Fw: [CO-CURE] ACT: (Part 2 of) Suggestion for a simple action - MRC (UK)

[Guest guest]

From Tom Kindon, Ireland.

Subject: [CO-CURE] ACT: (Part 2 of) Suggestion for a simple action -

MRC

Following my post:

[CO-CURE] ACT: Suggestion for a simple action with regard to the

Medical Research Council and its research strategy on " CFS/ME "

http://listserv.nodak.edu/scripts/wa.exe?A2=ind0401a & L=co-

cure & F= & S= & P=61 ,

somebody has asked about contacting the PHRU (Public Health Resource

Unit) directly.

The PHRU are at: http://www.phru.nhs.uk/ The relevant link brings one

to http://www.phprojects.nhs.uk/

Their " contact us " page is http://www.phprojects.nhs.uk/contact_us.htm

This did not work for me so I rang the number at the bottom and was

told to E-mail my request to: Jackie.Bowley@p...

She replied saying that they had received my E-mail and had passed it

on to the relevant person to deal with it and that I should be

hearing back from Kate Saffin shortly.

I looked up Kate Saffin and she is one of the names on the PHRU

report on the first consultation the " CFS/ME " Research Strategy (on a

questionnaire which didn't give, in my opinion, as much scope to

comment as the second consultation on the draft " CFS/ME " Research

Strategy). The PHRU report on the first consultation can be found at

the bottom of the " CFS/ME Research Strategy "

http://www.mrc.ac.uk/prn/pdf-cfs_me_research_strategy.pdf

The PHRU report on the second consultation is conspicuous by its

absence from this report (or anywhere else on the MRC website), IMHO.

I found the following information on another PHRU document

http://www.mrc.ac.uk/pdf-phru_analysis_ct4t.pdf

Kate Saffin

Annette Hackett

Adele

kate.saffin@p...

Public Health Resource Unit

Old Road

Headington

Oxford.

OX3 7LF.

Tel: 01865 226888

Fax: 0186522715

[Aside: other PHRU reports for the MRC are on the web, it seems, so

why not the consultation on the draft " CFS/ME " Research Strategy??]

If people wanted to contact the PHRU along with or instead of

contacting the MRC it would be good. For example, one (A) would have

difficulty saying it was the other's (B's) responsibility if the

other ( had already directed you back to other (A) (if that makes

sense!!).

The PHRU (Public Health Resource Unit) was commissioned by the MRC to

prepare the report independently - they're separate but both publicly-

funded bodies.

Tom Kindlon

My E-mail to PHRU (Public Health Resource Unit):

I would be interested in a copy of either the PHRU (Oxford) draft or

full report on the consultation process on the MRC`s CFS/ME Draft

Research Strategy Document (mentioned below).

http://www.mrc.ac.uk/index/about/about-organisation/about-

bodies_and_members

/public-cfs_me/public-cfs-meeting_27_02_03.htm

CFS /ME Research Advisory Group

Note of Third Meeting Thursday 27 February 2003

Matters Arising

There were no new declarations of interest since the previous meeting.

Outcome of Consultation Exercise

The Group was reminded that the draft Research Strategy had been

released for public consultation, with significant national media

publicity. 145 responses had been received by the deadline for

receipt. The Group indicated its gratitude for the effort that these

individuals and organisations had made in helping to preparing a

research strategy for CFS/ME.

A draft report prepared independently by the PHRU (Oxford) of the

responses to consultation was discussed.

---------------------------------------------

Co-Cure Web Site: http://www.co-cure.org/

Send posts to mailto:CO-CURE@l...

Join or leave the list at http://www.co-cure.org/sub.htm

Co-Cure is not a discussion list. Please do not reply to the list.

---------------------------------------------