Long covid: let’s learn from the medical profession’s record with CFS/ME patients

journalist, London, UK

They are debilitating conditions that leave patients with muscle pain, headaches, brain fog, autonomic nervous system disruption and post-exertional fatigue that can make even the simplest of daily activities an uphill challenge.

And when Maddy Corper, a 56-year-old train driver from Hertfordshire, found that she was struggling with post-exertional fatigue, brain fog and sleep disturbance two months after falling ill with covid-19, the sensation of wading through her daily life felt eerily familiar.

“I knew I had long covid before I was diagnosed,” says Corper, who in her 30s recovered from seven years largely bedbound with CFS/ME, which had also developed after a viral infection and presented with similar symptoms.

It’s early days in our understanding of the post-covid syndrome, or multiple syndromes, that leave an estimated ten percent of those who contract SARS-CoV-2 with a range of symptoms many months after the acute stage of infection. Yet the overlaps in the presentation of people diagnosed with CFS/ME and patients with long covid are such that in July Anthony Fauci, the US’ director of the National Institute of Allergy and Infectious Diseases, noted that long covid is ‘highly suggestive’ of CFS/ME.
In October TIME magazine asked whether the ‘flood’ of patients presenting with post-viral symptoms in the wake of the pandemic might be the catalyst for CFS/ME, a contested and poorly understood syndrome that is in 72 percent of cases triggered by a known bacterial or viral infection, to be taken seriously by the medical profession.

However due in part to the historical stigma associated with ME, long covid patient groups are ‘wary about hitching [their] wagon’ to the CFS/ME community says Claire Hastie, founder of the patient advocacy group Long Covid Support. “There is an extra layer of symptoms that people with long covid report, such as breathlessness and organ damage, that aren’t shared with ME,” she says. “So we don’t want anything to be prejudged before the research is in.” Hastie adds that there is a stigma attached to CFS/ME that some people with long covid shy away from.

[A rocky relationship]

The relationship between CFS/ME patients and patient groups and the medical profession has been turbulent. The term ME — “myalgic” referred to the muscle symptoms; “encephalomyelitis” referred to the various neurological symptoms — was coined in the 1950s. In 1991, the influential Oxford diagnosis criteria redefined ME as Chronic Fatigue Syndrome (CFS), and there was renewed focus on the psychological bases for syndrome.

The 2007 NICE guidelines for diagnosis and management of CFS/ME reinforced a ‘damaging’ position for GPs that the syndrome was principally a psychosocial condition, claims Dr Charles Shepherd, Honorary Medical Advisor for the ME Association and a member of the committee preparing the updated 2021 National Institute for Care and Health Excellence (NICE) guidelines. The 2007 guideline recommended a care plan including cognitive behavioural therapy (CBT), graded exercise therapy (GET) and activity management programmes alongside referral to specialist CFS/ME services for those with symptoms for six months or more. There are around 50 such services in England.

However CFS/ME patients’ experience of general practice, according to surveys by academics and patient groups, has been characterised by delayed diagnosis and misdiagnosis, with many patients feeling that they are disbelieved or that GPs are trying to convince them that their often debilitating symptoms are purely psychological; and others complaining that GPs’ advice to exercise made their symptoms worse. Researchers looking into the possible psychological causes of the syndrome have been subject to threats of violence.

Corper claims that her experience presenting to her GP with post-viral fatigue had improved since the 1990s, but that she feels her treatment would have reached a ‘dead end’ were it not for her GP being able to refer her to occupational healthcare services through her private healthcare plan. “My GP was nice but didn’t seem to know much,” she says.

[Confusion for GPs]

This climate around CFS/ME has led to frustration and confusion for many GPs, says Dr Helen Salisbury, a GP in Oxford. “Medical opinions are divided,” she says, “and with conditions which have medically unexplained symptoms, GPs can anyway be too quick to label them as a manifestation of a psychological process.”

Dr Amy Small is a GP in Scotland who admits that until recently her heart ‘would sink’ when patients presented in her East Lothian practice with long histories of ME. “I felt helpless, and as if there was little I could do for them”. She adds that the anger expressed by many patients with CFS/ME towards the profession was also ‘quite draining’ as a clinician.

In April Small contracted SARS-CoV-2 and in the months afterwards developed post-exertional fatigue, postural tachycardia syndrome (PoTS) and dysautonomia, common symptoms in CFS/ME. Small then embarked on what she refers to as a ‘fast learning curve’, talking to a friend who had earlier been diagnosed with CFS/ME and seeking advice on how to manage her symptoms.
“I now realise how many people [with CFS/ME] have faced with puzzlement when they present to their GPs, and have been left to find their own way of managing,” she says.

