I was actually midway through writing a different, but very closely connected, blog post (of which I will post an edited version very soon), when I saw the following news, and felt I had to write down my emotional response to that, instead. Sadly, the main takeaway from the original post had been my fear that so-called ‘long-covid’ would only add to a history of division, controversy and multiple appellations of the same thing, leaving myalgic encephalomyelitis (ME/CFS) patients struggling with insufficient support and funding…
So, with that in mind, let’s move to the recent news.
Long haul Coronavirus/ Long-covid – something which, incidentally, the ME/CFS community has been warning about since the very beginning of the coronavirus pandemic – has recently begun to receive more attention in the UK. The NHS has just announced £10 million funding to set up specially created clinics across the UK, providing services for those with long corona: to assess health issues, offer support and refer patients to specialist clinics where necessary. Beyond this, research will be carried out on 10,000 patients, to ensure a better understanding of long-corona.
This is great news. Finally, it seems there is a growing understanding that coronavirus ‘recovery’ statistics do not really mean recovery – perhaps resulting in more people taking the virus more seriously.
However, this recent announcement also feels like a kick in the teeth for me and many others within the ME community. So, what has it got to do with me, or anyone else with ME? Let me unpack things a little.
Let’s go back in time
Six years ago, I got sick with a couple of viral infections: glandular fever (the Epstein Barr virus) and oral herpes. These viral infections left me with post-viral fatigue, which quickly turned into Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS). Since then, I have had persistent symptoms, one of the worst of which is persistent fatigue. Like a very large percentage of those with ME/CFS, I was initially infected by a viral infection, and got chronic Epstein Barr virus, long haul glandular fever. My symptoms never went away. One of the hallmarks of having ME is that it begins with a viral infection.
Sound remarkably similar?
That’s because it is. Top ME researchers have, since the beginning of the pandemic, been warning people that this is highly likely to create a pandemic of people with long term conditions, including ME. In fact, the estimate that I saw in several articles, was that 10% of people who got corona, whether it was severe or mild, would end up developing ME/CFS. This estimate came from studying a long history of epidemic outbreaks of various viral infections, and the aftermath of these – where large numbers of those infected developed ME/CFS. To name just a few examples of this: Akureyri, Iceland (1948); Lake Tahoe, US (1984); London, UK (1955).
Sadly, from what I can tell, in many of these instances, instead of recognising the recurring patterns, these illnesses were treated as specific to their viral infection, and a new name was created, a new school of research etc. This means that rather than being able to trace a coherent pattern of infection, epidemic and then large numbers of ME/CFS, we have a complex history of illnesses that have the same origins and remarkably similar symptoms. In retrospect, we can look at them and realise that they are all pretty much the same thing.
Long-Covid
One of my big fears about this pandemic was that the same thing would happen with long-covid. Instead of recognising that one of the long-term effects of corona would be ME/CFS, they seem to have followed historical mistakes, and are treating it as a different illness: so-called ‘long covid’.
Just to clarify here: from what I understand of the research that I have read, ME/CFS is one of many different long-term effects caused by coronavirus. There is a lot of evidence that it does long-term harm to the lungs, etc. as well. What I would like to make clear is that you can have more than one long-term condition at the same time. So, for instance, corona can cause a person to suffer long-term lung damage, but they may also have ME, alongside that. So I am not saying that ME/CFS is the only long-term condition caused by the coronavirus, because that is patently not true. However, ME researchers maintain that ME/CFS symptoms are very similar to the ‘unexplained’ symptoms of long-covid – and whilst they lack definitive research on either side to rule this out, it makes sense to look at both, essentially post-viral illnesses, together.
For those who have developed long-covid, a separation from ME could be seen as somewhat positive news. Instead of being diagnosed with an incredibly stigmatising illness, they are receiving a diagnosis which the NHS seems to want to take seriously. Already, there is a huge sum of money going into research and care for this illness. Furthermore, it has already been written into NICE guidelines (I believe) that Graded-Exercise Therapy is not a treatment option for long-covid, and there is investigation into which treatment options are possible.
Of course, this doesn’t mean that having long-covid is in any way rosy or easy. My heart absolutely goes out to anyone who is experiencing long term symptoms, having been in similar shoes for the last six years myself. And it saddens me to think that an increase in chronic illness has almost certainly been caused by government mismanagement of this pandemic, in countries across the world.
