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Tired of ME

Mitt liv med og informasjon om myalgisk encephalopati

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“Gene Responsible for Chronic Fatigue Syndrome Identified”
MCS America article “Gene Responsible for Chronic Fatigue Syndrome Identified” highlights important research at University of Utah “In recent news, Alan Light, a research professor in the anesthesiology department [at the University of Utah, Salt Lake City], dispels the myth that chronic fatigue syndrome (CFS) is mere laziness…. Light explains that there is a gene that produces a protein which tells the muscles when they are too tired to keep working,” begins an article in the October issue of MCS America’s free e-mail newsletter (page 21). Reference: To read an abstract/summary of the original research report by Alan Light, et al., published July 30 in the Journal of Pain, and link to an explanation of the study by CFIDS Association Scientific Director Suzanne Vernon,PhD, click here. Source: Prohealth

Memory and attention problems in children
Conclusions: Children with CFS/ME appear to experience problems with attention, which may have adverse implications for verbal memory. These cognitive problems may explain some of the educational difficulties associated with CFS. Les mer / read more.

Muskelfibrene hos ME-syke
Funksjonell karakterisering av muskelfibre fra pasienter med CFS Pietrangelo T, Toniolo L, Paoli A, Fulle S, Puglielli C, Fanò G, and Reggiani C International journal of immunopathology and pharmacology 22(2):427-36, 2009 – Kronisk utmattelsessyndrom (CFS) er en invalidiserende tilstand karakterisert ved uforklart kronisk tretthet som svekker normale aktiviteter. Selv om immunologiske og psykologiske aspekter er til stede, så er symptomer relatert til skjelettlmuskler, som stølhet, trettbarhet og økt akkumulering av laktat, fremtredende hos CFS-pasienter. I denne studien ble fenotyper av samme biopsi analysert for å å bestemme i) fiber-type andel med myosin isoformer som fiber type molekylær markør og gel electrophoresis som et redskap for å skille og kvantifisere myosin isoformer, og ii) Sammentrekningsegenskaper ved manuelt dissekerte enkle muskelfibre, gjort kjemisk gjennomtrengelige og kalsium-aktivert. Resultatene viste at fiber-type andelen var signifikant endret i CSF prøver, som viste et skifte fra sakte til raskt muskelkontraksjon. Tverrsnitt, kraft, maksimum forkortingshastighet og kalsium-sensitivitet var ikke signifikant endret i prøvene. Dette betyr at sammentrekningsegenskapene til muskelfibrene var bevart, men deres andel ble endret, med en økning i de mer tretthetsskapende, energiskforbrukende raske fibertypene. Disse resutlatene støtter det syn at muskelvev er direkte involvert i patogenesen ved CFS, og det kan bidra til den økte trettbarheten som er typisk for skjelettmusklene hos CFS-pasienter. PS: I diskusjonen av resultatene blir det antydet at resultatene ikke skyldes inaktivitet eller manglende bruk blant annet fordi størrelsen ikke er endret. Forfatterne spekulerer også på om økt forbruk av ATP ved sammentrekning kan være en faktor ved utmattelse. Oversatt: Eirran

