From Paul Davis RiME Campaigning for Research into Myalgic Encephalomyelitis
16 September 2010
APPG on ME Inquiry into NHS Service Provision for ME/CFS March 2010
There is a link to the full Report on the RiME Website, see NHS Services Inquiry folder.
The Report was signed by five members of the APPG on ME: Des Turner MP (Chair), Tony Wright MP, Andrew Stunell MP, Peter Luff MP, Lady Mar.
Note: The Committee on Standards in Public Life promotes, ‘high standards in the public sphere through the seven principles… ‘: they include: objectivity and honesty. Have these criteria been met?
In the Foreward P.3 Des Turner writes, ‘… The APPG accepts the WHO Classification of ME (ICD G93.3) as a neurological condition… ‘ However, if one flicks to the back of the Report, 14 out of the 24 sources refer to Government Reports (1), with the Royal College of GP’s Report, connected to CMO Report and NICE Guidelines, being used seven times; sources which are not about the illness described by G93.3. The Inquiry Group also received evidence from PCTs: but ME patients complain that clinics set up following the CMO Report are not about ME; the clinics in Kent, for example, exclude patients with neurological illness; so, is the evidence from PCTs accurate or relevant as far as ME is concerned?
The Terms of Reference say (P. 21):
…ME is classified as a neurological illness under the World Health Organisation classification (ICD G93.3). However the NHS largely uses the term Chronic Fatigue Syndrome instead of ME or else adopts the hybrid CFS/ME in diagnosing and treating patients. Terminology is a contentious matter. It has some bearing on this inquiry because to only use the precise WHO classification of ME above will impede access to information from the NHS that is crucial to the success of this inquiry…
Summary of MEA Board of Trustees meetings held in September 2010
This is a summary of key points to emerge from two routine meetings of The ME Association Board of Trustees.These meetings took place at our Head Office in Buckingham on Monday afternoon, September 6 and on Tuesday morning, September 7 2010. This is a summary of the Board meetings – not the official minutes.
The order of subjects below is not necessarily in the order that they were discussed.
Where appropriate, there is background information relating to the issue being discussed.
The final part of the summary also contains key points from the AGM held on Tuesday afternoon, results of trustee elections, and the post AGM Board of Trustees meeting.
PRESENT
Trustees:
Ewan Dale (ED) – Honorary Treasurer
Mark Douglas (MD)
Neil Riley (NR) – Chairman by telephone link.
Charles Shepherd (CS) – Honorary Medical Adviser
Barbara Stafford (BS) – Vice Chairman
MEA Officials:
Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager
Apologies:
Rick Osman (RO)
Janet Thomas (JT)
FINANCES, ADMINISTRATION, PREMISES AND STAFF
ED updated trustees on the current financial situation. This was followed by a discussion on the monthly management accounts for the period up to the end of July 2010. There has been a continuing drop in some areas of income during the first seven months of 2010 when compared to the same period in 2009 – unrestricted donations and bank interest in particular. As a result, general expenditure is still running slightly ahead of unrestricted income.
Income from fundraising has shown a continuing and welcome increase over the same period in 2009. In order to cope with the increased demand on fundraising support services a new part-time post to deal with fundraising administration has been created. Applications for the new post are now being considered.
There has also been a significant increase over the past seven months in the ring-fenced funding held by the Ramsay Research Fund.
Trustees reviewed the changes in banking arrangements, aimed at improving interest received on deposit accounts, that have been carried out in the past few weeks in relation to both unrestricted general funds and restricted research money held in the Ramsay Research Fund.
Trustees held a further short discussion on some possible changes to The MEA Memorandum and Articles of Association to take account of expected new charity legislation.
Trustees passed on their best wishes to Lucy Kingham at Head Office – who is taking maternity leave in September – and finalised arrangements for a temporary member of staff to cover her absence.
MEA TRUSTEES
Trustees had intended to spend part of Monday afternoon interviewing a potential new trustee but he was unable to attend. This interview was therefore postponed to a later date.
As reported previously, Janet Thomas had to withdraw from the 2010 trustee election due to ill health but will remain as an observer. It was agreed that she has been an excellent trustee and it is hoped that she will re-apply if her health improves.
We are still able to increase the number of co-opted trustees – so we are keen to hear from anyone who would like to discuss the possibility of joining the MEA in this role. Applications are welcome from people with ME, carers, and anyone who has a skill which they feel could be of benefit to the charity. In order to proceed with an application, non- members would have to become members of the MEA.
FORWARD PLANNING
A further short discussion on the future growth of the MEA was held on Tuesday. This work includes the expansion of the services we already provide and new services that we would like to provide if/when the financial situation allows us to do so.
FUNDRAISING INITIATIVES
The MEA has to raise funds on top of membership subscriptions, which currently only provide around half of the general income that is required to fund the basic running of the charity and Head Office administration. We are also facing a situation whereby people are reducing donations to the charity sector. At the same time, demand on support and information services is increasing, especially in relation to benefit and employment information now that the welfare/benefit reforms and difficulties associated with the introduction of the ESA are taking effect. Trustees and staff therefore have to devote a significant part of their time to boosting fundraising activities in order to maintain our current level of services.
