Iron Maiden's Steve Harris

You have to admire the geezer who placed Avenged Sevenfold on the Twickers bill with headlining brit-rock gods Iron Maiden. For a start you have got the whole book of Revelations thing going on... “The Number of the Beast” versus “The Beast and the Harlot”. Then you have got the twin-lead guitar sounds of Gates/Vengeance versus Smith/Murray. Finally you get the blatant hero worship of Shadows & co for Dickenson & co that warms the very cockles of your sad old heart. “Maiden are by far the best live band in the world and their music is timeless” says Shadows, as AX7 prepares to cover the song ‘Flash of the Blade’ for Kerrang’s “Maiden Heaven” as a free tribute album [available Kerrang! Issue 1219]. Butf you think the similarities end there then just give the track ‘M.I.A’ off of the City of Evil album a woosh. Yes, the track has a bit of Wishbone Ash about it [is that why they played the Wishbone track Warrior off Argus on the tape during the interval at Twickenham?] and even a bit of Pink Floyd about it... but M.I.A. is, in essence, a very nicely turned piece of homage artwork dedicated by those skull-winged songsters to their favourite sounds i.e. the sounds of Maiden. Just listen to those Nicko McBrain tom-toms thumping - oops - no it was the Rev.

And so onto Maiden who (almost) filled the Twickenham RFU stadium [capacity 82,000] and admitted, on stage, that they were playing to the biggest crowd (in the UK) that they ever have. In fact, the East London Boys (OK, I know Bruce is from Nottingham) were keen to underline that 2008 is the biggest year for Iron Maiden yet. Yes, they have been ‘on the road’ for 25 years but they have now reached stellar proportions (although they promise they have not reached their zenith) claiming to be not only the biggest ‘metal’ band in the world but to be actually the biggest band in the world. And how many, in this millenium, can claim to travel to their venues in their own custom Boeing 757 ‘ed force one’ and play such grand stadiums? I would still like to say, on record, that Led Zep are probably still the worlds biggest band- but I have to admit that Maiden are more flamboyant and certainly more energetic. I cannot imagine Robert Plant jumping, running and wisecracking his way through a 69 date tour (Twickers was the 49th night of the tour and the Maiden boys were as fresh and presumptious as pair of Daisy Dukes box-fresh knickers ). Sorry Rob.

Lauren Harris band- old gent on left

Well what did you get for your fifty pounds sterling? (By the way, I met several fans who had travelled for 5 or more hours to get to the Maiden concert and the general feeling was that you needed to spend about £230 per head to enjoy the day).Well the concert started nicely with the Lauren Harris band -Lauren is the daughter of Iron Maiden bassist and founder Steve Harris. I saw Lauren Harris on a smaller stage at last years Hard Rock Hell (Minehead) and I was quite impressed. Her band has toured with the Led Zep-esque Ulster group ‘The Answer’ and also with the Dutch goth-rockers ‘Within Temptation’ (about whom I shall come onto in a moment) and the band comes across as a gutsy and polished pub rock outfit. At Hard Rock Hell I was kinda surprised at how old Lauern’s team-mates were and especially Mr Tom McWilliams, the drummer, who has played with ‘Glorious’ Estafan back in the ‘90’s and is a multi-grammy winner in his own right. These ‘old geezers’ could certainly knock ‘em out and gave the band a slightly more experienced persona than they might otherwise have managed to achieve if they were a bunch of student musos. My only general moan, at the Iron Maiden show, was the tight-fisted attitude of the Twickenham promoter who decided that the support acts couldn’t have the use of the stage-side TV monitor screens. Now I know that Maiden deserved to have the biggest soundz, the biggest lightz and the biggest buzz but who decided that the punters in the 82,000 seater only need to see ant-size musicians on the stage prior to the big act? In a sports stadium, when the football is being played, all the spectators have an equal chance of catching some action close up because they are all equi-distant from the pitch-side action. But when the stadium is turned into an event arena and the stage is up one end, almost every one of the spectators ‘misses out’ on the intricate moments. That is why they invented big TV screens. So we, the lowly punters, can kind of match up the ant-antics onstage with the human drama via the telly-viewer. And with a group like Lauren Harris who, to be honest, are more-or-less a fancy pub-rock outfit, it was always going to be that they seemed lost in that size arena without the use of the screens. It was a shame. And it was a tight-fisted oversight.

Sharon den Adel- Within Temptation

And so onto Within Temptation. These are a dutch symphonic rock group who share a similar sound to Evenescence or Nightwish. Sharon den Adel - Vocals- is amply supported by experienced rock guitarist Ruud Jolie (who admits that Iron Maiden is his main influence- and thus the connection) and her long-time boyf, Robert Westerholt. The groups harmonies and symphonic mastery were not helped by the stadium acoustics which were, to say the least, sporadically awful. There was a nasty wind blowing into the East Stand and this helped to give the aural illusion that the spectators were a few crucial seconds behind the events on stage. This is the kind of problem you always get with any out-door event. My tip is to see Within Temptation in a purpose built venue with proper acoustics to get the real sound. But all-in-all Within Temptation were a triumph especially because the mezzo-soprano skills of Sharon den Adel managed to cut through the air and the blacker more gothier riffs were picked up by the crowd who clapped and thumped along with vigour. And it was genuinely nice to see so many younger. delicate and more indie-emo orientated fans, who had only come to see their heroes Within Temptation, mixing it large with the big, burly hell-raising bruisers who make up the majority of the Maiden fan-base.

The Somewhere Back In Time set itself was a satisfying confection of everything we love and admire about Maiden. The event is nicely packaged to include the best of years 1980-1989 (Aces High, The Trooper, The Number of the Beast, Run to the Hills, Can I Play With Madness) but there were also some moments of sheer brilliance and exhilaration and, for me, the high point both visually and musically was the Steve Harris penned number “Rime of the Ancient Mariner” (with words by Samuel Taylor Coleridge) from the fifth Maiden album ‘Powerslave’. This was sumptuously staged and was an emotionally powerful piece of music. Obviously, we had the big screens running for the big band. The whole stage was used, with various backdrops and crowd-pleasing animatronics, lots of lights, fog, banner waving and all manner of fizzes, whooshes and bangs. It was hard rock luxury.

Pompous? Yes. Overplayed? Yes. Majestic? Yes.
But what the hell, that is what stadium rock is all about.

Avenged Sevenfold's M Shadows

http://www.myspace.com/laurenharrisuk
http://www.myspace.com/withintemptation
http://www.myspace.com/avengedsevenfold
http://www.ironmaiden.com/

Check out ADPONTES for all your reviews, articles, gig-guides and news

RiME   Campaigning for Research into Myalgic Encephalomyelitis

Update on issues with Minutes of APPG Meeting 12/7/07: Latest...

RiME wrote a detailed letter to the APPG Chair Des Turner 8/11/07 re. the mintues of the 12/7/07 meeting ( www.erythos.com/RiME  APPG Meetings, July '07 Meeting), with copies to Heather Walker (AfME) and Tony Britton (MEA), complaining that what I said 12/7/07 was not reported or reflected accurately.

12/7/07 I read out statements from five Group leaders in England, condemning the clinics in their areas (this was corroborated by three attendees); two of the comments (Kent + Birmingham) were omitted altogether, and the rest of what I said was not reported accurately. There was also the matter of the Chair's remark, 'The Chair noted that the views of Mr Davis... did not seem to reflect those of the majority'. Four attendees (three of whom were taking notes) do not recall this.

Des Turner replied to the above letter on 16/11/07:

"... I am sorry you did not feel that the minutes gave a full and accurate report of the points you made. The minutes are not intended to provide a verbatim record..."

Tony Britton [Ed: MEA secretariat to the APPG on ME] replied on 14/11/07:

"Thanks for showing me this. I've just reviewed my notes. The minutes look fine to me - adequately reflecting what went on at the meeting."

Heather Walker did not reply to RiME, but wrote to one of our supporters in Kent on 7/1/08:

"... As the person who drafted these minutes can I say that I stand by what I wrote 100% - and that I work very hard to try to ensure balanced reporting..."

At the beginning of the 22/1/08 Meeting, I challenged the minutes. It was agreed to amend the reporting of what I said; according to the official minutes of that meeting, 'Heather Walker apologised for omitting mention of two of the five leaders... ' (I don't recall hearing this, nor did Joy Birdsey and another person who were taking notes); but the Chair's comment stayed in.

In a letter dated 5/6/08 Sir Peter Spencer [CEO AfME] wrote to one of our supporters in Scotland:

"... At the next meeting of the APPG, which was held in January, we apologised for omitting mention of two of the five group leaders to whom RiME referred in their statement. The omission was not deliberate..."

So, are we satisfied now? No, not entirely. We don't feel that the Secretariat for the 12/7/07 meeting (AfME) responded appropriately to people's concerns prior to the last meeting 22/1/08: RiME's letter wasn't answered; and in the above reply to Kent Ms Walker says she stood by what she wrote 100%.

Have the minutes been amended at the Charities' end?

MEA Website: the 12/7/07 minutes, which I ran off 17/6/08 (can't seem to find them on their website this week), appear to be the same as they were when published by AfME 2007.

AfME Website: having checked this week there seems to be nothing about the 12/7/07 or 22/1/08 Meetings; the APPG Minutes page seems to cut off at the May '07 Meeting.

[Ed: This appeared to be due to a temporary technical glitch.  I had the same problem but the page in question did load in full after a protracted delay.]

Accordingly, RiME has written to Ms Walker (AfME) 26/6/08:

"... RiME wrote to Des Turner MP, you and Tony Britton (MEA) 8/11/07 about inaccuracies in the official minutes of the 12/7/07 APPG Meeting. The other two replied, you didn't. ME parties, especially ones in Kent and Birmingham, feel you should have replied and made more of an effort to sort the situation out.

"You wrote to a person in Kent 7/1/08:

.... As the person who drafted these minutes can I say that I stand by what I wrote 100% - and that I work very hard to try to ensure balanced reporting....

But Sir Peter Spencer wrote 5/6/08:

... At the next meeting of the APPG, which was held in January, we apologised for omitting mention of two of the five group leaders to whom RiME referred in their statement. The omission was not deliberate...

Do you still stand by your 7/1/08 statement to the Kent ME patient?

This letter will be put in the public domain...

RiME has also written to Sir Peter Spencer AfME 26/6/08:

... Your comments please re. the enclosed letter (letter to Heather Walker 26/6/08 - ed.).

Since there seems to be nothing on your website re. the minutes of the 12/7/07 APPG Meeting (and the last one), it is not possible to see if the necessary amendments have been made. Are you aware of this?

This letter will be put in the public domain...

_______________________________________________

NB A number of letters were sent in. Here is one by the leader of Kent ME Network 8/1/08:

Dear Dr Turner,

... At the last APPG meeting, Paul Davis of RiME read out the following statement on behalf of the Kent ME Network:

‘Sarah Gould wrote to you on June 15 2007 saying ''I attended the CBT clinic in Maidstone ...it offers nothing to those with neurological conditions like ME ... members feel that the money would be better spent on biomedical research...''

Could you tell me why this statement was not included in the official minutes? This is what he reportedly said:

‘Paul Davis read out a letter from the Norfolk Group which listed dissatisfaction with CBT-led specialist services amongst local support groups in Norfolk, Manchester, Winchester and Eastleigh, adding that money would be better spent on biomedical research'.

There was no mention of the much maligned Kent Clinics, and members of our Group are extremely upset that their views were not recorded in the official minutes. Some wanted to attend the meeting, but were unable to do so due to the nature of the illness.

I request that the minutes be amended accordingly.

I have yet to receive a reply to my letter of June 15 2007 regarding the clinics, and I look forward to hearing from you on each of these issues...

cc Heather Walker AfME, Tony Britton MEA

______________________________________________

Paul Davis

rimexx@tiscali.co.uk  

www.erythos.com/RiME

Minutes APPG January 2008 PDF  APPG Minutes Jan 08

Text version

All Party Parliamentary Group on M.E.

Chair: Des Turner MP
Vice-Chairs: Andrew Stunell MP
Tony Wright MP
Secretary: Ian Gibson MP
Treasurer: David Amess MP

Minutes of the meeting of the All Party Parliamentary Group on M.E. held at 4pm, Tuesday 22 January 2008

Committee Room 17, House of Commons

PRESENT

Dr Ian Gibson MP (acting chairman for the meeting)
The Countess of Mar
Kerry McCarthy MP
Andrew Stunell MP
Tony Wright MP

Matt Maguire (Office of Dr Des Turner MP)

Sir Peter Spencer, Action for M.E.
Heather Walker, Action for M.E.
Dr Charles Shepherd, ME Association
Tony Britton, ME Association
Mary-Jane Willows, Association for Young People with ME
Jane Colby, Young ME Sufferers Trust
Doris Jones, 25% Group
Christine Harrison, BRAME
Sue Waddle, ME Research UK
Barbara Robinson, Suffolk Youth & Parent Support Group
Paul Davis, RIME
Joy Birdsey, Kent and Sussex Alternative Group supporting RIME
Bill Kent, ReMEmber
Colin Barton, Sussex and Kent ME/CFS Society
Jill Piggott, Worcester ME Support Group
Natasha Posner, Warwick University RCN Research Institute
Janet Taylor, Kirklees Independent ME Support Group
Augustine Ryan, person with M.E.
Angela Kennedy, carer of person diagnosed with ME
Annette Barclay, person with ME
Nigel Waddle, carer of person with ME
Jo Dubiel, person with ME
Lindsey Middlemiss, West Berkshire ME and FM Group and Reading area ME Group.

One illegible signature.

1. Welcome

Dr Ian Gibson took the chair in the absence of Dr Des Turner, giving Dr Turner's apologies. He said Dr Turner was hoping to be called to speak in a debate on the Energy Bill. He offered to turn the chair  over to former APPG chair Tony Wright MP, but Mr Wright declined.

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2. Apologies

Anne Begg MP, Lord Bilston, Peter Bottomley MP, Tom Brake MP, Tony Cunningham MP, Andrew Dismore MP, David Drew MP, Andrew George MP, Linda Gilroy MP, Clive Efford MP, Mike Hancock MP, Oliver Heald MP, Charles Hendry MP, Jim Hood MP, Kelvin Hopkins MP, Dr Brian Iddon MP, Lynne Jones MP, John Leech MP, Chris Mullin MP, Mike O'Brien MP, Eddie O'Hara MP, Bill Olner MP, Rudolf Vis MP, Betty Williams MP, Hywell Williams MP.

In answer to a question from Janet Taylor (Kirklees Independent ME Support Group), Dr Gibson said she would certainly have an opportunity to be heard later.

3. Minutes of the last meeting:

Paul Davis (RIME) complained that the minutes of the last meeting failed to report, or even reflect accurately, what he said at the meeting on 12 July 2007. He had read out comments from five group leaders who each condemned the NHS services in their areas. Two of the five (Kent and Birmingham) were not mentioned at all; the other three comments were inaccurately recorded. Mr Davis said his remarks were corroborated by three other attendees and had been sent to the Chair and to the secretariat. He called for the minutes to be amended. Mr Davis said he did not recall the chairman saying he noted the views of Mr Davis and then adding that they did not reflect the views of the majority present.

Heather Walker apologised for omitting mention of two of the five leaders. Otherwise, she stood by the minutes.

The Countess of Mar pointed out that this meeting was scheduled to last for only an hour and a half. She urged people should move on.

After further discussion, Dr Gibson suggested that the meeting vote on whether the minutes should be amended. At this point, Angela Kennedy then drew attention to a petition she and Ian Mclachlan had raised about the NHS services. She proposed that it be entered into the record. This was seconded by Joy Birdsey.

Paul Davis said the last meeting had not been the first time that RIME's comments had not been accurately reported or reflected. In July 2006, for instance, RIME's comment had been reduced or diluted and important details omitted all together. Several observers believed that the minutes were being manipulated, with MPs misled on important issues such as services.

Lindsey Middlemiss (representing the Berkshire ME Support Groups) said she agreed that controversial topics should not be omitted from the minutes. Colin Barton (Sussex and Kent ME/CFS Society) objected to time being spent on the issue;  there was more important business on the agenda.

Tony Wright MP said the APPG had been set up to put ME on the government's agenda. There were many issues that needed to be focused upon and the need for continued involvement of MPs; if there were criticisms, they should be made through one's own MP.