I do also have what may seem like a very cynical fear that people with long-covid/ME will not receive the care that they might hope for. There have already been stories of medical gaslighting from hundreds of people with long-covid. Many have been told that their symptoms must have psychological basis, or that their illness doesn’t really come from covid (especially those who were infected before routine testing was in place) etc.
And my question is where will they be referred to? For fatigue there are a few existing chronic fatigue clinics, but besides these ME patients get sent to many different types of specialists, none of which are experts in ME. It is always a fringe thing that they know a little about.
I worry that the injection of money into long-covid clinics is as much a political statement to show that the government are concerned about the long term effects of covid, but that after a few months these clinics will close, and we will be back to square one. I hope beyond hope that this is just my cynicism showing, and that I am proved wrong.
Despite my cynical fears, the fact is that at the moment there is money and growing legitimacy for long-covid as a legitimate and real illness. So there is a lot more hope for those with long-covid than for those in the ME community. And it very much seems like the ME community will once more be side-lined and left behind.
But what about ME?
I, and a lot of other people with ME, have spent years fighting to be taken seriously by doctors. We have been denied healthcare, denied referrals to specialists, and have fought tooth and nail to have access to disability benefits and other accommodations. Throughout all of this, we have been ignored, ridiculed and maltreated by many in the medical, and wider, communities. And we have been chronically underfunded – more so than many, many other illnesses that affect a far smaller number of people.
The main evidence defining our treatment in the UK, and many other countries, is based on poorly conducted research, part-funded by the DWP (Department for Work and Pension, UK) – and subsequently disproven. Yet GET and CBT are still being reviewed by NICE, and are still advised as a treatment in the UK for people with ME. The promised review has been postponed several times already, allowing further ME patients to be harmed – whilst, for those with long-covid, GET has already been determined to be detrimental.
I could go on, but I am afraid this has already become somewhat ranty! However, it seems so very unfair that, by contracting a viral infection that was not part of a global pandemic, millions of us will not be treated with the same respect, research, nor recourse to resources as it appears the corona long-haulers will receive. Not that I begrudge it to them, but a whole community of people who have been shouting for help for years, will once more be denied that help because the medical world refuses to acknowledge it is highly likely that these illnesses are a version of the same thing. Will I, in future, have to tell doctors that I have long-covid, just to be taken seriously?
I think many in the ME community were hopeful that the tragic volume of people becoming long term sick post-corona virus might finally allow for ME to start being taken seriously, and to receive some research funding. Instead, NICE has decided to treat these two remarkably similar illnesses as different and distinct, rather than following the advice of many ME specialists and pooling joint resources. This can only hurt both those with ME and long-covid. By combining existing biomedical understanding of ME, with the funding and attention being received by long-covid, support and funding would be generated for all those with long-term, post-viral illnesses. Instead, this opportunity is being heedlessly squandered.
“Two illnesses alike in symptoms, in the UK where we lay our scene”
Whilst I cannot deny my feelings of disappointment and jealousy (unattractive though I know that must sound), I will, of course, continue to stand with the coronavirus long haulers. We are all in a similar boat and our strength is in our numbers. The ME community has been very vocal in its support of post-covid sufferers, over the last few months and I hope that, in return, those with long-covid will recognise the ME community as theirs – and use their potentially louder voices to help us back.
Here’s hoping that future research will offer meaningful change to all those of us living with the debilitating and life changing symptoms of ME/CFS and post-covid – regardless of which label they are wearing. Because, whilst the name given to the illness can hold a degree of power, we must trust to Shakespeare, when he reminds us:
“A rose by any other name would smell as sweet.”
Disclaimer
I do just want to add that I am not a biologist and so everything in this post comes from my research. If you do see something that is incorrect please leave a comment or drop me a message so that I can correct it.
Also just to add that having been through many of the same difficulties of becoming chronically ill with ME: the medical gaslighting, coming to terms with the illness, learning how to pace etc. I would just like to make clear that if anyone with long-covid (or actually any other illness) wants support you are always welcome to reach out to me.
An interesting article discussing the link between ME and long-covid
