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UK First Commons' motion on ME/CFS in the new Parliamentary session
- Thread starter V99
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Angela Kennedy
Senior Member
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Can't see anything. Lots of potential 'double-speak', and Charles Shepherd's hobby horse of 'quick diagnosis' (even if badly done and incorrect?)
Dx Revision Watch
Suzy Chapman Owner of Dx Revision Watch
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EDMs are not worth much and this one has not been worded well.
"...many patients with CFS can, if they receive appropriate support, make considerable progress and live free of relapse"
??????
"...many patients with CFS can, if they receive appropriate support, make considerable progress and live the life they love..."
Those who have not been kicked off the MEA's Facebook site may wish to register their dismay that a poorly worded EDM has been laid down before the content could be discussed at an APPG on ME meeting.
http://edmi.parliament.uk/edmi/
Suzy
"...many patients with CFS can, if they receive appropriate support, make considerable progress and live free of relapse"
??????
"...many patients with CFS can, if they receive appropriate support, make considerable progress and live the life they love..."
Those who have not been kicked off the MEA's Facebook site may wish to register their dismay that a poorly worded EDM has been laid down before the content could be discussed at an APPG on ME meeting.
http://edmi.parliament.uk/edmi/
Suzy
further notes that many patients with CFS can, if they receive appropriate support, make considerable progress and live free of relapse
THIS IS TERRIFYING. This is CBT/GET being enforced by law.
People with real CFS do not 'make progress' and 'live free of relapse'. This is the mythology of Simon Wessely being turned into the law.
As I said, this is terrifying.
THIS IS TERRIFYING. This is CBT/GET being enforced by law.
People with real CFS do not 'make progress' and 'live free of relapse'. This is the mythology of Simon Wessely being turned into the law.
As I said, this is terrifying.
Dx Revision Watch
Suzy Chapman Owner of Dx Revision Watch
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I can confirm that Dr Charles Shepherd, Honorary Medical Adviser and Trustee to the ME Association and the org rep who has shared the secretariat function for the APPG on ME, has responded to concerns about the wording and origination of this EDM.
He has said that [the ME Association] are not involved in the EDM and nor is the APPG on ME.
The only good thing is that EDMs are pretty low profile methods of raising awareness amongst parliamentarians and rarely result in a debate being secured.
The author of this EDM should of course have consulted with the outgoing APPG on ME or held back until the new APPG on ME had been formed (which took place on 7 July) and then the content and wording of any proposed EDM should have been discussed at an APPG on ME meeting.
Occasionally, EDMs are picked up by the media or an APPG group will promote an EDM or an interest group will encourage members of the public to lobby their MPs to sign up to an EDM.
But mostly they sink unnoticed.
I can't see too many people encouraging their MPs to sign up to this one.
Question is who lobbied/briefed this MP?
Suzy
He has said that [the ME Association] are not involved in the EDM and nor is the APPG on ME.
The only good thing is that EDMs are pretty low profile methods of raising awareness amongst parliamentarians and rarely result in a debate being secured.
The author of this EDM should of course have consulted with the outgoing APPG on ME or held back until the new APPG on ME had been formed (which took place on 7 July) and then the content and wording of any proposed EDM should have been discussed at an APPG on ME meeting.
Occasionally, EDMs are picked up by the media or an APPG group will promote an EDM or an interest group will encourage members of the public to lobby their MPs to sign up to an EDM.
But mostly they sink unnoticed.
I can't see too many people encouraging their MPs to sign up to this one.
Question is who lobbied/briefed this MP?
Suzy
Dx Revision Watch
Suzy Chapman Owner of Dx Revision Watch
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EDMs are not legislative.
Dozens are "laid down" every week by MPs.
They are open to signatures from MPs for a certain length of time (for a Parliamentary Term, I think) and then they close. Occasionally, as a result of an EDM, a debate is held which is recorded verbatim in Hansard.
If you go here, you can see the most recent EDMs:
http://edmi.parliament.uk/EDMi/EDMList.aspx
http://edmi.parliament.uk/edmi/
Early day motions (EDMs) are formal motions submitted for debate in the House of Commons. However, very few EDMs are actually debated. Instead, they are used for reasons such as publicising the views of individual MPs, drawing attention to specific events or campaigns, and demonstrating the extent of parliamentary support for a particular cause or point of view.
An MP can add their signature to an EDM to show their support. They can also submit amendments to an existing EDM. Although majority of EDMs are never debated, the group of EDMs known as 'prayers' may be debated. Prayers are motions to overturn Statutory Instruments (laws made by Ministers under powers deriving from Acts of Parliament). Further information on EDM procedure can be found in the Commons Information Office Factsheet Early Day Motions.
