Minutes of the MRC CFS/ME Expert Group 2nd meeting held on 30 March 2009

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MRC CFS/ME Expert Group

Minutes of the 2nd meeting held on 30th March 2009

MRC Head Office, 20 Park Crescent, London W1B 1AL

In attendance:

Professor Stephen Holgate (University of Southampton – Chairman)
Professor Philip Cowen (University of Oxford)
Dr Esther Crawley (University of Bristol)
Professor Malcolm Jackson (University of Liverpool)
Dr Jonathan Kerr (St George’s University of London)
Professor lan Kimber (University of Manchester)
Professor Hugh Perry (University of Southampton)
Dr Derek Pheby (National CFS/ME Observatory)
Professor Anthony Pinching (Peninsula Medical School)
Dr Charles Shepherd (ME Association)
Sir Peter Spencer (Action for ME)

MRC
Dr Rob Buckle
Dr Joanna Latimer (Secretariat)

1. Chairman’s welcome, introduction & apologies

1.1 The Chairman welcomed members to the second meeting of the Group and thanked everyone for giving up their valuable time to attend. Introductions were made round the table.

1.2 Apologies had been received from Professor Jill Belch (University of Dundee) and Professor Peter White (Bart’s and the London School of Medicine and Dentistry).

2. Minutes of the 1st Meeting held on 15th December 2008

2.1 Members approved the minutes from the previous meeting as an accurate record, though agreed that an addendum be included that outlined the work of the CFS/ME Clinical and Research Network Collaborative as well as the work of the National Observatory.

3. Terms of Reference

3.1 The Chairman referred members to the revised draft Terms of Reference. Following discussions, the Group agreed that the Terms of Reference needed to incorporate encouragement of new researchers into the field. It was agreed that revised Terms of Reference would be circulated to members for final approval.

4. Update on work of CFS/ME charities

4.1 Sir Peter Spencer and Dr Charles Shepherd updated the Group on progress with the feasibility study for a Post-Mortem Tissue Bank for CFS/ME.

4.2 It was agreed that determining a good clinical phenotype would be key for the success of the proposed bank. This could be aided through setting up longitudinal and natural history studies in addition to a tissue archive. This would be an important area for discussion for the workshop.

5. Discussion on a CFS/ME research workshop

5.1 The Group discussed the format for the research workshop. It was agreed that this would be a small working event attended by CFS/ME researchers, researchers from outside the field and representatives from charities involved in research.

5.2 An overview of current research should be included, and this would be best achieved by providing the participants with a literature review. A two day meeting, from lunchtime to lunchtime, would allow sufficient time for an overview of research in key thematic areas to be presented through short talks, followed by a second day of discussions by small groups tasked with identifying research priorities.

5.3 An integrative approach would be important in helping to understand the causes of CFS/ME, and this should be reflected in the thematic areas highlighted for the short talks. Thefollowing areas were identified for these presentations:

. phenotyping and epidemiology
. autonomic dysfunction including cardiovascular dysfunction
. fatigue
. sleep
. pain
. neuropsychology
. imaging
. new technologies and technological platforms
. neuroendocrinology
. immune dysregulation
. infection

5.4 It would be important to try and bring in leading experts in the above areas from outside of the CFS/ME field, and ideally some of the talks should be presented by such experts. Opening the workshop  up to researchers from other fields should provide an opportunity for new expertise to be bought in and could, in time, lead to increased engagement from the outside community.

5.5 Areas for consideration by the discussion groups on the second day of the workshop should include the following questions:

. how can capacity in the field be increased?
. where are the UK strengths, in the context of international competition, and how could relevant links be forged?
. are there new technologies and/or technological platforms that could help move the field forward?

6. Date of next meeting

Members agreed that the next meeting should be held following the workshop. The secretariat would circulate potential dates in due course.

7. Close

The Chairman thanked members once again for their valuable contributions and closed the meeting.

Heather Walker, Communications Manager, Action for M.E. has advised me, this morning, that the minutes of the last meeting will be delayed.

Shortlink: http://wp.me/p5foE-2qt

Ms Walker writes @ 25 November

On behalf of the APPG on ME Secretariat, my apologies for the delay in the production of minutes of the last meeting.

We are still awaiting arrival of the verbatim transcript, kindly produced by a Hansard stenographer, on which the minutes are based.

As has been pointed out, the APPG has a policy that any comments on the APPG minutes and transcript be sent in to the APPG Secretariat one week before the meeting. The meeting scheduled for Wednesday the 2nd of December would therefore indicate a deadline for comments and amendments to be submitted by Wednesday the 25th of November

The delay means the usual procedure will have to be changed – what to will depend on when the transcript and minutes become available.

We will circulate them as soon as possible.

