Min datter kommer ofte inn i senga vår om natta...stille som en mus sniker hun seg oppi og legger seg det nærmeste hun kan inntil en av oss.

Og da mener jeg virkelig nærme - nese til nese og gjerne med hender og bein slengende rundt.

Jeg er utrolig glad i mine barn, og det er rart hvordan man glemmer seg selv i slike situasjoner.

Ikke får jeg sove, ikke får jeg rørt meg, det gjør vondt over alt, men likevel klarer jeg ikke å ta henne vekk...hun gir meg en følelse i magen som er ubeskrivelig.

Det fins ikke noe bedre i denne verden enn å vite at barnet ditt er glad i deg og trygg i din favn.

Mine barn gir meg mye problemer med helsa, men er også samtidig de som gir mest smertelindring.

Source: InvestInME

"Providing a voice for those severely affected with Myalgic Encephalomyelitis.

The name 'Lost Voices’ refers both to the fact that people who are severely ill with ME are generally not in a position to make themselves heard, and also to the way that the prejudiced denial of ME - as an ‘aberrant belief’ rather than a devastating physical illness – has meant that often others are incapable of actually hearing and seeing what is being said and shown - our voices drop into a void.

Art has the power to move people, and combined with documentation 'Lost Voices’ brings the situation more vividly to life.

'Lost Voices’ is primarily written by people affected by severe ME- whether as sufferers, carers or families - those very severely affected – house-bound or bed-bound - are represented.

The book is a high-quality, A4 landscape size with a laminated card cover with pictures, mostly in colour.

We have also incorporated a section of informative material on ME written by experts such Mrs Annette Whittemore (of the Whittemore Peterson Institute), Dr Leonard Jason, Dr John Chia and Dr Vance Spence, and also contributions from other charities.

Please use the order form to order Lost Voices: • £8 for UK customers • £9 for European customers • £11 for outside Europe "

Bloggen Solskygger har skrevet et innlegg om sorg som absolutt burde leses.

Marianne skriver i sin blogg at hun har god erfaring med LP og jeg unner henne det veldig. Selv har jeg fått beskjed av min nevrolog at jeg er for syke til å gjøre noe som helst av rehabilitering eller LP.

Ikke det at jeg har tenkt å ta LP, men vi snakket jo litt om det og da sa han at LP ikke er lagt opp for ME syke i det hele tatt...du skal være ganske frisk for å klare 3 dagers intensivt kurs.

Jeg har i kveld sett Mamma Mia og beklager folkens, men det var jo ikke sååå fin da, og om ikke det er nok så har jeg heller ikke blitt tante enda.

Min søster hadde termin 28, og hun har etter det jordmor sier en lang latensperiode...oki, det betyr altså at jeg må sove dårlig nok en natt.

Vel, hvis sant skal sies, så er det ikke hennes skyld. Jeg har hatt en veldig lang periode nå med innsomningsproblemer og det irriterer meg egentlig ganske mye. Jeg har vondt over alt, uvell og utmattet, men jeg klarer altså ikke å sove.....for så plutselig å sove nærmere 20 timer i strekk.

Men det er vel bare en del av min dårlige periode det, slik som alle andre rare perioder...men klok på ME blir jeg ikke.

• On the lack of funding given to legitimate M.E. research, Dr Byron Hyde M.D. writes: Without heed, we are sitting on the edge of a cliff, waiting for disaster. For many sufferers of M.E. that disaster is already here, and few are listening. The Clinical and Scientific Basis of ME p. 115

• Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. The CDC definition is not a disease process. It is (a) a partial mix of infectious mononucleosis /glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance. Dr. Byron Hyde MD

• Recently an M.E. patient's spine has been examined in the UK and the inflammatory nature was also discovered. Myalgic Encephalitis is a diffuse inflammatory injury of the capillaries at the level of the basement membrane of the brain. It makes no sense to rename the horse and call it Myalgic Encephalopathy. All brain pathologies involving brain tissue are encephalopathies. Let us stop fussing around and get back to the real problem and that is investigating the patients. Dr Byron Hyde MD

• Fatigue is a totally indefinable concept. Fatigue is impossible to measure or quantify. Fatigue is so non-specific that it can be a common element in any acute or chronic disease and many psychiatric diseases. Worse, it redirects the medical and public attention away from the obvious Central Nervous System changes in these patients. Much worse, it makes fun of a serious illness. It has turned out to be a damning indictment to all M.E. patients. Dr. Byron Hyde MD

• Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. The CDC 1988 definition of CFS describes a non-existing chimera based upon inexperienced individuals who lack any historical knowledge of this disease process. Any disease process that has major criteria, of excluding all other disease processes, is simply not a disease at all; it doesn't exist. M.E. and CFS should be separated as definitions. They are not the same. Dr. Byron Hyde MD

• All definitions which wear the 'f' word (ie. fatigue) in their name are not M.E. nor neurological. They are definitions of fatigue conditions. And when these definitions were written it was not neurological M.E. which they were attempting to define. The Committee for Justice and Recognition of Myalgic Encephalomyelitis

• The "Fatigue" definitions still in use, outrageously distort the true prevalence of the illness (ME) by up to 100 times. Dr Elizabeth Dowsett

• Now, do [ME] patients prefer to stand up or lie down? Of course, they prefer to lie down. Do you know why? "Do you know what your cardiac output does when you stand up? It drops 30%. In all humans, without exception. When [disabled ME patients] stand up, [they're] on the edge of organ failure due to low cardiac output." Dr Paul Cheney

• "It is ironic that in this day of specialists, the generalists have been the only group of physicans able to recognise the spectrum of symptoms in CFIDS as a specific syndrome. But in our era of technology, it is rare for specialists to listen to generalists."Dr David Bell MD

VG skriver i dag om helseminister Bjarne Håkon Hanssen som etter å ha vært i USA ønsker at du som pasient lettere skal kunne bruke nettet for å snakke med legen din.

I sin egen blogg på VG Nett ønsker han nå innspill fra deg som nettbruker til hvordan internett kan brukes mer aktivt i helsevesenet.

Jeg er helt enig med Hanssen at vi trenger en slik tjeneste. I dag tilbyr mitt legesenter at jeg kan bestille, avbestille timer, samt fornye resepter på sms. Men om jeg samtidig kunne stille min lege ett enkelt spørsmål over internett eller mail, hadde vært supert.

Noen ganger er det et ork å reise til legen og man lar da være selv om det ikke alltid er så smart.

Les mer her.

PubMed: "Differential heat shock protein responses to strenuous standardized exercise in chronic fatigue syndrome patients and matched healthy controls"

Conclusion: These preliminary findings suggest an abnormal or defective adaptive response to oxidative stress in CFS, and raise the possibility that HSP profiling may provide a more objective biologic marker for this illness

Må her si at jeg egentlig ikke skjønner så mye, men du kan jo sjekke denne linken å se om du skjønner noe mer.

