Question

I have now been suffering from quite severe Long Covid for over three years. I didn’t have a severe Covid infection at the time and was largely self-managed at home with just a few online consultations with my GP.
I’m very grateful for all the information and guidance provided by the ME Association for symptoms such as brain fog and post-exertional malaise that are just the same as in ME. But have there been any significant research developments into what’s going wrong in Long Covid? As well as finding some form of effective treatment that doesn’t just help with symptoms?

Answer

I’m afraid the simple answer to your key question is that there haven’t been any really significant breakthroughs in finding out what is going wrong in Long Covid or how to treat it.

What we do know is that Long Covid covers a number of different conditions. These range from people who were seriously ill in hospital and now have what may be long-term damage affecting the heart, lungs, kidneys, etc. There are also people who were managed at home like yourself, who do not have any significant organ damage that is directly related to their Covid infection, and now have an illness that overlaps with ME/CFS – or is post-Covid ME/CFS.

There are others who have a combination of ME/CFS type symptoms and Covid-related organ damage. So it’s a complicated picture and as a result we are never going to find a single cause or treatment for Long Covid. Not surprisingly, people with Long Covid are feeling increasingly frustrated by the way in which huge amounts of money and research time over nearly four years has failed to produce any major breakthroughs in either cause or treatment. And this comes as no surprise to people with ME/CFS where much lower levels of funding and research interest over a much longer period of time have also failed to find an effective form of treatment.

Hopefully, there are now signs that clinicians and researchers who are working in Long Covid are acknowledging the clinical and pathological overlaps with ME/CFS and making use of this knowledge to try and help both groups of people. However, this has been a painfully slow process.

The MEA has an information booklet, Long Covid and ME/CFS – Are they the same condition? covering the clinical and pathological overlaps between Long Covid and ME/CFS. It also covers the basic management of ME/CFS symptoms that occur in Long Covid.

This is currently in the process of being updated.