I’m in my late forties and have had ME for over 10 years. For the past few years it has been fairly stable with occasional exacerbations, normally when I get an infection. But I’ve recently noticed a gradual deterioration in almost all of my ME symptoms. I don’t have any new or unusual symptoms and there are no obvious reasons for this deterioration in health – infection, stress etc. I’m reluctant to see my GP – who knows very little about ME – but I am starting to feel concerned.
I'm very sorry to read about the steady deterioration in your health. Although ME/CFS can steadily get worse/deteriorate, this is unusual unless there is a good explanation – for example being under a lot of stress, having a succession of infections, bad activity management, or a consequence of having ME/CFS such as vitamin D deficiency.
However, there may be a medical explanation that has nothing to do with ME/CFS – developing a new medical condition such as hypothyroidism, type 2 diabetes or sleep apnoea, all of which can cause a number of ME/CFS like symptoms and consequently be overlooked.
So when someone reports that their condition is deteriorating, this should always result in a thorough re-assessment of symptoms, a physical examination, and repeating some of the routine blood tests – checking for low thyroid function, blood sugar level and vitamin D status etc in particular.
If your GP is stuck you could ask to be referred to a hospital based ME/CFS multidisciplinary clinic/service for a re-assessment. Details of all UK hospital based services can be found on the MEA website,
Sadly, there are people with ME/CFS who are managing their condition in an entirely appropriate manner but do steadily deteriorate for no obvious reason. But I would stress yet again that this is somewhat unusual.
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.