Min søster har termin i dag 28. november og hun har hatt vondt i magen noen dager (akkurat slik jeg hadde det når jeg skulle føde.)

Siden mannen hennes er i utlandet, skal jeg være med som støtte under fødeselen, noe som gjør at jeg går og venter like mye som henne. Vi vet allerede at det blir en liten gutt, og navnet blir Thomas. Pappaen er fra Gambia så det blir en liten mørk nydelig baby.

Men som sagt, jeg blir gal, dersom ikke den ungen kommer snart.. :-)

Jeg har kjøpt billetter til Il Divo

"Stemningsfull og særegen konsert med Il Divo, søndag 15. mars 2009 kl. 19.30" i Oslo Spektrum.

Jeg gleder meg som en unge!

"Fibromyalgia has been recognized by the WHO as a disease since 1992, as mentioned in the list ICO-10, M-79-7, even though it is still questioned by a number of medical professionals and some health authorities. Fibromyalgia is an invisible condition which is characterized by chronic pain and many symptoms, like morning myo-acampsia (morning stiffness), sleep disorder, a general tiredness, and fatigability of muscles. In Europe, 14 million people are affected!The reality of this situation, which affects all the European countries, is that the right of people affected by a chronic disease to have a good quality of life is being ignored. It is therefore called on the medical community, national and European policy makers: To fight against the skepticism around this disease To improve the quality of patients' lives To put in place an individual and interdisciplinary support programmes which allows the patient to stay economically and socially independent, and further avert any form of isolation To ensure in-depth training of this subject in the mandatory courses of medical experts and medical professionals To support and assist awareness programmes that will facilitate early diagnosis and early treatment, as well as access to care at any time. To allocate the adequate aid for scientific research against this pathology To put in place an EU programme on the exchange of best practices on Fibromyalgia With this petition, I am signing for a European Union in which the rights of 14 million people affected by Fibromyalgia are recognized.

AN INVISIBLE CHRONICAL PAIN IS STILL A PAIN SIGN NOW "

Marlene ble frisk ved bruk av en papayakur i samarbeid med en klinikk i Gøteborg.

Les mer her.

Marlene i magasinet "Sydhav på nettet" kan du lese om her.

Les om Papaya her.

Bestille papaya her.

"By compiling this list, we hope to make people more fully aware of the seriousness of CFIDS/ME. Medical communities, media and governments understand neither how debilitating this illness is nor how those with it suffer. "

Se listen her.

NOU 1999: 13 Vedlegg 8 Helse og sykdom - er kvinnen lik mannen? "Cortison og non-steriode antiinflammatoriske midler har ikke vist effekt på FS (Fibromyalgi syndromet) (Goldenberg 1993a, Simms 1994). Regelmessig bruk av smertestillende eller muskelavslappende medikamenter frarådes på bakgrunn av deres begrensede virketid i forhold til syndromets kronisitet og faren for tilvenning"

Dette er en gammel artikkel fra 1998, men jeg legger den inn likevel.

"Låg dos av hydrokortison kan vara en framgångsrik behandling mot kroniskt trötthetssyndrom (CFS/Chronic Fatigue Syndrome). Men biverkningarna är för stora för att patienter skall kunna genomgå behandling"

Les mer her og her.

If you have anything you want to tell me and my readers, please feel free to contact me.

I welcome any contribution!

Since so much about ME/CFS is unknown, the causes of the condition are even more a mystery. Currently there are a few competing ideas, with interactions among these factors under evaluation:

• Infection: ME/CFS bears some remarkable similarities to other infections, especially mononucleosis. Testing people for Epstein-Barr (EBV), herpesvirus, enterovirus, mycobacterium, rubella, retrovirus, Candida (yeast) have all proved inconclusive. Many sufferers of ME/CFS can relate a story of having an infection or flu-like illness before becoming ill with ME/CFS, but this is not necessarily true with all sufferers.
• Immune System: Some researchers believe that ME/CFS is an autoimmune disease similar to lupus, but this has also proven inconclusive. The immune system is affected in many people with ME/CFS as a decrease in immune function; and a propensity to allergic symptoms is also very common among sufferers.
• Hormonal Imbalance: The most common hormonal problem in ME/CFS sufferers is disruption of the hypothalamic-pituitary-adrenal axis. This hormonal system is responsible for the fight or flight response, typically experienced as anxiety and nervousness. Physical or emotional stressors can cause a dysregulation of this hormonal system, which can lead to further stress and anxiety, a sort of vicious cycle. Constant stress and anxiety can also reduce the immune system function.
• Hypotension: Many people with ME/CFS have hypotension (low blood pressure). Scientists are puzzled by this low blood pressure and suggest that it may be the result of problems with the nervous system. Hypotension leads to fatigue and tiredness.
• Nutritional Deficiency: Many people with ME/CFS have nutritional deficiencies, but it is difficult to determine if this is the cause or a result of the disease. Typically, ME/CFS sufferers are low in B-vitamins, magnesium, vitamin D, and many other nutrients.
• Mitochondrial Dysfunction: Recent research suggests some factor interfering with the highly complex mechanism of energy production at the cellular level.
• Central Sensitivity: It is suggested that symptoms of ME/CFS and often-overlapping conditions such as fibromyalgia are manifestations of central nervous system sensitization – “an exaggerated response of the central nervous system [spinal cord and brain] to stimuli.
• Predisposing Genetic Factors: As suggested by the ongoing gene-expression research, differences in symptoms experienced and severity may correspond with a number of genomic ME/CFS subtypes.

More than likely, the cause of ME/CFS is the result of a combination of factors, where one factor can affect the other. For example, stress can reduce the effectiveness of the immune system. With a lowered immune system, infection is more likely, and having a chronic infection can lead to more stress. There are many systems in the body that interrelate in similar ways.

Prohealth

Her er noen forslag:

• Arbeidsstol med fotstøtte og hjul
• Arbeidsstol
• Dagslyslampe - Terapilampe
• Dusjstol eller dusjkrakk.
• Toalettstøtte eller toalettforhøyer
• Personlig hygiene diverse Kroppsvasker, Hårvaskebørste, Hårvaskekar for seng, mm
• Elektrisk hvilestol
• "Sittestokk"
• Rullestol
• Scooter
• Kjøreskinner/rampe
• Hjertebrett
• Trykkavlastende madrass
• Glidelaken
• Svingpute til bilsete
• Ørepropper
• Lystette gardiner

Mer info finner du på hjelpemiddeldatabasen.

Medlemmene av EMEA er enige om følgende prinsipper:

• Medlemmer av den europeiske ME-alliansen støtter prinsippene som er nedfelt i Canada-kriteriene for diagnostisering og behandling av ME/CFS fra 2003.

• Medlemmer av den europeiske ME-alliansen støtter prinsippene i den pedriatiske definisjonen fra Dr. Leonard Jason et al. fra 2006.

• Medlemmer av den europeiske ME-alliansen arbeider for synet at ME (myalgisk encefalomyelitt) er en nevrologisk sykdom i Verdens Helseorganisasjons (WHO) klassifikasjonssystem.

