Thirty Years of Disdain
 | |
| Author | Mary Dimmock, Matthew Lazell-Fairman |
|---|---|
| Country | United States |
| Language | English |
| Subject | Medical history |
| Genre | Medical |
| Publisher | Self-published |
Publication date | 2015 |
| Media type | digital |
| Pages | 327 |
Thirty Years of Disdain — How HHS and A Group of Psychiatrists Buried Myalgic Encephalomyelitis is a paper written by Mary Dimmock and her son, Matthew Lazell-Fairman, a ME/CFS patient, covering the history and the politics of ME, with a particular focus on how the US Health and Human Services (HHS) and a group of British psychiatrists have handled the disease.
Contents
Synopsis[edit | edit source]
Patient advocate Mary Dimmock and her son, Matthew Lazell-Fairman, a severe Myalgic Encephalomyelitis patient, have authored a document, “Thirty Years of Disdain: How HHS and a Group of Psychiatrists Buried Myalgic Encephalomyelitis.”
The thoroughly researched and thoughtfully crafted document provides an account of Matthew’s own battle with the disease, as well as a historical account of the litany of factors that have impacted research, prevented the development of effective treatments, degraded clinical care, and promoted the disbelief and disdain that ME/CFS patients endure.
In the document, Dimmock states: “for the last thirty years, political agendas, institutional neglect, and bad science have buried ME under a vague condition of ‘fatigue,’ often associated with mental illness. The most widely accepted treatments have been cognitive behavioral therapy and graded exercise, used to convince patients they are not really sick, just deconditioned. Medical care is abysmal and too often results in physical harm. ME patients have been so neglected, disbelieved, and stigmatized that some have lost hope and committed suicide.”
Dimmock said that their intent in writing the document was to shine a light on the magnitude of systemic change required of both Health and Human Services and the medical community at large to correct the situation and give ME patients hope in the future. “Ill-defined patient cohorts, band-aids and incremental changes are not enough to jump-start this long-neglected field,” said Dimmock.[1]
Links[edit | edit source]
Updated Dec., 2015.
See also[edit | edit source]
References[edit | edit source]
Myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.
Myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.
ME/CFS - An acronym that combines myalgic encephalomyelitis with chronic fatigue syndrome. Sometimes they are combined because people have trouble distinguishing one from the other. Sometimes they are combined because people see them as synonyms of each other.
Cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.
The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.