Up-to-date and searchable information on EDMs is available from the Early Day Motions database. The database is updated nightly with new EDMs and signatures added to existing EDMs. To look at EDMs from any session going back to 1989/90, select the session you want from the pull down menu in the top right hand corner of the screen. For EDMs and signatures prior to 1989/90, please contact the House of Commons Information Office (020 7219 4272).
Dozens are "laid down" every week by MPs.
They are open to signatures from MPs for a certain length of time (for a Parliamentary Term, I think) and then they close. Occasionally, as a result of an EDM, a debate is held which is recorded verbatim in Hansard.
If you go here, you can see the most recent EDMs:
http://edmi.parliament.uk/EDMi/EDMList.aspx
http://edmi.parliament.uk/edmi/
Early day motions (EDMs) are formal motions submitted for debate in the House of Commons. However, very few EDMs are actually debated. Instead, they are used for reasons such as publicising the views of individual MPs, drawing attention to specific events or campaigns, and demonstrating the extent of parliamentary support for a particular cause or point of view.
An MP can add their signature to an EDM to show their support. They can also submit amendments to an existing EDM. Although majority of EDMs are never debated, the group of EDMs known as 'prayers' may be debated. Prayers are motions to overturn Statutory Instruments (laws made by Ministers under powers deriving from Acts of Parliament). Further information on EDM procedure can be found in the Commons Information Office Factsheet Early Day Motions.
Up-to-date and searchable information on EDMs is available from the Early Day Motions database. The database is updated nightly with new EDMs and signatures added to existing EDMs. To look at EDMs from any session going back to 1989/90, select the session you want from the pull down menu in the top right hand corner of the screen. For EDMs and signatures prior to 1989/90, please contact the House of Commons Information Office (020 7219 4272).
Dx Revision Watch
Suzy Chapman Owner of Dx Revision Watch
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I would suggest contacting Shepherd or AfME and requesting that the wording is amended.
The wording is not good and not helpful and we have had poorly worded EDMs in the past drated by the MEA in conjunction with former MP Dr Ian Gibson.
We should also try to establish who was responsible for briefing the MP who drafted the EDM (or had the EDM drafted for him - sometimes an MP's parliamentary researcher will draft EDMs).
But the status and purpose of EDMs needs to be understood:
"...they are used for reasons such as publicising the views of individual MPs, drawing attention to specific events or campaigns, and demonstrating the extent of parliamentary support for a particular cause or point of view."
They are not legislative.
Suzy
The wording is not good and not helpful and we have had poorly worded EDMs in the past drated by the MEA in conjunction with former MP Dr Ian Gibson.
We should also try to establish who was responsible for briefing the MP who drafted the EDM (or had the EDM drafted for him - sometimes an MP's parliamentary researcher will draft EDMs).
But the status and purpose of EDMs needs to be understood:
"...they are used for reasons such as publicising the views of individual MPs, drawing attention to specific events or campaigns, and demonstrating the extent of parliamentary support for a particular cause or point of view."
They are not legislative.
Suzy
Dx Revision Watch
Suzy Chapman Owner of Dx Revision Watch
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These EDMs (which relate to the nature and purpose of EDMs and in which the first of the two calls for reform or abolition of EDMs) will be of interest. The second is an Amendment to the first EDM.
http://edmi.parliament.uk/EDMi/EDMDetails.aspx?EDMID=41375&SESSION=905
EDM 432 EARLY DAY MOTIONS07.07.2010
Evans, Graham
That this House regrets the continuing decline in importance of Early Day Motions which have become a campaign tool for external organisations; notes the role of public affairs professionals in drafting Early Day Motions and encouraging members of the organisations they represent to send pro forma emails and postcards to hon. Members; further notes the huge volume of correspondence that this generates and the consequent office and postage costs incurred; believes that the organisations involved derive little benefit from Early Day Motions, which very rarely have any influence on policy; further believes that public affairs professionals are aware of the ineffectiveness of Early Day Motions, but continue to use them to attempt to justify their services; questions the value for money to the taxpayer of Early Day Motions of whatever origin; and calls for the system of Early Day Motions to be reformed or abolished.
Signatures( 4)
-------------
EDM 432A1 EARLY DAY MOTIONS08.07.2010
Lewis, Julian
leave out from `House' to end and add `recognises that Early Day Motions provide one of only a few methods of registering the views of large numbers of hon. Members, other than by votes in the House; believes that they enable hon. Members to generate support for worthwhile causes; consequently opposes their abolition; and accordingly advises hon. Members who do not wish to sign them simply to decline to do so.'.
