Posted by Paul Samael on Monday, July 20, 2020 Under: Random thoughts
This is the second in a series of posts about my experience of both post-viral and chronic fatigue, prompted by media reports that quite a few people who’ve had Covid-19 seem to be having similar problems with fatigue and a peculiar range of other ongoing symptoms. Click HERE for Part 1. In this one, I’m going to focus on the frustrating lack of a proven medical explanation for what causes post-viral or chronic fatigue (and how, with no clear explanation, it’s difficult to know what makes for an effective treatment).
As noted in Part 1, there was a gap of almost twenty years between the episodes of post-viral fatigue I had in my twenties and the episode of chronic fatigue (which also started with a viral infection) in my mid-forties. You might have thought that medical thinking on the subject would have advanced significantly in that time. But you’d be wrong. The answer from my GP was basically the same advice as I received almost 20 years earlier: we don’t really understand it, but hang on in there, because many people do get better from it (eventually). Get as much good quality rest as you can, work out what levels of activity you can tolerate and then look to build these up very gradually over time (this is known as “pacing”).
And that is perfectly reasonable advice, which you should follow too (although subject to some important caveats which are explained below). But other than continuing to sign you off work, there is very little else that your GP or indeed the NHS can or will do for you. I say that with some trepidation, given that the NHS – especially at the moment - is the nearest thing we have to a national religion here in the UK (and any criticism of it is likely to be viewed by some as a form of heresy).
Some possibly heretical observations about the NHS
Don’t get me wrong – I think the NHS does many things very well. If you have a heart attack and are in need of a triple bypass, as my father was about 10 years ago, it does an excellent job. But it tends to be best at responding to stuff that will kill you and/or which has a well established diagnosis and treatment. If people were dying of chronic or post-viral fatigue or if it was easier to work out what caused these conditions, we might be in a different place – but the reality is that most sufferers are too exhausted to complain about the lack of attention paid to them.
I also understand why the NHS feels in a bind on this. It can only recommend treatments which are supported by the evidence. There are some scientific papers supporting pacing as an effective treatment – so it recommends pacing. But that means GPs have their hands tied when it comes to anything else that might help – they are effectively duty bound to sound sceptical about it, so there is no room for exploring anything else that might work (not that GPs have really got the time or the remit to undertake research/experimentation of that kind). And that, I suspect, is another reason why so little progress has been made in explaining it or finding additional effective treatments.
This approach also encourages less sympathetic GPs (and people more generally) to dismiss it as being “all in your head” because all the tests you’ve been sent for come back as negative (so as they see it, there is no evidence for your condition other than your subjective complaints that you feel tired most of the time and generally “unwell” – see part 1). But the tests are not for chronic/post viral fatigue – because there is no definitive test for that. So it’s hardly surprising that they all come up as negative. The evidence that it ignores is that you have a significant number of people (estimated at around 1 in every 250 people in the UK) complaining of unusual levels of fatigue, triggered in most cases by a viral infection. Can it really be the case that every single one these people is simply making it up?
Problems with pacing
Pacing has also proved to be controversial for two reasons. First, it can be taken as implying that post-viral or chronic fatigue is “all in your head”, which is not helpful for the reasons outlined in my first post. Second, it requires very careful implementation, because if you try to maintain levels of activity that are too much for you, then you will probably get worse not better. To start with, you probably shouldn’t be looking to increase your activity levels unless you have started to feel at least a bit better for some of the time – and when you do start, you should probably be doing less than you feel you could or should do (and see how that goes for several weeks at least before trying to “up the pace”). I was fortunate enough to have a sympathetic GP who accepted that I was genuinely ill, but also recognised that I was desperate to get better and warned me to take things slowly and not to overdo it.
Problems with work
The lack of progress in explaining the condition (and the time it takes to get better) is particularly problematic when it comes to work. Sufferers often need a long time off – sufficiently long that employers may need to put them on long term sick leave and/or consider terminating their employment. I was fortunate to have a very understanding employer – but as mentioned in my first post, I did run into problems with my employer’s permanent health insurer when I had to go onto long term sick leave. They took the view was that I was well enough to return to work – so they refused to pay out under the policy that was supposed to pay a proportion of my salary when I went onto long term sick leave. I appealed it and eventually they backed down. Had there been a definitive test for chronic or post-viral fatigue that I could’ve pointed to as evidence for my condition, it would’ve been much more difficult for the insurer to refuse cover the first time around.
But whingeing about it doesn’t help (much)
Ultimately though, there’s not much we can do about the frustrating lack of an explanation for post viral or chronic fatigue – and whingeing about it won’t help anyone get better (although I hope it is helpful for sufferers to know that, if you are feeling pretty frustrated about it, you are not alone). The really big question is whether there is anything other than pacing and/or the passage of time which might help. That’s what I’ll be discussing in my third and final post on this.
In : Random thoughts
Tags: covid-19 coronavirus "chronic fatigue" cfs "post-viral fatigue" nhs
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