Small’s own illness, she says, has made her ‘embarrassed’ about historically recommending graded exercise therapy (GET), per the 2007 NICE guidelines, to patients presenting with CFS/ME.

Dr Nina Muirhead, a dermatologic surgeon in Buckinghamshire who developed ME in 2015 and has consulted on a CPD Training Course for Medical Professionals about the condition, welcomes the attention and research funding that long covid has attracted, but believes there are inherent risks in encouraging GPs to see CFS/ME and long covid through the same lens.
“My fear is that patients with post-traumatic stress from covid, who would benefit from psychological interventions, will get labelled as having ME and therefore be denied treatments that might benefit them.”

[Clarity from new guidelines]

In draft version of the 2021 guidelines on treating CFS/ME, published in November, NICE recognises ME as a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms, stressing the need for an individualised approach to care.

It also advises that graded exercise therapy (GET) should no longer be offered as a treatment for CFS/ME and that CBT should only be offered as a psychological therapy to help patients to manage their symptoms. It highlights the importance of ensuring that people remain in their ‘energy envelope’ when undertaking activity of any kind.
The revision to the advice was based on published evidence and patient reports that the treatments did not benefit them, and that in some cases GET caused harm and has been welcomed by patient groups as a sign that the NHS is moving towards a biomedical understanding of post-viral chronic fatigue conditions that will give greater clarity to GPs.
Shepherd says that ‘good-quality’ research findings relating to metabolomics and mitochondrial dysfunction could lead to the development of a diagnostic biomarker for CFS/ME.
New emergency NICE guidelines on treating long covid, due to be published later this month, are expected to be modelled, in part, on the 2021 CFS/ME guidelines.

[What can we learn?]

Dr Nina Muirhead says that GPs are well-placed to be the gatekeepers in this new understanding of the two syndromes. “Connectivity between specialities has always been a problem in treating ME, with gastro people looking at IBS and neurologists just looking at neurological symptoms. GPs are in the unique position to see the whole person.”
Muirhead says that the symptom distinctive of CFS/ME — post-exertional fatigue — should be the first ‘red flag’ for GPs and a key learning from CFS/ME, and that ‘pacing’ an energy management method referred to in the draft of the 2021 NICE guidelines for CFS/ME, should be advised in cases such as these.
Dr Amy Small, who now takes longer to tease out the often numerous symptoms of patients with long covid and CFS/ME in-clinic, advocates a step-by-step approach: “We need to go back to the grassroots with these patients, listen and pick apart its effects on all of the body’s systems, as well as its effect on the patient’s life. Sadly this is in conflict with the short, one-issue format of GP appointments.”
Dr Helen Salisbury says that a key learning from CFS/ME is that acknowledgment of a patient’s symptoms can go a long way: “We know from decades of treating ME patients that the thing that hurts most is being written off as bonkers,” she says. Salisbury adds that specialist clinic models that have been developed to treat long covid patients, such as Oxford’s, with its discrete strands for long covid patients with respiratory symptoms and those needing multidisciplinary treatment, might be a model for a new generation of CFS/ME services.
Shepherd believes that excellent treatment of patients presenting with post viral multi-system syndromes is ‘perfectly within the GP remit’ and that learning from CFS/ME will prevent patients resorting to the ‘quackery’ that stalks CFS/ME groups on social media.
“Informed GPs can get patients started with simple advice on energy management, then refer the patient to specialist services for ME, or for specialist services for symptoms such as cognitive dysfunction or sleep disturbance,’ he says.
Shepherd says that the ideal would be for each practice to have a GP who takes an interest in CFS/ME and fatigue conditions. “We can only see benefits from the light long covid has shed on fatigue conditions,” he adds.

Post viral fatigue presentation: tips for GPs [from CFS/ME communities]

Be empathetic. CFS/ME symptom clusters are confusing, multi-system and can be difficult to articulate.

Don’t over-focus on depression/anxiety. Chronic fatigue conditions can have a grave impact on patients’ lives, causing mental ill-health, but patients often feel their physiological symptoms are sidelined by an over-focus on mood.

Read the draft 2021 NICE CFS/ME guidelines and be wary of recommending exercise therapies such as GET to patients suffering post-exertional fatigue.

Read up on energy management and pacing techniques, simple interventions that you can immediately recommend to patients presenting with fatigue conditions. https://meassociation.org.uk/product/energy-management-and-pacing/

Competing interests

Sally Howard had CFS/ME in 2013/14, has fully recovered from the syndrome and is not affiliated to any patient groups.

Journalist for British broadsheets, Radio 4 and The British Medical Journal @wanderingsal

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