On the 27th of August 2024, BBC Breakfast included a segment on ME/CFS – particularly ME/CFS which is “triggered by long COVID”.
Presenters heard from Karen Hargrave who is a person with – and carer to her husband who has – long COVID and ME/CFS, Oonagh Cousins who has long COVID, Dr Binita Kane – a consultant respiratory physician, and Dr William Weir – a retired ME specialist.
Within the segment, key areas of discussion included:
- The loss of a previous life due to ME/CFS, and due to long COVID.
- Interactions with health professionals.
- ME/CFS is “physical in nature”.
- The need for more biomedical research.
The loss of a previous life due to ME/CFS, and due to long COVID
Karen Hargrave – alongside her husband, James, “contracted long COVID which developed into ME”. While Karen has now recovered enough to work part-time, James’ disease has become severe – around 25% of people with ME/CFS are thought to have severe or very severe forms of the disease.
In her interview, Karen describes that she is unable to hug, or even sit with James and hold his hand, it is also impossible for the couple to have a conversation – the last time Karen heard her husband’s voice was over a year ago.
Karen spoke of the “happy life” that she and James had before long COVID and ME/CFS – and the impact the loss of this life has had on the couple:
“There’s just a life that we had before, which has just gone. And there’s a grief that comes with that, that is just taking us both a lot of time to be able to process and kind of work through properly”.
Oonagh Cousins – who spoke at the 2024 Unite to Fight conference earlier in the year – is a former Great Britain rower forced to retire from the sport due to the symptoms of long COVID. Oonagh also experienced a sudden change in her life due to the condition, and in her interview, she reflected on how it felt when she realised that her symptoms were “not going away” and she made the decision not to try and get selected for the postponed Olympics:
“it was completely devastating, I couldn’t believe it was happening”
ME Research UK notes that, this concept of ‘loss’ of a previous life was also captured in a video entitled “Severe and Very Severe ME/CFS” which is part of the ‘Dialogues for a Neglected Illness’ project released in 2021.
Interactions with health professionals
During the segment for BBC Breakfast, Karen also discussed her experience of interacting with health professionals concerning James’ care. In one particular communication, Karen recalled speaking with a doctor over the phone about the difficulties James was having swallowing – and therefore drinking. During the phone call, the doctor asked:
“is it that he can’t drink, or is it that he doesn’t want to”.
Karen reflected that although in isolation these interactions may not seem significant to someone without lived experience of ME/CFS, when these types of interactions accumulate, you are left feeling “constantly worried that you’re going to be disbelieved or dismissed” – regrettably, something that many people with ME/CFS will be able to relate to.
Based on the couple’s experience – and the experience of others living with ME/CFS, Karen has launched a campaign called #ThereForMe which calls for the government to take ME/CFS seriously, and ensure those living with the disease will be believed.
ME/CFS is “physical in nature”
Dr. Weir stated that he is “very frustrated” with the “slow pace of change in the way people view ME” due to the competing theory that the disease has a psychological, and Dr. Kane highlighted the implications this misconception has in practice today:
“but even now because we’ve been taught the wrong thing about ME people are told to go back to the gym, get back on your bike, go out for a walk every day in the fresh air and that can actually make people worse and sometimes people are even prescribed graded exercise which is harmful and that has been very well debunked now and is out of the guidelines.
So, there’s a lot we can do if we improve medical education….. We could start by implementing the NICE guidelines for ME that have been around for some years now and at least patients can then start getting the right diagnosis and symptomatic support”
Importantly, Dr Weir drew upon existing research (although the exact studies were not referenced) to highlight the biological abnormalities seen in people with ME/CFS such as inflammatory markers in spinal fluid, and areas of inflammation in the brain. Dr Weir also referred to the outbreak at the Royal Free Hospital in the 1950s, and how Dr Melvin Ramsey recognised at the time that ME/CFS (what was termed in The Lancet in 1956 as ‘benign myalgic encephalomyelitis’) was a physical illness.
The need for more biomedical research
The need for more biomedical research – particularly clinical trials investigating drug repurposing, was acknowledged clearly by Dr Kane. Oonagh also commented on the lack of research into ME/CFS – and the impact this may have on those with long COVID:
“As someone with long COVID, I feel very strongly that if we had done more to understand what is happening in people with ME ..we would be in a much better place now to deal with all these people who have long COVID, and many of these people with long COVID are also developing ME – by one estimate it is 50% of people with long COVID have ME”.
Summary
The segment on BBC Breakfast highlighted the many difficulties faced by those with ME/CFS – particularly those with severe ME/CFS, and the challenges in accessing appropriate health care due to misconceptions that the disease is psychological.
Although not mentioned in the BBC Breakfast segment, the topics raised draw parallels with those investigated by a full Coroner’s Inquiry examining the circumstances surrounding the death of 27-year-old Maeve Boothby O’Neill from severe ME which looked at:
- Her ‘care’ at the Royal Devon and Exeter Hospital from January 2021 until her death on 3 October 2021.
- Delays in palliative care.
- The wider lack of understanding in the medical community of ME/CFS.
In fact, following the Coroner’s conclusions, Andrew Gwynne MP, Parliamentary Under-Secretary of State at the Department of Health and Social Care stated that:
“Maeve and her family were forced to battle the disease alongside the healthcare system which repeatedly misunderstood and dismissed her.”
It is clear that changes are urgently needed to improve care for people with ME/CFS – and those with long COVID – starting with the implementation of the NICE guidelines for ME/CFS, but also improved medical education which reflects the biological nature of ME/CFS, and allocation of funding for biomedical research from large funding bodies – such as the MRC, with the resources to support more expensive projects, such as drug repurposing clinical trials.
“There have been a lot of promises and a lot of reports, but what we need now is action”
Dr Binita Kane, consultant respiratory physician.
