A 10 point nursing model of practice for patients with Myalgic Encephalomyelitis (ME)

 There is an urgent need  to develop an appropriate  model of practice for patients with  Myalgic Encephalomyelitis (ME). 

Crawford, Aitken and McCagh (2008) found that nurses still respond more positively to patients with Multiple Sclerosis and Rheumatoid Arthritis than patients with ME, which they are more likely to wrongly view as a psychological disorder.

Nurses are not being educated in Myalgic Encephalomyelitis, making it difficult for them to recognise the mistreatment of ME and also making it unsafe for patients with ME to be exposed to a hospital/ medical environment.

A 2009 study (Chew-Graham et al ), for example, found little evidence that Nurses are being taught about ME. One person stated that: “ people probably just look at them and think, oh you know he's just tired all the time: lazy...lazy bastards and wasting doctor's time.'”

A study of the literature reveals an alarming lack of awareness of the seriousness of the disease. Without the appropriate understanding of the pathology of the disease and the specific individual system dysfunction, patients are put at risk of mistreatment and misinterpretation.

The disease, which can occur in both sporadic and epidemic forms (Jenkins 1991) has been described in the medical literature for about 70 years. Since 1969 ME/CFS has been classified as a neurological disorder by the World Health Organisation.

ME was recognised as a specific disease entity by The Royal Society of Medicine in 1978 and as an organic disorder by the Department of Health in 1987 (Hansard 1987).

Included in the NHS National Service Framework (DH 2004) as a long-term neurological condition, cycles of severe relapse are common in ME as are further symptoms developing over time. "Substantial improvement is uncommon and is less than 6%" (Anderson et al. 2004); and "Full recovery... is rare" (Cairns & Hotopf, 2005).

It is essential that  nurses  know ME is formally classified as a neurological disorder in the International Classification of Diseases (ICD10:G 93.3; WHO 1992), and that the ICD separately classifies fatigue syndromes as a behavioural (psychiatric) disorder (ICD 10:F 48).

An association however, of the name “CFS” with “ME” has confused practitioners into thinking that CFS and therefore ME, by default, is a mental health condition, causing havoc in the lives of  physically ill ME patients. 

ME  is not a vague fatigue condition, treatable by psychiatric therapies

The Minister for Care, Norman Lamb, wrote to me in 2013 acknowledging that the term CFS/ME is considered to be a neurological condition. He further stated that: "The use of an umbrella term (CFS/ ME) is also not intended to imply that fatigue syndrome and myalgic encephalomyelitis are equivalent "

The Minister's clarity, regarding the difference between ME and CFS is not so evident within the NHS however, where a confusion of terms abounds.

This widespread confusion can be traced back to the 1994 CDC case definition of CFS, a theoretical, not a patient-based framework, which has inexplicably resulted in doctors “ presently diagnosing and treating a research abstraction called CFS, rather than any actual disease .” Spinhirne (2014)

Before the term CFS, overpowered ME, ‘Myalgic Encephalomyelitis’ was the name for a well-defined, virally triggered, potentially severe and chronic neurological disease. (Tymes Trust 2007).

It is critical that nurses understand that Myalgic Encephalomyelitis and CFS are not the same. Carruthers et al (2012), explicitly called for the separation of ME from CFS pointing out that “Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease."

Within ME there are a range of complex symptoms and system dysfunctions, including the following: 

• Severe headache
• Head Pain
• Body pain including constant, burning, itching, crawling dispensation, throbbing
• Unpredictable muscle spasms, limbs, head, whole body
• Ear pain
• Tinnitus
• Dizziness
• Eye pain
• Visual disturbance, including tunnel vision, double letter vision, difficulty holding focus, fuzzy, blurry sight, dry eyes with tear film not holding, temporary loss of sight
• Black outs
• Loss of proprioception
• Severe Cognitive dysfunction impacting processing, memory, arithmetic, visualisation, speech, comprehension, language, reading, writing, interpretation, description, concentration, recall, word-finding, muddled words and actions
• Muscle dysfunction and weakness
• Gut pain, swelling and acid reflux
• Nausea and vomiting
• Recurring periodic Paralysis
• Facial palsy
• Swallowing difficulties
• Parasthesia (pins and needles) 
• Numbness/ loss of temperature sensitivity
• Noise sensitivity (hyperacusis)
• Light sensitivity ( photophobia ) 
• Movement sensitivity
• Touch sensitivity (hyperesthesia )
• Multiple chemical and perfume sensitivity including drug sensitivity
• Magnet and electrical sensitivity
• Irritability
• Emotional lability
• New allergies
• Food sensitivities
• Hypoglycaemia
• Overheating/Shivering
• Cold Extremities
• Heat and cold intolerance
• Post-exertional deterioration / malaise 
• Autonomic dysfunction
• HPA (Hypothalamic–Pituitary–Adrenal) axis shift
• Sleep disturbance including shift in sleep/ awake cycle, insomnia, difficulty waking
• Neck and jaw pain
• Mouth ulcers and sore tongue
• Increased frequency of urination
• Increased thirst
• Breathing difficulties

