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21st Christmas

...fragile hurting, without clear direction, 21 years in the wasteland,  following the star, that is how we enter into Christmas.

Hoping for a good moment to open the presents, knowing it is not likely,  that the rip of torn paper will cause instant deterioration,  that thoughtless, foolish perfumed gifts will be a toxic bomb, that the shaking,  the paralysis will overshadow the numb hands, so desperate to be held, so unable to bear contact.

Ours is the poverty of the outcast, the refugee, the broken and for all of that-  the star of Bethlehem shines the brighter.

Not lazy bastards : nurses need educating in Myalgic Encephalomyelitis

(Published in the  ME Global Chronicle December 2014)

Nurses are not being educated in Myalgic Encephalomyelitis (ME), 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.

Affecting more people than AIDS, lung cancer and breast cancer combined, more people than have multiple sclerosis or cystic fibrosis, Severe ME leaves a person as functionally impaired as someone suffering from diabetes, heart failure and kidney disease, and as severely disabled as someone with late-stage AIDS, Multiple Sclerosis, or a person undergoing chemotherapy.

If nurses wrongly assume the disease is a vague fatigue condition, treatable by psychiatric therapies, they will not necessarily be aware that ME is a serious neurological disease with multi- system dysfunction. It is essential that they 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 genuinely physically ill ME patients.

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, 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.

With ME there are a range of complex symptoms and system dysfunctions, including the following: Neurocognitive problems,Transient, full or partial muscle paralysis, Cardiovascular dysfunction, Autonomic nervous system dysfunction, Gut issues, Acute, crippling hypersensitivities to noise, light, touch, movement, chemicals, drugs, Body pain and severe headaches, Profound post-exertional neuro immune exhaustion.Immune System dysfunction, Muscle weakness and spasms

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.

Given the body of evidence, over 5000 published papers outlining the biomedical abnormalities in ME, a history of epidemics stretching back over 70 years and an active patient movement, there is no excuse for the nursing profession's ongoing ignorance. Education rooted in the biomedical truth of this serious neurological disease is key, but sadly lacking.

The starting point, as this article has stressed, is awareness that ME is a neurological disease, with multi-system dysfunction. A self-reflective, partnership-based model of practice is required in order to begin to meet the complex needs of these grossly neglected patients . (Crowhurst 2005)

Greg Crowhurst RNLD, PgDip MA

Carruthers B et al (2012) Myalgic Encephalomyelitis - Adult & PaediatricInternational Consensus Primer for Medical Practioners International Consensus Panel 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

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) :

Crowhurst G (2005) Supporting people with severe myalgic encephalomyelitis. Nursing Standard;2/2/2005, Vol. 19 Issue 21, p38
Jason L and Wagner LI (1998) Estimating the prevalence of chronic fatigue syndrome among nurses The American Journal of Medicine, Volume 105, Issue 1, Pages 91S-93S

King L (2012) Florence Nightingale Still Comforting The Sick

Spinhirne (2014) Comment for the December 2014 CFSAC Meeting

Essential reading from Florence Nightingale

I have just been reading "Notes on Nursing", it contains extraordinary relevant insights for anyone who cares for someone with Severe ME, take this for example  :

"I think it is a very common error among the well to think that "with a little more self-control" the sick might, if they chose, "dismiss painful thoughts" which "aggravate their disease,"  Believe me, almost any sick person, who behaves decently well, exercises more self-control every moment of his day than you will ever know till you are sick yourself. Almost every step that crosses his room is painful to him; almost every thought that crosses his brain is painful to him: and if he can speak without being savage, and look without being unpleasant, he is exercising self-control."

What a challenge to those who believe that the person has just got to somehow pull themselves together ! Such ignorance. The courage it takes my wife, Linda, just to get through each moment of torment, lies way beyond my comprehension. Would I be so strong- after 21 years of never-ending agony ? I don't think so for a second.

Awareness, awareness, awareness, of the extent and depth of illness is so important in Severe/Very Severe ME :

The most important practical lesson that can be given to nurses is to teach them what to observe–how to observe–what symptoms indicate improvement–what the reverse–which are of importance–which are of none–which are the evidence of neglect–and of what kind of neglect.

You need to be so aware of how easily you can make things a lot worse just by your presence, never mind the chemicals, the movement, the noise you are likely to bring into a situation :

"I have often been surprised at the thoughtlessness, (resulting in cruelty, quite unintentionally) of friends or of doctors who will hold a long conversation just in the room or passage adjoining to the room of the patient, who is either every moment expecting them to come in, or who has just seen them, and knows they are talking about him. If he is an amiable patient, he will try to occupy his attention elsewhere and not to listen–and this makes matters worse–for the strain upon his attention and the effort he makes are so great that it is well if he is not worse for hours after. If it is a whispered conversation in the same room, then it is absolutely cruel; for it is impossible that the patient's attention should not be involuntarily strained to hear. Walking on tip-toe, doing any thing in the room very slowly, are injurious, for exactly the same reasons. A firm light quick step, a steady quick hand are the desiderata; not the slow, lingering, shuffling foot, the timid, uncertain touch. Slowness is not gentleness, though it is often mistaken for such: quickness, lightness, and gentleness are quite compatible.

Above all, you cannot always judge the seriousness or severity of illness by physical appearance, one of the many cruelties of Severe ME, is how "well" the person can look, despite their extreme bodily dysfunction, complex cognitive issues and widespread physical suffering  :

I have known patients dying of sheer pain, exhaustion, and want of sleep, from one of the most lingering and painful diseases known, preserve, till within a few days of death, not only the healthy colour of the cheek, but the mottled appearance of a robust child. And scores of times have I heard these unfortunate creatures assailed with, "I am glad to see you looking so well." "I see no reason why you should not live till ninety years of age." "Why don't you take a little more exercise and amusement," 

"Why don't you take a little more exercise and amusement," : how ironic that, here in the 21st Century , that "advice" is the sum total of official policy towards ME.

Florence Nightingale Notes on Nursing :

Who are the villains here ?

There is a post on CoCure today from Oslo, accusing critics of a moral transgression through their "unfair blackening of an effective treatment (cognitive behavioral therapy)." 

The authors argue that if "you really care about the patients, one should help everyone get this treatment".

It is very disturbing, this growing tendency to portray people with ME as the villains and researchers as the victims. Well, here are 101 Good Reasons to be critical :