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Tag Archives: chronic fatigue syndrome

WPIs analyse av de såkalte replikeringsstudiene

X Rx har lagt ut en tabell som viser WPIs analyse av de store negative studiene som har kalt seg replikeringsstudier. Dette viser klart at Lombardi et al foreløpig IKKE har blitt replikert:

Les mer hos X Rx HER

 

Anbefalt lesing fra Real Clear Science: «Kronisk utmattelsessyndrom er misforstått»

Hentet fra Real Clear Science:

«What’s in a name? A great deal, if you suffer from awful, long-term diseases that have no cure.

Chronic fatigue syndrome (CFS) is a name that infuriates patients, who number perhaps 1 million to 4 million in the United States and 17 million worldwide. It also frustrates the small but dedicated cadre of doctors and researchers who have made the disease and its casualties their concern.»

Les hele artikkelen HER

Les den på norsk med Google Translater HER

Potensielle medisiner for ME og XMRV-retrovirus

Hentet fra Canada.com:

«»You can imagine a number of combination therapies that could be quite effective and could at least be used in clinical trials right away,» Mikovits said in a telephone interview.

She said AIDS drugs such as non-nucleoside reverse transcriptase inhibitors and integrase inhibitors as well as nonsteroidal anti-inflammatory drugs and cancer-fighting proteasome inhibitors could be tested as potential treatments for CFS.

Takeda Pharmaceutical Co Ltd. makes a cancer drug called Velcade that is a proteasome inhibitor, although there are no reports that it has been tested against XMRV.

CFS impairs the immune system and causes incapacitating fatigue, according to the U.S. Centers for Disease Control and Prevention. Sufferers can also experience memory loss, problems with concentration, joint and muscle pain, headaches, tender lymph nodes and sore throats.

Symptoms last at least six months and can be as disabling as multiple sclerosis or rheumatoid arthritis, the CDC said.

But Mikovits said there is currently no treatment for CFS aside from cognitive behavioral therapy to help patients cope with the disorder’s crippling effects.»

Les hele artikkelen HER

Medikamenter som kan hemme XMRV

Hentet fra Virology blog:

«Xenotropic murine leukemia virus related virus (XMRV) has been implicated in prostate cancer and chronic fatigue syndrome (CFS). Because XMRV is a retrovirus, it might be susceptible to antiviral drugs that are licensed for the treatment of AIDS.»

Les innlegget HER

Les på norsk med Google Translater HER

Dr. Nancy Klimas: XMRV ME/CFS & YOU

European Society for ME har laget en veldig god oversikt over Dr. Nancy Klimas forelesning om XMRV. Jeg legger ut denne oversikten selv om jeg har linket til foredraget tidligere.

Segment 1: Background, overlapping conditions, viruses
http://cfsknowledgecenter.ning.com/video/xmrv-lecture-segment-1

Segment 2: Viruses & CFS/ME, WPI & XMRV
http://cfsknowledgecenter.ning.com/video/xmrv-lecture-segment-2

Segment 3: XMRV, NK & T cells, latent & retro viruses
http://cfsknowledgecenter.ning.com/video/xmrv-lecture-segment-3

Segment 4: Retro viruses, Biomarker
http://cfsknowledgecenter.ning.com/video/xmrv-lecture-segment-4

Segment 5: Antibodies, what we don’t know, cancer (video missing)

Segment 6: Virus life cycle, immune modulation drugs
http://cfsknowledgecenter.ning.com/video/xmrv-lecture-segment-6

Segment 7: What’s next in research
http://cfsknowledgecenter.ning.com/video/xmrv-lecture-segment-7

Segment 8: Research funding & advocacy
http://cfsknowledgecenter.ning.com/video/xmrv-lecture-segment-8

Segment 9: Testing for XMRV, Q&A: Antibodies
http://cfsknowledgecenter.ning.com/video/xmrv-lecture-segment-9

Segment 10: Q&A: Drug timeline, U of M clinic & studies
http://cfsknowledgecenter.ning.com/video/xmrv-lecture-segment-10

Segment 11: Q&A: Morton Fund, Taking care of yourself
http://cfsknowledgecenter.ning.com/video/xmrv-lecture-segment-11

Rapport fra møte hvor 75 ledende forskere diskuterte XMRV

Cleveland.com skriver i dag en artikkel som omtaler møte hvor 75 ledende forskere møttes  i Cleveland for å diskutere XMRV.

«There was a lot of excitement at the meeting,» Clinic cancer biologist Robert Silverman said of the gathering that drew 75 of the top scientists from 14 institutions who are studying XMRV.

Silverman was part of a team of researchers from the Clinic, the University of Nevada at Reno and the National Cancer Institute that recently reported a link between XMRV and CFS

Les hele artikkelen her

Hvilken rolle har virus i ME

European Society for ME har lagt ut et langt stykke om hvilken rolle virus har hatt i kunnskapen om ME.

A virus is a microscopic organism that lives within the cells of another living organism.  Viruses cause disease at the most basic level, by damaging the cells of living things. By themselves, viruses are lifeless particles incapable of reproduction, but once they enter the cell of another living thing they become active organisms that can multiply hundreds of times.»

Les det her

Nytt retrovirus forårsaker ME?