Northern Ireland fundraising for ME/CFS research. Mid Ulster Vintage Vehicles Tractor and Car Club: Sponsored trek from Moneymore to Castlerock-Limavady
TB reported on the outcome of the Mid-Ulster Vintage Vehicles Club’s 100-mile vintage tractor and car trek, which this year has raised a substantial sum for the Ramsay Research Fund. The event started in Moneymore on Saturday 23rd July and finished the following day in Castlerock-Limavady. A tremendous effort has been put in by the O’Neil family – father John, sons Ronald and Richard and daughters Jacqui and Fiona. Following a request from the organisers, TB and CS will be travelling to Northern Ireland later this month for the presentation ceremony.
More information on this important fundraising event appeared in the July issue of ME Essential magazine.
2010 London Marathon
The MEA paid for two guaranteed places in the 2010 London Marathon – so we had two runners taking part as well as several other people running who raised money for The MEA. We would welcome offers from anyone who wants to raise funds in 2011 but we are not paying for any guaranteed places next year.
Amazon Walk to raise funds for a tissue and post-mortem/brain bank:
BS reported on the return of her son Ed, following completion of his epic Amazon Walk. Ed has walked solidly for 859 days and covered around 6,000 miles. He is the first person to carry out what has been an outstanding physical and mental challenge and he will quite rightly enter the history book of hazardous expeditions.
On his return in early August Ed appeared on a number of radio and television programmes – including GMTV, BBC Breakfast Time and the BBC One Show – and his story has been given extensive coverage in the UK and international press. A full summary of media coverage can be found on the MEA website news section.Ed’s progress can still be be seen on his Amazon Walk blog >> http://www.walkingtheamazon.com
Trustees discussed a number of ideas for possible fundraising events following his return home. One of Ed’s first talks on the Amazon expedition will be given to a meeting of the Transglobe Expedition Trust at the Royal Geographical Society in November, where he will be joined by the distinguished explorer Sir Ranulph Fiennes and Michael Palin.
Ed Stafford has a fundraising page for MEA/RRF research here. Around £8000 has been raised so far.
Vegepa for ME scheme The Vegepa for ME Scheme is proud to announce a new partnership with the ME Association’s Ramsay Research Fund to run alongside their long-standing enterprise with ME Research UK in a joint effort to improve the lives of ME sufferers. From August 2010, The Scheme, which has donated over £36,000 since it started up in 2006, will be raising money for crucial biomedical research undertaken by both of these ME charities. The Vegepa for ME Scheme, devised and run by Lynne Kersh, mother of a daughter with long-term ME, has a secure website which sells clinical-grade, patented Vegepa and its various sister products.
MEA website shopping This facility on the MEA website home page provides a direct link to well known shops and on-line stores. Purchasing goods on-line from companies such as John Lewis, M&S, and Amazon via the MEA website is simple and we receive a commission of up to 15% from the shop at no charge whatsoever to the purchaser. Please give it a try! It only takes a few seconds to register for the service on the Easyfundraising.com website.
Mobile phone and ink cartridge returns and trolley coins MD reported on the latest financial returns from these on-going fundraising initiatives. Returns of ink jet cartridges continue to be a very successful source of income – so please keep sending them in. Trolley coins can be ordered using the pdf ORDER FORM on the MEA website: http://www.meassociation.org.uk, or the literature order form insert in the August issue of ME Essential magazine, or by phoning MEA Head Office on 01280 818964/818968. Envelopes for the return of ink cartridges and mobile phones can be ordered using the literature order form.
Christmas cards We have three cards for sale this year – details and pictures in the October issue of ME Essential magazine. A pdf order form can be downloaded the MEA website by clicking here.
Blue ribbons for ME Awareness These can be obtained using the pdf Order Form on the MEA website. Single ribbons cost £1 with a discount for bulk orders over 20.
Summer Raffle This was drawn at the end of July and the winner of the first prize kindly sent the same amount back to the MEA!
Fundraising information Fundraising leaflets are available for use at events and for approaches to sponsors and requests for donations. Free copies can be obtained by phoning MEA Head Office on 01280 818968.
PARLIAMENTARY MATTERS
APPG CS updated trustees on events that had taken place to set up a new APPG on ME following the General Election. This involved finding a new Chairman because Dr Des Turner had retired at the election, as well as finding a small group of other parliamentarians willing to take up the post of Treasurer, Secretary etc.
An inaugural meeting was held on 8 July – shortly before Parliament broke up for the long summer holidays. Those present agreed that David Amess MP would take on the role of Chairman. Other officers elected: Annette Brooke MP (Vice Chair); John Leech MP (Secretary) and Martin Vickers MP (Treasurer). A copy of the Minutes for this meeting can be found in July ME Essential magazine and on the MEA website. The current list of members of the new APPG can be found here.
A planning meeting was proposed for September but no date has yet been fixed.
Further details of the agenda, time, venue for the next full APPG will appear on the MEA website as soon as they become available. It is advisable to check with the MEA website the day before APPG meetings in case any late changes are made.
Neil Riley, Chairman of the MEA, wrote to Dr Des Turner to express our thanks for chairing the APPG and wishing him a happy retirement from Westminster.
The August MEA website poll asked people what they felt was the most important topic for the new APPG on ME to take on. Votes were as follows:
These results have now been forwarded to David Amess, along with a summary of recent developments relating to benefits, research, NICE guidelines, Lightning Process research etc.
APPG Inquiry into NHS Services Trustees previously agreed to help fund the production of some paper copies of the report because we believe this information should be readily available to members of the public who do not have internet access. A paper copy of the final report has been added to the MEA literature list (as a free item) in ME Essential.
