19 in primary care  BMJ  2020;  370 :m3026
3. Gorna et al (December 2020) Lancet. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)32705-7/fulltext
4. Gallagher, J ( 6 October 2020)  ‘Long Covid’: Why are some people not recovering? BBC.com
5. Sudre et al ( 21 October 2020) Attributes and predictors of long-COVID: analysis of COVID cases and their symptoms collected by the Covid Symptoms Study App medRxiv 2020.10.19.20214494
6. Vaes et al (7 September 2020) Care Dependency in Non-Hospitalized Patients with COVID-19, J. Clin. Med. 9(9) 2946
7. Huang et al (2021) Lancet. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)32656-8/fulltext
8. https://www.worldometers.info/coronavirus/
9. Puntmann et al (27 July 2020) Outcomes of Cardiovascular Magnetic Resonance Imaging in Patients Recently Recovered From Coronavirus Disease 2019 (COVID-19), JAMA Cardiology
10. Komoroff et al (2021) Fronteirs in Medicine https://www.frontiersin.org/articles/10.3389/fmed.2020.606824/full
11. https://www.medrxiv.org/content/10.1101/2020.10.14.20212555v1
12. Borsini (2013) https://www.cambridge.org/core/journals/psychological-medicine/article/abs/childhood-stressors-in-the-development-of-fatigue-syndromes-a-review-of-the-past-20-years-of-research/1C9F1D8C8AA524036564986EF8E9298F
13. Yeoh YK, Zuo T, Lui GC, et al (11 January 2021) Gut microbiota composition reflects disease severity and dysfunctional immune responses in patients with COVID-19 Gut https://gut.bmj.com/…/early/2021/01/04/gutjnl-2020-323020

The opinions expressed in this article are those of the author and do not necessarily reflect the viewpoints of the CSTA.