What is the prognosis for someone severely affected by M.E.? | 28 July 2017

July 28, 2017

We received the following questions from someone severely affected by M.E. – who has made no progress and is desperate to know if her health will improve – and thought it would make a useful blog for others to read and then discuss on our Facebook page.

“Can anyone in this world help please with some truth and advice of what the prognosis is for people who have severe ME.

“I have yet to receive any real information as to what my chances are of recovery, and with no treatment and little support I am beginning to wonder whether I am ever going to get some kind of quality of life back…

“I am in my 50's and severely affected and have seen little or almost no improvement in the last five years. I have been ill for a total of six years – there was very small improvement in the first year but then it stopped.

“My doctor seems caring enough but admits I probably know more about ME than she does, and all she says is ‘people tend to get better', and that she expects I will too – even though she admits, ‘its slow for ME'.

“I think she mean improves when she says ‘better' but then she also admitted she hadn't dealt with anyone who was severely affected. Yet nothing seems to be changing!

“So can anyone tell me what the likelihood of me improving is and for recovery? Has anyone been severely affected and got some life back? If so, how long did it take?

“Am I going to have to live the rest of my life like this?

Dr Charles Shepherd on Prognosis and Permanency in ME/CFS

I take the position, based on both published evidence and on numerous reports from people with ME/CFS that I have seen over the years, that the percentage of people who recover and return to full normal health is small and that ‘spontaneous recovery' is almost unheard of.

You might find it useful to read the information contained in our leaflet on Prognosis and Permanency – which large numbers of people have successfully used in relation to benefit, legal and insurance claims over the years.

However, a significant proportion of people with ME/CFS do make some degree of improvement – something that can occur over a prolonged period (which may take several years) and eventually return to a reasonable level of health.

On a personal note, I have made a significant degree of improvement in what I can do physically and mentally over a period of many years – progress that I attribute to very careful activity management. Nothing to do with drugs, diet or supplements.

Overall, there is a wide spectrum of severity, variability and degrees of improvement and deterioration in ME/CFS – and so prognosis can very difficult to predict with any certainty in an individual case.

The information below – which I helped to prepare – comes from the 2002 Independent Working Group Report to the Chief Medical Officer:

1.4.3 Prognosis

“Although current research evidence on prognosis indicates that only a small minority of patients recover to previous levels of health functioning, this finding must be tempered by the likelihood of selection bias in studies towards inclusion of those with poorer prognosis.

“The likelihood is that most patients will show some degree of improvement over time, especially with treatment.

“A substantial number of patients will pursue a fluctuating course with periods of relative remission and relapse, while a significant minority become severely and perhaps permanently disabled.

“Gradually progressive deterioration is unusual in CFS/ME and should always prompt a further detailed clinical review to ensure that there is no other explanation that has been missed.

“However, progressive deterioration can occur in some patients with CFS/ME; the existence of such patients, many of whom are among the more severely affected, must be recognised. Many need special attention in the delivery of care and the provision of support.

“As with epidemiological studies of the incidence and prevalence of CFS/ME, knowledge of the prognosis of the illness is limited both by a lack of agreement on definitions (with the consequence that different researchers may not be always studying the same condition) and by a shortage of good studies (see Annex 2).

“However, researchers appear agreed on three points:

  • Prognosis is extremely variable. Although many patients have a fluctuating course with some setbacks, most will improve to some degree.  However, health and functioning rarely recovers completely to the individual’s previous healthy levels; most of those who feel recovered stabilise at a lower level of functioning than that before their illness.
  • Of all the people in the community who fulfil criteria for CFS/ME, many experience the majority of their improvement relatively quickly – thus, the distribution of duration of illness is uneven, with greater numbers having shorter than average duration of disease.
  • In those that do not recover relatively quickly, the illness has a tendency to become more prolonged and in a minority, the duration is very long.

“Overall, there is wide variation in the duration of illness, with some people recovering in less than two years, while others remain ill after several decades.

“Those who have been affected for several years seem less likely to recover; full recovery after symptoms persist more than five years is rare. Irrespective of the statistics, each individual requires the necessary assistance to maximise their chances of an early recovery and minimise the impact of the illness.”

If you have any questions about life with ME/CFS, then please contact us via our Facebook page, Twitter account, or via ME Connect and we will do our best to help.

We can also share your experience or questions (anonymously if you prefer) with members of our Facebook community who are often able to provide helpful suggestions and further support. Simply contact us via Facebook messenger.

Image credit: pezography/123RF Stock Photo

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