Meanwhile, the agenda for next week’s meeting is as follows:

1. Welcome by the Chairman
2. APPG Report on the Inquiry into NHS Services
3. Speaker: Mike O’Brien MP, Minister of State for Health Services
4. Minutes of the last meeting
5. Matters arising

- APPG legacy paper (in preparation for the General Election)

- New research: murine leukaemia virus-related virus (XMRV)

- Accessibility of venues for future meetings

6. Welfare update

- Employment and Support Allowance

- Welfare Reform Bill

7. Any other business

8. Date of next meeting

Heather Walker

Communications Manager
Action for M.E
Direct line: 0117 930 1323

Action for M.E. is the leading charity dedicated to improving the lives of people affected by M.E.
Action for M.E., Canningford House, 38 Victoria Street, Bristol BS1 6BY, 0117 927 9551
Registered charity number: 1036419. Registered in Scotland: SCO40452
www.afme.org.uk

The Role of Viruses in ME/CFS, XMRV and the MRC PACE Trial – Margaret Williams – 21st November 2009

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Permission to Repost

Note:  This is a long and heavily formated document and I am posting only the introduction here:

The full document can be accessed here on MEActionUK website:

http://www.meactionuk.org.uk/The-role-of-viruses-in-ME.htm

http://tinyurl.com/ykjveep

http://www.meactionuk.org.uk/The-role-of-viruses-in-ME.pdf

http://tinyurl.com/y8m8s8h

The role of viruses in ME/CFS: what, if any, will be the effect of the discovery linking XMRV to ME/CFS on the MRC PACE Trial?

by Margaret Williams

21 November 2009

For decades it has been known and shown that viruses play a role in ME/CFS; some illustrations from the literature are provided below (all of which are relevant and significant).

In relation to “CFS”, the most-studied viruses have been the Epstein-Barr Virus (EBV) and the Human Herpes Virus-6 (HHV-6). In relation to “pure” ME, the most studied viruses (and for which there is extensive evidence) have been the enteroviruses, usually Coxsackie B (CBV). Some illustrations from the literature of the role that viruses play in ME/CFS are provided at the end of this paper; all are significant.

There is increasing awareness that the dysregulated immune system that is a hall-mark of ME/CFS allows multiple latent viruses and microbial agents to become reactivated (Co-Cure NOT:12th November 2009).

Moreover, recent research has shown that even viruses which were hitherto believed not to persist after an acute infectious episode are capable of long-term viral persistence.

Nora Chapman et al from the Enterovirus Research Laboratory, Department of Pathology and Microbiology, University of Nebraska Medical Centre, have shown that human enteroviruses Coxsackie B can naturally delete sequence from the 5’ end of the RNA genome and that this deletional mechanism results in long-term viral persistence, which has substantially altered the previously held view

(http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440640/?tool=pubmed ). In a specially commissioned piece for the charity Invest in ME, the researchers say: “This previously unknown and unsuspected aspect of enterovirus replication provides an explanation for reports of enteroviral RNA detected in diseased tissue in the apparent absence of virus particles” (Journal of IiME 2009:3:1).

Dr John Chia, an infectious diseases specialist from Torrance, California, who specialises in ME/CFS, is on record: “I believe that the main reason (ME)CFS patients are symptomatic is due to continuing inflammatory response toward viruses living within the cells, enteroviruses in most of the cases I see. We have clearly documented certain enterovirus infections triggering autoimmune responses in some patients…Can you imagine how we would feel if there are viruses surviving in our muscles, brains, hearts and gastrointestinal tracts triggering ongoing immune responses?”  
(http://aboutmecfs.org/blog/?p=865 ).

The CFIDS Chronicle (Research Update, Summer 1993) explained viruses and retroviruses as follows:

“A virus is a microscopic organism that lives within the cells of another living organism. Viruses cause disease at the most basic level, by damaging the cells of living things. By themselves, viruses are lifeless particles incapable of reproduction, but once they enter the cell of another living thing they become active organisms that can multiply hundreds of times.

“Viruses are comprised of two parts – a core of either deoxyribonucleic acid (DNA) or ribonucleic acid (RNA) and a protective envelope of protein. RNA viruses are smaller than DNA viruses and sometimes contain a special enzyme called reverse transcriptase which allows them to convert RNA to DNA. These specialised viruses are known as retroviruses and have a unique ability to merge with the host’s own genetic material.

“Retroviruses have the unique ability to replicate themselves by (i) making a double-stranded DNA copy called a ‘pro-virus’ once they enter living cells. Pro-viruses integrate themselves into the human chromosome and become part of the host’s genetic code (ii) alter the host’s immune response by evading detection as a ‘hidden invader’ (iii) remain hidden and latent, spliced within the host’s DNA, for long periods of time. Retroviruses are known to be potent stimulators of cytokines”.

On 8th October 2009 the premier journal Science published a paper online showing a direct link between a retrovirus and ME/CFS (Detection of infectious retrovirus XMRV, in blood cells of patients with chronic fatigue syndrome. Lombardi VC, Ruscetti FW, Peterson DL, Silverman RH, Mikovits JA et al) which caused global reverberations.