The report can also be downloaded from the MEA website or the APPG website: http://www.appgme.org.uk
Countess of Mar’s Group: FORWARD ME The meeting planned for Wednesday 7th July, at which the group intended to discuss a range of current issues, had to be cancelled due to the Countess of Mar being unwell. A new date has not yet been arranged for this meeting.
The Forward ME Group website >> http://www.forward-me.org.uk has information about the group and archives of minutes from past meetings, including a detailed summary of the presentation on benefit issues (ICB and ESA in particular) from Dr James Bolton, Deputy Chief Medical Adviser at the DWP, to the last meeting.:
BENEFITS
Trustees discussed the current situation regarding benefit problems, the changeover from ICB to ESA starting in October, and the Independent Review of the WCA. A copy of the MEA submission to this review can be found on the MEA website here.
NICE GUIDELINE REVIEW
CS reported on correspondence with NICE regarding the date of the proposed guideline review. A copy of our most recent reply from NICE dated 23 August can be found on the MEA website here.
RESEARCH AND RAMSAY RESEARCH FUND (RRF)
RRF: XMRV and MLV: Trustees discussed the latest XMRV research results from validation studies that have been reported in the medical journals – in particular the results from the study by Lo et al that supports a link between retroviral infection (XMRV or MVL) and ME/CFS. The MEA summary and statement on this paper can be found in the website news section here.
The role of the MEA Ramsay Research Fund in supporting UK research groups who want to try and replicate/validate the American findings, or do other relevant work on XMRV was discussed. CS reported on the various contacts and discussions he is continuing to have with virologists on how best to take this research forward in the UK – including the current initiative to retest anyone here in the UK who has sent a blood sample to the US laboratory. The MEA has issued regular website position statements on XMRV and will continue to do so. We have also written to Sir Liam Donaldson, the previous Chief Medical Officer at the Department of Health, about the XMRV research findings and the implications for blood donation and blood transfusion. We have now written to Dame Shirley Davies, the new acting CMO, about extending the blood donation ban to people who have recovered from ME/CFS. A reply from the new CMO states that the current ban will be extended to include anyone with a past history of ME/CFS as from 1 November. This will cover the whole of the UK.
CMO correspondence.
RRF: Professor Julia Newton et al, University of Newcastle CS reported that assessments have been performed on 25 subjects who have been recruited via the Northern Regional ME/CFS Clinical Service. The initial assessment procedures include testing autonomic nervous system function, muscle performance, exercise physiology and body composition (ie the amount of fat and muscle present). The next phase of the study will involve the use of magnetic resonance spectroscopy to assess the way in which their muscle is producing energy and lactic acid. Further information on this study can be found in the August 2009 issue of ME Essential magazine.
RRF funding = approximately £13,800.
Newcastle University Fatigue Research Symposium: Dr Shepherd met Professor Newton at this research meeting which was held on Thursday 10th June at the University of Newcastle. There were presentations from Professor Newton and colleagues on muscle and autonomic dysfunction research involving people with ME/CFS. The meeting focussed on muscle research and considered the role of fatigue in other medical conditions such as HIV and other infections, mitochondrial myopathies, primary biliary cirrhosis and Sjogren’s syndrome. The session on HIV and fatigue covered the important issue of muscle mitochondrial damage following antiretroviral therapy (AZT) and this is obviously going to be very relevant if it turns out that XMRV or MLV is a causative factor in ME/CFS and clinical trials involving antiretroviral therapy take place. A summary of the Newcastle meeting is available in the July issue of ME Essential magazine and on the on the MEA website here.
An abstract from a new research paper from Professor Newton’s research group, which relates to an investigation into cardiac (heart) and skeletal muscle can be found on the MEA website here:
RRF: Factors involved in the development of severe ME/CFS The results of this questionnaire based research, carried out by Dr Derek Pheby and Dr Lisa Saffron, and funded by The ME Association, have been published in an open access on-line journal. More information, including a link to the paper, can be found on the MEA website here.
There is a vast amount of useful information in this paper for anyone with severe ME/CFS, especially those who are involved in disputes over benefits, social care etc.
RRF funding = approximately £30,000.
RRF: Gene expression research Results from a study into gene expression carried out by Professor John Gow and colleagues in Glasgow, and funded by the RRF, were published in the open access scientific journal, BMC Medical Genomics.
Although RRF funding has now finished, we remain in contact with Professor Gow and colleagues in Glasgow regarding further work in this important area.
RRF funding = approximately £38,000.
RRF: Post-mortem tissue bank feasibility study CS updated trustees on phase two of the feasibility study into the setting up of an ME/CFS brain and tissue bank. This has included a focus group meeting which allowed a group of people with ME/CFS to freely express their views on the various ethical, legal and practical issues surrounding tissue and post-mortem research. Work on phase two commenced in February and is being carried out by Dr Luis Nacul and colleagues at the London School of Hygiene and Tropical Medicine. An article summarising all the various MEA post-mortem research initiatives that are taking place can be found on the research section of the MEA website. An article on phase two of this research appears in the February 2010 issue of ME Essential.
Trustees also discussed the various post-mortem research examinations, along with plans for publication, that we have been involved with. CS reported that results from four post-mortems will be presented and discussed at an international conference later in the year.
The next meeting with the researchers involved will take place on September 9th.
RRF funding = approximately £14,000.
