|Poster courtesy ME Awareness: Words & Pictures https://www.facebook.com/MEAwarenessPics|
The quick explanation full of medical terms: (we return to layman's terms below)
"Myalgic Encephalomyelitis (ME): complex, acquired multi-systemic disease
Pathophysiology: Profound dysfunction/dysregulation of the neurological control system results in faulty communication and interaction between the CNS and major body systems, notably the immune and endocrine systems, dysfunction of cellular energy metabolism and ion transport, and cardiac impairments.
Cardinal symptom: a pathological low threshold of fatigability that is characterized by an inability to produce sufficient energy on demand. There are measurable, objective, adverse responses to normal exertion, resulting in exhaustion, extreme weakness, exacerbation of symptoms, and a prolonged recovery period."
Above from http://www.hetalternatief.org/ICC%20primer%202012.pdf
So basically we are in pain and our energy is depleted, and the least effort (physical, mental or emotional) increases our pain and exhaustion.
Typically, we keep trying to return to normal activity, only to be slammed down again and again with "crashes," of this relapsing and remitting disease. On good days, we are in danger of doing too much and exacerbating our illness. Rest is vital, exercise is damaging.
Ultimately we develop holes in the white matter in our brain, nodules on our spinal chords, rare leukemias, cancers and heart disease, and if those don't kill us soon enough we commit suicide.
From those causes we die 20 years younger than average.
*(see note at bottom re: above-linked study)
Doctors who have treated this and other illnesses say that patients with severe ME are sicker than their patients with cancers or late stage AIDS. Researchers have not found the cause but are pursuing possible retroviral and enteroviral culprits. Genetic predisposition and environmental factors my play roles.
Journalist Hillary Johnson has documented the twisted twists and turns of ME research in her excellent book, Osler's Web, updating the horror story in this recent Discover article: http://discovermagazine.com/2013/march/17-shadow-virus#.UfFBLW2ZbN
Similarly horrific and more recent developments in the story of research suppression and the silencing of scientists are disclosed in Dr Judy Mikovits book with Kent Heckenlively, Plague.
Misnomers, alternate names and/or related diagnoses: CFS," CFIDS, Chronic Epstein Barr, Chronic Lyme Disease, Gulf War Illness, Fibromyalgia, and more... Please forgive the use of the misnomer "CFS" in this post. What we're talking about is Severe ME but sadly the CDC clouded the issue by changing the official name, which forced doctors and researchers to use the misnomer, which means we have that "CFS" label to contend with when we quote them. The correct name of the disease is Myalgic Encephalomyelitis.
The most severely ill patients (about 25%) are bedridden, in such great pain, so profoundly exhausted, and so sensitive to light and sound, that they must lie in a darkened room, eyes closed, can't wash or dress, may need assistance toileting, and may need to be tube-fed.
ME patients desperately need help from people with energy to spread this information and do a little advocacy work, and if you can, please contribute to one of the organizations listed in my previous post in this blog: http://itsonlymeitsnotmymind.blogspot.com/2013/07/wanna-donate-to-help-patients-with-me.html
*Note setting the record correct re Mortality Study
In respect to the four victims in the Mortality study it must be noted that while the findings of damage to patients are sound, the study linked above contains disinformation. It described the second of the four victims (Sophia Mirza) as having refused to eat and drink and refused medical care. That's refuted in this ME Association link http://www.meassociation.org.uk/?p=3765 as follows:
The following information was supplied by Mrs Criona Wilson, mother of Sophia Mirza, on 24 January 2011:
“The 2nd person, a woman aged 32, (Sophia Mirza) was reported to have refused to eat and drink. She was supposed to have refused to see a doctor.” Both of these statements are incorrect.
“The doctors had treated Sophia, who had severe ME, as being mentally ill, despite the fact that The World Health Organisation states that it is a physical disease. They forcibly sectioned her in a mental hospital. Having been released from there by a tribunal, her doctor removed her from that practice. The doctor in the second practice told me that ME was a mental illness and that she let patients ‘get on with it’. Sophia was terrified of calling on that doctor, as previously it had been made clear to her that she could, once again, be ‘sectioned’. Because of her severe symptoms she was unable to eat or drink, save for a minute amount. After she died the doctor refused to visit to confirm Sophia’s death. Apparently they too had removed Sophia from their practice, four months previously and without our knowledge. There was no help for Sophia.
“Sophia had to suffer in unbearable agony and die alone. To infer that it was Sophia’s ‘free choice’ is not true. Being frightened of the doctor and being unable to eat or drink are totally different from refusing to see the doctor and refusing to eat.”
Críona Wilson (Sophia Mirza’s mother) www.sophiaandme.org.uk "