However, this was not the first time that a retrovirus had been associated with ME/CFS.

In 1991, using polymerase chain reaction and in situ hybridisation, Dr Elaine De Freitas, a virologist at the Wistar Institute, Philadelphia (which is America’s oldest independent institution devoted to biological research) and Drs Daniel Peterson, Paul Cheney, David Bell et al found such an association (Retroviral sequences related to human T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome. Proc Natl Acad Sci USA 1991:88:2922-2926). It is notable that co-author Hilary Koprowski is a distinguished virologist and Professor Laureate who was Director of the Wistar Institute from 1957-1991; he is a member of the US National Academy of Sciences and is Director of the Centre for Neurovirology at Thomas Jefferson University.

Before publication, the findings were presented on 4th September 1990 by Elaine De Freitas at the 11th International Congress of Neuropathology in Kyoto, Japan.

Ten days later, on 14th September 1990 Dr Peter White (as he then was) and other members of the Wessely School dismissed the findings: “in the vast majority of CFS cases there is a psychological component. About 75% of CFS sufferers are clinically depressed, according to Peter White, senior lecturer in the department of psychiatric medicine at St Bartholomew’s Hospital in London. White said he believes depression is often a cause, rather than a consequence, of CFS…Les Borysiewicz, a clinical virologist at Addenbrookes Hospital in Cambridge (now Chief Executive of the MRC, having succeeded Professor Colin Blakemore) (said) ‘Whatever causes CFS, it isn’t the virus itself’…Anthony Clare, psychiatrist and medical director of St Patrick’s Hospital in Dublin (now deceased), pointed out that…there have been many ‘fatigue’ diseases with shifting causes: ’Neurasthenia, food allergies, now viruses. Some people would always rather have a disease that might kill them than a syndrome they have to live with’ ” (Science 1990:249:4974:1240).

In their PNAS article that was published in April 1991, De Freitas et al noted that chronic fatigue immune dysfunction syndrome (CFIDS) “may be related or identical to myalgic encephalomyelitis” and examined adult and paediatric CFIDS patients for evidence of human retroviruses (HTLV types I and II). As the CFIDS Chronicle article noted, the Wistar team looked at the peripheral blood DNA to see if they could find messenger RNA (mRNA) encoding for a viral segment of the HTLV-II virus.

At that time, known human retroviruses were the human immunodeficiency viruses 1 and 2 (HIV-1 and HIV-2) which are known to cause AIDS, and human T-lymphotropic viruses HTLV-I which causes lymphoma and HTLV-II which causes leukaemia (Hunter-Hopkins ME-Letter, October 2009). The four segments of the HTLV-II virus are referred to as the env, gag, pol and tax.

After a two year study, De Freitas et al provided evidence for HTLV-II-like infection of blood cells from CFIDS patients (and also to a lesser extent from people closely associated with them). This evidence was further substantiated by patient reactivity to proteins with the molecular weights reported for HTLV-I and HTLV-II antigens.

In their article, De Freitas et al said: “The frequency of these antibodies in CFIDS patients compared with healthy non-contact controls suggests exposure / infection with an HTLV-like agent rare in healthy non-contact people”.

Following the Wistar findings, researchers at the US Centres for Disease Control (CDC) allegedly attempted to replicate De Freitas’ work but failed to do so; this was suggested to be because certain scientists appeared eager to discount any possibility of a retroviral association with CFIDS. De Freitas defended her work and insisted that the CDC investigators had modified her assays, with the result that her work could not be replicated by the CDC.

De Freitas was publicly discredited; her research funding was discontinued and her research abandoned; she was subjected to what appeared to be attempts to destroy her professional reputation. Commenting on the subsequent discovery of XMRV (see below), ME/CFS expert Dr Paul Cheney of The Cheney Clinic was unambiguous: “Her work was unfortunately assaulted by the CDC. Her proposal to fly to the CDC in Atlanta to physically run the assays side by side with the CDC scientists was dismissed by the CDC” (http://cheneyclinic.com/a-retrovirus-called-xmrv-is-linked-to-cfs/538  ).

Read full article here:

http://www.meactionuk.org.uk/The-role-of-viruses-in-ME.htm

http://tinyurl.com/ykjveep

http://www.meactionuk.org.uk/The-role-of-viruses-in-ME.pdf

http://tinyurl.com/y8m8s8h

Received, today, from MRC Corporate Information and Policy under FOI:

Shortlink: http://wp.me/p5foE-2q2

PDF: participant list November 2009 (2)

23 November 2009

Please find attached a copy of the participants list for the workshop, as promised. This is also available on the MRC website at:

http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006510

Yours sincerely

Rosa Parker

Rosa Parker | Corporate Information and Policy

Medical Research Council

20 Park Crescent

London

W1B 1AL

———————

Ed: Please note that this list has been amended since this posting was first published as it contained transcription errors. If you have reposted the earlier version of this list, elsewhere, please replace with this  corrected version.

