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.
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Information provided by The ME Association should not be construed as medical advice. Don't assume any new or worsened symptoms are simply the result of having ME/CFS or Long Covid. We recommend that any information you deem relevant is discussed with your NHS GP as soon as possible. It is important that you seek personalised medical advice from the GP who is in charge of your care and who knows you well.