Suzy Chapman, 19 June 2006

The Gibson Questions

On 11 April 2006, the Group on Scientific Research into ME, led by Dr Ian
Gibson MP, put out a Press Release announcing the first of a series of Oral
Hearings. Oral Hearing 1 took place on 18 April at the House of Commons and
evidence was heard from ME sufferers, charities and voluntary organisations.
This was a public meeting and the ME community had been given to understand
that all subsequent meetings would be held in public, too.

Membership of the Group on Scientific Research into ME consists of:

Dr. Ian Gibson MP (Chair)
Dr. Richard Taylor MP (Vice-Chair)
Ms. Ann Cryer MP (Secretary)
Rt Hon Michael Meacher MP
Dr. Des Turner MP
Mr David Taylor MP
Lord Turnberg
Baroness Cumberlege
Countess of Mar

The April Press Release stated that the Group's hearings would conclude
before parliament's summer recess and that full details would be "announced
soon". That was April. It's now mid June.

It emerged, last week, that two further Oral Hearings have in fact already
taken place. Oral Hearing 2 was held on 10 May and appears not to have been
held in public. Oral Hearing 3 was held on 7 June but less than a handful
of members of the public are said to have attended.

Neither of these meetings was publicised. Why?

A number of reasons have been rumoured for the failure of Dr Gibson's Group
to notify the public of the dates on which these hearings were taking place
and the names of those who were making presentations at them; that,
apparently, no room of a suitable size could be made available; that,
apparently, it was felt that the Group was within its remit not to publicise
these hearings; that perhaps certain presenters had expressed discomfort at
the prospect of delivering a presentation at a meeting to which the public
would be admitted; that although the dates of these meetings were being
given out to those making direct enquiries, that those phoning Mr Ian
Woodcroft's office were having some difficulty in establishing exactly who
was scheduled to present evidence at these important second and third
hearings.

Whatever the true reason for the failure of Dr Gibson's Group to publicise
these meetings the result was that a lot of people who would have liked to
have attended, including certain representatives of the ME charities, could
not attend because they did not know until a few days ago that these hearing
had in fact already taken place.

A lot of people are justifiable angry and concerned.

It has yet to emerge why this unsatisfactory and unacceptable state of
affairs has been allowed to occur, for very little information is currently
coming out of Dr Gibson's office and what is coming out, has been
contradictory, that Ian Woodcroft is no longer working on this project; that
Ian Woodcroft is still responsible; that the next hearing (Oral Hearing 4)
is scheduled for 21 June; that the hearing scheduled for 21 June has now
been postponed until 11 July; that it has not been established who will be
presenting at the hearing originally scheduled for 21 June, how many further
hearings there might be or who will be presenting at these.*

On Wednesday, 14 June, I emailed Ian Woodcroft and sent copies to Dr Ian
Gibson, Dr Richard Taylor MP (Vice-Chair), Dr Des Turner MP and The Countess
of Mar. The following day, I emailed Dr Gibson's assistant to ask who is
currently responsible for providing responses to queries.

I've received no response nor acknowledgement from anyone.

One final point, quite a number of high profile members of the ME community
and those "close to them" would have been aware that Oral Hearings 2 and 3
were taking place and who was scheduled to give presentations at them.
Some of these are involved in the ME internet milieu and have close links
with the ME charities. Many of these would have been aware that despite the
April Press Release, no official publicising of subsequent hearings was
being carried out by the Gibson Group.

Did it not occur to any of those who were "in the know" and had firm
confirmation that these hearings were about to take place to put this
information in the public domain and thereby alert the ME community who
would have wanted to have taken the opportunity of attending to witness
these presentations and perhaps also raise questions of the presenters?

From the outset, this Inquiry has been dogged by problems and concerns.
At the very least, those responsible for its organisation should be ensuring
and be seen to be ensuring that the public are being kept fully informed of
developments, that the public are given due notice of all hearings, that the
public are in a position to attend and that minutes and transcripts of those
hearings already held will be released as soon as possible.