MRC CFS/ME Research Workshop

19th and 20th November 2009

Participant list

Dr Neil Abbot – ME Research UK

Professor Jangu Banatvala – King’s College London

Dr Kate Bishop – National Institute for Medical Research

Dr Gijs Bleijenberg – Radbound University

Professor Tim Cawston – University of Newcastle

Professor Trudie Chalder – King’s College London

Dr Charlotte Clark – Barts and the London

Professor Philip Cowen – University of Oxford

Dr Esther Crawley – University of Bristol

Professor Maria Fitzgerald – University College London

Dr Suzanne Hagan – Glasgow Caledonian University

Dr Kirstie Haywood – University of Warwick

Professor Stephen Holgate – University of Southampton

Professor Jim Horne – University of Loughborough

Dr Jonathan Kerr – St George’s University of London

Professor Paul Little – University of Southampton

Dr Samuele Marcora – Bangor University

Professor Chris Mathias – Imperial College London

Professor Paul Moss – University of Birmingham

Professor Rona Moss-Morris – University of Southampton

Dr Luis Nacul – London School of Hygiene and Tropical Medicine

Professor Julia Newton – University of Newcastle

Dr Derek Pheby – ME Observatory

Professor Anthony Pinching – Peninsula Medical School

Professor Chris Ponting - MRC Functional Genomics Unit

Professor Alan Rickinson – University of Birmingham

Dr Charles Shepherd – ME Association

Dr Vance Spence – ME Research UK

Sir Peter Spencer – Action for ME

Dr Jonathan Stoye – National Institute for Medical Research

Professor Chris Ward – University of Nottingham

Professor Peter White – Barts and the London

Mary-Jane Willow  – Association of Young People with ME

MRC Head office Staff

Dr Rob Buckle
Dr Jo Latimer

http://www.mrc.ac.uk/Ourresearch/ResearchFocus/CFSME/index.htm

MRC CFS/ME Research Workshop

The MRC held a small research workshop for CFS/ME on the 19 and 20th November 2009. The agenda, papers and meeting participants can be found at the links below

Agenda: MRC CFS/ME Research Workshop
http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006511

List of participants of the MRC CFS/ME Research Workshop
http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006510

[Open PDF at top of post]

[PDF Format]   Open here: CFSME Literature Review Jan 2004 – Jun 2009[1]   [3MB]

Papers circulated prior to the meeting:

CFS/ME Literature review Jan 2004 – June 2009
http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006509

Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome: Lombardi VC et al. Science. 2009 326:585-9

Note of the Workshop to follow

—————

[Ed: Note this is an unofficial note of the procedings prepared by Dr Charles Shepherd MEA, not the official MRC note of the Workshop.]

MRC Expert Group on ME/CFS: Brief Notes on Research Workshop held on 19/20 November 2009

Monday, 23 November 2009 16:42

The Medical Research Council’s Expert Group Workshop on ME/CFS Research took place on Thursday 19 November and Friday 20 November at Heythrop Park, Oxford. Around 30 researchers and clinicians from various disciplines, plus MRC staff, took part.

Besides those with existing expertise in this area, there were others present who were new to the subject and consequently brought fresh thinking to the issues and questions being discussed.

PRESENTATION SUMMARIES AND SLIDES

The MRC will be publishing summaries and slides from all the main presentations that were given – once this information has been checked and approved by those who gave the presentations.

I understand that the MRC will also be publishing a full list of everyone who attended this meeting.

The MEA website will carry a suitable link in our news box when all this information appears on the MRC website.

PRESENTATIONS

There were presentations followed by discussions on the following key topics on the first day:

Epidemiology and clinical phenotyping – Dr Esther Crawley
Autonomic dysfunction – Professor Julia Newton
Sleep – Professor Jim Horne
Pain – Professor Maria Fitzgerald
Neuropsychology – Professor Gijs Bleijenberg
Neuroimaging – Professor Phil Cowen
New technologies – Professor Chris Ponting
Immune system dysregulation and infection – Professor Tony Pinching
Virology – Professor Paul Moss

Although not covered by specific presentations, a number of other topics – including muscle abnormalities, mitochondrial dysfunction, post-mortem and tissue bank research – were referred to, along with the way in which patients under the ME/CFS umbrella should be defined and selected to take part in research studies.

The second day consisted of group discussions which considered the following topics:

capitalising on current issues and UK strengths in the area of ME/CFS research
the use of new technologies
partnership models
research prioritisation
Each group then reported back to facilitate a whole group discussion.

The meeting closed with a summing up and an explanation of the next steps forward from Professor Stephen Holgate, Chair of the MRC Expert Group.

BACKGROUND INFORMATION

Background information provided by the MRC included a 351-page literature review of the current state of ME/CFS research and paper copies of the XMRV paper from Science.

