What needs to happen with ME research?
Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, explains what is required from research in order to firmly establish M.E. as a biological illness, in a short video that was made by ME/CVS Vereniging.
Click the headings below to jump to each section on the page.
Real People. Real Disease. Real M.E.
At the ME Association, we believe it is high time the world at large realises that this disease can affect anyone – any age, any ethnicity – and can occur at any time of life.
People with M.E. are demonstrating they possess the confidence to be seen and are raising more awareness than ever before! It’s not too late: Join the Real M.E. campaign.
The ME Association Clinical and Research Guide
This section of the website comprises extracts taken from the 2019 edition of our guide
- The 11th edition of our clinical and research guide is a must-have for anyone who has been affected by – or has an interest in – ME/CFS/PVFS.
- This authoritative publication represents the most comprehensive, evidence-based summary currently available and contains everything that health professionals and patients need to know about this devastating neurological disease.
- It has been written by Dr Charles Shepherd, Hon. Medical Adviser to the ME Association and Dr Abhijit Chaudhuri, Consultant Neurologist, from the Essex Centre for Neurosciences.
- To purchase your copy, visit our website shop, or click the image opposite. The guide is also available as a Kindle e-Book!
Free Guide for Health Professionals!
We are pleased to offer a free hard-copy guide to GPs, NHS consultants and other healthcare professionals in the UK. Please contact head office with name(s) and address details, or for more information and for any bulk orders.
|“ME/CFS is a biological illness, not a psychologic disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain. These patients have multiple pathophysiological changes that affect multiple systems.”
“ME/CFS is a serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients.”
“The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions.”
See Introduction for more information.
What are the Chances of Recovering from ME/CFS?
Most people with ME/CFS fall into one of four broad groups:
- Those who manage to return to normal health, or near normal health, even though this may take a considerable period of time.
- The majority who make some degree of improvement but eventually tend to stabilise. They then follow a fluctuating pattern with both good and bad periods of health. Relapses or exacerbations are often precipitated by infections, operations, temperature extremes or stressful events.
- A significant minority of patients remain severely affected and may require a great deal of practical and social support.
- Continued deterioration is unusual in ME/CFS. When this occurs, a detailed medical re-assessment is advisable to rule out other possible diagnoses.
Research into prognosis
- Several research studies looking at prognosis in ME/CFS have now been published (e.g. Bombardier and Buchwald 1995; Hinds et al 1993; Sharpe et al 1992; Vercoulen et al 1996b; Wilson et al 1994).
- Results from these studies indicate that ME/CFS often becomes a chronic and very disabling illness with complete recovery only occurring in a small minority of cases.
- A systematic review of 14 studies (Cairns and Hotopf 2005) found a median full recovery rate during the follow-up periods of 5%, and the median proportion of patients who improved during follow-up was 39.5%. The authors stated that:
“Full recovery from untreated CFS is rare. The prognosis for an improvement in symptoms is less gloomy. This review looks at the course of CF/CFS without systematic intervention. However, there is increasing evidence for the effectiveness of cognitive behavioural and graded exercise therapies. Medical retirement should be postponed until a trial of such treatment has been given.”
The ME Association’s position on the use of CBT and GET in the management of ME/CFS and on the quality of the research evidence proposing use of such therapies is well known. We do not recommend GET and believe it should be withdrawn from the current NICE guideline. CBT should only be used as it is in other chronic conditions, to help a person adjust to disability and to learn coping strategies.
- The report to the Chief Medical Officer (2002; in section 1.4.3) noted that:
|‘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 return completely to the individual’s previous healthy levels; most of those who feel recovered stabilise at a lower level of functioning than before the illness….’
‘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 for more than five years is rare.’
Additional help from the ME Association:
Prognosis and Permanency
We have produced an information leaflet on prognosis and permanency that can be used in conjunction with benefits, insurance and pension assessments, and we also published a blog on the subject that will be helpful.
Quality of Life
- Studies that have examined functional status and quality of life measures (Buchwald et al 1996; Hvidberg et al 2015; Komaroff et al 1996; Nacul et al 2011a; Schweitzer et al 1995; Winger et al 2015 – in adolescents) also confirm that the scale of impairment across a range of physical and mental activities can be just as great or greater than in many other chronic medical conditions.
- One study, from Nacul et al (2011a) in the UK, reported that:
|“ME/CFS is as disabling and has a greater impact on functional status and well-being than other chronic diseases such as cancer. The emotional burden of ME/CFS is felt by lay carers as well as by people with ME/CFS.”|
- The high level of disability associated with ME/CFS often stems from a combination of symptoms such as fatigue, pain, orthostatic intolerance, sleep disturbance, cognitive impairment and, in some cases, an associated depression.
- Another study, published in 2017, showed that people with ME or CFS were significantly more disabled in terms of functional ability while at the same time showing little difference in role emotional or mental health, compared to people with multiple sclerosis.
- The authors commented:
|“This suggests that with a great illness burden, and continuing skepticism about the legitimacy of ME and CFS, those with this illness tend to be functioning relatively well on mental health related indices.”|
Age and illness duration
- The extent to which patients’ age and illness duration might affect symptoms and functioning is uncertain.
- In a recent collaborative study involving researchers from the UK, USA and Norway (Kidd et al 2016), participants were categorised into four groups based upon age (under or over age 55) and illness duration (more or less than 10 years).
- The authors concluded that age and illness duration should both be taken into account when trying to understand the effects of these two variables on functioning and on symptoms.
- They explained:
|“The groups were compared on functioning and symptoms…. The results suggest that older patients with an illness duration of over 10 years have significantly higher levels of mental health functioning than the three other groups…. In addition, the younger patients with a longer illness duration displayed greater autonomic and immune symptoms in comparison to the older group with a longer illness duration.”|
The ME Association
Please support our vital work
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.
ME Association Registered Charity Number 801279
Visit our other pages in this section:
- What is ME?
- Symptoms, Testing and Assessment
- Prognosis and Quality of Life
- Children and Adolescents
- NICE Clinical Guideline
^ Return to top of page