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Severe ME : Notes for Carers

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Mary Dimmock

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“Over the years, I have cared for loved ones with advanced Alzheimer, late stage cardiovascular and renal disease and Stage 4 cancer. But none of those experiences prepared me for being a carer for a Severe or Very Severe ME patient. The breadth, severity and unprediciability of the symptoms and dysfunction from one person ro the next and from one day to the next can be hard to comprehend and mainstream medical education doesn't help.”

CfsChronic Fatigue SyndromeMyalgic EncephalomyelitisM E CfsM E
Book:Severe ME : Notes for Carers
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“The label ‘Chronic Fatigue Syndrome’ was first proposed by Holmes et al. (1988) of the Centers for Disease Control (CDC). This name was recommended to replace that of a number of terms that implied a causal pathology (e.g. ‘Myalgic Encephalomyelitis’, ‘Post-Viral Fatigue Syndrome’ and ‘chronic Epstein-Barr virus syndrome’), as there was a lack of correlation between biological markers and symptomatology. Hence, this new label reflected the prime clinical characteristic of the condition without alluding to an underlying physical aetiology and, in turn, the definition was based upon signs and symptoms of the patient group. However, many individuals use the term Myalgic Encephalomyelitis (indicating muscle pain and inflammation of the brain), a fact that is reflected by the titles of the two largest charitable organisations in the UK, the ME Association and Action for ME.”

CfsChronic Fatigue SyndromeMyalgic EncephalomyelitisM E CfsM E
Author:Megan A. Arroll
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“To differentiate between symptoms of depression and anxiety secondary to ME/CFS and psychiatric disorders, ask the patient what they will do the next time they have a “good day”. A patient with ME/CFS will have a long list of ideas whereas a patient with major depressive disor- der will say they can not think of anything they enjoy any more. Patients with an anxiety disorder will have a list of reasons why they won’t be able to do or enjoy the activities.”

CfsChronic Fatigue SyndromeMyalgic EncephalomyelitisM E CfsM E
Author:Alison C. Bested
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“ME/CFS is a complex condition that affects every organ system in the body. There is evidence of inflammation at the cellular and biochemical levels: in the muscles, brain and spinal cord in patients with ME/CFS. The name for this illness has had a huge impact on the medical, scientific and patient communities – how it is viewed and how patients are treated by the medical community (160).”

CfsChronic Fatigue SyndromeMyalgic EncephalomyelitisM E CfsM EChronic Illness Stigma
Author:Alison C. Bested
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“Finish Empty begins with a different mindset, a clear and unwavering refusal to settle for average. It means viewing life through a new lens. Those who rise, lead, and leave a lasting impact do not think like everyone else. They fix their focus on something greater, and that clarity shapes everything they do.”

SuccessMotivationDisciplineExcellencePersonal GrowthMindsetLeadership DevelopmentIntentional LivingHigh PerformanceTeam Culture
Book:Finish Empty: All You Got. Every Day.
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