Signatures( 1)
http://edmi.parliament.uk/EDMi/EDMDetails.aspx?EDMID=41375&SESSION=905
EDM 432 EARLY DAY MOTIONS07.07.2010
Evans, Graham
That this House regrets the continuing decline in importance of Early Day Motions which have become a campaign tool for external organisations; notes the role of public affairs professionals in drafting Early Day Motions and encouraging members of the organisations they represent to send pro forma emails and postcards to hon. Members; further notes the huge volume of correspondence that this generates and the consequent office and postage costs incurred; believes that the organisations involved derive little benefit from Early Day Motions, which very rarely have any influence on policy; further believes that public affairs professionals are aware of the ineffectiveness of Early Day Motions, but continue to use them to attempt to justify their services; questions the value for money to the taxpayer of Early Day Motions of whatever origin; and calls for the system of Early Day Motions to be reformed or abolished.
Signatures( 4)
-------------
EDM 432A1 EARLY DAY MOTIONS08.07.2010
Lewis, Julian
leave out from `House' to end and add `recognises that Early Day Motions provide one of only a few methods of registering the views of large numbers of hon. Members, other than by votes in the House; believes that they enable hon. Members to generate support for worthwhile causes; consequently opposes their abolition; and accordingly advises hon. Members who do not wish to sign them simply to decline to do so.'.
Signatures( 1)
Dx Revision Watch
Suzy Chapman Owner of Dx Revision Watch
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Athene, I hope the posts above will help to reassure you about the purpose and parliamentary status of EDMs.
A few years ago, former MP, Dr Ian Gibson, laid down an EDM for a debate around eating disorders. He was associated at the time with the patient org BEAT. His EDM did result in a debate which is unusual and the debate is recorded in Hansard.
Also don't be alarmed by the formal sounding wording - this is the format that EDMs are tabled in.
There are written and tabled by a named MP on behalf of cause in which he/she has an interest. Then other MPs sign up in support of the issues being raised. They can be on any subject in which an MP has an interest (or has been lobbied to raise awareness of). Some EDMs receive very few signatures in support. Occasionally an EDM will result in a debate.
If I were an MP, I might, for example, table an EDM around the Crawley research pilot:
(Example only)
"That this House notes that an estimated 80,000 children and young people in the UK are living with myalgic encephalomyelitis; further notes that ME is the largest cause of long-term absence in schools; supports the calls of patients and carers for research into the cause of this illness and effective treatments; is aware that an NHS Bath research team intends to study the application of a controversial programme called the Lightning Process in children as young as eight; notes that no rigorous, controlled trials have been undertaken into the safety and acceptability of the application of the Lightning Process in adults and calls on the Department of Health to ensure that researchers comply with the Medical Research Council's guidance that research involving children should only be carried out if it cannot feasibly be carried out on adults."
Annette Brooke is my MP and I have been advised this morning that she has volunteered for Vice-Chair of the reformed APPG on ME.
A few years ago, former MP, Dr Ian Gibson, laid down an EDM for a debate around eating disorders. He was associated at the time with the patient org BEAT. His EDM did result in a debate which is unusual and the debate is recorded in Hansard.
Also don't be alarmed by the formal sounding wording - this is the format that EDMs are tabled in.
There are written and tabled by a named MP on behalf of cause in which he/she has an interest. Then other MPs sign up in support of the issues being raised. They can be on any subject in which an MP has an interest (or has been lobbied to raise awareness of). Some EDMs receive very few signatures in support. Occasionally an EDM will result in a debate.
If I were an MP, I might, for example, table an EDM around the Crawley research pilot:
(Example only)
"That this House notes that an estimated 80,000 children and young people in the UK are living with myalgic encephalomyelitis; further notes that ME is the largest cause of long-term absence in schools; supports the calls of patients and carers for research into the cause of this illness and effective treatments; is aware that an NHS Bath research team intends to study the application of a controversial programme called the Lightning Process in children as young as eight; notes that no rigorous, controlled trials have been undertaken into the safety and acceptability of the application of the Lightning Process in adults and calls on the Department of Health to ensure that researchers comply with the Medical Research Council's guidance that research involving children should only be carried out if it cannot feasibly be carried out on adults."
Annette Brooke is my MP and I have been advised this morning that she has volunteered for Vice-Chair of the reformed APPG on ME.
Dx Revision Watch
Suzy Chapman Owner of Dx Revision Watch
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That's good.
Best,
Suzy
Best,
Suzy
Dx Revision Watch
Suzy Chapman Owner of Dx Revision Watch
- Messages
- 3,061
- Location
- UK
ME Association is, according to Tony Britton, working on a reply.
ETA:
From MEA Facebook Wall:
Tony Britton writes:
"...it's very strangely worded. But the MEA doesn't have a position as yet. We only found about it yesterday after it was launched."
ETA:
From MEA Facebook Wall:
Tony Britton writes:
"...it's very strangely worded. But the MEA doesn't have a position as yet. We only found about it yesterday after it was launched."
