MEA Website Survey: What has happened to your health as a result of ME over last 12 months? | 03 December 2019


Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

Myalgic Encephalomyelitis/Encephalopathy (M.E.) is considered to be a fluctuating medical condition – which means that individual symptoms and symptom severity can change throughout the day, from day to day and from week to week, month to month, etc.

Relapses, exacerbations and flare-up’s of symptoms can be triggered by for example, infections, and anything that stresses the body’s immune or nervous system – such as physical trauma and surgical operations.

A relapse can also be triggered by mental or physical exertion over and above that which a person can comfortably achieve routinely. And sometimes there is no obvious cause.

You will find the website survey on the homepage of the MEA website.
It appears about halfway down, just below the ME Biobank promotion.

When it comes to the outcome/prognosis of M.E. we know that some people can make a degree of improvement over time, others will remain relatively stable, while in some cases there is a marked deterioration.

Often there is no straightforward progression in relation to improvement, or even recovery. Progress can be interrupted by periods of stability when symptoms persist and function remains impaired, and by periods of deterioration. It can be very hard to predict how any one individual will progress with M.E.

It should also be noted that any sort of progressive deterioration in symptoms, especially when there is no obvious trigger, should prompt a medical re-assessment – to make sure that the explanation is not the result of another medical condition (e.g. low thyroid function, coeliac disease, sleep apnoea) that has symptoms which are also present in M.E. and have not been previously recognised.

In relation to what has happened to your own illness over the past twelve months, please contribute to the discussion on MEA Facebook and consider the factor/s you believe have been involved with either an improvement or a deterioration of your health as a result of M.E.

We will be making use of this information when we next review the MEA information on Prognosis and Relapses. Your feedback will also be used to help with the work of the committee that is currently rewriting the NICE clinical guideline on ME/CFS that will be published in October 2020.

More information

  • The Prognosis and Permanency leaflet has a summary of research findings relating to prognosis and permanency. This can be helpful in relation to applications and appeals for DWP benefits and legal cases or when seeking retirement on the grounds of ill-health.

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