• Medlemmer av den europeiske ME-alliansen forstår nødvendigheten av å bruke det sammensatte navnet ME/CFS på det nåværende tidspunktet for å lette referanse/standardisering.

• Medlemmer av den europeiske ME-alliansen støtter biomedisinsk forskning for å etablere undergrupper av ME/CFS som vil fore til behandling og helbredelse av denne sykdommen.

• Den europeiske ME-alliansen har som mål å utarbeide og fremme et felles sett av dokumentasjon, på alle språk, som Alliansen kan bruke I tillegg til lokal informasjon.

"Since 2007 the Celestial Qi Gong Centro has held public courses using Wai Qi Liao Fa Medicine on M.E. / C.F.S. registered patients. The clients have been aged from seven to sixty seven. Pressure on the Atlas vertebra and tightness in the muscle and bone structure was the same diagnosis. 95% of the people who attended these courses are now free of their M.E. / C.F.S. symptoms. The centre is situated in Patalavaca, Gran Canaria, Spain."

Celestial Qi Gong Centro skriver følgende om hva de mener er årsaken til M.E.

"THE CAUSE OF MYALGIC ENCEPHALOPATHY \ CHRONIC FATIGUE SYNDROME.

The Idea is explained in Western Terms (ref. WT) and the diagnoses in Traditional Chinese Medicine (ref. TCM).

WTA pressure / tightness affects the Central Nervous System, the Medulla Oblongata, the Occipital Lobe of the Brain, the Cerebellum and the Cranial Nerves. The volume of blood is reduced in the Brain and the Eardrums are squeezed.

TCMThe High Energy System is disrupted at its origin of the Sea of Qi. Every organ in the body is working hard to keep the person alive. The Yin and Yang of the body are disturbed and scattered.

For mer info, sjekk her.

I tilfelle du ikke allerede vet det:

Me-foreningen holder åpent hus på ME-kontoret (Kr. Augustsgt. 19 Oslo) fra kl 15.00 - 19.00. Åpent hus er 2 ganger i måneden.

Til fredag skal jeg på middag med styret i sameiet jeg bor i. Det er koselig, men jeg gruer meg likevel.

Bare tanken på at man må finne frem klær, dusje, føne håret, sminke seg...for så å sitte pent i flere timer og late som alt er greit.

Som sagt, det er veldig koselig, men det er ikke gøy når man plutselig etter minutter merker at hjernen ikke har vært tilstede.....når de plutselig spør; hva syns du, Hege?

Det er flaut, og vanskelig å forklare at du ikke mente å være frekk.

Men, men, det ordner seg nok. Jeg trenger å komme ut litt, så det er bare å bite tennene sammen.

"If you can’t change your fate, change your attitude."

Jeg er en beskjeden jente som ikke liker store forsamlinger og småsnakk. Jeg har alltid hatt problemer med å like utseendet mitt, men kompensert med å jobbe ekstra hardt på skolen og i arbeidslivet.

Etter at jeg fikk ME....kan jeg ikke lenger kompensere for det med hardt arbeid og bloggen er derfor blitt en venn. Jeg liker ikke å prate om meg selv, følelser og tanker, hele mitt liv har jeg gått ifra problemer, om det så bare var til rommet mitt, ut på byen eller i mine egne tanker.

Følelser har alltid blitt holdt inne. Med bloggen kan jeg skrive om følelsene, samtidig som jeg på en måte føler at de fortsatt er "holdt inne"...da jeg egentlig ikke prater med noen. Er det noen kjente som leser dette, og bemerker det, da vil jeg nok fort få samtalen over på noe annet. Vil jeg prate, må det være på mine premisser, jeg må ha kontrollen.

Når noen spør meg hvordan det går med meg, sier jeg alltid at det går bra...vel, noen ganger sier jeg greit, men da går det virkelig ikke bra..hehe Nok en gang fordi jeg ikke vil snakke om meg og mitt...fordi jeg innerst inne føler at de egentlig ikke er interessert, at jeg ikke interesserer.

Etter sykdommen har jeg også hatt mye behov for hjelp, men spør jeg, NEI. Skulle bare mangle..hvis de ikke tilbyr, så kommer jeg iallfall ikke krypende. Jeg skal klare meg selv uansett. Meg gjør jeg det? Klarer jeg meg selv?

Jeg går på piller som skal "liksom" hjelpe meg å sove, men de er også beroligende. Da jeg nå i lenger periode ikke har "følt" noe som helst....hverken glede eller sorg, har jeg vurdert å slutte med de. Men jeg tørr ikke. Jeg tørr rett og slett ikke. Så lei som det jeg er nå, lei meg, lei sykdommen, lei støy og mas...hva skjer når jeg ikke lenger har piller som "nuller meg ut"? Bryter jeg sammen?

Nå høres jeg sikkert veldig deperimert ut, men jeg er ikke det....spør psykologen. NAV tvang meg nemlig til å ta 10 timer der før jeg fikk innvilget tidsb. uføre.

Jeg er bare lei og i villrede....jeg vil ha tilbake meg selv, jeg vil ha tilbake Hege.

Det er begrenset med informasjon på nettet og det ser ut til at jeg nå nærmer meg den grensen.

Så da blir det mest nyheter og mine egne tanker fra nå av.

Men hva skal jeg skrive...jeg tenker mye,ja, men når jeg skal skrive det ned blir hjernen min blank og konsentrasjonen lik null. Før jeg ble syk hadde jeg kontroll på alt, var strukturert og elsket å planlegge, nå klarer jeg ikke å planlegge lenger enn dagen i dag.

Det å være syk, være utmattet og ha vondt, er nesten ingen ting lenger i forhold til det at jeg har mistet meg selv, ikke blir trodd, og det at jeg rett og slett ikke lenger stoler på meg selv. Jeg vet ikke lenger hvem jeg er.

VG blant mange andre, skriver om Frøydis som trakk seg før Top Model finalen:

"Hodet og hjertet ville så gjerne, men kroppen sa nei, forteller den ME-syke modellspiren. "

Jeg er mektig imponert av henne og hun var min store favoritt, men jeg syns vel likevel at hun kanskje burde trukket seg før. Med ME burde hun visst at dette ikke var noe for henne i en mye tidligere fase og kanskje åpnet for at noen andre kunne ta hennes plass.

Men gjort er gjort og jeg ønsker henne alt godt videre både som modell og med sykdommen.

Er du slik som meg eller orker du å ta opp "fighten" med barna dine?

Etter at jeg ble ME syk føler jeg at jeg mer og mer sier ja til mine barn for å slippe unna maset.

Ikke på alle ting selvsagt, men på små ting som: ...kan jeg få en is, kan jeg se på tv, kan jeg sove i senga di....jeg skal ha på meg dette!....osv osv.

Dette har jo selvsagt barna mine lagt merke til, og utnytter det jo selvsagt til det fulleste. Noen ganger tar jeg fighten, men har jeg en dårlig ME dag......vel, ja så vinner de lett.