ME Observatory Steering Group The final stages of this work are proceeding to plan with several research papers being prepared or submitted for publication. The last MEO meeting discussed the various options for continuing some of the key work being done by the MEO – the Disease Register in particular – when Lottery funding ends in September. The Disease Register now has around 500 people with well characterised ME/CFS – new cases recruited from primary care and others with chronic severe disease via the CHROME database – and it is hoped that this important work will continue and be of use to the researchers in due course.
The ME Observatory has arranged a half day Dissemination Conference that will also cover issues relating to work, welfare and DWP benefits. This event has CPD (continuing professional development) accreditation and will take place in London on Saturday afternoon, 25th September. A senior person from the DWP that deals with ESA will be giving one of the presentations at this event.
Two MEO workshops will be taking place on 28 September (in Sheffield) and 29 September (Birmingham). The next MEO Steering Group meeting will be held on September 9th.
Medical Research Council (MRC) Expert Group on ME/CFS Research Two follow up meetings relating to the two day research workshop that was held on November 19th and 20th 2009 have been held. The minutes of the last meeting, which outlines priorities identified for MRC funded research, can be found on the MRC website. Summaries of the presentations and slides used at the November workshop are available on the MRC website. Further information on the MRC Expert Group can be found on page 12 of the May issue of ME Essential and on the MEA website here.
We are now awaiting a statement from the MRC as what action they propose to take on the recommendations for research priorities that have been made by the Expert Group.
Lightning Process Trustees held a further discussion on a new research study that has been announced into the use of the Lightning Process. Costing £164,000, the feasibility study will investigate how children and adolescents could be involved in a randomised controlled trial that will assess the Lightning Process and compare it to specialist medical care. Not surprisingly, a number of concerns have been raised about the possible use of children and adolescents in this type of study and we are discussing this with our colleagues in other ME/CFS charities. As a result of these discussion the MEA and the Young ME Sufferers Trust (Tymes Trust) issued a joint statement of concern, which can be found here.
This was sent to the Department of Health with a request that it should be forwarded to the ethics committee that is dealing with the application. The DoH have refused to do so – a decision which we believe is unacceptable.
FINE AND PACE Trials Responses to publication of the results from the FINE trial have appeared on the BMJ website, including one from The MEA. Trustees discussed the way in which results from the MRC funded FINE and PACE trials are likely to affect a review of the NICE guideline on ME/CFS. Responses to the results of the FINE trial can be accessed via the MEA website here.
We understand that results from the PACE trial will be reported to the BACME conference in October.
Biochemical and Vascular aspects of paediatric CFS
Trustees briefly discussed the University of Dundee research findings relating to infection and inflammation in children with ME/CFS that had received widespread media publicity on the BBC on Tuesday morning. CS also did some BBC interviews during the day, including Radio 5 Live during their lunchtime news programme. More information on this research can be found on the MEA website.
Sleep Disorders Conference CS has been invited to attend an important clinical and research conference in London in December that will be discussing all aspects of sleep disorders.
*
The MEA is now in a position to fund new research in addition to current commitments and the funding that has been set aside to help set up a UK tissue and post-mortem bank. Information on the work of the RRF can be downloaded from the research section of the MEA website.
SCOTTISH MATTERS
ED reported on publication by the Scottish Health Department on 1 September of clinical guidance on ME/CFS for doctors in Scotland – a document that had originally been based based on the MEA purple booklet for health professionals: ME/CFS/PVFS: An Exploration of the Key Clinical Issues. Publication of the Scottish Public Health Network Needs Assessment has not yet taken place As noted in previous MEA Board meeting reports, the timescale for both projects had to be re-organised in 2009 and progress has been considerably delayed as a result.
Trustees discussed the content of the Scottish Good Practice Statement and the feedback so far from patient representatives that have been involved in their development. A preliminary MEA statement can be found on the MEA website here.
ED will be attending a meeting of the Cross Party Group committee on Wednesday 8th September and the full meeting of the CPG on Wednesday 22 September where the documents will be discussed.
MEA ANNUAL MEDICAL MEETING IN CARDIFF
Trustees finalised arrangements for our annual medical meeting. This is an open and free meeting in an ‘ME Question Time’ format that we rotate around the country. Panel members will be Jane Colby (Tymes Trust), Sue Luscombe (Dietician), Neil Riley (Chairman, MEA), Dr Charles Shepherd (Hon Medical Adviser, MEA) and Dr Nigel Speight (Hon Paediatric Adviser, MEA). This year we are co-operating with the Welsh group WAMES and holding the meeting in Cardiff on Saturday 23rd October. More information can be found on page 3 in the July issue of ME Essential magazine or on the MEA website.
If any local groups are interested in co-hosting this meeting in 2011 please let us know.
MEA LITERATURE
The latest MEA Management File on Fatigue (involving both brain and muscle) appears in the July issue of ME Essential. A new Management File on the subject of XMRV and MLVs is now being prepared for the October issue of ME Essential.
An updated leaflet on dental anaesthetics has been prepared by Dr Richard Cantillon, our dental adviser.
The MEA now has almost 70 leaflets and booklets covering all aspects of research, diagnosis and management.
