My impression is that the Scandinavian study is much more convincing. The UK study I find quite hard to interpret, since about as many people as got narcolepsy in the study would have been expected to get narcolepsy that year anyway. As they say, there did not seem to be an indication of more narcolepsy that year. Perhaps the mere fact that the study seemed to give a second positive signal made the government feel they could not expect to defend a legal case on the basis of no evidence. My memory of the scandinavian study was that it was pretty convincing as it stood. Nevertheless, I am still unclear whether or not vaccination does more than bring the onset forward a bit in people who will get the disease anyway. Interesting though.
Dr. Edwards, this is an addendum to the information stated above in your statement and is intended as information for the ME community.
Most patients on here meet the CCC definition for ME/CFS. We all know what unrefreshing/unrestorative sleep is and the daytime sleepiness or exhaustion yet at night the insomnia and sleep cycle disruptions etc.
In other words the immune system was killing cells that produce hypocretin. Hypocretins (orexins) were discovered by two groups of researchers almost simultaneously, hence the two names "hypocretins" and "orexins". The first group called them "hypocretin-1" and "hypocretin-2" after discovering that the molecules were found only in the hypothalamus and had some weak resemblance with the gut hormone secretin. Only 10,000-20,000 cells in the entire human brain (out of many billions) secrete these specific hypocretin molecules. Following specific influenza flu infections, the immune system confuses a portion of the flu virus with hypocretin related proteins, destroying the 70,000 neurons in the brain that produce hypocretin.
https://en.wikipedia.org/wiki/Orexin
HLA stands for " Human Leukocyte Antigens". HLA antigens are molecules produced by the HLA genes. HLA molecules are expressed on the surface of white blood cells to coordinate the immune response. DR and DQ are two different types of HLA molecules. HLA genes are very important systems to keep the immune system in check. The HLA molecules are very particular in that different individuals generally carry different HLA "subtypes" (for example DR1, DR2, subtypes of HLA-DR; DQ1, DQB1*0602, subtypes of HLA-DQ). The fact HLA molecules are slightly different from one individual to another makes our immune system slightly different from each other. The immune system uses HLAs to differentiate between “self” cells and foreign cells (and attacks those presented as foreign),
and most autoimmune diseases are associated with variants of HLA. In recent studies, more than 90 percent of sleep disorder patients were shown to carry one such variant.
https://med.stanford.edu/news_releases/2009/may/narcolepsy.html
The team found that a specific variation of a gene belonging to T cells—specialized immune cells that play a role in all immune responses—was present in narcolepsy.
Furthermore, some Northern Europe countries used a particular flu vaccination against the H1N1 2009 strain called Pandemrix which triggered a sleep disorder in some children (1/16,000 vaccinations in Finland, a 5-13 fold increase risk).
http://www.nbcnews.com/id/50742731/ns/health-cold_and_flu/
Following specific influenza flu infections, the immune system confuses a portion of the flu virus with hypocretin related proteins, destroying the 70,000 neurons in the brain that produce hypocretin.
Can there only be a partial depletion? research is out on this.
HLA-DR; DQ1, DQB1*0602, subtypes of HLA-DQ
Genetic predisposition can cause narcolespy or depletion in hypocretins
Please Note: All narcolepsy patients have a genetic mutation in HLA-DR DQB1*0602 but all people who have this genetic composition do not acquire narcolepsy via vaccination or its adjuvant
The fact HLA molecules are slightly different from one individual to another makes our immune system slightly different from each other. The immune system uses HLAs to differentiate between “self” cells and foreign cells (and attacks those presented as foreign), and most autoimmune diseases are associated with variants of HLA
Hypocretin Hcrt-1 Hcrt-2 OX-1 Ox-2
1. Autoimmune Disease
2. Complete reversal of circadian rythyms. Sleepiness during the day, wakefulness during the night
3. Tachycardia arrhythmia
4. Orexin is also essential in physiological responses to stress, panic-anxiety syndrome
5. Modulation of breathing and autonomic function
6. Regulation of sympathetic activity, including effects on blood pressure and thermoregulation.
7. Neurocognitive issue, bain fog, short term memory lost,speech language centers
8. Energy homeostasis
9. Metabolic rate and locomotive activity
For Further Research Check:
The autoimmune basis of narcolepsy.
Narcolepsy and H1N1 vaccination: a link?
Respiration and autonomic regulation and orexin
Cerebrospinal Fluid Melanin-Concentrating Hormone (MCH) and Hypocretin-1 (HCRT-1, Orexin-A) in Alzheimer’s Disease
Incidence of narcolepsy in Norwegian children and adolescents after vaccination against H1N1 influenza A.
Control of sleep and wakefulness in health and disease.
A patient with both narcolepsy and multiple sclerosis in association with Pandemrix vaccination.
Narcolepsy with cataplexy is caused by a selective loss of hypocretin-producing neurons, but symptomatic narcolepsy can also result from hypothalamic and brainstem lesions caused by multiple sclerosis (MS).
We report a previously healthy man who developed clinical and laboratory verified narcolepsy without having any indication of hypothalamic lesions and MS after vaccination against the influenza H1N1 with Pandemrix. HLA typing showed both DRB1*15:01, associated with MS and DQB1*06:02, associated with narcolepsy. The genetic susceptibility in this patient makes it tempting to speculate upon an immune-mediated mechanism and a common etiology for both diseases in this patient.
Genetic and immunologic aspects of sleep and sleep disorders.
Central Control of Circadian Phase in Arousal-Promoting Neurons
Cells of the dorsomedial/lateral hypothalamus (DMH/LH) that produce hypocretin (HCRT) promote arousal in part by activation of cells of the locus coeruleus (LC) which express tyrosine hydroxylase (TH). The suprachiasmatic nucleus (SCN) drives endogenous daily rhythms, including those of sleep and wakefulness.
Federal US Court rules Hepatitis B vaccine caused Chronic Fatigue Syndrome
Check with a sleep medicine doctor for this condition or for sleep apnea and other associated sleep disorders. You may not have ME/CFS. Unfortunately, the only way to determine is through genetic testing for the specific gene or test result in the CFS.
If you feel that you came down with narcolepsy after receiving a vaccination, you have three years from the date of the vacination to file a claim with the U.S.Federal Court of Claims!
This could only relate to a subset of ME/CFS patients but it is intriguing that if antibodies in the H1N1 vaccine can wipe out the hypocretin in those patients with a genetic predisposition, could the production of the antibodies for those who catch the flu wipe out hypocretins as well for those who have a genetic predispostion. The genetic predispostion is passed down through generations. The other question is what prevented those that have the defective gene from not getting narcolepsy when exposed to the H1N1 flu?
Eco
Disclaimer: The above statements no way implies an Anti-Vax platform but stated scientific inquiry into the facts. I can tell the patient community right here and now that you will receive the disdain of the scientific community by any associating with Wakefield or the Anti-Vax community. You will lose the support of the scientific community. We have enough issues to deal with without adding more.