Dette går jo også utover pappa'en da han blir den "strenge", uten egentlig å være det.....

Hva kan jeg gjøre?

Följ min blogg med bloglovin

Det har nå gått to år siden kampanjen for et bedre navn for M.E / CFS ble startet.

For status/og info om nyåret les "A New Year, A New Name"

For informasjon om hvordan dette startet les "The Right Name, the Right Strategy, the Right Time"

Din side skriver i dag: "En ny undersøkelse om pasienters bruk av nettet viser at man finner det lærerikt å legge ut informasjon om egen helse, og lese om andres, på nettet i form av blogger og videosnutter på YouTube. " Les artikkelen her.

Selv skriver jeg en blogg for å dele informasjon jeg selv finner på nettet, få ut litt frustrasjon og kanskje få noen venner som forstår hva jeg snakker om. Dessverre har det ikke blitt skrevet så mye om " egne erfaringer og følelser", da min hjerne og konsentrasjon ikke fungerer som normalt akkurat nå. Men jeg syns likevel at blogging er et nyttig middel for å klare hverdagen.

Medical News today skriver som følger:

"A team of scientists have investigated a case of vaccine-associated chronic fatigue syndrome (CFS) and macrophagic myofasciitis in an individual demonstrating aluminium overload."

"The team, led by Dr Chris Exley, of the Birchall Centre at Keele University in Staffordshire, UK, has found a possible mechanism whereby vaccination involving aluminium-containing adjuvants could trigger the cascade of immunological events that are associated with autoimmune conditions, including chronic fatigue syndrome and macrophagic myofasciitis."

Les mer her.

• Vitamin and mineral supplements

• vitamin C

  vitamin E

  vitamin B6

  vitamin B12

  coenzyme Q10

  l-Glutamine

  magnesium

  zinc

• Acupuncture
• Homoeopathy
• Naturopathy
• Chiropractic
• Tai chi
• Meditation
• Physical therapies

• Massage

  Colonic irrigation

  Cold baths

  Feldenkreis

  Aromatherapy

  Oxygen therapy

  Hydrogen peroxide

• Herbal treatments

• Echinacea

  Garlic

• Dietary restrictions

• Hypoglycaemic" diet

  Anti-candida" diet

  Low salicylate, low preservative diet

MJA

Lurer du på hva alle de forskjellige M.E. kriteriene / guidelines er?

Me-foreningen har laget en flott oversikt som du kan se her.

BBC News: Geneticists have identified a biological basis for seven different subtypes of chronic fatigue syndrome. These were linked to specific symptoms.

• Type one had the worst anxiety and depression levels, along with poor sleep and high pain levels.
• Type two was characterised by significant post-exercise fatigue and joint and muscle pains, while type three was the mildest form of the disease.
• The research identified type four as linked to moderate levels of body pain and sleep problems, with type five having stomach complaints and the most marked muscle weakness.
• Type six was specifically connected to fatigue, and type seven had the most severe symptoms including pain, swollen glands and headaches.

Type four and type six were the most common forms of the condition

Les mer her.

"Dette selvhypnosekurset er laget slik at du kan lære selvhypnose i X steg. Ved å trene på oppgavene og å jobbe bevisst med deg selv vil du lære selvhypnose og hvordan du kan bruke selvhypnose til egen utvikling. " Sjekk det ut her.

En alternativ behanling til M.E.? Flere sier det hjelper.

"Ayurveda betyr kunnskap om livet. Det er et helhetlig altomfattende helsesystem - verdens eldste - som er best bevart i India."

Les mer her.

"Lots of exciting ME/CFS diagnosis breakthroughs are happening at the Applied Research Facility at the University of Nevada Campus!

Judy Mikovits, the research director, says in her interview with KTVN Channel 2 News that they are within one year of having a blood test that will diagnose ME/CFS.

She also says that the Nevada facility has isolated and identified a new virus that may cause ME/CFS."

Reporteren sier videre derimot noe som må være feil...jeg har aldri noensinne hør det før: “what we know about chronic fatigue syndrome is those who have it have a huge rate of shingles. We know the disease often ends up as cancer.” HÆÆÆ?

Du kan se videoen på linken under. Tast på Major Medical Breakthroughs linken nederst på siden.

Chronic Fatigue Syndrome Video

"The MAD-1 is the worlds first GENUINE and complete replacement for traditional acupuncture treatments"

"The MAD-1 is a unique microelectronic device that provides effective relief from the symptoms of Chronic Fatigue Syndrome and ME" Les mer her.

HOW TO START EACH DAY WITH A POSITIVE OUTLOOK

1. Open a new file in your computer.
2. Name it M.E.".
3. Send it to the Recycle Bin.
4. Empty the Recycle Bin.
5. Your PC will ask you: 'Do you really want to get rid of ' M.E.?'
6. Firmly Click 'Yes'.'
7. Feel better ....?

Fikk du ikke sett på programmet som gikk på NRK Puls så har Invest in ME fått tillatelse til å legge den ut på siden sin.

Videoen finner du her.

Journalen for våren 2008 og for ME konferansen er klar og kan hentes her: Våren 2008 Me konferansen 2008 "The Journal of IiME is a blend of research, science, facts, politics and real-life experiences relating to ME/CFS."

Sub Grouping & Treatments for ME/CFS DVD REQUEST FORM

DVD'en fra konferansen inneholder følgende:

"The full presentations from the 2008 conference plus plenary and interview sessions with some of the speakers

• Dr Leonard Jason
• Dr Jonathan Kerr
• Dr Martin Lerner
• Dr Julia Newton
• Dr John Chia
• Dr Irving Spurr
• Dr Jean Monro
• Dr Judy Mikovits
• Professor Malcolm Hooper

"The European ME Alliance is a grouping of European organisations who are involved in supporting patients suffering from myalgic encephalomyelitis (ME or ME/CFS) and are campaigning for funding for biomedical research to provide treatments and cures for ME. The European ME Alliance (EMEA) aims to:

• Establish correct recognition of myalgic encephalomyelitis as an organic illness requiring biomedical research to treat and cure
• Establish correct diagnosis of patients
• Establish specialised biomedical centres for education/treatment/cures Myalgic Encephalomyelitis is defined by the World Health Organisation as a neurological illness (code WHO-ICD-10-G93.3).

The founding members of the European ME Alliance are :

• Belgium ME-Patientenvereniging
• Denmark ME-NetDK
• Ireland Irish ME Trust
• Germany Fatigatio e.V.
• Norway Norges ME-forening
• Sweden Riksföreningen för ME-patienter
• UK Invest in ME"

Din side skriver i dag om hva det å le kan gjøre for oss.

En god latter forlenger livet sies det....det er iallfall riktig at man føler seg mye bedre når man virkelig ler og har det bra.

En av tingene latter gjør for deg er blant annet å redusere smerte og påvirke immunforsvaret...i flg artikkelen.