The complex interaction and impact of symptoms affects the 'how' and 'when' a nurse interacts with a patient, to maximise the best possible outcome. The wrong interaction can lead to harm. The wrong treatment can lead to death, as in the case of Sophia Mirza, who was treated as having a psychosomatic condition and died of ME in 2005.

Some questions nurses might ask are :

• Does  the person need care day and night and assistance with all areas of their life?
• Does anything they do have a potential after-affect that can affect them hours or days or weeks at a time?
• Can they move their limbs? 
• Can they open their eyes or speak? 
• Do they require assistance with a drink? 
• Do they need physical help in order to move? 
• Do they need help getting into and pushing a wheelchair?
• Do they have a hoist?
• Do they experience body pain? 
• What degree of physical pain are they in?
• Do they experience Muscle fatigue ? Muscle dysfunction? 
• Do they have an inability to stand without support?
• Are they bed-bound for large portions of the day, or totally bedbound? 
• Do they have restricted mobility? 
• Do they experience body spasms, paralysis, numbness, shaking?
• Do their muscles just stop working all of a sudden?
• Are their muscles able to hold them up?
• Do they black- out upon standing?
• Do their hands, feet and legs go “dead”?
• Do they have poor spacial awareness? 
• Do they bump into things?
• Can they bear physical contact? How do you approach this?
• Do they suffer from pins and needles, flowing and moving sensations?
• Do they need someone around at all times because they are in danger of falling or hurting themselves? 
• Are they completely immobile for large parts of the day, all the time, or does it vary?
• Are they in constant and severe pain? 
• Do they need someone always available to help them within calling distance?
• How do they summon you?
• Without ongoing assistance, day and night, would they get their basic needs met ?
• Can they predict or determine how they will be in any one moment? 
• Does contact from other people have a post- exertional impact resulting in worsening symptoms?
• Does light hurt them? 
• Do they have to have the curtains pulled, low lighting at best or complete darkness?
• Does heat or cold or both make them feel more ill?
• Do they run out of energy and feel even more ill with exacerbated symptoms after even small activity or movement?
• Have they developed a heightened awareness to chemicals and odours leading them to feel nauseous, headache or other symptom increase?
• Does their diaphragm ache and struggles with breathing? Do they get breathless quickly?
• Does the person use oxygen? How does this affect them? (From "Notes for Carers" Crowhurst 2015)

There are no known appropriate treatments for ME available at this time and it has been found that some of the mainstream therapies applied to ME sufferers have been unhelpful or harmful on many occasions , especially treatments such as Cognitive Behavioural Therapy and Graded Exercise Therapy. (Crowhurst 2005).

The nurse needs to be aware that the person with ME is a long term chronically-ill patient, who is unlikely to get better; anyone severely affected for more than 5 years has a poor prognosis of recovery (DH 2002).

Knowledge, sensitivity and awareness are paramount. The nurse must be able to respond creatively in order to aid the person. This means learning to understand :

• what is needed,
• when it is needed and
• how it is needed ;

 which may not always be obvious or repeatable.

 In the author’s experience (Crowhurst 2005) , the most appropriate nursing approach is one that incorporates the Nursing Process (Yura and Walsh 1967) within a self-reflective model of practice .

 An ME-aware approach requires the nurse to be particularly conscious :

• of how ME manifests.
• the full range of symptoms.
• the likely impact of any interaction upon the person.

Any nursing procedure needs to be based upon an acute awareness of the severity of illness and the multi-system dysfunction the person is experiencing. (Crowhurst 2015)

 This cannot be emphasised enough or over-played; it is the key to any successful intervention.

To care effectively for someone with Myalgic Encephalomyelitis, Nurses must:

1. Be aware that ME is a neurological disease with multi-system dysfunction. 

2. Always trust and listen to the patient and their reaction.

3. Be sensitive so that they can gently approach and offer care to someone with ME, particularly the most severely affected, without causing distress or deterioration.

 4. Adopt a moment - by - moment, flexible approach to care, where the nurse is willing and able to wait patiently and return later. (Crowhurst 2015)

The response of people with ME is not always predictable; often the opposite rather than the expected occurs. 