The MEA Management Report contains the final analysis of data from around 3500 on-line questionnaires and 750 paper questionnaires. The overall response makes this the largest ever survey of patient and carer opinion about management issues that has ever been undertaken here in the UK, possibly in the world. The report was distributed free as part of the May issue of ME Essential. It can also be downloaded from the MEA website – where over 3,000 people have already viewed the report. Extra paper copies can be obtained from the MEA at a cost of £2.50p. This research was funded by the Ramsay Research Fund – so any profits will go to the Ramsay Research Fund.
The October 2009 version of ME/CFS/PVFS – An Exploration of the Key Clinical Issues is continuing to be well received. This 36 page booklet for both doctors and people with ME/CFS contains references to all new research and treatment developments up to October 2009, including a prominent boxed section on the XMRV research findings. The MEA medical guideline is therefore the only substantial publication of this nature covering research, clinical assessment and management to also include XMRV research. As before, The MEA is willing to make a reduction in price for bulk orders from local groups, other ME/CFS charities and PCTs.
MEA literature can be obtained using the website pdf ORDER FORM or the 8-page order form insert in the July issue of ME Essential magazine, or by phoning Head Office on 01280 818064/818968.
MEA WEBSITE
Trustees discussed various matters relating to The MEA website.
The regular on-line survey feature remains very popular. Previous polls have asked about attitudes to post-mortem research (February 2009); GP skills and knowledge (March 2009); how much people have spent on services/treatments outside the NHS (May 2009), Vaccines as trigger factors (May 2010)and opinions on DWP medical assessments that have been carried out by ATOS. The current (September) question asks for opinions on how employers view ME/CFS . Results from all the previous on-line surveys can be found on the MEA website.
If anyone has any suggestions for future website polls please let us know.
ME CONNECT
Trustees reviewed the administration of telephone calls and emails received by ME Connect, our information and support service. Up to the end of July 2010 the service dealt with 1151 emails and 1727 phone calls – a total of nearly 3000 enquiries so fat this year. A recent check on telephone response times audit indicated that almost all calls were being answered either immediately or within a few minutes. However, there will always be occasions when a delay is inevitable due to the volunteer on duty having to deal with a difficult call.
ME Connect, our telephone information and support service, operates every day of the week from 10am – 12 noon; 2pm – 4pm and 7pm – 9pm. Tel: 0844 576 5326.
We are always keen to hear from anyone who would like to join ME Connect as a volunteer. If you are interested please contact the MEA via ME Connect
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ME ESSENTIAL MAGAZINE
TB reported on plans for the October issue of ME Essential. Any remaining copy must be with Tony by the middle of September. We are aiming for publication in the middle of October.
The Editorial Board is always happy to receive constructive comments about any aspect of the magazine.
NEW SHORT FILM ON ME : ‘ALL ABOUT ME’
This is a new short documentary film (in two parts) about Laura Fursland, a very promising young music student who developed ME following an episode of glandular fever, with complications, at the age of 18. The film deliberately concentrates on Laura’s story and how it has affected all aspects of her life – in particular how her life is now “on hold” and her plans to go to university to study music.
The medical input – covering key symptoms, possible causation, drug treatments and the losses/social isolation of living with ME at this age – is briefly inserted at various points. The film is not intended to focus on the medical and science behind ME/CFS.
This film was made by Teesside University with information being provided by the MEA.
McCarrickFilms | 14 August 2010
(Part 1/2) A documentary about M.E sufferer Laura Fursland. A promising young music student…
McCarrickFilms | 13 August 2010
(Part 2/2) A documentary about M.E sufferer Laura Fursland. A promising young music student…
MEA HEAD OFFICE: VOLUNTEERS WANTED
In addition to the telephone volunteers who deal with ME Connect enquiries, we have a small number of dedicated volunteers who come into the MEA office in Buckingham on a regular basis to help with various aspects of our work. If you know of anyone who lives locally to Buckingham, and would like to come into the office and help out on a flexible basis please get in touch with Gill Briody. The MEA office is modern, on the ground floor of an out-of-town site, has disabled access, and good free car parking facilities on site.
DATE OF NEXT BOARD MEETING
Fixed for Monday and Tuesday, 15th and 16th November 2010.
AGM AND TRUSTEE ELECTION RESULTS
The Annual General Meeting of the charity took place on Tuesday 7 September at the Head Office in Buckingham.
Present
Ewan Dale
Mark Douglas
Neil Riley by telephone link
Charles Shepherd
Barbara Stafford
Tony Britton
Gill Briody
Agenda
The minutes of the previous AGM were agreed.
Neil Riley presented the Chairman’s report
Ewan Dale presented the Treasurer’s report
Auditors for the financial year ending in December 2010 were appointed
Trustee Elections
Ewan Dale: 389 votes in favour, 12 votes against
Charles Shepherd: 410 votes in favour, 2 votes against
11 abstentions
5 votes not accepted due to membership not being renewed
11 votes not accepted as received after the closing date
Both candidates were elected
A full report on the AGM will appear in the October issue of ME Essential
POST AGM BOARD MEETING
Neil Riley re-elected as Chair
Ba Stafford re-elected as Vice Chair
Ewan Dale re-elected as Treasurer
Gill Briody re-elected as Company Secretary
Summaries prepared by Dr Charles Shepherd, Trustee
The Phil Parker Lightning Process site announces they are shortly to launch “a public opinion survey designed to raise awareness about current research into the physical nature of this disease” - a “Campaign to increase awareness of ME/CFS as a physical illness” with the promise of more information to follow.
