Invest in ME
PO Box 561, Eastleigh SO5O OGQ, Hampshire, UKTelephone: 02380 251719 – 07759 349743
Web: www.investinme.org
Email: info@investinme.org
Charity Nr 1114035

To The Editor of the Lancet – The PACE Trial
To: Dr Richard Horton Editor The Lancet

14 November 2015

Dear Dr Horton,
As you may be aware the PACE Trial (Comparison of adaptive pacing therapy, cognitive behaviour
therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): arandomised trial) has come under further scrutiny recently – this time by scientists and journalists whohave looked at this trial from an unbiased viewpoint.
You may recall that we contacted you several years ago [1] but received no reply.
Previously you have commented about the PACE trial where you have described patient advocatesas “a very damaging group of individuals”, who “have distorted the debate” [2].
Whatever your views may be now concerning ME patients, as advocates of better education regarding
ME/CFS, Invest in ME would suggest that the current authors of the recent analysis of the PACE Trial[3, 4] cannot be described as “damaging group of individuals” but rather as accepted authorities
casting real, objective analysis over research which the patient community has not wanted, has notneeded and which has become a template for how not to perform research.
To many, the PACE Trial has become synonymous with poorly conducted and biased research. Yet thePACE trial is more than an abject failure – it is an embarrassment.
In addition it is also now damaging.
It is damaging to science.
It is damaging to other researchers who are put off entering ME research – not because of distortion bypatients – but rather because the lack of quality that this trial embodies and which casts doubt on
every other piece of ME research being funded
It is damaging to the public perception of this disease.
Most importantly it is damaging to patients, their carers and families – those whose GPs accept thePACE trial as being of good quality evidence of the efficacy and safety of CBT and GET as treatments
for ME/CFS, as the study was published by the Lancet.
It is the patients who matter and who should be served by the £5 million pounds or more that has
been given for this research from a publicly funded body.
The blame for initiating this trial and the lack of ongoing monitoring of this trial, must be laid squarelyat the door of the Medical Research Council who have utterly failed in meeting the requirements forresearch regarding myalgic encephalomyelitis.
However, it is the Lancet that published the PACE Trial and implicitly continues to support it by thesilence from the editorial staff.
This letter was originally created to request that the Lancet retract the PACE Trial paper in full, without
reservation.
However, before we had dispatched this letter, a new development arose.

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A letter signed by many notable scientists was sent to you [5] requesting that an independent reviewof the PACE Trial be made with no UK and no psychiatric presence.
We therefore feel there are two clear choices for the Lancet to consider – the independent review of
the PACE Trial – or the complete retraction of the paper.
We understand that, having fast-tracked the publication of the original PACE trial, it will be difficult for
the Lancet to admit that this research is of no value in treating ME/CFS.
The Lancet’s own web site states its core editorial values - “When you publish with The Lancet you’rejoining a community that believes that everyone has the right to the highest attainable standard ofhealth and that care should be equitable and just”.
This is clearly not the case with the flawed PACE Trial.
As we stated in our previous letter to you, there is no excuse for ignorance with regard to any disease– especially ME/CFS which has been so maligned by misinformation, lack of funding and vested
interests employed by the insurance industry.
The Lancet has a duty to report honestly and fairly. And it owes the patients and the public anadmittance that flawed research will not be tolerated – and certainly not promoted as being worthy ofcarrying support from the Lancet name.
If your role really is “to let in the light” and “be a sharp surgical instrument to cut out the dross” [6]then it is inherent on you to see through the farce of the PACE Trial and move on.
We ask you to consider now the consequences of maintaining support for the PACE Trial and instead
act for the benefit of patients – those on the receiving end of poor research and orchestrated media
attacks by ignorant or bigoted journalists.
There is a clear choice now – an independent review of the PACE Trial or a full retraction.
The alternative is to continue this farce – to the detriment of patients.
In order to help resolve the inadequacies of the past we therefore again invite you to Invest in ME’sannual research conference next year – IIMEC11 the 11th International ME Conference in London inJune. Invest in ME would also facilitate a meeting for you with some of the researchers who will bepresenting at the conference and our 6th Biomedical Research into ME Colloquium.
In all failures there is an opportunity to improve. The PACE Trial may have completely failed but thisopportunity can be taken to learn from this failure and to make things better.
Yours sincerely,
The Chairman and Trustees
Invest in ME
UK Charity Nr 1114035

REFERENCES
1.

Invest in ME Letter to the Editor of the Lancet http://tinyurl.com/ocpq5fe2.

Richard Horton interview Australia - http://tinyurl.com/3dg468w

3.

David Tuller's full articles:

Invest in ME

www.investinme.org

2Invest in ME
http://www.virology.ws/2015/10/21/trial-by-error-i/
http://www.virology.ws/2015/10/22/trial-by-error-ii/
http://www.virology.ws/2015/10/23/trial-by-error-iii/
4.

Professor James Coyne http://blogs.plos.org/mindthebrain/2015/10/29/uninterpretable-fatalflaws-in-pace-chronic-fatigue-syndrome-follow-up-study/-

5.

“An open letter to Dr. Richard Horton and The Lancet
http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet

6.

Thomas Wakley, founded The Lancet with the statement that "A lancet can be an arched window
to let in the light or it can be a sharp surgical instrument to cut out the dross and I intend touse it in both senses".

Invest in ME

www.investinme.org

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