This must be understood by the nurse . It would be well to consider alternative interventions in advance, so the nurse is prepared when something is not working.

5. Be aware that it might not be possible, in any one moment for the person to receive the help they need, because they are so physically ill. In other words, the nurse recognises that there may be a moment when the person can or might tolerate an intervention and other times when that simply will not be possible.

Even if an intervention is not possible at one moment, it may still be possible at some other point in time, for there are fluctuations of experience of symptoms within the general chronicity of the illness.

Any task or interaction needs to be at the pace that is tolerated by the person, never imposed by the nurse; timing is key.

6. Be aware that a person with ME, particularly the most severely affected, may have complex hypersensitivities to the environment :

•  they might react badly to exposure to bright light or daylight, they might be hurt or even paralysed by noise, even seemingly ordinary noises
•  they may not be able to tolerate pressure or touch
• they may be experiencing extreme pain which is not relieved by medication,
•  they may be severely affected by exposure to chemicals such as cleaning products, polishes and perfumes
• they may find movement past or near them disturbing or painful and disorientating
• they may find being moved extremely difficult to tolerate.

 Any action that may result in triggering these or other hypersensitivities, can lead to serious exacerbation of symptoms, make the person’s experience intolerable and/or cause long term deterioration.

7. Be aware  that the person with ME may have severe cognitive dysfunction, may not be able to write or read , speak , understand or cope with questions. A very gentle approach is essential in developing a partnership with people who have ME.

8. Be quick and efficient, to minimise risk of deterioration or distress, but at the same time, quiet and careful. 

How you do a task is as important as when you do a task.

9. Understand that people with ME can easily over exert themselves, trying to get even their most basic health or care needs met and, as a direct consequence, be overstimulated and decline.

10. Have integrity, wisdom and patience. Any improvement or response may be extremely small, almost invisible perhaps to the nurse, yet the person with ME may discover significant benefit from what might seem like a small, even insignificant outcome.

Patience is particularly required, both for the nurse and for the patient.

New ways of enabling nurses to assist patients with ME urgently need developing. The starting point, as this article has stressed , must be awareness that ME is a serious, physical disease , with profound multi-system dysfunction .

Greg Crowhurst RNLD (retired), PgDip, Cert Counselling, MA

DISCLAIMER :
Please note that the author cannot be held accountable for any damages or actions arising from reading this article, which is presented for informational purposes only. This article  is not intended to be a substitute for the medical advice of a licensed physician. The reader should consult with their doctor in any matters relating to his/her health. 

References :

 Andersen MM et al. (2004) Illness and disability in Danish CFS patients at diagnosis and 5-year follow-up. J Psychosomatic Research 2004; 56: 217-229.

Cairns, R. and Hotopf, M. (2005) Prognosis of chronic fatigue syndrome: a systematic review. Occupational Medicine 2005 55 20-31

Carruthers B et al (2012) Myalgic Encephalomyelitis - Adult & PaediatricInternational Consensus Primer for Medical Practioners International Consensus Panel http://www.hetalternatief.org/ICC primer 2012.pdf

Chew Graham C et al(2009) Practice Nurses' views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study BMC Nurs. 2009; 8: 2.Published online Jan 22, 2009. doi: 10.1186/1472-6955-8-2 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2635361/

Crawford J, Aitken S, McCagh J (2008) A comparison of nurses attitudes towards people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Multiple Sclerosis and Rheumatoid Arthritis. Liverpool Hope University..  British
Psychological Society Conference I,  Dublin 2-4th April 2008.  Book of Abstracts ; Poster Presentation 0o7,( page 227)  : http://www.bps.org.uk/downloadfile.cfm?file_uuid=294D335D-1143-DFD0-7E3E-511853853E27&ext=pdf   

Crowhurst G (2005) Supporting People with Severe myalgic  encephalomyelitis , Nursing Standard, 19, 21, 38-43

Crowhurst G (2015) Severe ME, Notes for Carers http://stonebird.co.uk/Notes/index.html

Department of Health (2002) , A Report of the CFS/ME Working Group. Report to the  Chief Medical Officer of an Independent Working Group, London, The Stationary Office.   

Hansard (1987) , House of Commons, Nov 1987 p. 353

Jenkins R & Mowbray J.F. (1992) Post-Viral Fatigue Syndrome, New Ed Edition,  John Wiley & Sons Publishers.

Spinhirne (2014) Comment for the December 2014 CFSAC Meeting http://on.fb.me/1uT5Gwb

Tymes Trust Vision 2007 http://www.tymestrust.org/pdfs/vision2007-1.pdf

Yura, H. Walsh, M. (1967) The Nursing Process. Appleton-Century-Crofts, Norwalk.