Mr Parker’s scientific ability to step inside people’s bodies:
…Phil Parker is already known to many as an inspirational teacher, therapist, healer and author. His personal healing journey began when, whilst working with his patients as an osteopath. He discovered that their bodies would suddenly tell him important bits of information about them and their past, which to his surprise turned out to be factually correct! He further developed this ability to step into other people’s bodies over the years to assist them in their healing with amazing results. After working as a healer for 20 years, Phil Parker has developed a powerful and magical program to help you unlock your natural healing abilities. If you feel drawn to these courses then you are probably ready to join…
That entire course prospectus is worth a skim.
Mr Parker’s scientific opinion on the Lightning Process and XMRV:
thephilparker | 27 October 2009 Phil Parker, designer of the Lightning Process discusses the latest research into the xmrv virus and cfs
@ Slides 13 and 14
How this relates to the Lightning Process
• If we assume that on average:
– 67% of the cases of CFS clients that are seen with the LP have the XMRV virus,
– And according to our findings 85% of these people recover their health in the 3 days of the LP programme
LP and XMRV
• The LP must be assisting these people to deal effectively with that infection in some way (we would hypothesise it is a resumption of good immune and neurological function)
Mr Parker’s promotion of the ”Lightning” as a “Dynamic New NLP Pattern Seminar” and ”Self Coaching Strategy”, in 2002:
A seminar training you in the latest developments in the fields of NLP and Coaching
Led by Phil Parker Do Dip E Hyp NLP CMPNLP MBIH
and Phil Swallow DCHNLP CMPNLP
Sunday June 16th 10am-5pm Central London,UK
This is a rare opportunity to discover some NEW NLP patterns;
these are as a result of Phil’s latest research and are simply not available anywhere else.
Do you want to build on your current skills and master a simple, effective, rapid and lasting strategy for helping you and your clients to learn how to:
Make changes in issues which have troubled them for years
Breakthrough old areas of stuckness
Stop old negative thought patterns
Develop a more supportive and affirming relationship with themselves
Stop victim behaviour, inaction, lack of responsibility and sulking
Stop abusive patterns like smoking, overeating
Stop worry, anxiety, panic attacks
Get over depression
Become more proactive and less dependent on professional support
Coaching and self coaching.
Most of us are now familiar with concepts of coaching, and recognise the value of this supportive and focused way to address the issues of your life.
Self coaching takes these core coaching concepts even further, rapidly developing the clients own abilities to take charge of the choices they make in their lives, to create solutions to unfamiliar situations, to nurture and support themselves, and focus their lives in the directions they really want to. This detailed course trains you so that you can apply the key steps of this process to teach and coach your clients to mastery in the Lightning Self Coaching Strategy.
You will learn how to use the following Key Steps
Explain to clients how their current negative patterns work; and help them to discover how changing them will produce amazing results
The Lightening Self Coaching process
Testing and fine tuning
Making it stick
Pre-course requirements.
To ensure the course is appropriately targeted, you meet one of the following eligibility criteria
A: a NLP practitioner
B: a Hypnotherapist
C: have a clinically based training, e.g. doctor, nurse, osteopath, acupuncturist etc.
D: have a coaching training
E: had a personal interview with course leader
You will get the most from the course by reading Phil Parker’s groundbreaking handbook on self coaching, The Ten Questions. Available at http://www.philparker.org
Course fee: £120 (please make cheques payable to Phil Parker and mail to LCHM 170 Weston Park London N8 9PN UK)
Early bookers discount; be sure of your place, save yourself £20 and make the admin easier for us by booking before May 1st 2002 and your course fee will only be £100
Clients comments after using the Lightning Self Coaching Strategy.
I’m not quite sure how you’ve help me do this but, but I do not recall feeling so good for decades; the rollercoaster of anxiety and stress that I used to have a season ticket to has just gone away. Thanks so much for teaching me what I wished I’d learnt years ago.
I’ve been the Queen of yo-yo dieting for years. I’ve seen everyone, and I mean everyone, from Nutritionists to fitness trainers to astrologers. Nothing has made any long term impact until I started this process with Phil. Now I’ve been eating normally for 3 months, and not even snacking when the stress starts to build up.
I feel like a genius!
I believed I had a milk allergy causing all my digestive problems, but it seems I was mistaken, not only can I now eat what I like and feel fine, but I’ve also reduced the stress is my life to almost zero, just in three sessions. I can’t believe how good I feel, and how easy it was, and how I never knew any of this work before now.
Warning: There is a strong possibility that your current clients could stop needing to see you as often as they used to and that they will begin refer you more new clients than you can handle.
Reserve your place by mailing a cheque made payable to P Parker to
LCHM,170 Weston Park, London N8 9PN.
For further details call 020 83149800
Please note
Once you have committed to taking a place on the course fees can not be refunded unless we have to cancel the event.
—————————————–
the secret is out
How much more will you be able to achieve once you’ve discovered THE TEN QUESTIONS ?
Order your copy of Phil Parker’s new book now, and re-design your future today.
Mr Parker’s scientific opinion on whether medical professionals can assess whether you are “ready” to undertake the scientific Lightning Process:
From the FAQ: Can my doctor assess me for readiness?
If your doctor or health care specialist is trained as a Lightning Process Practitioner then of course they can assess you for readiness to take the programme. If they are not trained in the programme they will not have the requisite skills or knowledge base about this very specialised field to assess you.