" No duty is more urgent than that of returning thanks."

Jeg har surfet nettet litt i det siste og kommer til stadighet over alternative M.E. behandlinger.

Jeg sier behandlinger, men jeg tviler vel egentlig på at det har noe for seg. Uansett velger jeg å dele det med dere, da jeg mener alle burde prøve ut det de selv har tro på...ikke hva andre mener de burde prøve eller ikke prøve.

"Self Hypnosis For ME-CFS Available In CD Or MP3 Format

• Guaranteed to minimize the symptoms of CFS-ME
• All you do, to obtain relief from chronic fatigue, is listen
• ‘Help With CFS-ME’ – A self-hypnosis recording
• Have more comfort and rest and energy!
• Find ways to reduce fatigue by listening
• Use your subconscious mind to triumph over your illness?

Les mer her.

Irini har i dag skrevet et flott innlegg om det å være frisk, men fortsatt uføretrygdet. Les det her.

Glama kommenterer Irinis innlegg her. Dette er innlegg som er vel verdt å få med seg.

Enda en alternativ M.E. behandling? Hmmm, tror nok ikke det, men du kan jo sjekke det ut hvis du vil.

Les mer her.

“ME & CFS are real not psychological and ME-Relief is a real treatment.”

"SAFE - ME-Relief is a combination of 3 Amino Acids which are naturally available from food and classed as food supplements, they have been available for many years. Primarily used by athletes to improve stamina, increase energy levels, reduce recovery time after training, increase strength and enhance the body’s natural immune system."

Det har vært mye snakk om NICE guidelines i det siste og lurer du på hva det er så kan du lese om det på NICE sin hjemmeside.

"NICE is the independent organisation responsible for providing national guidance on the promotion of good health and the prevention and treatment of ill health"

Andre guidelines er :

• London Criteria A set of criteria apparently still used by the Medical Research Council in assisting their determination of funding for ME-related projects (all psychiatric). The criticisms of these criteria include the fact that they have never been published and therefore cannot be used objectively to select patients for a study. The MRC still find it necessary to use these criteria in conducting the PACE trials to study psychiatric paradigms for treatment of ME sufferers - something which most of the people in the ME community who have studied this find negligent.
• Oxford Criteria A set of criteria created by and for psychiatrists - these criteria are far less rigorous and may include patients with fatigue as their only symptom. As such it allows far too many possibilities of inclusion of non-ME patients and serves no useful purpose, other than to aid the assertions of biased psychiatric groups who see ME as a somatoform disorder. They therefore serve no real useful or scientific purpose.
• The RCPH Guidelines These are oriented toward the psychiatric/psychologist viewpoint with lots of references to papers by persons prominent in the debate promoting the viewpoint of ME being a psychological illness. The sad fact is that paediatricians in this country are guided by these guidelines
• South Australian Criteria Similar to the Canadian guidelines
• Canadian Criteria Proper, up-to-date clinical guidelines which can also be used as a base for research criteria. Findings from the study by Leonard A. Jason PhD (Comparing the Fukuda et al. Criteria and the Canadian Case Definition for Chronic Fatigue Syndrome) indicated that the Canadian criteria captured many of the cardiopulmonary and neurological abnormalities, which were not currently assessed by the Fukuda criteria. The Canadian criteria also selected cases with 'less psychiatric co-morbidity, more physical functional impairment, and more fatigue/weakness, neuropsychiatric, and neurological symptoms' and individuals selected by these criteria were significantly different from psychiatric controls with CFS.

For mer informasjon om NICE - sjekk ME-foreningen sin side.

Tidlige symptomer på enkel svelgproblematikk

• Irritasjon i halsen/kløe og hoste etter inntak av mat og drikke
• Gjentatte luftveisinfeksjon
• Grøtete stemme
• Dårlig ånde, mat rester som samler seg i munnen.
• En følelse av at maten hoper seg opp i svelget.

Råd og tips ved enkel svelgproblematikk

• Unngå mat som smuler, dvs. for eksempel. Rundstykker
• Velg mat som er tilpasset din tyggeevne, slik at maten er finfordelt da den svelges.
• Ved munntørrhet er det viktig å tilføre rikelig med drikke mens du spiser.
• Ikke snakk og spis samtidig, da man som parkinson rammet ofte har problemer med å konsentrere seg om 2 ting på en gang.
• Har man problemer med at maten samles i kinnene kan det være nyttig å skylle munn og svelg etter måltidet.
• Er det inntak av væske som skaper problemer, kan et nyttig tips være å drikke alle væsker tempererte.

Det ble skrevet på Bt i august at NAFKAM skulle forske på Lightning Process, men etter det har vi ikke hørt noe mer. Artikkelen fra august kan du lese her....merk at kommentarene i artikkelen også er greie å få med seg.

"Så langt har NAFKAM samla inn 32 historier frå pasientar med ME/CFS (kronisk utmattingssyndrom). Ni av dei, alle kvinner mellom 18 og 49 år, har prøvd Lightning process. Fellesnemnaren er at dei alle har vore veldig sjuke, men raskt blitt friskare etter kurset. "

Les Alva sitt innlegg her.

"The two most common elements in the world are hydrogen and stupidity"

From Wikipedia: "Pacing, the even spreading out of athletes' strength in longer-distance track and field and swimming races, so that they don't burn themselves out "

1. Knowing Your Body To be successful at pacing, you have to pay attention to your body and know your limits. It can help to keep a journal or symptom log. Your goal is to answer these questions: How much physical activity can I handle in a day or at a time? How much mental exertion can I handle in a day or at a time? What activities impact me most? At what time of day do I have the most energy? What symptoms are "early warning signs" that I've neared my limit? Once you know these answers, you're ready to apply pacing techniques to your life
2. Short Activity Periods We're sprinters, not marathon runners. If you have a big job, don't try to plow through it for hours. Work for a short time, rest for a while, then work for another short period. The amount of time you work and rest depends on your capacity for activity. Start with shorter periods than you think you can handle, and rest for at least 15 minutes it between. See how you feel after a couple of days, then adjust times until you've found the right balance.
3. Scheduled Rest Scheduled rest periods are more than the short breaks you take between bursts of activity. Instead, it's time built in to your day when you can take a nap or get some rest. Again, the length of time is something you have to define for yourself. Laying down for half an hour may give you a nice boost, or you may need a two-hour nap. Your scheduled rest period is not the time to check e-mail, watch TV, read or make your grocery list. Your mind needs rest just like your body. Try sleeping, laying quietly, meditating or possibly taking a hot bath.
4. Routines Routines can really save you, especially if you have a lot of brain fog. I have a weekly schedule to keep me on track both in my job and with household tasks. If I stick to it, I know I won't end up needing to go shopping on the same day I pull weeds or running errands on days when I need to be home writing. The biggest barrier to routines is that our conditions are unpredictable. We rarely know when we'll have bad days or when a good day will take a turn for the worse without warning. To deal with this unpredictability, build in flexibility. I look at my average energy and under-schedule each day based on that. If I finish up and still have energy, I work ahead. If I have a few days when I can't get anything done, I catch up over the course of several days, reprioritizing to take care of the most important things first.
5. Prioritizing Priorities are crucial to pacing. I try to have a clear picture of what absolutely must get done in a day, and I focus my energy there. If less important things need to wait as a result, then that's just how it is. If you find yourself feeling as if too many things have to get done in one day, make a list and then break your list in to three parts: needs, wants and shoulds. "Needs" are top priority, have-to-get-done-right-now-or-there-will-be-consequences things. "Wants" are things that you'd really like to do IF you have the energy. "Shoulds" are things you feel like you ought to do to please someone else or because other people would do them (such as, "I should cook a big, elaborate meal on Sundays, because my mom always did.") Take care of your "needs" first, then move on to the "wants" (again, IF you have the energy). If you can't get to the "shoulds," so be it. The "shoulds" can be a big source of guilt, because by not doing them, you may upset or disappoint someone. Good communication about the limits of your illness can often help with this by adjusting other people's expectations about what you're able to do. You may need to educate people in your life about your illness.

