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 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.
- 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
Medical Matters is for information purposes only. The answers provided by Dr Shepherd and the ME Association’s other expert advisers should not be construed as medical advice. We recommend that any information you deem relevant is discussed with your GP as soon as possible. It is important to obtain advice from a GP who is in charge of your clinical care, who knows you well, and who can consider other likely causes for symptoms. Seek personalised medical advice whenever a new symptom arises, or an existing symptom worsens. Don't assume that new or worsened symptoms are a result of having ME/CFS.