WPI med Judy A. Mikowits i spissen, offentliggjør oppsiktsvekkende forskningsresultater. Les publiseringen her

For oss som ikke har medisinsk bakgrunn er denne Q&A, besvart av Mikowits oppklarende:

1) Question: XMRV – Is this a new new virus?

Answer: Yes.  prior to this paper showing XMRV is beyond a shadow of a doubt a Human infectious retrovirus, there are only two other human retroviral infections: HTLV1 and HIV 

 2) Question: Does XMRV cause CFS? 

Answer: Both HTLV1 and HIV cause neurological disease and cancer. There is no symptom of CFS that cannot be explained by understanding the biology of this retrovirus. We will very soonhave enough data to say X satisfies the same correlAtes of disease association as HIVand AIDS. The 2/3 in the paper reflects active XMRV expression at the time we did the original screen. The p value for association of CFS with X is 10 -35; Virtually impossible to have CFS without XMRV. We still cannot say cause…in fact one cannot say cause for HIV AIDS but everyone knows what that means. Science is conservative so we cannot say cause but have accumulated significant data that will within the year allow us to satisfy Hill’s criteria of causality the main point of which is every case of the disease contains the pathogen.

 3) Question: Do you have a test for the virus? 

Answer: Since the submission of the manuscript on May 6th, we have developed a sensitive and specific seroconversion assay. We can detect antibodies to the XMRV envelope in>95% of the>250 patients we have tested from around the world. We have failed to call a case wrong either way.

 4) Question: Are there effective treatment options on the horizon? 

Answer: Because we have so many FDA approved antiretrovirals particularly non nucleoside RT inhibitors and integrase inhibitors as well as non steroidal antinflammatories. We see great promise of combination therapeutic strategies very quicklyIf an individual gets the immune system modulated to control and silence the virus the one can be well .The goal is to keep the virus quiet and the homeostasis as  with the elite controllers of HIV. There are two GRE sites in the CIA acting elements of the virus. These respond to hormones and cortisol. By definition every positive patient is an AIDS patient

 5) Reliability – Question: explain how the scientists react and the kind of authorities you have on your team…CFS patients have been disappointed a million times…is this for real? 

Answer: John coffin is a member of the US National academy of Sciences. No greater authority on these viruses exists. 3 members of the US NAS reviewed this work and all are convinced of the science but need to be conservative so as not to scare the general public. They are convinced of the infection and the public health risk and our data suggest. 10 million Americans ate infected with XMRV and at a risk for CFS and cancer. For me it is crystal clear and all of the scientists who have seen these data have the same response: Absolute amazement.  The best in the world are all over it. They may not understand CFS bug they understand an entirely new human disease entity ten fold the incidence of HIV!

 Jeg anbefaler også å lese mer om dette hos:

Overaktivisert immunforsvar fører til utmattelse

Dagens VG refererer til en ny forskning av brystkreft. 30% av de som overlever dette rammes av fatigue/langvarig utmattelse. 

«30 prosent av de som overlever brystkreft, rammes av langvarig utmattelse. Gener som setter immunsystemet i alarmberedskap, kan være årsaken, viser ny studie.

En ny studie fra Radiumhospitalet viser at gener som er viktige for immunforsvaret, ofte er aktivert i blodceller hos dem som rammes av fatigue (langvarig utmattelse) etter kreftbehandlingen.

Fatigue påvirker både muligheten for å jobbe og sove, samt sosiale relasjoner og livskvaliteten til de som rammes.»

Det er jo interessant at studier som omhandler forskjellige sykdommer viser at et overaktivisert immunforsvar fører til fatigue/kronisk utmattelse.

De siste blodanalysene..

… viser at Prof. De Meirleir har hatt helt rett når han har sagt at jeg har et overaktivt immunforsvar pga forgiftningstilstanden jeg opplever i kroppen. Jeg er ikke lege eller forsker, i tillegg er jo «tåkehode» et kjent begrep for oss med denne sykdommen, slik at det har vært en stor utfordring å henge med på alt De Meirleir har snakket om under konsultasjoner. Jeg har heller ikke forutsetninger for å fullt ut forstå alle testresultatene som har strømmet på etter at pust, blod, urin, spytt, avføring osv. har blitt grundig analysert. De siste resultatene fra blodprøvene fikk jeg i posten i dag og de viser:

C4 AS er på 2248, reference range er på 20-1400 dvs. Meget høyt. Forhøyede C4 A Serum nivåer viser overaktivisert immunforsvar.

IL-8S er på 79,45, reference range er på 0-15 dvs. Meget høyt. Forhøyede verdier av IL-8S viser en overaktivering av immunforsvar ved forskjellige imflamatoriske sykdommer.

CD57 er på 43,5, referance range har en nedre grense på 60. Dvs lavt. Lave verdier viser bla en infisert mykoplasma og kan tilsi en flått-infeksjon. I mitt tilfelle en Bartonella (søster til Borelia).

RNase L er på 0,75, referanse range er på 0-0,50. Dvs høyt. Viser til De Meirleirs forskning på forhøyede RNase L verdier hos sine pasienter: http://www.mefmaction.net/Patients/Articles/Diagnosis/DrDeMeirleirsLecture/tabid/224/Default.aspx

Jeg understreker igjen at jeg ikke er lege/forsker/helsearbeider og ikke evner og fullt ut forstå hele omfanget av alle disse tekniske begrepene. Alikevel kjenner jeg at motivasjonen for behandlingen øker 🙂