A large part of the training for LP practitioners is to train them to appropriately assess potential trainees for their suitability for the process, as it is essential to ensure, as far as is possible, that only those who are ready to get benefits from the training program are enrolled in the training.
Mr Parker’s scientific method of resolving CFS and ME, as recounted by a disappointed Lightning Process “trainee”:
I had an acute onset and went from a hardworking person to bedbound overnight.
In a desperate attempt to recover I decided to try LP after reading stories of severely affected M.E. patients who had recovered. It all sounded so convincing and after a phone consultation with a LP coach I felt very positive I was doing the right thing. I borrowed the money from my parents, £880.00 as I had long lost my job, and went for it.
There were 3 other m.e. patients at the same course none of these people nor myself recovered. The course was over 3 days from 10am-2pm with a break at lunchtime for tea and biscuits. We were told not to discuss the content of the course with each other during the breaks. We learned the ‘affirmation’ and stood on the floor on paper circles with key words written on them.
Here is the big secret of what we had to say while standing on paper circles -
WHEN YOU FEEL A SYMPTOM
SHOUT- STOP! (stand on the paper STOP)
SAY- I HAVE A CHOICE ( stand on the paper CHOICE)
SAY- YOU CAN CHOOSE THE PIT OR THE LIFE YOU LOVE ( you then stand on the LIFE YOU LOVE circle)
SAY- I CHOOSE THE LIFE I LOVE
SAY- WELL DONE, YOU ARE A FANTASTIC GENIOUS, YOU ARE ON TRACK! I AM WITH YOU EVERY STEP OF THE WAY (you are being your own coach here)
ASK YOURSELF – WHAT DO I WANT?
ANSWER YOURSELF- I WANT ENERGY AND HAPPYNESS LIKE (you say something that means energy etc. to you)
ASK YOURSELF- HOW WILL I GET THIS?
TELL YOURSELF- BY STOPPING EVERY NEGATIVE THOUGHT
EVERY NEGATIVE EMOTION
AND DOING THE LIGHTNING PROCESS.
There are a few more short affirmations and that’s it you are cured of M.E. We all DID leave on the third day full of hope and newly found confidence and told that no-matter how we felt in the future ALWAYS SAY WERE WERE CURED OR THE PROCESS WILL NOT WORK !!!! These coaches are very good at their job but I can assure you they can not cure you of M.E. Think about it PAPER CIRCLES AND AFFIRMATIONS. The four of us all were ‘high’ for a few weeks or months and did indeed do more than usual but sadly all relapsed.
…and if the Lightning Process doesn’t scientifically fix CFS and ME, well there’s plenty more it can sort, according to the sites of some Lightning Process practitioners:
What does it work for?
People using the Lightning Process® have also recovered from, or experienced significant improvement with the following conditions: -
Fibromyalgia
Chronic Fatigue Syndrome
Post Viral Fatigue
Asthma
Rheumatoid Arthritis
Hayfever
Depression
Dyspraxia
Bipolar Disorder
Ocd
Anxiety And Panic Attacks
Insomnia
Cerebral Palsy
Low Self Esteem
Parkinsons Tremors
Motor Neurone Disease
Hyper And Hypo Thyroidism
Chronic Aches And Pains
Ibs
Lyme Disease
Anger Issues
Food Intolerances
Coeliac Disease
Ptsd
Candida
Allergies
Type 2 Diabetes
Interstitial Cystitis
Migraines
Noise And Light Sensitivity
And Many More
Using the Lightning Process® has proven effective for clearing ALL the debilitating physical and mind based symptoms of ME, chronic fatigue syndrome, and post viral syndrome.
Some of the symptoms that people have cleared are listed here…
Addictions, adrenal problems, allergies and intolerances, anxiety, balance problems, bloating, blurry vision, brain fog, candida, chemical sensitivity, compulsive behaviours, concentration problems, confusion, constipation, depression, diarrhoea, dizziness, electrical pulsing sensations, excessive sleeping, exhaustion, fatigue, fear, feeling detached or disconnected, fever and chills, flu-like symptoms, frequent coughs and colds, fybromyalgia, hallucinations, head pain or pressure, heartburn, indigestion, insomnia and other sleep disturbances, irritability, irritable bowel syndrome, itching and rashes, itchy eyes, joint pain, light sensitivity, loss of vision, malaise, memory loss, migraines, muscle pain, nausea, noise sensitivity, oedema, panic attacks, painful and/or swollen glands, pins and needles, restless leg syndrome, runny nose, sensitivity to electrical fields/computers/mobiles etc, shaking, shooting pains, skin sensitivity, stomach pain, sun burn sensation, swelling, temperature control problems, thrush, thyroid problems, unrefreshing sleep, vertigo and similar sensations, vomiting, water retention, watering eyes, weakness…
Lightning Process practioner, Alastair Gibson* who is part of the research team collaborating in the Dr Esther Crawley NHS Bath/University of Bristol pilot study into the application of Lightning Process in children, due to start recruiting this month, can also provide you with relief and enhancement:
*In June, Mr Gibson was subject to an Advertising Standards Authority ruling in relation to claims made in an advertisement about the efficacy of the Lightning Process for CFS and ME.
Relief from:
Addictions
Anger management
Children’s Anxieties
Sadness
Grief and Loss
Negative Memories
Procrastination
Stomach Problems
Weight Issues Allergies
Stress
Chronic Fatigue Syndrome
Fears and Phobias inc:
Public Speaking
Spiders
Heights
Flying
Relationship Issues
Anxiety and Panic
Compulsions and Obsessions
Guilt
Headaches
Limiting Beliefs
Pain Management
Stuckness
And many more…..
