In a hybrid meeting of the Scottish Parliament on 19th May 2022 mention was made of ME within a section of the debate centred on long-Covid.
John Mason MSP queried the Scottish Government’s response to long-COVID in that he had read opinions that the 80 specialist clinics in England none reportedly offered effective treatments. Long Covid clinics might, he said, be part of the answer to the needs those with long-COVID but they do not guarantee a better patient experience. He highlighted content on the British Heart Foundation’s website
Other research that I understand is going on includes research into whether existing medicines, such as statins and anticoagulants, can help to prevent long Covid and relieve its effects. Another study, on long Covid in 11 to 17-year-olds, is attempting to identify symptoms in children and young people who were not treated in hospital. There are at least another 15 research projects across the UK, covering topics such as breathlessness, reduced ability to exercise and brain fog. However, in its briefing, the Royal College of Physicians of Edinburgh confirmed that there is no internationally agreed clinical definition of the condition or clear treatment pathway.
When we read those articles and realise the basic level of research that is going on, it strikes home how little we understand about long Covid and how it can be treated. Therefore, we need to accept that this is a long-term project. Of course, it is important for the 150,000 or so people with long Covid in Scotland, of whom perhaps one in six is so ill that day-to-day activities are substantially limited—in one study, half of the sufferers said that they are unable to return to work. They are urgently looking for treatment and cures.
He then turned to ME as an example of a timeline those hoping for an understanding and treatment of long-COVID wish to avoid
It is perhaps useful to think of the timeline around myalgic encephalomyelitis. I understand that ME was observed in Los Angeles in 1934 and was thought at first to be atypical polio. In 1946, it was called Icelandic disease, after appearing in Iceland; in 1956, it was mentioned in The Lancet; and, in 1984, it was called chronic fatigue syndrome. However, it is still not well understood today. If ME is anything to go by, we are not going to get quick answers concerning long Covid. It is certainly argued by some that research is not progressing fast enough……….. All Governments around the world said that we will get through it (COVID) in a few weeks. Call me pessimistic, but I am trying to bring a little bit of realism. If we compare long Covid with ME—I accept that long Covid is not the same as ME—we see that the ME project has been a long-term one and there have not been easy answers. I do not believe that there are easy answers to long Covid.
Gillian Mackay MSP also spoke with a useful summation of the effects of long-COVID, especially in relation to scotland,
The true extent of the impact of long Covid is still unknown, and it may remain so for some time. As we have heard, it has been estimated that around 100,000 people are living with long Covid in Scotland. However, that figure does not adequately capture the devastating impact of the condition on many of those affected. Long Covid can have a significant impact on the quality of life, and its effects range from fatigue and shortness of breath to brain fog, chest pain, sleep disturbance and other symptoms that we are still discovering. The variation of those symptoms means that people have had to fight for diagnosis and treatment.
In its briefing for the debate, the Royal College of Physicians of Edinburgh highlighted that there is still no internationally agreed clinical definition or clear treatment pathway for long Covid and the evidence base for the condition is still developing. That presents a significant challenge for health services, and long Covid requires concerted, co-ordinated efforts to treat.
We must not underestimate the pressure that that will place on health services. Forward planning is essential. We should prioritise further research into long Covid, and I welcome the Government’s commitment to that. Such research must include the effects on children and young people and should be intersectional, as there is already evidence that certain groups are disproportionately affected by long Covid. Organisations such as the Health and Social Care Alliance and Long Covid Scotland have called for improved data collection on long Covid, so that we know exactly how many people have the condition, how they are being affected and who is most at risk.
Accurate, reliable data will enable us to design services that will properly meet the needs of people with long Covid, many of whom will require long-term care. Data published in The Lancet shows that 43.5 per cent of people had at least one complication after having acute Covid. Supporting people to self-manage their symptoms where that is appropriate is essential. A number of organisations have highlighted the need for patients as well as health and social care staff to be informed about how to find support if symptoms present…… We also need to raise awareness of the disproportionate impact of long Covid on certain groups of people. We know that the pandemic has not affected everyone equally. The most recent Office for National Statistics data release shows that long Covid is more prevalent among women, despite the fact that acute cases of Covid tend to be in men over the age of 50. Close the Gap has highlighted that women are more likely to be in occupations where there is an increased risk of developing long Covid, such as healthcare and education. Their concentration in low-paid, precarious work also makes them more likely to miss out on statutory sick pay.
Many of these requirements, certainly around need for research, definitions, and prevalence measures apply equally to ME.
Stephanie Callaghan MSP thereafter mentioned the Scottish Government’s contribution of £2.5m to COVID research which is being used to fund 9 projects before turning to ME and CFS.
There is some disagreement about the value of making comparisons between long Covid and other post-viral conditions such as ME and chronic fatigue syndrome, or CFS as it is often known. However, one friend to whom I spoke yesterday caught Covid before testing was available, and before long Covid was even heard of. She told me that, looking back, she felt really quite lucky to have been diagnosed with CFS following Covid, because she was advised early on to incorporate something called pacing as a treatment.
Pacing is an activity management strategy that is designed to help ME and CFS patients to limit the number and severity of their relapses while remaining as active as possible. My friend has gone from swimming 100 laps in the pool to swimming just four laps once a week, and from walking 20 miles to sometimes struggling with 500m. Although pacing can be frustrating, it has saved her from pushing beyond the limits, and it still does so two years down the line.
Overall, a useful debate showing the inadequacies of current research funding and structures to deal with a chronic condition are being re-discovered with long-COVID but also at least an insight into the egregiuos past falures over ME. What is not clear is whether this will prompt governments to improve their funding and offering across all aspects of the NHS and government to both long-COVID patients and also those with other illnesses – particularly ME.