Date: 10/03/2015 Host: @LonsdaleR
The chat on the 10th March 2015 8pm GMT (click to check your local time) will be hosted by Ria Lonsdale @LonsdaleR. Ria has provided the follow as in introduction to the chat.
Looking forward to the chat.
Hello #OTalk Community!
I have put together some brief notes on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) for those not too familiar with the condition so that as many people as possible can join in. For those already in the know you can skip to the Q’s.
A brief overview of CFS/ME
CFS/ME is a complex long term health condition, with multiple and varying symptoms. The condition has been observed in medicine for over a hundred years but has had several names and labels. The cause of CFS/ME has been widely debated over the years, with some historically believing it was a disorder of the mind. Although the exact cause of CFS/ME remains unclear, it is now formally recognised as a medical condition. Recent research suggests a likelihood of multiple causes of CFS/ME and potential for sub-types.
Unremitting fatigue Nausea Information processing deficit
Muscle/joint pain Malaise Digestive problems
Sleep disturbances Poor memory Concentration difficulties
Word finding difficulties Delayed recovery Headaches
Loss of balance Light/noise/smell sensitivities Dizziness
(not an exhaustive list)
Impact of CFS/ME
Limited ability to engage in Occupation
Loss of role, loss of employment/education, dependency, grief
Social isolation, avoidance
Anxiety, depression, other mental health difficulties
Discrimination, labelled, misunderstood, disbelieved
There is presently no cure or medical treatment for CFS/ME. NICE Guidelines (2007) and findings from the PACE Trial (2011) recommend a rehabilitation approach utilising a combination of therapeutic interventions. This includes the principles of CBT, Graded Exercise and, Activity Management.
Occupational Therapists play a key role in the rehabilitation process.
Broadly the aim of therapy is to:
- Acknowledge the individuals symptoms and the impact on their occupational performance and quality of life
- Develop the individuals’ understanding of the condition
- Support the individuals’ acceptance of the condition
- Develop the individuals’ understanding of how their lifestyle choices and behaviours may perpetuate their symptoms
- Support the individual to learn self-management techniques to stabilise symptoms
- Support the individual to utilise the principles of grading to slowly increase activity tolerance and occupational performance
- Facilitate the individuals development of a Personal Management Plan and Relapse Management Plan
- Empower the individual to live life inspite of the condition
- Who has or is working with people with CFS/ME? What setting? What interventions have you been using?
- For many the diagnosis of CFS/ME is a relief as they have spent many months/years being passed around different health professionals, or simply being dismissed. For many the diagnosis can be earth shattering, and it is not uncommon for individuals to continue to seek an alternative diagnosis, one that is perhaps better understood and/or treatable. How can OT’s support the acceptance process?
- Individuals with CFS/ME can often fall into a “boom and bust” pattern of behaviour. This is characterised by over-exertion that leads to an exacerbation of symptoms and a delayed recovery. Continuing to exist in a “boom and bust” pattern will ultimately perpetuate symptoms and make it more difficult to manage the condition. What interventions can OT’s use to stabilise CFS/ME symptoms? Activity Management?
- Once symptoms are more stable, the principles of grading can be used to slowly increase an individuals’ activity tolerance. How can OT’s support individuals to understand and use grading?
- How do OT’s empower individuals to continue using self-management strategies into the future?
NICE, (2007) Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Diagnosis and Management of CFS/ME in Adults and Children, Manchester:NICE
White, P., Goldsmith, K., Johnson, A., Potts, L., Walwyn, R., DeCesare, J., Baber, H., Burgess, M., Clark, L., Cox, D., Bavinton, J., Angus, B., Murphy, G., Murphy, M., O’Dowd, H., Wilks, D., McCrone, P., Chalder, T., Sharpe, M., on behalf of the PACE trial management group, (2011) Comparison of Adaptive Pacing Therapy, Cognitive Behaviour Therapy, Graded Exercise Therapy, and Specialist Medical Care for Chronic Fatigue Syndrome (PACE): A Randomised Trial, Lancet, 377:9768:823-836
Taylor, R., O’Brien, J., Kielhofner, G., Lee, S., Katz, B., Mears, C. (2010) The Occupational and Quality of Life Consequences of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis in Young People, British Journal of Occupational Therapy, 73:11:524-530
Burley, L., Cox, D., Findley, L., (2007) Severe Chronic Fatigue Syndrome (CFS/ME): Recovery is Possible, British Journal Occupational Therapy, 70:8:339-344
Hughes, J., (2002) Illness Narrative and Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Review, British Journal Occupational Therapy, 65:1:9-14
Hughes, J., (2009) Chronic Fatigue Syndrome and Occupational Disruption in Primary Care: Is there a Role for Occupational Therapy?, British Journal of Occupational Therapy, 72:1:2-10
Pemberton, S., Berry, C., (2009) Fighting Fatigue: Managing the Symptoms of CFS/ME, Hammersmith Press Limited
Cox, D,. Cox, B.,(2000) Occupational Therapy and Chronic Fatigue Syndrome, John Wiley and Sons
www.actionforme.org.uk – Action for ME
www.meassociation.org.uk – ME Association
www.bacme.org – British Association for CFS/ME
Post Chat Updates: