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 get worse or deteriorate over time, this is unusual unless there is a good explanation, for example being under a lot of stress, having a succession of infections, poor activity management, or a consequence of having ME/CFS such as vitamin D deficiency.

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. 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 still unsure, you could ask to be referred to a hospital-based ME/CFS Specialist Service for a reassessment.

Sadly, there are a small number of 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 again, that this is somewhat unusual.

See also: Prognosis.

More information

• Details of all UK ME/CFS Specialist Services can be found on the ME Association website.
• We encourage everyone with ME/CFS or who cares for someone with the condition to familiarise themselves with the NICE Guideline and its recommendations. An easy-read version of the guideline has been produced and is available to download for free: An ME Association Summary of the 2021 NICE Clinical Guideline for ME/CFS.
  • Think about the guideline's recommendations and how they might apply to your own situation. Discuss them with your GP or local ME/CFS specialist service. Please let us know how you get on and how the recommendations are received: Feedback@meassociation.org.uk