Annette Barclay said she had attended the last meeting where there had been a loss of control over the discussion. She, too, had not heard the words attributed to Dr Turner in the minutes..

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At this point, Angela Kennedy moved her motion. On a show of hands, the result was 14-0 in favour of the motion being recorded in the minutes.

Angela Kennedy statement

We are a group of individual people suffering from or closely connected to someone suffering from Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome; an illness classified as neurological by the World Health Organisation's ICD-10  under code G93.3. We advise the APPG today of the following:

From the evidence available, it has become apparent that the majority of NHS 'CFS/ME' clinics do not adopt a suitably biomedical approach towards M.E. sufferers. Instead, these clinics inappropriately focus on a Cognitive Behavioural Therapy approach, some combined with Graded Exercise Therapy approaches, neither of which has been shown to be effective treatments for M.E. sufferers, and for which there is evidence of potential risk to patients from both treatments,

We advise you that, by not focusing on a biomedical approach to diagnosis and treatment/support, and by focusing on controversial psychosocial treatments, such clinics are causing M.E. sufferers to be put at risk, both physically and psychologically. We therefore feel the approaches of these clinics are inappropriate for M.E. patients,

In addition we remind the APPG of its duty to safeguard the interest of ME sufferers, and ask that it immediately clarifies its ambiguous position of supporting the setting up and continuation of the CFS/ME clinics - especially as that support is also being given on the extremely vague pretext that they are "a base to build from", despite all evidence to the contrary. We also remind the APPG that their remit is to support only the WHO code G93.3 of ME/CFS, and therefore believe an unequivocal position of insistence on only a biomedical approach should have been taken from the outset.

We trust that the APPG will now acknowledge that there are, within the ME/CFS community, serious concerns about and objections to the approaches of the majority of the NHS 'CFS/ME' clinics, and have this formally entered in the minutes.

The statement carries the names of 504 people.

While the APPG waited for the main speaker - Ann Keen MP, Parliamentary Under Secretary of State for Health Services - Dr Gibson departed from the agenda to proceed with remaining business.

3. Matters Arising

NHS Services: Sir Peter Spencer (Action for ME) said AfME was conducting a survey among Strategic Health Authorities to establish how plans for NHS services for ME/CFS were faring in England. There had been 13 responses so far, with nine indicating various levels of uncertainty.

Lindsey Middlemiss said there were no NHS services at all in Berkshire. Barbara Robinson mentioned the declining provision in East Anglia. Charles Shepherd (ME Association) said MEA had prepared a questionnaire to be completed by clinical leads to establish the level of provision in new services: this has been trialled in

4

Portsmouth. Dr Shepherd also tabled a 'hot topics' briefing paper on behalf of the MEA.

Janet Taylor said Kirklees Independent ME Support Group was meeting with Kirklees PCT to establish a clinical pathway for an ME/CFS service in the area, though no conclusions had been reached. Christine Harrison (BRAME) said continuing shortfalls in provision should be brought to the minister's attention. Mary-Jane Willows (Association of Young People with ME) said the continuing lack of NHS paediatric provision in many geographic areas should also be raised.

Adjournment debate and revised Early Day Motion: Dr Shepherd reported that John Bercow MP had not been successful in achieving an adjournment debate in the December ballot. He would try again, when the opportunity arises. Ian Gibson suggested that it may be useful to prepare another Early Day Motion, this time concentrating on services. He would be available to table one, if necessary.

DWP Guidance: Tony Wright said more people with ME were being turned down for benefit than any other illness and more people were winning on appeal. This had been a constant concern of the APPG over the years. It was important to have another meeting with a DWP minister.

In answer to a question from Natasha Posner who wanted the revised DWP guidance to be raised with Ann Keen because of the probability that it would reduce the number of DLA awards to people with ME, Dr Gibson suggested that a minister from the DWP would more appropriate. Dr Shepherd said that, without any DWP statistics to go by following the introduction of the guidance in July 2007, all we have are continuing anecdotal reports; more information on benefit problems was really required before asking a DWP minister to return to the APPG. It was decided to consider arranging a meeting with the DWP  to discuss continuing concerns.

Occupational Health Guideline: Dr Shepherd reported that Dr Ira Madan, director of NHS Plus, had written back to the ME Association on January 11 to say she was considering the points made in the joint charity response submitted by the MEA. The three leaflets would be revised. Sir Peter Spencer said he hoped that the amendments would meet the concerns and objections that had been expressed.

NHS Collaborative Conference: Sir Peter Spencer and Mary-Jane Willows gave a positive report on this conference at Milton Keynes, about which concerns had been expressed at the last APPG. Sir Peter said the inadequate evidence base had been discussed at the conference, and the conference had completely debunked the myth that AfME was not interested in seeing more biomedical research.

4. Any Other Business:

With no sign of the Minister, Dr Gibson felt the meeting should move on and agree a small number of points that should be raised in the limited amount of time we would have with Ann Keen and what we should ask for at the end in order to keep the momentum going - otherwise we would miss a marvellous opportunity to contribute to government policy-making.

It was decided to concentrate on the issue of NHS services, in particular problems with existing services (ie financial difficulties and closures following the end of the Department of Health ring fenced funding) and new services that are being introduced or proposed following the NICE guideline (ie early indications that PCTs may be opting for services that are not physician-led, offer no diagnostic service, and

5

concentrate on CBT and GET). And, as Lord Darzi would be completing his work on the long-term neurological conditions chaper of his NHS review shortly, we should be seeking an urgent meeting with him to discuss ME services.

