Tuesday 13 October 2020

Long Covid recognition but what about ME/CFS?

I’m taking a diversion from the usual writing topics for my blog this month as none of us live in a vacuum and let’s face it, Coronavirus had been dominating our lives for most of the year.


There’s been a lot of talk about ‘long Covid’ and I’m very glad that it’s being taken seriously. These are the lingering and debilitating symptoms after having a bad hit of the virus. People with long Covid experience a physical, mental and cognitive toll on their ability to do the things they used to be able to do.  They feel exhausted after exercise or a short walk with muscle pains and general fatigue.  This will all sound familiar to those of us who have been diagnosed with ME (sometimes called CFS and I won’t go into the politics of that just now). One of the tell tale symptoms of ME and one of the diagnostic criteria is what is known as P.E.M or Post Exertional Malaise.  This can be physical, mental or social.  It usually doesn’t show up immediately after the activity but people with ME or PEM will typically ‘crash’ the following day or some hours after the event.  


Most people with a diagnosis of ME can pinpoint the illness that led to their disability. For me it was a very nasty virus in 1994 and a recurrence either of the same virus or a different one six months later. Both bouts were characterised by severe coughing, pleurisy, breathlessness (One GP thought my lung might have collapsed) and months of acute pain around the chest and back.  I wish that the medical community had told me the strain or name of the virus back then – rather than just, ‘there’s a nasty cough virus going round’ so at least there was some way of checking back and comparing development with others who suffered from that same virus and had a similar outcome.  Of course, as with Covid, everyone’s immune system reacts differently and there are of course other virulent infections and coronaviruses that have circulated before and after the one I had. But having a name and strain is empowering – it means we know what we’re dealing with, rather than foundering in the dark, and experts can chart its progress, build up a picture and develop effective treatments.


The sad thing is, not that people shouldn’t be taking Covid seriously, but it has taken Covid for people to use basic common sense when they have an infection. Back in 1994, I was around infected people at work and was subjected to ‘large viral loads’ as I was around such people for large parts of the day. I can actually remember the person who had a severe cough in 1995 and spending a large part of the day with her in close proximity – this too, when I was already vulnerable from the previous bout. But because there was no real public awareness and entrenched attitudes – some people thought it showed their fortitude and strength of character to be able to come into work and battle on when severely ill. 


However, in the light of Covid, things have had to change. Hopefully we will never go back to the casual and foolish attitude of people expected to ‘come into work’ when clearly they should be in bed. Far from anything else, it’s a false economy in ‘saving the economy’ if the whole work force is infected instead of one.


The government have announced they are setting up specialist clinics for people suffering with ‘long Covid’. Before this announcement people were being referred to ME/CFS services.


But those of us who have suffered such symptoms for years can't help but feel slightly miffed about the neglect of M.E. these past four decades and the ridicule and dismissiveness that has been heaped upon us. I remember the same conversations going on in the eighties.  I hope the conversation will change now.


Dan Wyke recently wrote in the Facebook group ‘Invest in ME Research’ summed up perfectly the fears and frustrations that many people with ME share: “The frequent sight of doctors publicly bemoaning the lack of understanding of Long Covid and asserting its seriousness/realness is particularly galling to ME/CFS patients whose chronic, post-viral disease has been ignored by them (and to some extent the media) for decades.

Misunderstanding/ignorance regarding ME/CFS is so entrenched within the health profession that even now many doctors are incapable of seeing the parallels with Long Covid. They aren't aware of the extensive body of ME/CFS research or (limited) treatment possibilities for themselves/their new patients.

The prospect of unwell GPs raising awareness of Long Covid, while continuing to completely ignore ME/CFS, is a very real possibility.

Should GPs succeed in creating a separate medical category for Long Covid and a narrative of public understanding/acceptance (denied ME/CFS), it will be another cruel blow to the +250,000 ME/CFS patients in the UK.”*


* I wish to thank Dan Wyke for permission to quote him.