M.E. - Nutrition
Nutrition One theory holds that a nutritional deficiency may be a contributing factor causing CFS, so it's important to maintain a healthy diet. Diet can be used beneficially to strengthen the ailing immune system of people suffering from chronic fatigue. It is now recognized that a well-balanced diet should be part of the treatment for all chronic illnesses. Chronic fatigue syndrome is not primarily a dietary disorder. But as in other debilitating illnesses, people suffering from CFS fail to consume a nutritious diet. This leads to dietary related complications. The following items are important if you are suffering from CFS: Avoid sugar and sweets. Sweet foods cause dramatic fluctuations in blood-glucose levels, and unstable blood-sugar levels cause fatigue. If sweetener is used at all, choose a natural sweetener like honey, which contains the vitamins needed to digest it. Frequent, small meals help keep blood- sugar levels stable. Diet is crucial to building the immune system and conquering CFS. Avoid foods low in nutrients and high in sugar and fat. Instead, eat high-nutrient, high-protein, complex carbohydrate foods such as vegetables, grains, beans, fish, and poultry.Eliminate all allergic foods. If you are highly allergic, the rotate the non-allergenic foods. Drink eight to ten glasses of pure water and vegetable or fruit juices daily to flush out toxins.Eat raw fruits and vegetables, whole grains and unroasted nuts and seeds. Raw fruits and vegetables and whole grains provide fiber. Fiber alleviates constipation, a factor in fatigue. Apples, oatmeal and oat bran are particularly beneficial because the fiber they contain is water-soluble and binds and eliminates toxins. Unrefined, cold-pressed nut and seed oils and cold-water fish provide essential fatty acids which help boost the immune system. Flaxseed oil is an essential fatty acid that could help people with CFS. Take up to two teaspoons a day, along with a magnesium supplement of 400 milligrams. Flaxseed oil is available in liquid and capsule form.Sea greens, such as spirulina and blue-green algae, contain many trace minerals that are missing in the normal diet. Sixty percent of people suffering from chronic fatigue syndrome also suffer from candidiasis. Avoid all forms of sugar, including milk products (lactose), fruit, caffeine, alcohol, and refined carbohydrates (white flour, white rice). Eat plain, unsweetened yogurt or drink kefir daily to provide friendly bacteria which inhibit the growth of candida yeast. Take a good basic multivitamin/mineral supplement with adequate amounts of trace minerals. Garlic and nutritional yeast are effective against intestinal parasites, another factor relating to chronic fatigue syndrome. Vitamins, Minerals, and Supplements The following supplements are important for CFS patients: Beta carotene-100,000 I.U. daily Vitamin C - 2,000 mg, three times daily Vitamin E-400 to 800 I. U. daily Vitamin B-complex-50 to 100 mg of all B vitamins daily (take in the evening) High-potency multivitamin/mineral combination Zinc picolinate-30 mg daily Magnesium glycinate-1000 mg daily Calcium citrate or lactate- 1000 mg daily with vitamin D, 400 units Manganese-15 mg daily Omega 3 EFAs (EPA/DHA)-300 mg/300 mg three times daily Pantothenic acid-250 mg two times daily Acetyl-L-carnitine-l,000 mg two times daily for three months, then 250 to 500 mg daily Coenzyme Q-10-100 to 200 mg daily for three months (an oil/resin-bound form for maximum absorption) L-Lysine-1,000 mg, three times daily for three months, then 1,000 mg dailyMalic acid-600 to 1,000 mg daily Alpha lipoic acid-100 mg three to four times dailyL-glutathione-50 mg two times daily Adrenal extract-one or two tablets three times daily Thymus gland extract-one or two tablets three times daily Vitamin B-l2 injections, 2,000 mcg with folic acid, 5 mg one or two times per week Gamma globulin injections weekly for several months Some naturopathic physicians treat CFS with an intravenous solution containing pantothenic acid, vitamin C, and hydrochloric acid (HCl). Many people report remarkable improvement with this treatment. Source:

Advanced techniques for overcoming CFS, FMS and GWS
The Root Cause of CFS/FMS Is Typically "Bad" Molecules CFS/FMS is typically caused by "bad" molecules that bind to good molecules inside the body and subsequently inhibit their function. Sounds simple? It is very simple conceptually. However, there are many bad and many good molecules, and tracking them is hard work. This is not for the faint of heart. We define "bad molecule" rather loosely as a molecule that can take an internal biochemical system down. The good molecules typically involve: * enzymes (chemical that converts one chemical to another chemical) * neurotransmitters (sends a message from one nerve to another) * neurotransmitter receptors (the area of a nerve that receives message) * hormones (chemical used to control a processes within the body) * cofactors (ingredient used to make a chemical) * cells in the immune system (when these go down; bacteria, virus, and fungi go up) * cells and parts of cells such as the cell membrane and mitochondria The bad molecules are typically: * heavy metals such as lead, mercury, cadmium, nickel, silver, tin and barium * natural and synthetic chemicals and poisons (e.g. carbon monoxide, drugs) * pesticides (e.g. DDT) * natural toxins such as H2S (i.e. hydrogen sulfide, that results when fungi and bad bacteria in gut ferment sugar). * toxins resulting from natural waste products produced by the body that are not filtered out properly (e.g. free radicals that cause "oxidation" of "good" molecules). Les mer / read more.