The MEA provided copies of the latest edition (October 2009) of our guidelines – ME/CFS/PVFS – An Exploration of the Key Clinical Issues -on research, clinical assessment and management.

INFECTION AND XMRV:

There was a great deal of lively discussion relating to all aspects of XMRV infection – ie existing research findings; replication of the preliminary results from research groups both here and abroad; implications for blood donation; possible pathogenicity of the XMRV infection; future research priorities – during the formal sessions, over dinner, and well into the night on Thursday. We were fortunate in having four researchers present who are all involved with taking this research forward and are well aware of what is happening both here and abroad.

It was made clear to all the researchers present who are involved in retroviral work that the MEA Ramsay Research Fund has money available if this is required urgently to help fund any immediate or short term funding requirement. The MEA is also very willing to look at more major grant proposals relating to XMRV.A link to the latest MEA summary on XMRV can be found on the home page of the MEA website and we will be updating this information later in the week. The website also has details of our exchange of correspondence with Sir Liam Donaldson, Chief Medical Officer, on the subject of blood donation.

The All Party Parliamentary Group on ME has XMRV on the agenda when it meets at the House of Commons on Wednesday 2 December. The Rt Hon Mike O’Brien, Minister of State (Health Services) at the Department of Health, will be present to deal with the main item on the agenda: the APPG Inquiry into NHS Services for people with ME/CFS. This meeting is open to the public – more details re time and venue can be found on the MEA website. If you are intending to come to the meeting please check the MEA website the day before because the House of Commons venue can change at short notice. And do allow at least 30 minutes from arriving at the House of Commons to get through security and find directions the right room.

The Countess of Mar’s Forward ME Group also has research on the agenda when they meet on Tuesday 24 November at the House of Lords.

The MRC workshop also discussed other infections, in particular herpes virus infections, that have been implicated in ME/CFS.

AUTONOMIC DYSFUNCTION: PROFESSOR JULIA NEWTON

Professor Julia Newton and her team at the University of Newcastle, who are working on autonomic dysfunction in ME/CFS, have just had a new paper published in the European Journal of Clinical Investigation. The paper describes an interesting practical approach to the management of symptoms relating to orthostatic intolerance. Ref: Sutcliffe K et al. Home orthostatic training in chronic fatigue syndrome – a randomised placebo-controlled feasibility study. EJCI, November 12 2009. If we can obtain an abstract of this EJCI paper it will be placed on the MEA website news box. The MEA Ramsay Research Fund is currently funding another study at the University of Newcastle to examine muscle energy metabolism in ME/CFS patients. More information can be found in the research section of the MEA website.

MRC: NEXT STEP FORWARD

There are a number of ways in which the MRC can help with a research agenda, in addition to providing finance for good new research proposals. So the next step forward in relation to ME/CFS will be for the MRC Expert Group to meet early in 2010 to discuss the content of this research workshop, along with the conclusions and recommendations that were produced during further discussion on defining research strengths and priorities on the second day.

Personal note

On a personal note I would like to add that while I have been extremely critical of the MRC in the past I believe that Professor Stephen Holgate, who is leading this ME/CFS initiative, is genuinely determined to take forward the biomedical research that the patient population, along with many doctors and researchers, believes is so vital if we are going to find effective forms of management for ME/CFS.

Membership of MRC Expert Group on ME/CFS Research

Professor Stephen Holgate (Chairman)
Professor Jill Belch
Professor Philip Cowen
Dr Esther Crawley
Professor Malcolm Jackson
Dr Jonathan Kerr
Professor Ian Kimber
Professor Hugh Perry
Dr Derek Pheby
Professor Anthony Pinching
Dr Charles Shepherd
Sir Peter Spencer
Dr Rob Buckle (MRC)
Dr Joanna Latimer (MRC)
Dr Charles Shepherd
Hon Medical Adviser, ME Association

23 November 2009

Update from Benefits and Work’s Steve Donnison

Shortcut: http://wp.me/p5foE-2pX

Benefits and Work

www.benefitsandwork.co.uk

FINAL NEWSLETTER AND UNMISSABLE HALF-PRICE OFFER

This is the final newsletter in the No More Benefits Cuts Campaign. We will be deleting all the email addresses from this list on Friday afternoon.

However, if you want to stay informed about government plans for DLA and AA there are details of how to sign up for our free fortnightly newsletter below.

Also below is an unmissable half-price offer on membership of Benefits and Work, exclusively for subscribers to this newsletter.

WHAT YOU HAVE ACHIEVED

Within hours of our announcing our 100 days campaign, news of the danger to DLA and AA spread across the internet on blogs, forums and social networking sites and you began to make your voices heard.

Contributions to the Big Care debate website went from a few hundred to over 4,000, almost all hostile to the plans for disability benefits.

Many disability charities were unaware of, or reluctant to admit, the existence of the threat. But a deluge of emails from you made them realise that they had no choice but to respond to the green paper.