It is also anticipated that the GSRME Group will fully account for what has
taken place.

*Since Oral Hearing 1, Presentations have been given by NICE, Dr Byron Hyde,
Dr Bruce Carruthers, Professor Peter White, Professor Trudie Chalder, Dr.
Anthony Cleare, Dr. Vance Spence, Dr. Jonathan Kerr.

The names of further presenters remains to be addressed as do the questions
raised below.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Sent: 14 June 2006
To: Ian Woodcroft
CC: Dr Ian Gibson, Dr. Richard Taylor MP (Vice-Chair), Dr. Des Turner MP,
Countess of Mar

Re: Group on Scientific Research into Myalgic Encephalomyelitis (ME)
Re: Oral hearings


Dear Mr Woodcroft,

There exists a good deal of confusion and concern about the arrangements
made for Oral hearings 2 and 3 and for any subsequent Oral hearings which
may have been scheduled. I should be pleased if you would be kind enough to
clarify the following for the benefit and interest of the ME community, at
your earliest convenience:

Oral hearing 2 Room T, Portcullis House 10 May 2006:
A copy of the Agenda for Oral hearing 2 has, in the last couple of days,
found its way into the public domain. This is the first intimation that
many interested parties have had that a second Oral hearing had taken place
on 10 May and the names of those who made presentations at that hearing:

1] Was Oral hearing 2, held on Wednesday, 10 May 2006 open to members of the
public?
2] If members of the public were not admitted what were the reasons for
these presentations not being held in public?
3] Why was the decision taken not to publicise this hearing, whose decision
was this and when was it taken?
4] Will minutes of Oral hearing 2 be made public, when, in what form, and
who will be responsible for their circulation?
5] Will transcripts of the presentations made on behalf of a) NICE, b) Dr
Byron Hyde, c) Dr Bruce Carruthers be made available, in what form, when,
and who will be responsible for their circulation?

Oral hearing 3 Room E, Portcullis House 7 June 2006:
A copy of the Agenda for Oral hearing 3 has also, in the last couple of
days, been placed in the public domain. Once again, this is the first
intimation that many interested parties have had that a third Oral hearing
had taken place on 7 June and the names of those who made presentations.

1] Was Oral hearing 3, held on Wednesday, 7 June 2006 open to members of the
public?
2] If members of the public were not admitted what were the reasons for
these presentations not being held in public?
3] Why was the decision taken not to publicise this hearing, whose decision
was this and when was it taken?
4] Will minutes of Oral hearing 3 be made public, when, in what form, and
who will be responsible for their circulation?
5] Will transcripts of the presentations made on behalf of a) Professor
Peter White, b) Professor Trudie Chalder, c) Dr. Anthony Cleare, d) Dr.
Vance Spence, e) Dr. Jonathan Kerr be made available, in what form, when,
and who will be responsible for their circulation?

Further Oral hearings

1] Please confirm whether a fourth Oral hearing is scheduled to take place
on Wednesday, 21 June 2006?
2] How many further Oral hearings are scheduled to take place, on what dates
are these scheduled for and who will be presenting at these hearings?
3] Will any hearings subsequent to Oral hearing 3 be held in public and if
not, what are the reasons for presentations not being held in public?
4] If these hearings are to be held in public how many seats are available
for those wishing to attend?
5] Irrespective of whether any forthcoming hearings are to be held in public
or private, will these hearings be publicised and who will be responsible
for circulating notices and Agendas?
6] Will minutes of any forthcoming Oral hearings be made public, in what
form, and who will be responsible for their circulation?
7] Will transcripts of the presentations made in any forthcoming Oral
hearings be made available?

The ME community has been very disappointed and disturbed that no prior
notification of Oral hearings 2 and 3 was placed in the public domain. Many
of those who would have liked to have attended were unable to do so since
they were unaware that these hearings were taking place.

1] Could you please confirm whether any notifications were sent out directly
to any parties announcing Oral hearing 2 and Oral hearing 3 and who received
notification?

I look forward to your responses.

Sincerely,

Suzy Chapman