Question

I have all the characteristic symptoms of ME/CFS – exercise-induced fatigue, cognitive dysfunction, unrefreshing sleep, orthostatic intolerance etc – and my illness followed an acute viral infection. I’ve now been ill for over three years and in addition to all these symptoms I wake up every day just “not feeling well’. I know I’m not alone in feeling this way and wonder why this symptom isn’t ever included in descriptions of this illness.

Answer

You make a very valid point and one that I can relate to from personal experience having felt exactly the same way almost every single day that I have had ME/CFS.

I don’t have any accurate figures on just how common “not feeling well” is in ME/CFS, but from dealing with large numbers of people with ME/ CFS over many years I think it’s a very common but often unrecognised feature.

I would add that while fatigue, cognitive dysfunction and many other symptoms of ME/CFS are all very disabling and affect the ability to carry out normal activities, constantly feeling ‘unwell’ has a very adverse effect on your quality of life with ME/CFS.

So I agree that this is an important and common symptom that we need to try and get inserted into the diagnostic criteria and what doctors are taught about ME/CFS.

Thank you for raising it.