Wednesday, June 29, 2011

XMRV has created a bandwagon of biomedical research that is way, way overdue

Re:History of prejudice

Caroline Davis, Patient and former Director
Rapid Response to Editor's Choice:
Ending the stalemate over CFS/ME
Fiona Godlee
BMJ 2011;342:doi:10.1136/bmj.d3956 (Published 22 June 2011);342/jun22_3/d3956?title=Re:Re:History%20of%20prejudice

We are a community which does have a number of strong voices motivated by utter exasperation and sometimes tempers run high. It doesn't always do us a lot of good, and that's something the most aggressive of our campaigners would do well to learn. Nobody responds well to being shouted at or heckled. But there are two sides to this story and Ms Godlee apparently only sees one.

After some 30 years of absolutely no biomedical research funded by our national research body the MRC, I don't think it's unreasonable for some patients to have lost patience with the Lancet, the BMJ and the policymakers. It's decades of lost life we are talking about. Think about it. Think about not being able to point to anything you've done or achieved for over 20 years. Think about living on a pittance and being ridiculed by your own family, friends and the media simply for being ill. It's no small issue to us. We have been quiet and patient far too long.

There appears to be a 'done and dusted' assumption on the part of the medical and research establishment in the UK that this 'must be' a biopsychosocial condition. You talk about aggressive patient campaigners: well, this is the other side of the coin: Overly powerful voices in the psychiatric community who will permit no argument that this may be a biomedical problem rather than a psychiatric one, and who hold far too many positions of power in medicine, research, media gatekeeping and Government policy. The same names recur over and over again, and block any possibility of getting the other side of this coin explored.

It is this imbalance that patients are railing against, and it's for this reason patients and researchers 'cannot work together'. There is a simple solution. Drop the assumption, let both sides be heard equally (which means changing some of the names controlling the big decision- making bodies for this condition), fund research for both putative causes equally, and watch how things change.

We need those in policy, medicine and research to keep an open mind on ME and act within their sphere of influence to ensure there is a decent, accurate case criteria for our disease (don't reinvent the wheel, the CCC works well for most patients); that there is fair media coverage of all the research, including biomedical studies coming out of other countries so that a balanced view can be taken of the condition and its causes by the public, Government departments and medical practitioners, and to ensure that patients have the right not to be penalised for refusing "treatment" that we know harms us.

Ms Godlee's comment about the PACE study is typical of the current assumption that is 'making an ass out of you and ME' (excuse the pun). No patients defined under the CCC actually took part in the PACE study; nor did the stats prove that people got better (those who did achieve small improvements after all those months of treatment were generally still so ill they would have qualified to start the program over again). If PACE had worked, many of the hundreds of patients who took part would be very quick to say so and encourage others to take part. Why do you think this has not happened?

As to the Lombardi et al study that is being so heavily criticised, again, Ms Godlee sees one side of a story only. There are as many positive studies on XMRV as negative: guess which make it into the headlines? (If one looks at who advises the Science Media Panel on ME, one will immediately see the reason for this).

Even if XMRV does not prove causative, it has at least created a bandwagon of biomedical research that is way, way overdue for a patient population and disease severity of this magnitude. No wonder patients are cheerleading the Whittemore Peterson Institute.

If you consider yourself to be a fair person, Ms Godlee, then please put aside your assumption of who may be right and who may be wrong about ME and take a more neutral view. This many patients can't all be wrong.

Competing interests: None declared

Published 26 June 2011

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