About.com

I vår fikk jeg i oppdrag å føre dagbok, men siden jeg egentlig for det meste bare sover har vi besluttet å vente litt med det.

Men det er ikke en dårlig ide og kan være til god hjelp....tror jeg.

Ved å skrive en daglig journal over hva du har gjort, hvordan du hadde det, hvordan ting utviklet seg i løpet av dagen osv, kan man kanskje klare å finne ut hva som "trigger" deg....finne dine grenser på hva du klarer før du blir "dårligere".

Kanskje er du dårligst etter en tur på kjøpesenteret, eller kanskje du er dårligst 10 dager etter mensen. Eller kanskje du blir dårlig av noe du ikke har tenkt på i det hele tatt....

Dette gjelder jo da selvsagt for de som ikke er alt for dårlige...å føre dagbok må ikke være til last.

Nok et flott innlegg av Adrienne Dellwo på About.com

1. "If you're not up to going out, we can just get together and (talk/play cards/watch a movie)." This shows that you understand the limitations of the illness and gives the person an alternative to canceling plans.
2. "Let's do our grocery (or Christmas) shopping together. I'll pick you up." Shopping can be extremely tiring for us, and it can really help to have someone else there to help with things like loading and unloading the car, or trekking back across the store for a forgotten item on the other side
3. "How much are you up for today?" This shows that you understand energy levels can vary from day to day and can help your companion feel comfortable expressing his/her limitations.
4. "How are things going?" This is better than asking "how do you feel." It opens the door to all aspects of life, instead of just physical well being. Most days, I don't feel that great, but my life might be going really well.
5. Can I (pick you up/help with that/etc.)?" This works better than something like, "Do you need me to...." because it shows a willingness to help without implying the person is incapable or is a burden.

Nok et flott innlegg av Adrienne Dellwo på About.com

1. "You look great - you must be feeling better." We're likely getting better about concealing how we feel, not feeling better. Or it might be a single good day after a month of horrible days.
2. "Let's get you out of the house. It'll give you a boost!" If we're staying home all the time, it's likely that we're not feeling well enough to get out.
3. "Are you sure you're not just depressed?" If only it were that simple! Yes, many of us are depressed, and even if we're not the symptoms can appear similar. However, depression alone can't explain the broad range of symptoms we experience (often several dozen of them.) (Plus, depression is a very real physical illness, so the phrase "just depressed" is inappropriate anyway.)
4. "I've been really tired lately, too. I know how you feel." If you're so tired that you feel on the verge of total physical, mental and emotional collapse, you might. Otherwise, statements like that make it seem like you're trivializing an illness that's much more than being tired.
5. "If you'd (exercise more/lose weight/eat a better diet/get back to work) you'd feel better." While exercise or dietary change do help some people with these conditions, they also can make us much worse. We know our bodies best and need to research those changes for ourselves. Weight has never been shown to exacerbate symptoms of FMS or ME/CFS, and the physical and mental stress of "getting back to work" is far more likely to make us crash than recover.

Kom over en flott artikkel på About og vil gjerne dele et lite utsnitt av den med dere. Jeg vet det er nok en artikkel som beskriver "hva ME er for noe", men etter at jeg har fått flere kommentarer på bloggen min syns jeg det ganske likevel trengs. "Chronic fatigue syndrome can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.

• It's NOT psychological "burn out" or depression.
• It's NOT laziness.
• It's NOT whining or malingering.
• It IS the result of widespread dysfunction in the body and the brain that's hard to understand, difficult to treat, and, so far, impossible to cure.

Chronic fatigue syndrome is a serious, life-altering, frustrating, often misunderstood illness. What people with ME/CFS need most of all from those around them is emotional support and understanding. "

Jeg syns dette er en kjempe ide og flott utført.

De nye sidene inneholder informasjon, samt til og med en interaktiv guide inn i de ulike avdelingene.

"De nye nettsidene er fullfinansiert av Helse og Rehabilitering – via søkerorganisasjonen Norske Kvinners Sanitetsforening."

Nettsiden finner du her.

Sitter nok en natt ved pc'en fordi jeg ikke får sove.

Tanker som kommer er fra en hendelse i sommer da jeg var på ferie i utlandet....et norsk par vi tilfeldigsvis møtte spurte meg om hva jeg jobbet med...Jobbet med???? hmmm.....skal vi se...jeg har ikke jobbet på over 5 år...hmmmm....jo, sa jeg...jeg jobber i Telenor, vel vitende om at det ikke lenger var sant.

Hvorfor sa jeg det? Hvorfor fortalte jeg ikke at jeg var uføretrygdet? At jeg var syk?

Er jeg flau? Skammer jeg meg? Er det isåfall fordi jeg har ME, eller hadde jeg gjort det uansett hva årsaken var?

Det er mange spørsmål og tanker, men det værste er at jeg antakeligvis kommer til å gjøre det igjen....sukk

Professor Paul Doyon har skrevet en artikkel om at mobiltelefonen faktisk kan være årsaken for at noen har fått ME.

Les artikkelen her.

Trenger jeg å si noe mer?

"Lammet mann ble tilbudt snekkerkurs "

Les Glamas innlegg her.

Andre som har blogget om NAV..Fullt hus , Beates rasteplass og virrvarr.

By Denise Vogel

1. Imagine a life with energy and health
2. Make friends with your ME, accept it and ask yourself how you can move on with it
3. Ask what ME has given you and what have you learnt from having it.
4. Recognise the 'stopping' steps. That is when it is time to recoup the energy by relaxing and be happy that it can be recognised. When it is recognised, remember to accept it and embrace the relaxation and know that this relaxation is 'recharging your batteries'.
5. What strategies can you put in place that will enable you to do more or recharge your battery of life and happiness?
6. Remember one person's ME is not the same as another
7. Be prepared for the journey, there is no quick fix just small stepping stones which are giant achievements
8. Be happy with small journey goals - they will get better, remember from small acorns big trees grow.
9. Find someone who will support you but challenge you.
10. Listen to your body - be mindful of it and respect it.