Almost 22,000 people signed a petition protesting against threats to DLA and AA on the No 10 website – the petition remains open until 7th December.

Virtually every MP in the UK received faxes and letters from you expressing your anger and concern.

Motions criticising the attack on disability benefits were laid before the Scottish and Welsh assemblies.

Questions were asked about the future of DLA and AA in debates in the House of Lords and the House of Commons.

Lord Ashley of Stoke warned that “any attempt by the Government to withdraw these benefits, or any benefits at all, will be very strongly resisted by disabled people, by their organisations and by many Members of both Houses of Parliament”

The Conservatives announced that they would oppose plans to incorporate AA into funding for the National Care Service.

Forced into the open by the growing clamour, Health Secretary Andy Burnham announced that he had ‘heard the concerns and worries about disability living allowance’ and “I can state categorically that we have now ruled out any suggestion that DLA for under-65s will be brought into the new National Care Service.”

So, in just one hundred days, and with no support whatsoever from claimant- bashing tabloids, you have forced the government to rule out any hopes it had of snatching DLA for under-65s to fund the National Care Service.

And you’ve also finally forced them to disclose, even if only by omission, that DLA for people aged 65 and over, as well as AA, is still under threat.

All this whilst proposals are still at the green paper stage, when ministers would normally expect only a few professionals and specialist organisations to even notice their existence, let alone express an opinion.

WHAT HAPPENS NEXT

We hope that all the disability charities that took part in the green paper consultation will publish their responses online. Perhaps you could encourage any charity with which you have a connection to do so?

If they don’t, we will be making freedom of information requests for copies of their submissions.

Aside from that, it’s now largely a question of waiting to see what is in the white paper, if it is indeed published early next year.

We don’t yet know what role – if any – Benefits and Work will have if the white paper poses a serious threat to disability benefits. We’re hoping that disability charities will show real determination and leadership in their opposition to any proposed cuts and that we will be irrelevant.

If not . . . we may be back.

HALF-PRICE MEMBERSHIP

When we began this campaign we were repeatedly accused by individuals and organisations of inventing the threat to DLA in order to make a profit. In truth, as we’ve discovered in the past, campaigning costs us money.

In fact, whilst this campaign was at its height, subscriptions to the site actually fell.

The reason is simple: most individuals and agencies subscribe to the Benefits and Work website when they have a specific benefits problem that needs a solution, not to support a cause. Campaigning takes up a huge amount of time that we would otherwise devote to producing and promoting new material that helps people solve those problems. Less new DLA, IB and ESA material means fewer new subscribers.

So, we offer no apologies whatsoever for making an offer to readers of this newsletter who perhaps haven’t got an urgent benefits problem now, but foresee the possibility arising in the next year and who would like to become part of the Benefits and Work community:

Subscribe by Paypal before 5.00pm on Friday November 20th and get a year’s subscription for £9.25 – less than half the standard price of £18.55.

To take advantage of this offer, register with the site, if you haven’t already. Then log in, click on the New subscription link on the left hand side of the page and type the following code in the coupon box:

ind6254

If you’re an existing subscriber and want to take advantage of this offer, you can extend your current membership by another year using the same code. But please drop us an email to tell us you have done so, so that we can make sure the software has added the extra year to your subscription.

Visit the Join us page to begin the process:

http://www.benefitsandwork.co.uk/join-us

PROFESSIONALS ONLY

We’re also offering a reduction to organisations who subscribe to this newsletter.

Purchase your organisational subscription by Paypal before 5.00pm this Friday 20th November and get a year’s professional membership for £60 instead of £93, using the following code:

prof3574

Existing professional subscribers can extend their current membership by a year using the same method – again please email us to let us know you have done so.

This offer applies only to Paypal payments – which can be made using any credit or debit card – we can’t accept payment by invoice for this offer.

Visit the professionals subscription page to begin the process.

http://www.benefitsandwork.co.uk/join-us/professionals

FREE NEWSLETTER

We provide a completely free email newsletter which we now publish every fortnight. It covers all the news relating to incapacity and disability benefits and will keep you up-to-date with what’s happening in relation to the National Care Service. You can sign up for it by typing your first name and email address into the boxes on this page:

http://www.benefitsandwork.co.uk/free-newsletter

And that’s it.

Many thanks for the literally thousands of letters, emails and phone calls offering support and information we’ve received over the last 100 days. It’s been a real privilege to hear from – and campaign with – so many people who aren’t prepared to be pushed around by politicians.

Good luck,

Steve Donnison

Benefits and Work Publishing Ltd
www.benefitsandwork.co.uk
Company registration No. 5962666

POST YOUR NEWS

Finally, remember that you can post your news in the Benefits and Work forum, if you’re a member, at:

http://www.benefitsandwork.co.uk/forum?func=showcat&catid=13

and/or in the free welfare watch forums at:

http://welfarewatch.myfineforum.org/index.php

You can also keep up with news about opposition to the green paper at the Carer Watch campaign blog:

http://carerwatch.com/cuts/

Unfortunately, we’re getting so many emails on this subject that we are unlikely to be able to respond individually. But we do appreciate hearing your news and views and we do encourage you to publish them for others to read on the forums detailed above.

