APPG for ME
Invest in ME
were invited to attend APPG meetings by the new chair
Annette Brooke MP - an MP whom we believe is intent on
improving the situation. Although it hasn't been possible to
attend in person (due to personal circumstances in the
trustees' families) the charity has nevertheless attempted
to play as full role as possible by submitting questions to
the APPG and their guests. The questions posed by IiME
depend to some extent on having received the agenda within
an adequate enough time of the start of the meeting - which
hasn't seemed to be the case always.
to the APPG are made public beforehand, as best we can, and
can be viewed here.
It is to our
great disappointment that our questions do not seem to have
been put to the group meeting, judging by the minutes which
we have been given by supporters, never by the secretariat
of the APPG. A similar situation developed with the Forward
ME group meetings, to which we were initially invited, but
where our input
and questions were never discussed or even minuted, let
alone answered (for the record they may be seen
Our input to the last
APPG meeting is here - click
At the recent
January 2012 meeting the guest was Professor Sir John Savill
- head of the Medical Research Council.
From the minutes
of the meeting held on 24 January 2012, at which Sir John
answered questions about the MRC funding for ME research,
|"Ian Swales MP asked whether
there is a long term commitment that there will
perhaps be somebody who is looking out for this
condition. Professor Savill said that there has
been a problem in the relationship between
researchers and patients in this area and that
charities are key in building that interaction.
That is what will sustain activity. Ian Swales
MP said that Professor Savill had made comment
on a positive community. He feels that charities
have a key role in maintaining that community
and advises an attitude of positivity and not
attacking the very people who are trying to
The history of MRC funding of ME research has, for a
generation, been such that patients have had no
other choice but to be angry and question the false
science being propagated by establishment
organisations and vested interests. Biomedical
researchers have not received funding and have been
forced to leave the field as the MRC has only
favoured behavioural studies.
It needs to be said that patients have a right to criticise
studies that they feel are not representing them correctly
such as the MRC, Department of Health (DoH), Department of
Work and Pensions (DWP) and Scottish Chief Scientist Office
funded PACE trial.
If, at the start of the PACE trial, the researchers claimed
that patients with an SF36 score of 65 were disabled, and
yet by the end of the trial those scoring 60 were being
classed as recovered then what are patients supposed to do?
The PACE study was published in the Lancet on 18 February
2011 and there was no mention of conflict of interest by
authors White, Chalder and Sharpe.
On 18 February 2012 The Lancet published a letter of
clarification regarding the Chalder Fatigue scale used in
the PACE trial and at the end of that letter the authors
Professors Chalder (TC), Sharpe (MS) and White (PDW) declare
their conflict of interest -
"TC has done consultancy
work for insurance companies and has received royalties from
Sheldon Press and Constable and Robinson. MS has done
voluntary and paid consultancy work for government and for
legal and insurance companies, and has received royalties
from Oxford University Press. PDW has done voluntary and
paid consultancy work for the UK Departments of Health and
Work and Pensions and Swiss Re (a reinsurance company)."
Why weren't these conflicts of interest declared at the
publication of the PACE trial?
The MRC, as funders of the PACE trial, should have taken
patients' concerns seriously.
The PACE trial has been shown to be the flawed science that
it is - a research trial which has
needlessly squandered vast resources with no useful outcome
for patients or clinicians. Magical medicine! The MRC do
need to take responsibility for previous actions and learn
from the past mistakes.
Charities need to stop supporting and linking themselves to
meaningless behavioural studies - and perhaps patients
should look again at the aims and objectives and performance
of the charities whom they support.
We hope Sir John's appointment will mark a turning point in
MRC direction from the wasteful and negligent path of
psychiatry and vested interests to the only path which makes
any scientific sense - biomedical research. The recent band
of funding for ME research from the MRC is hopefully a sign
that a more honest and productive strategy will eventually
be found to research ME. One could think of worse ways to
progress than to support the IiME proposal for biomedical
research in Norwich.
The MRC and Sir John will be judged on actions and
performance. We already know how history will judge those
vested interests who have, in the past, manipulated the
lives of hundreds of thousands of patients and their