Question

Two years ago I was very fit and healthy young adult. I then caught Covid. It was more like having a very bad cold and flu combined. I was managed at home with online GP consultations and didn’t have any serious chest problems. So I don’t have a persisting cough or breathlessness. My main symptoms are very similar to ME – debilitating fatigue, brain fog, muscle pain, problems with temperature control and post-exertional malaise.

My doctor has diagnosed Long Covid. But do I really just have post Covid ME?

Answer

Myself and some of my clinical colleagues were pointing out back in May 2020 that there were people with Long Covid who basically had an ME/CFS-type illness. Sadly, it has taken nearly 4 years for this message to be more widely accepted by both clinicians and researchers.

And we do now have several research studies which indicate that, in the patients with a diagnosis of Long Covid, around half also meet diagnostic criteria for ME/CFS.

My personal view is that if someone with Long Covid symptoms meets diagnostic criteria for ME/CFS and they do not have any significant symptoms relating to lung or heart damage from the initial Covid infection, then it would be sensible to use a diagnostic label of ME/CFS, or post-Covid ME/CFS.

Among the advantages here, are that we have a new NICE guideline on ME/CFS that provides reliable information and guidance and management. This is not the case with Long Covid – where graded exercise may still be recommended and the rapid NICE guideline on Long Covid needs updating.

In addition, ME/CFS is a condition that is recognised by the 2010 Equality Act in relation to modifications that may be required for work or educational purposes – which is not always the case with Long Covid.

And while we receive mixed reports about the ME/CFS specialist referral services, these are available in many parts of England whereas there appears to be a move towards closing or amalgamating Long Covid services with ME/CFS services.

So if your symptoms meet NICE guideline criteria for ME/CFS and you don’t have any symptoms relating to damage to the heart, lungs, etc, it’s probably more appropriate to be diagnosed as having post-Covid ME/CFS.

Please let us know if you are in a similar position where your diagnosis is being changed from Long Covid to ME/CFS.

More Information:

• We have several Free Literature booklets relating to Long Covid, including “Long Covid and ME/CFS – Are they the same condition?”