This press release was issued yesterday 2010/16/04 in The Netherlands bij dutch jounalist Toine de Graaf. Here is an English translation.
Gendringen, 2010/04/16 - Researchers at UMC St. Radboud announced in February no XMRV virus has been found in the blood of Dutch chronic fatigue syndrome (ME/CFS) patients. They concealed, however, that U.S. reseachers did found traces of this retrovirus in blood samples of the same patient. This is shown in a web publication of Ortho magazine, which is put online today.
For years medical researchers have been searching for the biological cause of CFS, but always without success. Last October Americans announced a breakthrough: researchers from the Whittemore Peterson Institute (WPI) in Reno found the retrovirus XMRV in many patients with ME/CFS. The study was published in the leading scientific journal Science, after a Research period
of 2.5 years.
Researchers at UMC St. Radboud had doubts and decided to repeat the Science research, with frozen blood samples from Dutch patients from 1991-1992. The study took place very rapidly under the leadership of Nijmegen experimental virologist Dr. Frank Kuppeveld and internist Professor Dr. Jos van der Meer. But they found nothing. "Neither in the blood of 32 patients, nor in that of the 43 controls, the retrovirus was found ", the UMC St. Radboud was quoted in a press release issued at the end of last February.
Now it is obvious certain things are concealed. This week a letter has been made public by Annette Whittemore, who directs the WPI. In this letter she describes that the WPI, at the request of Frank Van Kuppeveld, has tested some blood samples from the Dutch cohort study prior to the completion of the Nijmegen study. The WPI found traces of XMRV in these samples. Whittemore says she possesses email correspondence that shows Van Kuppeveld was aware of the WPI research results before the Dutch study was published in the British Medical Journal.
The web publication of Ortho provides a reconstruction of events based on an interview with Dr. Judy Mikovits, Research Director of the WPI. The web publication coincides with the appearance ofthe April issue of Ortho, were further attention is spent on XMRV.
Further information (in Dutch):
http://www.ortho.nl/bestanden/artikelen/ortho102laatstenieuwsxmrvb.pdf
Kind regards,
ESME Team
The European Society for ME is a non-profit group, operated entirely by volunteers. You can support ESME with a donation by visiting: http://esme-eu.com/donate/category114.html.
Doctor Speedy and ME in search of medical honesty
thanks Dr Speedy
ReplyDeleteIs the UK going to end up the only country in the world paying the usual amoral 'soecialists' to deny that it has XMRV in the population?
...cont
ReplyDeleteThe view of ME Research UK is that conclusions about efficacy that can be drawn from this small group of heterogeneous trials are suggestive and tentative only. Overall, it seems that around 40 per cent of patients benefit from CBT – confirmed in a very recent clinical study, which reported that 39 per cent of patients responded to the intervention after six months – while the placebo response rates in ME/CFS intervention trials have averaged 20 per cent.
This indicates that while cognitive-behavioural approaches appear to be superior to placebo, less than a majority of patients actually benefit from them — an important concern that is not commonly addressed or verbalised. In addition, it remains entirely possible that much of the apparent treatment outcome reported in these trials relates to non-specific effects, i.e. that good-quality supportive clinical care (in the case of CBT) and self-pacing (in the case of graded exercise therapy) would produce similar results.
At the heart of this ‘fraught clinical situation’, in the words of the BMJ editorial’s authors, is the fact that there are many ME/CFS patients in the UK and Ireland – a majority – with a protracted physical illness, most commonly initiated by an infection, for whom psychological strategies are, at best, a side issue. It is for this reason that all the major ME/CFS charities believe that patients need thorough clinical assessment, accurate early diagnosis and biomedical investigation, and that cognitive-behavioural approaches – whatever their merits in themselves – are not the ‘answer’ to the biomedical enigma of ME/CFS.
References on request
Dr Vance Spence,
Chairman, ME Research UK,
Perth PH1 5PP, UK.
http://www.imt.ie/opinion/2010/04/cbt_is_not_a_cure_for_me.html
ReplyDeleteletter in Irish Medical Times:
CBT is not a cure for ME
Dear Editor,
If anything illustrated the harrowing face of severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), it was the story of the late Lynn Gilderdale in the UK. Lynn’s was not an isolated case: it is thought that 10-25 per cent of patents with this diagnosis undergo severe long-term physical illness, have a poor prognosis and receive less understanding from healthcare professionals than they have a right to expect.
A recent article (‘Defeatism undermines treatment of chronic fatigue syndrome’, IMT, 24-2-’10, www.imt.ie/clinical/infections-immunology/defeatism-undermines-treatment.html) reported on a British Medical Journal editorial by three eminent London psychiatrists who claimed that ‘an air of defeatism’ about ME/CFS obscures the fact that treatments ‘have been shown to work’ and are recommended by the National Institute for Clinical Excellence in Guideline 53.
The reality is less clear cut. The treatments referred to are cognitive behavioural therapy (CBT; designed to manage dysfunctional illness beliefs) and graded exercise therapy (used as part of a biopsychosocial programme predicated on a model of physical deconditioning). Both cognitive–behavioural approaches have a general, non-specific applicability and are used increasingly as symptom management and coping strategies in a range of conditions.
In the context of ME/CFS, cognitive-behavioural approaches are not evidence-based to a level where they can be claimed to be specific ‘treatments’ – an unsurprising observation, given that the ‘syndrome’ diagnosis delivers a heterogeneous population widely believed to contain distinct clinical sub-groups.
The systematic review underpinning NICE Guideline 53 found ten randomised clinical trials on adults, three of these negative with the remainder showing mild-to-modest positive, though non-curative, results.
Recent overviews have confirmed this; a Cochrane review found 15 studies of CBT (including controlled clinical trials) for CFS/ME and took a more cautious view of the evidence and its limitations than the BMJ editorial authors, as did a second recent review. This latter meta-analysis of 13 clinical trials (representing 1,371 patients) found a very mixed bag of studies and reported an overall effect size that was small–moderate by usual standards. Not for nothing did NICE Guideline 53 (Full Guidelines, section 6.3.8, pp 252) state that it did ‘not regard CBT or other behavioural therapies as curative or directed at the underlying disease process’.....cont