Dx Revision Watch
Suzy Chapman Owner of Dx Revision Watch
- Messages
- 3,061
- Location
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APPG on ME new committee (UK)
From AfME's Website:
All Party Parliamentary Group on M.E.
Chair: David Amess
Vice-Chair: Annette Brook MP*
Secretary: John Leech MP
Treasurer: Martin Vickers MP
[Ed:Brooke]
Minutes of a meeting of the All Party Parliamentary Group on M.E.
held at 11am, Wednesday 7 July 2010
Room B, 1 Parliament Street London
Present
Parliamentarians
David Amess MP - chair of this meeting
Annette Brook MP
John Leech MP
Martin Vickers MP
Parliamentary office representatives in attendance
Joanna Ashworth, office of David Amess MP
Richard Crossick, office of John Leech MP
Secretariat in attendance
Sir Peter Spencer (Action for M.E.)
Charles Shepherd (MEA)
Apologies:
Harriet Baldwin MP
Tony Baldry MP
1.Welcome
David Amess welcomed his fellow MPs and explained that the meeting had been
called to see if the APPG for M.E. should be formed again in the new
Parliament and re-registered on the approved list. He had agreed to sponsor
this inaugural meeting because he was the only remaining officer from the
APPG on M.E. in the previous Parliament still able to participate.
2. Election of Officers
The meeting was quorate and elected the following officers:
Chair - David Amess MP
Vice-Chair - Annette Brook MP
Secretary - John Leech MP
Treasurer - Martin Vickers MP
David Amess explained that he would act as chair on an interim basis only
because of the volume of his other commitments. He had found a fellow MP who
would be very suitable as chair and hoped that this member would come
forward for election to the post before too long. Meanwhile he would hold
the fort.
3. Registration
The meeting decided to apply for re-registration on the list of approved
APPGs. The secretariat confirmed that the criteria for qualifying members
had been met with a list of 20 parliamentarians of the required party mix.
David Amess and John Leech signed the application form. This will now be
delivered to The Office of the Parliamentary commissioner of Standards ahead
of the 13 July deadline.
4. Date of Next meeting
It was decided that the next meeting of the APPG would be held in November
2010. This would be preceded by an informal planning meeting in September to
discuss the future agenda and decide how the group will operate in this
Parliament.
5. AOB
The secretariat distributed copies of the legacy paper which was produced by
the previous APPG and of the "Turner" paper on the APPG inquiry into NHS
Service Provision for M.E./CFS.
From AfME's Website:
All Party Parliamentary Group on M.E.
Chair: David Amess
Vice-Chair: Annette Brook MP*
Secretary: John Leech MP
Treasurer: Martin Vickers MP
[Ed:Brooke]
Minutes of a meeting of the All Party Parliamentary Group on M.E.
held at 11am, Wednesday 7 July 2010
Room B, 1 Parliament Street London
Present
Parliamentarians
David Amess MP - chair of this meeting
Annette Brook MP
John Leech MP
Martin Vickers MP
Parliamentary office representatives in attendance
Joanna Ashworth, office of David Amess MP
Richard Crossick, office of John Leech MP
Secretariat in attendance
Sir Peter Spencer (Action for M.E.)
Charles Shepherd (MEA)
Apologies:
Harriet Baldwin MP
Tony Baldry MP
1.Welcome
David Amess welcomed his fellow MPs and explained that the meeting had been
called to see if the APPG for M.E. should be formed again in the new
Parliament and re-registered on the approved list. He had agreed to sponsor
this inaugural meeting because he was the only remaining officer from the
APPG on M.E. in the previous Parliament still able to participate.
2. Election of Officers
The meeting was quorate and elected the following officers:
Chair - David Amess MP
Vice-Chair - Annette Brook MP
Secretary - John Leech MP
Treasurer - Martin Vickers MP
David Amess explained that he would act as chair on an interim basis only
because of the volume of his other commitments. He had found a fellow MP who
would be very suitable as chair and hoped that this member would come
forward for election to the post before too long. Meanwhile he would hold
the fort.
3. Registration
The meeting decided to apply for re-registration on the list of approved
APPGs. The secretariat confirmed that the criteria for qualifying members
had been met with a list of 20 parliamentarians of the required party mix.
David Amess and John Leech signed the application form. This will now be
delivered to The Office of the Parliamentary commissioner of Standards ahead
of the 13 July deadline.
4. Date of Next meeting
It was decided that the next meeting of the APPG would be held in November
2010. This would be preceded by an informal planning meeting in September to
discuss the future agenda and decide how the group will operate in this
Parliament.
5. AOB
The secretariat distributed copies of the legacy paper which was produced by
the previous APPG and of the "Turner" paper on the APPG inquiry into NHS
Service Provision for M.E./CFS.