Question

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.

Answer

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.