Dr Gibson also suggested that the time may have come for the government to appoint an 'ME Tsar' who can deal with all issues relating to ME - in the same way that high profile diseases such as cancer and heart diseases have their own government health tsars.

Jane Colby (Young ME Sufferers Trust) presented an unpublished paper by Dr David Sampson PhD that contained a critical evaluation of some of the research input that comes from psychiatry. She asked for the paper to be presented to the Minister and this was agreed.

Paul Davis moved the amendment of the Minutes of the last meeting as per item 3. This was seconded by Annette Barclay. On a show of hands, there were three votes for the motion but it was lost by a large majority. Mr Davis said that, if the Minutes were not corrected, he would complain to the Parliamentary Commissioner.

The Minister arrived for the meeting at 5.09pm - accompanied by Dr Chris Clough, a consultant neurologist at King's College Hospital, who is also member of the External Reference Group for the National Service Framework in long-term neurological conditions.

5. Presentation by Ann Keen MP, Parliamentary Under Secretary of State for Health Services:

The Minister said she had worked for 25 years in nursing - much of the time spent in the community with people who had neurological and long term conditions. She said she accepted without reservation that ME was a neurological disease, and  referred to it as such several times during her address.

Mrs Keen said she understood and sympathised with many of the well-known problems facing people with ME. These included: unsympathetic  doctors; lack of medical education of ME; the need for early diagnosis; good quality management that covers all aspects of the illness; and research, or lack of it, including the need for better epidemiological data so that health providers know the full extent and severity of the problems.

Lord Darzi, her ministerial colleague in the Department of Health, was working on his review of NHS services, and planning to sign off the section of long-term conditions shortly. Mrs Keen said she thought it would be very useful for the APPG to feed into that review and offered to facilitate a meeting with Lord Darzi. The Minister  said she could not guarantee an appointment with Lord Darzi "but as good as".

Mary-Jane Willows (putting a question on behalf of Sir Peter Spencer, who by this time had left the meeting to catch a train to Scotland where he was due to attend the Cross Party Group the following day) asked how the Government remained accountable for the consequences of decisions delegated through strategic health authorities to primary care trusts? Care commissioners inside PCTs were being forced to make choices because of funding restraints. In many cases, specialist ME services were not getting a look in; as a result, service provision overall was patchy.

6

On behalf of the Association of Young People with ME, Mary-Jane Willows said paediatric provision was geographically restricted. Two of the 11 specialist paediatric services in England had closed in the past year, which meant there were fewer services that could intervene quickly and effectively to prevent some of the worst child care abuses. The infrastructure to support families at times of crisis was not properly in place.

Charles Shepherd said the problems stemmed from 2003, when the first service had been set up with £8.5m ring-fenced funding. In July last year, for instance, Dr Terry Mitchell had told the APPG how his own service in East Anglia had come under immense financial pressure even before his own retirement from the NHS. The MEA was attempting to obtain feedback about the level of provision in any new  services through a questionnaire designed to be completed by the clinical lead.

Christine Harrison (BRAME) said she was mother and full-time carer of a daughter who had been affected by ME for many years. ME had a multi-system effect and affected people in a myriad ways; simply assigning them to CBT/GET treatment centres was not good enough.

At this point, Dr Gibson had to leave the meeting because of a prior commitment. He invited Kerry McCarthy MP to take the chair for the last few minutes, which she did.

The Minister said she would be happy to stay on and take a few more questions and comments.

These included: a statement that the existing services had seen 23,000 patients so far but more services were needed to cater for demand; the lack of services in Portsmouth, where people with ME felt abandoned by the NHS; and the proposed service in Kirklees, West Yorkshire, where the impetus had come from a rise in the number of neurological referrals.

Annette Barclay said she had suffered from ME for 20 years. Medical recognition of her ME as a neurological condition had diminished, not improved, over that time. Never had she been more consulted and felt less listened to in her life. Sue Waddle (ME Research UK) agreed that recognition had become much worse in that time.

Dr Chris Clough said he was sorry to hear Annette Barclay's story. He acknowledged that there was a problem with the training of doctors, who had not given enough consideration and respect to patients with ME, and it was time to put that right.

Annette Barclay added all the doctors with experience of ME were retiring or dying. Barbara Robinson said the NHS Plus and DWP guidelines were - at national policy level - just two examples of failure to acknowledge neurological causation.

Jane Colby pressed for the central collection of statistics for ME. Until they were available, the actual size of the problem would never be known.

The Minister said the important topic of child abuse was the subject of much work across  departments nowadays - with Kevin Brennan MP in the Department for Children, Schools and Families leading on ministerial co-ordination.

She said was also time to improve the medical profession's perception of ME and other longterm neurological conditions; more work needed to be done in this area. She expected the Darzi Review to address these issues.

At this point, Kerry McCarthy drew the meeting to a close by thanking the Minister for her attendance. There was applause for Ann Keen and Dr Clough.

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6. Date of the Next Meeting.

To be arranged.

The meeting closed shortly after 5.30pm

Ends

The next meeting of the All Party Parliamentary Group on ME will take place on Wednesday, July 2 - when there will be a presentation on child protection issues affecting families where there is a young person with ME.

The meeting will be held in Committee Room 19, House of Commons, between 1 and 3pm.

The meeting will be open to members of the public. Before they travel, visitors should check announcements at the Action for ME and ME Association websites as the meeting room may change at very short notice if it is required by a parliamentary committee.

The presentation on child protection issues will be given by Jane Colby, executive director of the Young ME Sufferers Trust, and Mary-Jane Willows, chief executive of the Association of Young People with ME.

