Invest in ME Research Position

Invest in ME Research Position

THE PACE Trial has been frequently discussed in articles on the Invest in ME website and on the charity’s social media since the first paper was published by Lancet in 2011. [1]

Invest in ME’s position on PACE has been unequivocal from the beginning.

The PACE Trial has been shown to be flawed and a colossal waste of scarce public funding which could have gone to biomedical research into ME which, by now, may well have been leading to a breakthrough in treating this disease.

This was how we assessed the continuing refusal to release the data from the PACE Trial in a newslett from as recently as November 2015.

Nothing has changed.

Please see this link - http://www.investinme.org/IIME-Newslet-1511-01.htm

In that article IiME included a letter to the Lancet editor Richard Horton.

We also included a list of actions we felt were necessary.

Predictably no response from the editor of the Lancet was forthcoming - despite a promise from his secretary that a response would be provided once Dr Horton returned from overseas.

Predictably also none of the other recommendations from IiME have been acted upon.

For historical information on the charity's consistent and long-held views on the PACE Trial please see the links below -

One can search our web site using this link – and this will show all references to PACE that exist on our site –

Amongst the references on our site to PACE are –

http://www.investinme.org/IIME%20Statement%202011-02-01.htm

http://www.investinme.org/Article429 The PACE Trial - An Expression Of Concern.htm

with further links at the bottom under Further information

http://www.investinme.org/Article405%20DWP%20&%20PACE.htm

http://www.investinme.org/Article-363%20Can%20the%20MRC%20PACE%20Trial%20Be%20Justified.htm

and so on.

We have objected to PACE since it was announced and have written a letter to Richard Horton, editor of the Lancet requesting that organisation to allow the data from the trial to be released for independent review or for the Lancet to retract the PACE Trial paper.

One of our advisors, Professor Jonathan Edwards was also a co-signatory to a letter from academics to Lancet.

It is also worth revisiting the basic issues regarding a ‘united front’ from the charities regarding issues such as PACE and NICE that some believe would be a worthwhile use of resource.

We made our views completely clear as far back as in 2008 when Lady Mar was setting up her Forward ME group

http://www.investinme.org/Article-182%20CoM%20Cooperation%20Meeting%2001.htm

The issue, as some have written, is not lack of some charities understanding PACE or not.

Everyone should know what they are doing and they do it for a reason.

The issues at hand with regard to the PACE Trial are not about science. It is all to do with politics.

We may write directly to QMUL – and will certainly respond to any request received from QMUL for our views on this subject.

Finally, as we have already stated in our newsletters and the recent article in November – everyone should not ignore the role of the Medical Research Council on this matter – nor that of the Science Media Centre. The MRC perform some wonderful work in many other fields and are a source of pride for many.

Unfortunately, with regard to ME the MRC have performed abysmally over the last decades with a biased strategy for ME research, and with a leadership in this area which has been sorely lacking in innovation, scientific rigor or compassion towards the plight of ME patients and their families.

On the subject of the release of PACE Trial data those in the MRC responsible for ME continue to be totally silent on this – despite our calls for them to demand that the data from the PACE Trial is released.

The MRC are responsible for using public funds for research and have funded the PACE Trial. Yet they have no comment on this - which is astonishing.

It is all the more astonishing as the MRC state their policy to be one of sharing data.

But it is quite clear that those in the MRC responsible for the continued waste years of opportunity and the corresponding waste of life have no accountability for the public funds they waste nor any effect their disastrous policies have had on people with ME and their families.

We stated all this in our December 2015 newsletter - https://www.investinme.org/IIME%20Newsletter%20December%202015.shtml