Press release from the GMC as “Licence to Practise” for doctors is rolled out.

Shortlink: http://wp.me/p5foE-2pP

GMC

http://www.gmc-uk.org/news/4980.asp

More than 218,000 doctors now have a Licence to Practise

Press Release

16 November 2009

Doctors in the UK are making history today as the biggest change in medical regulation since the first medical register was published 150 years ago is rolled out. The successful start to licensing is a major milestone towards the introduction of revalidation.

[Pull quote]

Professor Peter Rubin, Chair of the GMC From today in order to practise medicine in the UK, a doctor will have to be registered with the GMC and have a licence to practise.

218,153 doctors have a licence to practise in the UK. Professor Peter Rubin, Chair of the GMC explained: “The successful start to licensing is a major milestone towards the introduction of revalidation, a new process by which doctors will have to regularly demonstrate to the GMC that they remain up to date and fit to practise in the job they do.” Chief Medical Officer Sir Liam Donaldson said: “I welcome the introduction of the licence to practise by the GMC. It is an important prerequisite for the introduction of revalidation, and a clear signal that revalidation is on its way. “I congratulate the GMC on its successful communication with the profession about this important change, with a  97% response rate from doctors on whether they wish to take a licence or not.” Licensing has implications for patients, doctors and their employers:

Patients

. The law requires that any doctor who treats patients must be registered with a licence to practise
. Only doctors registered with a licence to practise can write prescriptions or sign death certificates
. Doctors who hold registration but not a licence are more likely to be working as an academic or outside the UK, for example, but cannot undertake any of the activities for which the law requires them to hold a licence to practise.

Doctors

. A doctor must have a licence in order to legally practise medicine; being registered with the GMC is no longer enough.
. A licence to practise will give a doctor practising in the UK the legal authority to write prescriptions, sign death certificates and exercise a wide range of other legal ‘privileges’. This applies to all doctors working in the UK, whether working in the NHS or the independent sector, either on a permanent or locum basis.

Employers

. Employers of doctors must ensure that the doctors they employ have a licence to practise if their work requires them to do so.

If anyone has any queries about the licence to practise they can contact the GMC on licensing@gmc-uk.org or
visit http://www.gmc-uk.org/doctors/licensing/faq/index.asp  for our Frequently Asked Questions (FAQs).

-ENDS-

For further information please contact the Media Relations Office on 020 7189 5454, out of hours 020 7189 5444, fax 020 7189 5401, email press@gmc-uk.org, website http://www.gmc-uk.org.

Notes to Editors:

1. The use of the title ‘doctor’ is not protected in law to those who hold a medical qualification. The title can be used by any doctor included those who have retired or who are no longer practising. A doctor can sign passport photographs regardless of whether they hold registration.

2. It is illegal for anyone to present themselves as a registered medical practitioner, either with or without a licence, if this is not the case.

3. Anyone can check a doctors’ registration status on the GMC’s newly relaunched website http://www.gmc-uk.org/  and searching on the List of Registered Medical Practitioners (LRMP).

4. A doctor’s GMC reference number is issued when they first register with the GMC. This will not change if they hold a licence; and they will not be issued with any other number in respect of the licence to practise. The reference number is a unique identifier which enables anyone to confirm a doctor’s GMC status via the online Register or by telephoning the GMC.

5. Total number of doctors holding registration with a licence by UK country

England 167,173
Northern Ireland 6,111
Scotland 18,867
Wales 10,087

6. Total number of doctors holding registration with a licence in major cities and towns in England

London 37,043
Birmingham 7,121
Manchester 4,563
Bristol 3,454
Liverpool 3,233
Sheffield 4,658
Leeds 3,805
Nottingham 3,550
Leicester 3,340
Southampton 2,876
Brighton 2,370
Bath 1,170

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http://www.gmc-uk.org/doctors/register/LRMP.asp

List of Registered Medical Practitioners (The online Register)

This page provides information about our online Register, the List of Registered Medical Practitioners. This provides a list of doctors and their status on the Register.

Important information – licence to practise

On 16 November 2009 we introduced the licence to practise. From this date all doctors wanting to practise medicine in the UK need to hold both registration and a licence to practise. The online Register shows whether a doctor has a licence to practise. For more information on this recent change to the online Register please see our resource pack.
You can use the List of Registered Medical Practitioners to check details of all the doctors on the GMC’s register.

It gives details of:

the doctor’s reference number, name, any former name, gender
year and place of primary medical degree
status on the Register, including whether the doctor holds a licence to practise
date of registration
entry on the GP and Specialist Registers
any publicly available fitness to practise history since 20 October 2005
A leaflet is available to help patients understand why doctors have to be registered with the General Medical Council. This explains why only those doctors who are registered with the GMC with a licence to practise may treat patients by law. Please visit our patient information page.