Ten Discoveries about the biology of CFS
Chronic fatigue syndrome is not a form of depression, and many patients with CFS have no diagnosable psychiatric disorder. As with most chronic illnesses, some CFS patients become depressed because of the impact of the illness on their lives, but most studies find that the majority haven’t experienced depressionbefore the onset of illness.There’s a state of chronic, low-grade immune activation in CFS. There is evidence of activated T cells, activation of genes reflecting immune activation and increased levels of immune system chemicals called cytokines.There’s substantial evidence of poorly functioning natural killer (NK) cells—white blood cells important in fighting viral infections. Studies differ as to whether there may be increased numbers of NK cells in CFS patients.Abnormalities in the white matter of the brain have been found in CFS patients using magnetic resonance imaging (MRI) scans. Typically, these are small (fraction of an inch) areas just below the cerebral cortex, the outermost area of the brain hemispheres. Differences in gray matter volume are also being observed.Abnormalities in brain metabolism, as indicated by single photon emission computed tomography (SPECT) and positron emission tomography (PET), have been discovered. Other research suggests there’s something wrong with energy metabolism and the oxidative electron transport chain in the mitochondria of CFS patients.CFS patients experience abnormalities in multiple neuroendocrine systems in the brain, particularly depression of the hypothalamic-pituitary-adrenal (HPA) axis, but also the hypothalamic-prolactin axis and hypothamalmic-growth hormone axis.Cognitive impairment is common in CFS patients. The most frequently documented abnormalities are difficulty with information processing, memory and/or attention.Abnormalities of the autonomic nervous system have been found by numerous independent researchers. These include a failure of the body to maintain blood pressure after a person stands up, abnormal responses of the heart rate to standing and unusual pooling of blood in the veins of the legs. Some studies also find low levels of blood volume.CFS patients have disordered expression of genes that are important in energy metabolism. Energy comes from certain natural chemicals that are processed by enzymes inside each cell. These enzymes are controlled by specific genes. Other genomic research is revealing involvement of genes connected to HPA axis activity, the sympathetic nervous system and immune function.There’s evidence of more frequent latent active infection with various herpesviruses and enteroviruses. The herpesviruses include Epstein Barr, HHV-6 and cytomegalovirus. Other infectious agents, like bacterium that cause Lyme disease, Ross River virus and Q fever, can also trigger CFS. Source: Anthony Komaroff, MD

Talk presented by Dr. Chitra Bhakta
Summary of talk presented by Dr. Chitra Bhakta on “Adrenal Fatigue, Correction of Genetic Methylation Pathways, and Protocol for Decreasing Inflammation in Lyme, Autism and Chronic Illness” by Rich Van Konynenburg She emphasized that the human body is complex, and it is necessary to address several aspects of these illnesses in order to treat it successfully. She pointed out the importance of eating organic food, locally grown and seasonal. She recommended eating 5 or 6 small meals per day, like a diabetic diet. For food allergies, she recommends a rotation diet, switching foods each week. She recommended taking Juice Plus to get the nutrients from vegetables and fruits. For omega-3 fatty acids, she recommended EPA-Select. She emphasized that it’s important to raise the EPA intake, but not DHA. Les more / read more: Prohealth

Ord med på veien
"Nobody can go back and start a new beginning, but anyone can start today and make a new ending." - Maria Robinson

Times Letter: NICE guidelines
"The assertion "many doctors believe ME has a psychological rather than a physical cause" contradicts the Royal College of GPs, which reclassified ME as a physical illness in August 2008. It also opposed the view of Lord Darzi, the Dept of Health, the WHO and biomedical research. The statement may be rephrased to say a minotrity of psychiatrists think ME is psychological. In fact, many doctors are hoping that NICE guidelines will be amended to reflect current understanding of ME as physcial in original and phsysiological in its development, so as to provide a more practical model for general practice. Dr Matthew Harris Exeter, Devon"

Ny veileder om M.E. fra NFF
Kvalitetsutvalget i NNF har laget retningslinjer for nevrologers utredning av kronisk utmattelsessyndrom. Du finner den her. Retningslinjene til NAV finner du her.

Hysj - ikke si det
Det er midt på natta ( 03:12 for å være eksakt), men jeg får ikke sove. Jeg er vanvittig sliten etter å ha vært ute i går...og nei, jeg er ikke fyllsjuk *ler* Jeg eier ikke styrke i musklene, synet er tåkete og jeg føler meg uvell. Jeg skal nå gå å prøve å legge meg igjen med smerestillende og ørepropper, med min snorkende mann ( spør du meg, burde M.E. pasienters partner få gratis snorkeoperasjon :-D). Melatoninen er allerede tatt, men har tydeligvis ingen funksjon i dag. Men ikke fortell noen at jeg skrev dette innlegget midt på natta...for du skjønner, det er jo ikke rart jeg er så syk og sliten når jeg ikke sover.... *spøk* Dette er mitt tantebarn Thomas. Han flyttet dessverre til India med sine foreldre for en uke siden. Min søster jobber for UNICEF og de blir borte iallfall et år. Jeg savner de allerede.


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