Deb Cohen: A year ago, Professor Paul Garner wasn't doing this [PaulG pictured lifting kettle bell in his garden].
He was hit badly by Covid. He works as an infectious diseases specialist, but it was his personal battle he found himself talking about in the media as he campaigned for Long Covid – also known as post-Covid syndrome - to be taken seriously.
Paul Garner: It came back and hit me over the head like a cricket bat. Floored me, completely floored me. It made my head foggy. It interfered with my speech. I mean it just did so many things that were just so unpredictable and quite frightening, even for somebody that's fairly tough.
DebC: So what is Long Covid? Long Covid isn't one condition. One official definition of post-Covid syndrome are symptoms that can't be explained by something else 12 or more weeks after having had Covid.
Symptoms can include things like fatigue, brain fog, headache and breathlessness, and different studies come up with different estimates about how many people have it.
There is no dispute that, after a major illness, patients need time to convalesce. Some are left with tissue damage. There is research into who these people are, and how to detect them.
It is *how* Professor Garner describes his recovery that has sparked huge controversy. That recovery began by riding his bike slowly around Liverpool Sefton Park for about 20 minutes, and then gradually increasing it.
DebC [to PaulG]: So how did you go from being quite debilitated with your symptoms post Covid to being able to cycle up a hill like that?
PaulG: Letting go of fear. Believing I would get better. And knowing that I could control my symptoms myself.
DebC: “Good for him,” you may say, but Paul's views on how he overcame the chronic fatigue that he felt post-Covid plays into a very controversial part of medicine: that is where the exercise programs with increasing intensity, plus psychological support, can act as a treatment that helps cure people with post-viral conditions.
Draft official guidelines don't recommend this, but there's significant disagreement among scientists.
What isn't disputed is that, like ME and chronic fatigue syndrome, symptoms of long-Covid include fatigue, tiredness after exertion, and brain fog. But the question of how to treat it is.
Early on during his recovery from Covid, Professor Garner's writings chimed with many with long-term ME. He wrote, “I am reading materials about pacing, and CFS/ME, and listening to the CFS/ME community. I'm taken aback that doctors have been so dismissive of what these patients have been saying for so long.”
However, in January this year, he struck a very different tone, writing, “I feel that I have looked down the barrel of the ME/CFS gun and disarmed it.”
He wrote of “false fatigue alarms” and said, “I learned that I could change the symptoms I was experiencing with my brain.”
PaulG: You have some stake. You have some control over what happens to you. It's complicated. It's hard, but you can modify what's happening to you.
DebC: Some suggest there's nothing subtle about what he's saying. He's been accused of “cognitive dissonance”.
Critics say that, crudely put, he's flipped from saying those with chronic fatigue syndrome have been ignored to suggesting it's “all in the head”.
He faces accusations of stomping on the vulnerable from a position of power.
He says he's been subjected to personalized vitriol online.
[image shows a retweet of a Reuters article about Michael Sharpe (“Online activists are silencing us, scientists say”)]
To understand why feelings run so high, you need to go back to 2005 and the setting up of a clinical trial that involved treating people with chronic fatigue syndrome with intensifying exercise programs and the psychological intervention cognitive behavioural therapy.
The trial concluded they can help. Patient groups were outraged. A mighty scientific scrap lasting years ensued, and as it stands, the National Institute for Health and Care Excellence (or NICE) says such exercise programs shouldn't be recommended.
Early in the pandemic, people with ME or chronic fatigue syndrome recognised the pattern of symptoms some people said they were experiencing after Covid.
Dr Charles Shepherd has had ME following an infection. His view is patients should manage energy carefully and not do incremental exercise. This, he says, applies to Long Covid too.
Charles Shepherd (ME Association): …and our experience with people with ME is that this can actually make people worse rather than better. There's another group who are much more in the, if you like, the sort of ME/CFS group, who've got Long Covid persisting beyond three months, who are not recovering, who are not getting better with exercise regimes or whatever, in whom I think a management plan which is much more consistent with what we do in ME/CFS is going to be far more appropriate for them.
DebC: Professor Garner says his symptoms fit with different criteria for chronic fatigue syndrome and ME. And just because he's found that exercise helped him to recover, doesn't mean he didn't have it.