RiME:  XMRV and MPs Referendum on ME Research

Shortlink: http://wp.me/p5foE-2pL

Permission to Repost

Campaigning for Research into ME (RiME)

XMRV and MPs Referendum on ME Research

In the wake of news on the XMRV virus [retrovirus], it might be an opportune time to write to those MPs who haven’t signed up to the MPs Referendum on ME Research. For more details and list of MPs who have signed see www.rime.me.uk

The article that was on the front and inside pages of the Independent is below. It should print off neatly on one page.

Below that is a letter that can be used as it is or as a guide.

Paul Davis rimexx@tiscali.co.uk

——————-

Front Page of  THE INDEPENDENT Friday 9 October 2009

Has Science found the cause of ME?

Breakthrough offers hope to millions of sufferers around the world

By Steve Connor Science Editor

SCIENTISTS SAY they may have made a breakthrough in understanding the cause of chronic fatigue syndrome – a debilitating condition affecting 250,000 people in Britain which for decades has defied a rational medical explanation.

MRC Research Workshop: Final Agenda

Shortlink: http://wp.me/p5foE-2pu

As I was in contact with MRC Corporate Information and Policy, today, I requested confirmation of the presenter on “Fatigue” at today’s meeting which had been listed on the Agenda as “tbc”.

I have been advised that it was not possible to secure a speaker for the proposed session on Fatigue, but that an Open Session was added towards the end of the day. 

A final copy of the Agenda was provided for my information. I am advised that this will be published on the MRC website, early next week.

Note that this is the 3rd Agenda that has been issued (on 19 November) and it supercedes the two previous files posted on this site and elsewhere.

Final Agenda provided on 19 November in PDF format: Final Agenda MRC CFS ME Workshop 19- 20 November 2009

APPG on ME: Agenda meeting 2 December 2009

Shortlink: http://wp.me/p5foE-2pq

The APPG on ME maintains a website here: http://www.appgme.org.uk

Agenda APPG for ME 2 Dec 2009

APPG agenda 02/12/2009

19 December 2009

The next meeting of the All Party Parliamentary Group (APPG) on M.E. will be held 3.15-4.45pm, Wednesday 2 December 2009 in Committee Room 15, House of Commons.

1. Welcome by the Chairman

2. APPG Report on the Inquiry into NHS Services

3. Speaker: Mike O’Brien MP, Minister of State for Health Services

4. Minutes of the last meeting

5. Matters arising

- APPG legacy paper (in preparation for the General Election)

- New research: murine leukaemia virus-related virus (XMRV)

- Accessibility of venues for future meetings

6. Welfare update

- Employment and Support Allowance

- Welfare Reform Bill

7. Any other business

8. Date of next meeting

MRC: Withholding List of Participants for MRC CFS/ME Research Workshop until after the event has taken place

Shortlink: http://wp.me/p5foE-2ph

Further correspondence, today, with MRC Corporate Governance and Policy.

Link back

MRC CFS/ME Workshop: Revised Agenda and response re request for List of Participants: http://wp.me/p5foE-2nu

Declaration of interests for the CFS/ME Expert Group: http://wp.me/p5foE-2nM

To: Rosa Parker, Head Office MRC
Sent: Tuesday, November 17, 2009 1:38 PM
Subject: Re: Freedom of Information Request: CFS/ME multi-disciplinary panel November Conference and Workshop

17 November 2009

Dear Ms Parker,

Thank you for your responses of 11 and 13 November 2009 which included a PDF copy and revised PDF copy of the Agenda for the forthcoming MRC CFS/ME Expert Group Research Workshop due to take place at the end of this week, on 19-20 November.

Thank you also for the provision of other information in response to three further questions that I had raised with you on 6 November 2009.

I have appended the two emails in which this information had been requested.

One request which remains unfulfilled and which had been requested under the Act, on 19 October, is

“2] A list of participants for this event”

Your response (13 November) has been:

“The MRC is intending to publish a list of participants for the workshop on the 19th and 20th November alongside the note of the meeting. This will be published on our website as soon as it is available following the workshop. I will send you a link to this information as soon as it is available.”

I am not satisfied with the decision to withhold the information requested under the Act until some point after the Workshop has taken place.

I am not satisfied that this part of my request for information has been handled properly because no reason(s) has been given for the decision not to provide this information to me under the Act prior to the Workshop taking place.

It is my intention to lodge a formal complaint through the complaints system, for which you have provided various options and contact details.

In order to take this forward, I should be pleased if you would provide the following:

a) An acknowledgement of receipt of this communication.

b) A reference number for my original request for information under FOIA of 19 October 2009.

c) The reason(s) for the decision not to provide this information under the Act at this point in time.

d) The specific clause(s) from the Act under which this decision has been taken.

Sincerely,

etc

[Previous correspondence appended]