• There is very little available data on pregnancy and ME. Research suggests about 30% for women with ME feel better during their pregnancy, 29% report a worsening of symptoms and 30% report no change in symtom severity.
• Women with ME may need more time to recuperate after birth and spend a longer time in the hospital following delivery than healthy new mothers.
• Some practitioners have observed a higher rate of miscarriages in women with ME.
• It is unclear wether ME can be passed on genetically from parent to child. However, in a recent study, the heritability rate of ME was 55% for identical twins and 19% for fraternal twins, providing evidence that genes may play a role in the development of the illness.

cfids.org

Recovery rates for ME are unclear. Improvement rates varied from 8% to 63% in a 2005 review of published studies, with a median of 40% of patients improving during follow up. However, full recovery from ME may be rare, with an average of only 5% to 10% sustaining total remission. Remember that ME affects each individual differently. Some people with ME remain homebound and others improve to the point that they can resume work and other activities, even though they continue to experience symtoms. cfids.org

De siste månedene har Espen Eckbo bare sovet fire-fem timer hver natt,skriver Dagbladet i dag.

" - Du har ikke fått mén av dette arbeidet, hva med et aldri så lite magesår? - Nei, ingenting. Men det hadde vært deilig med ME, så kunne jeg fått hvilt ut litt."

Les hele artikkelen her.

Les bloggen Glamas Weblog , og SerendipityCat

" Researchers Say People With Fibromyalgia Have Abnormalities of Blood Flow in the Brain" Les mer her.

Judicial Review in the High Court London February 2009. Siden finner du her.

"BREAKING NEWS WE HAVE THE DATES!! 11th and 12th February 2009 "

Nok en gang et flott innlegg av Glabladet.no Les innelgget her. Jeg trenger iallfall råd for å klare å holde meg fokusert i ME tåka!

"Because of the unclear origin of the disease, the use of BEMER 3000 Therapy can be regarded as an effective symptom-related therapy. The complex effective mechanisms of BEMER 3000 therapy have been scientifically demonstrated in many clinical-medical studies. Aside from symptomatic treatment, they could form an important basis for causative treatment:"

Les mer om det her.

Naturterapeuten.com skal tilby denne tjenesten

Jeg har alltid vasket leiligheten når jeg har hatt en god dag, men fikk klar beskjed fra legen min at hadde man råd burde man prioritere vaskehjelp. Gode dager burde man bruke sammen med familien sin, eller andre ting man ellers ikke orker - som man har lyst til....

Jeg er helt enig og har skaffet meg vaskehjelp, og anbefaler det til alle!

Som regel har jeg ingen problemer med å sove, da jeg til tider ikke gjør annet. Men jeg har også opplevd å være våken i 24 timer fordi jeg ikke klarer å sovne uansett hvor utmattet jeg er. ------------------------------------- Sleep Is Vital For Good Health - In CFS and FM by Dr. Sarah Myhill, MD

First, Get the Physical Essentials in Place

• A regular pre-bedtime routine. Your 'alarm' should go off at 9:00 p.m., at which point you drop all activity and move into your bedtime routine.
• A busy day with the right balance of mental and physical activity.
• Not having a bed fellow who snores.
• Small carbohydrate snack just before bedtime (such as nuts or seeds) helps prevent nocturnal hypoglycemia, which often manifests with vivid dreams or sweating.
• Perhaps restrict fluids in the evening if your night is disturbed by the need to pee.
• No stimulants such as caffeine or adrenaline inducing TV, arguments, phone calls, family matters or whatever before bed time! Caffeine has a long half life, so none after 4pm
• Dark room - the slightest chink of light landing on your skin will disturb your own production of melatonin (the body's natural sleep hormone). Have thick curtains or blackouts to keep the bedroom dark. This is particularly important for children! Do not switch the light on or clock watch should you wake.
• A source of fresh, preferably cold, air.
• A warm comfortable bed. We have been brainwashed into believing a hard bed is good for you, and so many people end up with sleepless nights on an uncomfortable bed. It is the shape of the bed that is important. It should be shaped to fit you approximately and then very soft to distribute your weight evenly and avoid pressure points. TempurR mattresses can be helpful (if expensive), as are water beds.

av Cathrine Morgan

"There is no cure for Chronic Fatigue Syndrome (CFS and FM), but many doctors believe that it is helpful to eat healthy. I believe this is true for several reasons; one - many people with CFS and FM are sensitive to chemicals and additives that are found in processed foods, two - refined sugars such as fructose are not good for anyone (except maybe a diabetic in insulin shock), three - good nutrition is found to benefit everyone, sick or not, it’s just better for you."

Medical News Today skriver de med ME har godt av å spise litt mørk sjokolade hver eneste dag.

Les artikkelen her.

Ok...da fikk jeg iallfall en unnskylding for å spise sjokolade, men spørs om det hjelper så mye..

"Tai Chi, or T'ai Chi Ch'uan, is also called "moving meditation." It's considered a gentle form of exercise and a way to relax your body and reduce stress. While it's a Chinese practice that dates back to the 13th century or earlier, it's become very common in the U.S. in the last decade "

Les mer her.

About.com

NEWSBRIEF: A study published in The Journal of Nuclear Medicine provides evidence of abnormal brain activity in fibromyalgia that is visible on a special kind of scan. Les mer her. About.com

"The first national public awareness campaign on chronic fatigue syndrome was launched June 7, 2006, and will continue into 2009. This multifaceted $6 million campaign is designed to educate both the general public and health care professionals about CFS" "As part of the national CFS public awareness campaign launched in 2006, the CFS photo exhibit called “The Faces of Chronic Fatigue Syndrome” has been traveling around the United States to public venues and medical conferences." In 2008 the photo exhibit has traveled to Philadelphia, Portland, Tampa, San Antonio, Phoenix, Baltimore, Tacoma, Oklahoma City and Macon. Here are a few examples of the 2008 news coverage generated in conjunction with the exhibit:

• When the photo exhibit was at 30th Street Station in Philadelphia, Pennsylvania, earlier this year, the Association’s board chairman Jennie Spotila was interviewed along with physician Andre Garabedian for CBS3 news. View this video. ¨
• The photo exhibit’s stop in Phoenix, Arizona, in March led to an in-depth six-minute story on CFS in May when Dr. Scott Rigden and CFS patient Allan Youngberg were interviewed on “Horizon,” a talk show on Arizona’s KAET-TV. View this video.
• When the exhibit was in San Antonio, Texas, the San Antonio Express News ran a feature story about CFS on the front page of its Lifestyle section. CFIDS Association president Kim McCleary and CFS patients Terry Westerman and Nitzie Whittam were interviewed for this article, which helped educate readers about the seriousness of the illness. View this story.