The Minister responsible for these issues in the Department for Children, Schools and Families, Kevin Brennan MP, has been invited to attend.

The meeting will also be the group's AGM when officers are elected for the coming year. Several other important issues for people with ME and their families will also be on the agenda.

Entrance to the meeting will at the St Stephen's Door to the House of Commons, and then ask the way to Committee Room 19. Please allow sufficient time in case there are big queues waiting to go through the security gatehouse. There is separate access for people in wheelchairs.

Minutes of the last meeting of the APPG have also been published at the AfME and MEA websites.

Tony Britton
Publicity Manager, The ME Association
Home-based: 60 Broadgate, Weston, Spalding, PE12 6HY
Tel: 01406 370293 Mob: 07880 502927    Email  tbritton02@yahoo.com

ME Association website

Some information finally emerges...

It's over four months now since the last APPG on ME meeting was held, on 22 January.

This meeting had been attended by Ann Keen MP. It was announced in July 2007, that Ms Keen, the new Parliamentary Under-Secretary of State at the Department of Health, had been given the job of overseeing the Department's work on ME.

In the House of Lords, on Monday 2 June, Lord Darzi referred to Ms Keen's attendance at the January APPG meeting, during a short debate centering around several ME related issues initiated by an Oral Question from the Countess of Mar.

Read the Hansard transcript of this short debate here:

http://meagenda.wordpress.com/2008/06/03/countess-of-mar-house-of-lords-2-june-2008/

We have a situation where Health Ministers and members of the House of Lords are referring to statements made by a Parliamentary Under-Secretary of State during an APPG meeting which took place over four months ago, but where interested parties cannot review the Minutes of the meeting in question since the Minutes have still not been published.

Although both Vice-Chairs to the APPG were present at the meeting on 22 January, the meeting was chaired by Dr Ian Gibson, APPG Secretary, in the absence of the Group's Chair, Dr Des Turner.

Dr Gibson left before close of meeting and handed the chair over to Kerry McCarthy MP, who is not an Officer of the APPG on ME. It is my understanding that Ms McCarthy has not previously attended a meeting of this Group, but nevertheless, she was left, by Dr Gibson, to wind up the meeting.

No date or provisional date for a future meeting could be set by Ms McCarthy but Dr Gibson, as chair of the meeting, had not appeared to have given this any consideration before he departed.

Over the last four months, those making enquiries of the Officers of the APPG, that is to Dr Gibson and Dr Turner and also to the secretariat to the APPG, that is AfME and the ME Association, have met with either a wall of silence regarding the publication of Minutes and a date (or provisional date) for the next meeting or have been passed from pillar to post and back again.

The issue of the APPG on ME has become a hot potato.

As a result, and given the ambience at the last meeting and the tenor of comments made by Vice-Chair, Tony Wright, and by Dr Gibson, there has been much speculation about the current status of the APPG on ME and Dr Turner's intentions for the future of the Group and his continuing chairmanship of it.

ME issues are being raised and discussed in the House of Lords by members of the APPG on ME, such as the Countess of Mar, with Ministers such as Lord Darzi, during debates attended by patient charity organisation reps such as Dr Charles Shepherd and non registered organisations such as BRAME.

[Dr Shepherd reports that "Representatives from BRAME (Christine and Tanya Harrison) and The ME Association (Dr Charles Shepherd) were present 'Below the Bar' in the House of Lords on Monday 2 June to listen to a series of questions to Health Minister, Lord Darzi, on the subject of ME/CFS.]

Written Questions relating to ME are being raised by Dr Ian Gibson and Dr Des Turner in the House of Commons. But members of the ME community making enquiries of Dr Gibson, Dr Turner and the APPG secretariat in relation to the APPG, itself, have not been receiving responses. So just what is going on?

Is the focus shifting away from the discussion of ME issues at APPG meetings in favour of a select few raising questions in both houses of parliament witnessed by a select few?

Following discussions at the last APPG, the ME Association had been pushing for a meeting with Lord Darzi - this appears to have come to naught. And although Dr Shepherd finds time to smugly report that his own "pet" issue - that of the Royal College of General Practitioners - was given an airing in the House of Lords on Monday, he and his fellow board members and staff do not apparently have the time nor the inclination to respond to enquiries from their members and the wider ME community in connection with concerns about the future of the APPG.

So, in the absence of satisfactory responses from Dr Gibson and Tony Britton (who had taken the Minutes at the January APPG meeting) and with no response at all from Dr Turner, I telephoned Mr Britton, yesterday.

I established the following:

I have been advised by Mr Britton:

That draft Minutes are said to have been submitted to the chair, last week, for approval.

That arrangements are being made for the next meeting of the APPG to be held some time in the first two weeks of July.

That the Minutes of the 22 January meeting have now been approved by the chairman and that Mr Britton was passing a copy on to Dr Ian Gibson (who chaired the January meeting in the absence of Dr Des Turner) "as a matter of courtesy".

That Mr Britton anticipated that the meeting announcement and Minutes of the January meeting would be circulated by the end of this week.

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

A copy of the Minutes of the January meeting will be posted on this site as soon as they are available.

An Agenda for this proposed July meeting will also be posted as soon as an Agenda has been drawn up and issued for circulation.

It might be anticipated that a meeting proposed for early July will also serve as the Group's AGM and that no additional meeting will be called before Parliament breaks up for the summer recess.

