Long Covid – could we finally start to understand what causes ME?

A few months into the pandemic, trickles of reports started to surface about people who has been ill with Covid-19 and not quite recovered. These people often had a mild form of the illness and hadn’t required hospitalization but weeks and months later, they were still experiencing a multitude of symptoms that had no simple explanation. The virus was out of their system, so why were they still ill?

Image from The Scars of Long Covid, newstatesman.com

Several months later, the trickle has become, if not quite a flood, then a steady flow (at this point I am out of water analogies). Latest research suggests around 60,000 people in the UK have had ‘long Covid’ symptoms for at least three months. The most high profile case is Paul Garner, a professor at the Liverpool School of Tropical Medicine who has been blogging about his experience here.

Long Covid is now becoming an established term, with support groups set up online and a network of online clinics proposed to help support those affected but many of the people suffering are still struggling to be taken seriously by friends, family and work, along with, in some cases, their GP. Apparently the clinics are also difficult to access and there are concerns about the treatment to be offered, since initially it was based on the out of date NICE advice for ME/CFS sufferers which was to avoid too much rest / do Graded Exercise and to get psychological support via CBT. This advice for ME stems from a very controversial study which is currently being reviewed by NICE and they issued updated guidance directed at Long Covid sufferers, advising pacing which those of us with ME have learnt the hard way is the only way to avoid a relapse.

Pacing summary from ME-pedia

Latest research suggests that Long Covid could actually be up to four different syndromes which is further confusing any investigations into what is causing it but from the reading I have done across interviews, news reports and forums, people suffering from Long Covid are going through a very similar experience to mine, when I failed to recover from a never-identified virus 3.5 years ago. I went on to develop ME and found myself with an illness no one quite understands, with no cure, and a large range of symptoms I was left to navigate on my own through trial and error with dozens of (mostly expensive) alternative treatments.

So could this development of Long Covid help those of us who have spent years being ignored by most of the medical community? Might there be more funding, research, investigations into what is causing Long Covid which will also used to help ME patients? Maybe. There is worry out there that the already tiny amount of money being spent on ME research might be diverted to Long Covid instead. Are the two actually part of the same syndrome or are they two distinct ones? Will any treatment for Long Covid also be available to those of us with ME?

For me, I am cautiously optimistic that there may finally be concentrated research on ‘post viral’ conditions and a better understanding of why, months or years after the initial infection passes, some people just fail to recover. I have to admit that over the last year I have lost hope of actually making a full recovery but have satisfied myself with a steady state and mostly just trying not to deteriorate as I am still one of the ‘lucky’ ones with mild – moderate ME but I do have a slight glimmer now that maybe the medical community will start taking these syndromes more seriously and make a concerted effort to find that elusive cause.

For more information on ME / Long Covid there is alot of information on the ME Association site.

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