In spite of these observations, Dr. Silverman cautioned that knowledge about the infectious nature of XMRV is still emerging. "We need to let science do its work. Any causal link to human disease remains to be established."

R. Michael Hendry, DSC, from the CDC in Atlanta, Georgia, followed Dr. Silverman's presentation. He told the panel that, in direct and complete contrast to Dr. Silverman's experience, the CDC was unable to find any evidence of infection with XMRV in their population of CFS patients by any means, including using Western blot or ultrasensitive PCR assays.

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Opinion: Dr Neil Abbot

Indeed, new patients, rather alarmingly, find two black holes awaiting them. The first is lack of credibility. The enduring stigma of “yuppie flu” and confusion with general tiredness means the public perception of ME/CFS is poor. Patients’ families can, therefore, be unsympathetic, as can doctors. Indeed, studies show that roughly half of GPs don’t believe the condition actually exists.



This is in spite of official and authoritative confirmation that the condition is genuine. The World Health Organisation classifies post-viral ME/CFS as a neurological illness. NICE states that symptoms can be just as disabling as multiple sclerosis, congestive heart failure and other chronic conditions.


The second black hole relates to treatment. Since the underlying causes of the illness remain unresolved and no treatment exists, prescriptions are given for particular symptoms, such as chronic pain or sleep problems.This can cause patients to become disillusioned, and many tell me they have not seen a GP for many years, preferring to struggle on alone rather than face what they see as a lack of understanding.


The enduring stigma of “yuppie flu” and confusion with general tiredness means the public perception of ME/CFS is poor.

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It is an established fact that the MRC has a secret file on ME that contains records and correspondence since at least 1988, which, co-incidentally, is about the time that Simon Wessely began to deny the existence of ME. The file is held in the UK Government National Archives at Kew (formerly known as the Public Record Office) and was understood to be closed until 2023, but this closed period has been extended until 2071, at the end of which most people currently suffering from ME will be conveniently dead. http://www.nationalarchives.gov.uk/catalogue/displaycataloguedetails.asp?CATID=-5475665&CATLN=7&Highlight=&FullDetails=True&j=1

As one puzzled ME sufferer recently noted: “why on earth have a 73 year embargo on these documents on an illness where a load of neurotic people, mostly women, wrongly think they are physically ill?‛ (http://health.groups.yahoo.com/group/MEActionUK/ 14th October 2009).


The MRC’s secret files on ME/CFS are closed (ie. unavailable to the public) for an unusually lengthy period of 83 years. The standard closure period is 30 years but, as in the case of these files on ME/CFS, the standard closure period may be extended.

The 30-year rule usually applies to documents that are exempt from release under a Freedom of Information Act (FOIA) request and include, for example, documents concerning the formulation of government policy, documents related to defence, to national security, to the economy, and documents that are considered very confidential.

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With cases of people with ME being made worse from this business the recent Norwegian film by Paal Winsents (“Make Me Well”) illustrates the danger of people with no medical training attempting to treat a neurological illness such as ME. A telling quote from a LP practitioner in that film says it all -
“…. It does not matter how it started. Sometimes people had a bacterial infection, sometimes people had a viral infection. It does not matter how it started. The Lightning Process works equally well”.

Such uninformed, non-clinical and dangerous statements being used by people promoting businesses without any medical training, at a time when the need for more funding for biomedical research into ME and the evidence to support that funding requirement is overwhelming, is symptomatic of the problems on a non-strategic, non-biomedical approach to diagnosing and treating people with ME. Meanwhile ME patients and their families have to witness this absurd waste of money

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One of the most misconceived treatments recommended by the medical profession is graded exercise therapy, yet 79% of the participants experience deterioration as a result. It stands to reason that with such limited energy to expend, using too much on exercise leaves woefully little, if any, energy for tasks of survival such as fixing meals, eating, paying bills, and bathing.

Another failed treatment was cognitive behavior therapy, yet this is also widely recommended despite the scientific knowledge that chronic fatigue syndrome is a serious neurological disorder which can not simply be "thought" away.

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Tidsskriftet. no

Trim.no skriver som følger:

Utmattelsen kan komme og sitte i både hode og kropp. Lidelsens opphav og virkning, kan være at pasienten ikke tåler aktivitet og belastning. Passivitet og nærmest handlingslammelse kan bli resultatet.

Det å bli satt ut av spill i den grad at man ikke kan jobbe, ikke trene eller ha gjøremål og aktiviteter å oppholde seg med, fører raskt pasienten inn i en lidelse. Man blir fanget i en virkelighet der man er tvunget stillesittende, passiv og overlatt til sine egne tanker. Kjedsomhet, det å være lei, føle seg tom, nedfor, ja rett og slett ha det vondt, er som regel resultatet av den nedstengningen ME-pasienten opplever og må leve med.

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Det har internasjonalt vært stilt spørsmål ved om personer med ME-diagnose burde være blodgivere, grunnet mulig fare for å spre et kronisk virus.

Helseministeren ble i april 2010 kontaktet fra European ME Alliance, der de anbefalte at man i blodbanker i Norge ikke skulle ta imot blod fra pasienter med ME-diagnose.

Helsedirektoratet har hatt saken til vurdering og vedlagt følger svaret. I overensstemmelse med European Blood Alliance, Summary Report from the Conferance Call of 26 April 2010, vil vi ikke endre kriteriene for blodgiverutvelgelse i Norge. Men personer som ikke føler seg friske skal uansett, i følge dagens regler, ikke gi blod.

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Få også med deg Rutt sitt innlegg: Klassekampen 17.07.10: ME og blodsmitte

Et innlegg som forteller hvordan mange syke har det. Jeg kunne ikke sagt det bedre selv - Marias metode treffer spikeren rett på hodet.

Sterk? Jeg føler meg veldig svak, kroppen makter ikke det den klarte før. Likevel -når du sier det, på mange måter tror jeg at jeg er sterkere i dag enn det jeg var før, når jeg var frisk. Jeg tåler dårlige dager, jeg tåler netter uten søvn. Jeg tåler ubeskrivelige smerter. Verdens beste skuespiller er jeg likevel blitt også.

Et vakkert, korrekt og gripende innlegg.

Les Styrkedråper fra Ground Zero

Et flott og langt innlegg om LP.

Prelude: XMRV’s status seems more up in the air than ever. Yes, a number of negative studies have been published but every study has had its problems. With the Alter paper unpublished and questions about the CDC study arising just as quickly as it was published, the only thing that seems to be clear, amazingly enough, after almost nine months, is that there is still no consensus on XMRV.

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