Since no meetings were held between the last Group AGM in July 2007 and the meeting which took place on 22 January and for which Minutes are still awaited, under the Secretariatship of Dr Ian Gibson only two APPG on ME meetings will have been held during the entire 2007 to 2008 parliamentary term.

I recommend that all those who are in a position to do so attend this meeting should a date be announced. Previous AGMs have struggled to make a quorum. Let us hope that Dr Gibson, as Secretary to the APPG on ME, will be doing his utmost to ensure an adequate turn out of Officers and members.

Suzy Chapman

5 June 2008

Occhi di bimba sgranati
- chiaroscuri d'emozione -
ricolmi
(panneggi d'allegria)
rincorrono
note armoniche silenziose;
... e la mamma cantava.

A oriente donne ricurve
sollevano
albe di germogli odorosi,
del lavoro quotidiano
ondeggia il vocìo di storie comuni;
... e la mamma cantava.

Lost in the time
Harmonies floating around
Like a feather unbound
The sound of a chime
Sweet ringing surrounds
While the bass shakes the ground
Vocals start to climb
The harmonies are drowned
And sweetness is found
Then it dims
And the keys count down
Until an end is found

e la nostra popolazione ne è fiera

il suo nome è tricolore

e trasmette buonumore

il primo colore è verde prato

dove il gregge ha pascolato

bianco è il suo colore centrale

ed emette un bagliore speciale

ed in fondo un bel rosso

che scalda a più non posso

non è l'unico tricolore

ma per noi è il migliore

Questa è la poesia che Luca ha creato insieme a me :)

per me è proprio importante

Benché non scriva un post articolato

val bene la pena d'essere evidenziato

In una serata avara di scintille

solo un'idea viaggia a mille

In cuor mio vi voglio dire

che far senza di voi mi fa intristire

Il momento strano presto finirà

e l'allegria del bb tornerà

Vi saluto tutti con un abbraccio

e vado a nanna, che sono uno straccio...

Şcoala de română

Diafane d'azzurro
- occhi neri -
muovono veli e mantelli,
fantasmi tra le dune
delle proprie vite,
scrivono sabbie.

Granelli
rincorrono arabeschi
d'ocra aranciata,
rosati.

Venti modellano sabbie,
e linee d'orizzonte,
delineano anime senza confini.

Ne dam seama?
Este mama!

De sunteti vreodata
Tristi sau suparati,
Cine va saruta
Ochii-nlacrimati?

Ne dam seama?
Este mama!

Basme minunate
Cine povesteste,
Jucarii frumoase
Cine daruieste?

Ne dam seama?
Este mama!

Spun la fel iedul, mierliţa,
Orice pui ce vieţuieşte
Şi cu-atât mai mult fireşte,
Spun băiatul şi fetiţa.

Spun şi eu măicuţei mele
Si voi spune totdeauna:
”Mamă, tu eşti numai una,
Cum sunt soarele şi luna!”

Educatoarea.ro: Poezii de ziua mamei

Educatoarea.ro: Poezii de ziua mamei

Educatoarea.ro: Poezii de ziua mamei

Below are two letters:

1) The Referendum on ME Research which has been sent to all 646 MPs (after the Yes and No options were two boxes for MPs to tick. I was able to print it off that way but not commit a pdf version to file or cut + paste).

2) A supporting letter. It is preferable that people write their own letters, but please use the attached if you require assistance.

Good Wishes,

Paul Davis

Campaigning for Research into Myalgic Encephalomyelitis (RiME)

www.erythos.com/RiME

MPs Referendum on ME Research

Dear

April 2008

There are an estimated 240,000 people with Myalgic Encephalomyelitis (ME) in Britain. Of these, one quarter are severely affected, some to the degree that they are permanently bed-ridden, and cannot attend to basic needs; others, sadly, die. Apart from death and human suffering, there is also the matter of cost to the country. A study by Action for ME May 2006 estimated the cost at £6.4 billion per annum.

The World Health Organisation lists ME as a neurological illness (ICD 10 G93.3) and the following research shows abnormalities in groups of ME patients:

Muscle: Altered metabolism - Fulle et al., 2003; Vecchiet et al., 2003. Enteroviral sequences in muscle - Lane et al., 2003; Douche-Aourik et al., 2003. Abnormal response to exercise - Paul et al., 1999; McCully et al., 2004.

Brain: Metabolic abnormalities - Puri et al., 2002; Chaudhuri et al., 2003.

Vascular: Endothelial dysregulation - Spence et al., 2000; Khan et al., 2004. Altered brain perfusion - Costa et al., 1995; Tirelli et al., 1998. Orthostatic hypotension - Naschitz et al., 2002; Stewart et al., 2003.

Biochemical: Oxidative stress - Kennedy et al., 2003; Vecchiet et al., 2003. Dysregulation of anti-viral
pathways - De Meirleir et al., 2000; Tiev et al., 2003.

Gene Research: The ongoing research of Dr Jonathan Kerr has found (1) that there are seven subtypes (2) evidence of different clinical symptoms and severity for each subtype.

Please note that this research is either being carried out abroad or funded privately in the UK.

We are canvassing MPs' opinions on the subject and would be grateful if you would fill out the questionnaire below.

Yours Sincerely,

````````````````````````````````
MPs Referendum on Research into Myalgic Encephalomyelitis (ME)

Yes, I think the British Government should be funding research into the underlying physical causes and disease process of ME.

No, I don't think the British Government should be funding research into the underlying physical causes and disease process of ME.

Signature
``````````````````

Printed
``````````````````

Date
``````````````````

Please return to RiME,

10 Carters Hill Close,
Mottingham,
London, SE9 4RS
by May 31 2008

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

House of Commons
London
SW1A OAA

Dear

MPs Referendum on ME Research

If you haven't by now, you should shortly receive from RiME (Campaigning for Research into ME), the above document asking whether or not you think the Government should be funding research into the underlying physical causes and disease process of the neurological illness Myalgic Encephalomyelitis (ME). I urge you to tick the YES box.

