Can and do people recover?

Published in InterAction 71, Spring 2010

We asked the experts – medical, academic, charity leaders and most importantly, you. So many people responded that we have had to divide the article into two parts, with the next one appearing in the May issue.

Maureen Gadsby

Like most people with M.E., I lived a full active life when in 1992 I had a sickness bug and immediately began with symptoms of M.E.: lack of energy, mentally unable to cope with anything but simple things, suddenly losing energy and colour to my face, bad headaches, and more. I was struggling to cope with work when 6 months later my now husband had a stroke. The stress made my M.E. much worse, my energy dipping to 5-10% of what I had had before M.E. Work was out of the question, I couldn’t even sit up in bed until at least 10 o’clock in the morning. I would come downstairs for lunch and have to lie on the settee for two hours before I had the energy to get back to bed.

We married in 1994, the wedding had to fit my very limited abilities and was spread over 2 days, 3 days apart. We lived a very quiet life together with my health changing very little over the next 6 years. Finding the foods I was intolerant to helped slightly, Efamarine also helped my short term memory.

Then in 2000 I caught the flu and was so ill I was confined to bed for a week, but even during that week I felt different. I thought it strange that even though I was so ill I was awake in the morning and slept in the afternoon which was the opposite of how I had been for so many years, and my head felt clearer. We expected a long slow recovery from the flu based on past experience of illness with M.E., but I was amazed at how quickly I started doing things and how good I felt, and realized that one by one each symptom had gone. It was hard to believe that M.E. had really gone and it took a time to sink in and to change my way of thinking. I was so used to pacing myself and listening to my body, I was worried that if I overdid it M.E. would come back. There will always be a concern that M.E. may return, but I can now enjoy doing so much and appreciate everything I can do.

There is hope and miracles can happen.

Sir Peter Spencer, Action for M.E.

We need to define what recovery means but a proportion of patients regain a great deal of their former health levels and for some this is a complete recovery without relapse. In the absence of proper long term studies the evidence is largely anecdotal but more will recover faster when bio-medical research finally uncovers the answers to those all-important questions: what causes this illness? How can it be treated more effectively? How do we prevent it from happening? Is there a cure which works for everyone?

Martin Frayn

I have recovered by the traditional process, ie. pacing, energy management, CBT and gradually re-introducing more activities as I became better. This is also the basis of the recommended treatment under the NICE guidelines. It’s a slow process but it worked for me. We just have to be patient and keep working at it, it’s miles away from the near-instant cure that some people obtain from the Lightning Process. However, I learnt a lot about myself, about why I became ill in the first place, how to improve my handling of stress, how to be more kind to my inner self, and generally take better care of my health.

Laura

I know of one person but statistically it is very rare. Most recently I read that 5% fully recover. I believe the majority of people have long-term remission where they manage their activity levels and can lead a normal life without their M.E. ever flaring up again. I have seen this in a number of people. Posted on www.facebook.com/actionforme

Dr Esther Crawley, BACME*

Yes, I do think that children can and do fully recover. I have quite a lot of postcards and letters from children and young people from the full range of severity (mild to severe CFS/M.E.) telling me they are completely better, by which they mean completely symptom free and feeling really well for a prolonged period of time.

However, as the evidence says that this illness is genetically heritable, I believe they must have an increased risk of a flare or of a future episode (say after a viral illness) and so we always try and ensure that children and families know what to do in the future if this happens.

*The British Association for Chronic Fatigue Syndrome/M.E. (BACME) is the new name for the NHS CFS/ME Collaborative, of which Dr Crawley is Chair. She is a Consultant Paediatrician.

Linda Freeman

I KNOW that people can and do fully recover from M.E. because it has happened to me! I was severely affected for two years and moderately affected for six. I had reached a plateau and had not improved for about a year or so. One evening a team of people at church prayed for me, and the very next day I found my energy levels had improved. I started to do a bit more each day... all the time waiting for the dreaded crash! I am still waiting.

It is 2 years and 8 months since that day, and I have gone from strength to strength. I work part time (my choice, as I am 57) and am involved in several church activities. I recover from flu type illnesses at the same rate as everybody else, and during my last holiday I walked an average of 6 miles a day!

I am living proof that not all M.E. lasts for ever, and I thank God for my healing which I believe came from Him.

Dr Neil Abbot, ME Research UK

Recovery from M.E./CFS is a very interesting and important topic – and one rarely examined. A quick look at the scientific literature seems to show that ‘recovery’ is a real possibility, though full-recovery rates are quite low. For instance, Dr Melvin Ramsay, referring to classical Myalgic Encephalomyelitis, considered that complete recovery appeared to “be confined to one third of cases, predominantly young people who have been able to rest from onset of illness” – implying that recovery in adults alone was a considerably lower figure.

Looking at chronic fatigue syndrome (in all its various definitions), reported rates of recovery in a few small studies have been less than 20%, and have varied from study to study due, at least in part, to differences in diagnostic definition. Nevertheless, the research literature shows that recovery is a real possibility for some people with M.E./ CFS – a fact which accords with real-world experience; from ME Research UK’s experience alone, we have had many phone calls over the years from people who say they have recovered, using a multitude of therapies or none at all.

The evidence suggests that recovery is more likely to happen early in the illness, and to be far more likely in children than adults, but what we don’t know is how full or complete any particular recovery really is (something the patient themselves might not know for sure).

There is one vital thing to remember, however: that the real, on-the-ground recovery rate from M.E./CFS might be far higher than the (low-ish) recovery rates reported in the research literature. Take a patient who has been given a diagnosis quickly by a GP (using, say, the NICE Guideline of 2007), has been ill for six months only, and then fully recovers. The person will not appear in a research study, will be unlikely to join an M.E. campaigning charity or local ME group, and will disappear back into the workaday world without registering on the M.E./CFS radar as a recovery. The only way to know true recovery rates would be to identify M.E./CFS patients at the point of early diagnosis, and prospectively follow them through for many years. The results might just surprise us all.

Professor Tony Pinching

Yes, people can and do recover, but in different ways and at different rates. Quite a proportion with short periods of illness (a year or two) seem to recover to their previously ‘normal’ levels, and this may be commoner in young people. Many of these don’t get to see specialists or join groups, so they are often not counted when people give figures. But it happens: they definitely had CFS/M.E. and they did get better.

It is a myth that people who have been ill for longer than ‘x’ years can never get better. Some people can and do recover after prolonged and severe illness. I have been pleased to witness that in patients of mine after 5, 10, even 20 years.

However, many people who have had M.E. will come to re-define what ‘normal’ is. These are people who have understood, through learning how to manage it, what the illness signifies for them. They review their priorities and reassess what they spend their energies on, even when they are feeling well. They may reflect that what they were doing before they were ill was not sensible, and do not wish to revert to that. Also, some people may be content with a level of function that may not be ‘100%’ (whatever that is?!), but a different level that still allows them to do everything that they need and wish for. So for many, the word ‘recovery’ is not about going back to what they did before, but to something better, more sustainable, and … wise!”

More on recovery in the next issue from people who have had M.E., plus our new Chair Alan Cook; Professor Derek Pheby, M.E. Research Observatory; Mary-Jane Willows, AYME; Dr Charles Shepherd, ME Association; Tony Golding, trustee of Action for M.E. and Chair of West London Network MESH, Dr Gregor Purdie; NHS Dumfries & Galloway and others.

If you or someone you know has recovered, please do share the news.