Les mer på CFIDS.org

Det har vært mye skrevet om Lightning Process i det siste og jeg ville derfor dele denne artikkelen fra Bt.no med dere selv om den ikke er helt ny. Det er også flere kommentarer under artikkelen som er greie å få med seg. "ME-pasienten Anette Gilje vart så sjuk etter eit Lightning process-kurs at legen sende henne rett på rehabilitering" Les den her. Og så har vi selvsagt en vidunder historie her.

"Ingar Holst har fått spesialistbehandling mot myalgisk encephalomyelitt i Shanghai. Han erfarer at det kinesiske helsevesenet poliklinisk kan holde i sjakk alvorlige, kroniske lidelser som i Norge og andre vestlige land henvises til oppbevaring på sykehjem. Her reflekterer han over hvorfor det norske helsevesenet forstår så lite av og er så dårlige på å forebygge endel kroniske og diffuse helseplager. " Videre mener Holst at: "det er en sammenheng mellom utskriving av SSRI-preparater (Selective Serotonine Reuptake Inhibitors) og utbredelsen av ME." Les artikkelen her. Artikkel om samme sak fra VG kan du lese her.

Jeg var hos nevrologen min i dag og vi snakket blant annet om LP. For seks måneder siden var han helt imot det, men nå tror han på LP.....merk dog ikke som noe hokus pokus, vidunderkur eller behandling, men rett og slett som et mestringskurs på lik linje med andre mestringskurs. Men du må fortsatt være i ganske bra stand, evt ha en bedre periode for å gjennomgå noe slikt og det er heller ikke garantert at "mestringsteknikken" fungerer for deg.....sier han. Han mente jeg var for dårlig, men man vet jo ikke hva som skjer fremover. I første omgang har han sendt inn søknad til Sølvskottberget rehabilitering, som visst nok skal være kjempe bra. Den som lever ....får se...jeg har dog fortsatt mine tvil.

" Ingen er så døve som de som ikke vil høre"

"Sidsel Kreyberg is a Norwegian doctor who has specialised in pathology and is head of the ME Registry in Norway. Dr Kreyberg has conducted a small survey of those caring for the severely ill ME patients. Her article provides a good insight into the difficulties in caring for this group of ME patients in institutions. The normal rules of rehabilitation do not apply to ME patients and it is important to take the lead from patients. Patient experiences are very important and should be listened to. " Invest in ME newletter Les den her.

Kritisk til vaksinen: Patolog Sidsel Elisabeth Kreyberg ved Universitetet i Oslo mener at alle vaksiner, også influensavaksinen kan utløse kronisk tretthetssyndrom

Reverse Therapy skal lære oss å syke til å forstå hvorfor sypmtomer oppstår pga en overbelastet hypotalamus-kjertel. Denne kjertelen er visst å finne i hjernen og ses på som kroppens "hovedkontroll".

"Reverse Therapy™ is the radical new treatment for M.E., Chronic Fatigue Syndrome, Fibromyalgia and many other named conditions. Please look around this website and find out how Reverse Therapy™ can help you or someone close to you."

Behandlingen består av samtaler mellom den syke og en terapaut - ikke noe annet. ME, CFS og FM pasienter skal visst ha godt av dette....hmmm Jeg må bare spørre: "Har vi hørt det før? Er ikke dette egentlig det samme som LP?" Les mer om RT her. og her.

ME/CFS: FYSISKE TEGN PÅ SYKDOM av Byron Hyde MD, Anil Jain MD. Dette er en fin artikkel, men merk dog at de her setter ME og CFS på lik linje. Den er hentet fra Me foreningen sin side. Les den her.

Jeg har kommet over et bra, men utrolig langt informasjons hefte på internett. Det er på engelsk og forklarer litt av forskjellene mellom ME og CFS. Men det er mange forskjellige slike forklaring ute, så husk å lese den med en klype salt. Heftet finner du her.

"God helse er mer enn rikdom. "

The term BENIGN MYALGIC ENCEPHALOMYELITIS was first introduced in the UK in 1956 by a former Chief Medical Officer (Sir Donald Acheson). The word "benign" was used because it was thought at the time that the disorder was not fatal (as poliomyelitis could be, with which it had some similarity), but it was quickly realised by clinicians that ME was not a "benign" condition, as it has such high morbidity (ie. such a lot of suffering and ill-health), so by 1988 clinicians had stopped using the word "benign" and referred to it as ME, the first to do so being Dr Ramsay. However, the ICD still uses the term "benign" in its classification.

• MYO relates to muscle
• MYOSITIS = inflammation of muscle
• MYALGIA = pain in muscles (pain that is called "myalgic")'
• MYOPATHY = any disease or disorder of muscle
• MYEL (or MYELO) relates to the spinal cord (the main nerve inthe body)
• MYELITIS = inflammation of the spinal cord (NB. Not to be confused with the other meaning of myelitis, which = inflammation of the bone marrow, as in osteomyelitis)
• MYELIN SHEATH = a layer of fatty white material that surrounds and insulates nerve fibres
• DEMYELINATION = the loss of this protective insulation round nerve fibres (as seen in multiple sclerosis and sometimes also in ME)
• ENCEPHALON = the brain
• ENCEPHALO = relating to the brain
• "ITIS" on the end of a word = inflammation (eg. hepatitis = inflammation of the liver)
• SO---- ENCEPHALOMYELITIS = inflammation of the brain and spinal cord

Professor Malcom Hooper

Jeg beklager at ikke alle mine innlegg er på norsk, men jeg orker ikke og har heller ikke tillatelse til å oversette de utenlandske til norsk. Jeg beklager det og håper du ikke syns det blir for rotete, da artiklene er greie å få med seg.

Sitat fra leserbrev til The Young ME Sufferers Trust fra Jane Colby 12.mai 2008

"It was a bad day for children when ME got called by the barmy name 'Chronic fatigue syndrome'. Some of our children can't speak or swallow and have to be tube fed. That is so not 'fatigue'. That is devastation."

Selsius plass har mange fantastiske innlegg om ME og her kommer enda en link til en artikkel dere burde få med dere. "Et nytt virus er identifisert og kan forårsake ME/CFS hos en undergruppe sier Judy Mikovits ved Whittemore and Peterson institutt. (WPI) De har også utviklet en diagnosetest for ME/CFS som snart vil bli tilgjengelig." Les innlegget her.

VG skriver i dag" at mange fibromyalgi pasienter opplever å ikke bli trodd av legene, selv om forskning slår fast at sykdommen ikke er innbilt". Les artikkelen her. Jeg har selv hatt fibromyalgi i mange år og kan love at det er riktig...man blir ikke trodd. De siste årene har jeg også hatt ME diagnose og da jeg snakket med min nevrolog om "uføre" så fortalte han meg at fibromyalgi diagnosen kunne ødelegge for meg. Fibromyalgi blir derfor utelukket i alle henvendelser til NAV, ME er det eneste som blir brukt, selv om ME også er lite forstått. Det er utrolig men sant. Les bloggen Hjorten uttaler seg sitt innlegg om denne saken her.