PaulG: I really think we need narratives from people that have recovered, to hear the case studies like mine and other people, so that we can do proper research on it. It's very important that research in post-viral syndromes is not shut down and it's not shut down by adverse advocacy groups that believe that the disease is permanent.
DebC: Covid and treatments such as being put on a ventilator can leave some people with organ damage and other problems. Researchers are currently looking at the different ways the infection affects people in the long term: why people might be more likely to be adversely affected, and what treatments might be useful.
Professor Chris Brightling (University of Leicester): Each patient will obviously present with their own individual problems and [in] some of those there will be evidence of changes in their breathing tests, for some, in others it may be changes in their kidney function etc. So, for, in those cases, there are opportunities to then also then have treatments that are tailored to those individuals, which may include drug treatments. So I'm not excluding drug treatments altogether. What we don't yet know is, is there an underlying cause of Long Covid that itself could be amenable to a drug treatment.
[shows NHS advert]
Man’s voice: Then the symptoms came back.
Woman’s voice: Headache every single morning.
Woman: Muscle aches and pains all over my body.
Woman: I don’t feel like my brain is working the same way anymore.
Man: The chest pain in particular, is as if I’d been just hit by a train.
Do not make the mistake of thinking that being young or being fit is gonna stop COVID from having a long-term impact on your health.
DebC: The risk of Long Covid is used by the NHS as a warning for anyone blasé about catching the virus.
When it comes to helping those with Long Covid to recover, medics running Long Covid clinics do believe that this should include progressive exercise and psychological support as part of their rehab.
A survey of over a thousand clinicians showed 87% supporting the use of intensifying exercise programs and 90% backing support for mood disturbances linked to anxiety and depression. [Source:
Singh SJ et al, BMJ Open 2020]
Helping people with serious heart and lung problems to recover, including people who have had infections, is something Professor Sally Singh has been doing for years. She's now running a Long Covid clinic and a small cohort of people have now been treated. The program includes extensive clinical evaluation and rehab, and there are signs that exercise programs may be helping.
Professor Sally Singh: We found that their exercise capacity improved significantly, as did their fatigue, and what was interesting was that a number of people that came into the program were actually scoring quite highly on our fatigue scores. So we were really encouraged, one, that exercise didn't make people worse, which is important, and secondly, we actually were able to make people's fatigue better. And there was some hints that we were able to improve their cognitive function as well.
DebC: One big unanswered question is how widely and how badly persistent symptoms after Covid presents in children. It plays into one of the big unanswered questions: should we vaccinate our young people? Dr Elizabeth Whittaker is researching these persistent symptoms in children.
[
DebC to ElizabethW]: Is it quite hard to separate out what might be physical symptoms and what might be psychological symptoms - them experiencing the pandemic in different ways?
Dr Elizabeth Whittaker (Imperial College London): I think every child who experiences symptoms has that symptom. Whether that symptom is exacerbated by fear and anxiety and worry, because school's been closed and they've lost their routine and they've lost everything that's normal in their lives, is kind of irrelevant because they need support to recover from that symptom and our job is to support them through that whilst understanding more about how much of it is absolutely virus in the blood or driving it and how much of it is post-infectious things, and how much of it may just all be anxiety and fear related. And we don't know that yet and it's really key that we understand that.
DebC: Those with ME and chronic fatigue syndrome think all the research into Long Covid could benefit those with ME, but say they have plenty to offer in the other direction too.
CharlesS: This needs to be a two-way process. We've got all this experience of how people should be managing their symptoms - their ME, post-viral fatigue-type symptoms - and from long-standing experience - and it would be nice, I think, if the Long Covid community were benefiting from that expertise that we've built up over many, many years.
PaulG: The symptoms are absolutely real. It's how you then deal with them that is different. People say, “it's all in the head” and that, it's, it's *not true* that it's all in the head. It's the relationship between your central nervous system and what you're experiencing in the rest of your body. So it's still a real experience, but it just doesn't fit the biomedical model.
DebC: The distinctions may sound subtle, but in the debate over how to treat those recovering from a virus, they're anything but, and they're pivotal to how we as a society make sense of Long Covid's shadow.