In January 2002 the Chief Medical Officer's Report on CFS/ME recommended research into all aspects of CFS/ME, p.69:

6.5 Research

A programme of research on all aspects of CFS/ME is required.

Government investment in research on CFS/ME should encompass health-services research, epidemiology, behavioural and social science, clinical research and trials, and basic science.

In particular, research is ungently needed to:

Elucidate the aetiology and pathogenesis of CFS/ME....

Six years on the Government, to my knowledge, has not invested a penny in biomedical ME Research and I find this totally unacceptable.

ME patients (and their relatives) have paid billions into the Treasury coffers over the years. I wonder if you can understand why the former are desperately disappointed that the Government has not invested part of this money in biomedical research so they have the chance to recover and take up/resume a useful position in society?

Whichever choice you make, I ask you not to simply forward this letter to the Health Department. When this course has been taken, in the past, they have merely replied with the repetition of a statement which does not address the need for biomedical research but details how the Government is putting token amounts of money into psychiatric / psychological models of treatment, which have no scientific justification. I would prefer not to see another of these unhelpful responses. I look forward to hearing from you.

Yours Sincerely,

   Ce rămâne din ea , până la urmă ? O amintire .. vise nerealizate . Toalete epuizate . Anticoncepţionale uzate . Pupile dilatate . Gânduri deshidratate . Chiar aşa ? Nu pot decât a răspunde simplu , da ! Intestine pline cu ceva alb de la ultimul oral . Ciclu neapucat ! Destin ratat .. realizat . Demonul excitat .. Şi când îi şopteam că vrea s-o omoare . O durea la bască . Ne privim , nu apăsăm nicio tastă . Opuse , lacul şi marea , orezul şi sarea . Aberez , îţi lipseşte răbdarea . Dedic epuizarea , generaţiei de cacao ( la propiu ) . Pantaloni maro . Esofag cu viermi . Teatru şi moarte ! Cărţi aruncate . Viitoare decupate . Pardon , eu decupez al eu tendon . Ştiu că nu sună mişto , sunt tembel , dar n-am ghidon . Patinez pe caractere , tastatura plină de miere . Ciudat ! Bă , să mor , eşti un ratat ! ( cititorul impar , către naratorul , dincolo cu-n par ) . Scrii căcaturi şi pute . Sunt şmecher , o scriu , am sonorul pe mute . ( Să-ţi dau foc , cititor naiv . Pa ! ) . Error : " Not connected to wordpress , reader number xxx " .

   Dragostea ? Visele şi tentaţiile . Reciteşte ! Textul de mai sus . El degeaba boceşte . ( Bă fraiere .. m-am prins . Te dai în bărci că scrii în rime . Degeaba te caci pe tine ! ) . Şi ? Eşti penibil , laş şi accesibil . Stai naibii în banca ta şi nu mai comenta aşa . Prefă-te că e vina ta . Nu mai ofta . ( naratorul cu mâna pe .. tastatură ) . Demonul se distrează . El dansezează . Pe-un cadavru .. chiar dacă al ei prieten oftează . Urinează cu viermi , prin a ei cavitate bucală . Sărut-o acum băi Păcală . Că spui c-o iubeşti , o doreşti , atât investeşti . Că-i frumoasă ( era ) şi-o fraiereşti . E tot ea . Iubita ta . De ce întorci capul şi dai vina pe materie ? Pute a sens , evoluţie . Nu-ţi place revoluţia . Îndură ! Oase şi câteva paste . ( nu mai da "copy-paste" , nu la asta mă refeream ) . Ea ? ( da boule , ea ) . O ignori complet . Ejaculezi incoerent . În alta . Care pute a parfum de roze . E vie şi aveţi multe poze . Trădătorule . Iubeşte , doreşte , cu sens . De ce ?

RiME Referendum: Latest

The above has been prepared and is ready to go to all 646 MPs. The top part of the page presents a few facts about ME and the current state of biomedical research in the UK. Then lower down the page, MPs are invited to declare whether or not they think the British Government should be funding research into the underlying physical causes and disease process of ME.

In order to save on postage, the letters were going to be hand delivered to the House of Commons. However, shortly before Easter I learned that there would be a handling charge of 24p on each letter - meaning a total cost of around £160.

Having reflected on the matter, I have decided I will probably post the letters and, accordingly, put out a stamp appeal. I feel the best way of doing this is to ask people to pledge x number of 2nd Class stamps via email. If the greater number of stamps are pledged, I will then ask for the stamps in, and the project will proceed.

Please help.

Best Wishes, Paul

10 Carters Hill Close, Mottingham, London, SE9 4RS
rimexx@tiscali.co.uk 

www.erythos.com/RiME

NB I have considered doing this over the internet but decided against (1) I think one is likely to get a better response doing it through the post (2) I don't think it would mean any less work; it would involve keying in (and then deleting) 646 email addresses; I don't have a secretary to help.

Dar ligheanul supărat
Asfel l-a ameninţat:
Stai! Te-oi prinde eu Ionică,
Ce de apa-ţi este frică?

Şi Ionică fuge, fuge…
Şi ligheanul tot l-ajunge,
Şi mi-l spală drept în drum,
Cu apă şi cu săpun.

Mamica.ro