Enhancement of:
Abundance
Emotional Control
Relationships
Self Image
Creativity & Productivity Concentration
Healing
Relaxation
Work and School Performance
And many more…..
Confidence
Life Direction
Self-Esteem
Sports Performance
SMILE – Specialist Medical Intervention and Lightning Evaluation documents (Lightning Process pilot study – children [now aged 12 to 18] with CFS and ME)
SMILE – Specialist Medical Intervention and Lightning Evaluation
What is SMILE?
SMILE is a feasibility study to see whether it is possible to recruit young people into a study to compare specialist medical treatment with specialist medical treatment plus the Lightning Process for young people with chronic fatigue syndrome or ME (CFS/ME).
The study will also look at how we should measure outcomes and the health economic impact on the families of young people with CFS/ME.
Young people will be observed completing the questionnaires that we use to look at how unwell they are before they see us and what happens to them after an intervention. We will also talk to young people and their parents to understand what they think about the questionnaires and to determine the most acceptable and sensitive ones to use. This study is the first to work out which questionnaires we should be using to understand outcome in paediatric CFS/ME.
Frequently Asked Questions
Why is research in children needed?
Over 250 children a year already attend Lightning Process training. It is important that people know whether it is safe and effective or not. We need high quality research to answer these questions. If SMILE can recruit enough people to participate in the study then further research could look at whether it is helpful or not.
Should research be done in children before adults?
Children have the right to research particularly in illnesses which are different to adults. CFS/ME in children has a different outcome to adults and the treatment is different therefore research in adults cannot be extrapolated to children.
How will the safety of those involved in SMILE be monitored?
The safety and wellbeing of people involved in any research project, not just the SMILE project, is of the utmost importance. There is an Independent Advisory Group to oversee, and monitor this research. All participants will be carefully monitored and regularly reviewed in the specialist CFS/ME service. Young people taking part can opt out of the trial at any point.
How can we take part in the study?
Young people are eligible if they are between 12 and 18 years of age, have CFS/ME and are from the region covered by the Bath/Bristol specialist CFS/ME service. Young people are recruited at assessment so you will not be eligible if you have already been seen by the service.
What ethical review has SMILE received?
The study has been scrutinised by the South West 2 Research Ethics Committee whose role it is to ensure that research is safe and ethically sound. The ethics committee have looked in detail at the study design, and all associated documentation and suggested improvements to the readability and accessibility of the patient information leaflets and consent forms which have been adopted.
The SMILE study is compliant with Good Clinical Practice Guidelines, Research Governance Framework, Medical Research Council guidelines, Royal College of Paediatrics and Child Health guidelines for the conduct of trials and has been approved by an ethics committee.
Further information about this research project can be found in the following documents:
Smile Study Documents
[Ed: I have numbered these documents for ease of reference - they are not numbered on the University of Bristol website.]
Note: some of the documents on this page are in PDF format. In order to view a PDF you will need Adobe Acrobat Reader
1] SMILE Information sheet for teenagers August 2010 [pdf (150kb)]
Update on the Dr Esther Crawley led Royal National Hospital for Rheumatic Diseases (RNHRD) NHS FT, Bath/University of Bristol Lightning Process pilot study for children aged 8 to 18 (now 12 to 18)[1].
For background to this pilot study issue see ME agenda 5 July report:
A pilot study on the controversial Lightning Process using children as young as eight has received the go ahead from a South West Region Research Ethics Committee (REC), despite widespread public concern and condemnation by two UK national patient organisations.
In August, ME patient charities, The ME Association and The Young ME Sufferers Trust, issued a joint press release describing the study as “unethical” and calling for it to be abandoned [2].
The organisations said:
“We are issuing this joint statement due to widespread public concern, together with our own serious reservations, about a forthcoming study of the psychologically-based Lightning Process on children.
“The pilot study, scheduled to start in September, will look at the feasibility of recruiting children aged eight to 18 with ME/CFS into a randomised controlled trial (RCT) comparing the Lightning Process with specialist medical care.
“It is planned that over 90 children aged between eight and eighteen and their families will be involved in the study.
“The Medical Research Council (MRC) produces specific guidelines for research involving vulnerable patient groups [3].
“The document ‘MRC Medical Research Involving Children’ is quite clear on this issue. It poses the question: ‘Does the research need to be carried out with children?’ In answer, the MRC states: ‘Research involving children should only be carried out if it cannot feasibly be carried out on adults.’
“The ME Association and The Young ME Sufferers Trust do not believe that it is ethically right to use children in trialling an unproven and controversial process such as the Lightning Process…
“…We cannot approve of a study involving children as young as eight when no rigorous trials have first been undertaken into the safety, acceptability, long and short-term effects of the application of this controversial and unregulated ‘process’ with adults.”
Today, information received from University of Bristol Information Rights Officer, Matthew Morrison, confirms that the pilot study has now been granted ethics approval. Recruitment to the study, which is being funded by the Linbury Trust and the Ashden Trust, was scheduled to start in September.
What has been published?
A large number of documents are published today on the University of Bristol website.
Information on accessing the research protocol and other published material can be found in the next post.
In June, ME agenda reported that Alastair Gibson, who had previously identified himself as one of two Lightning Process coaches involved with the NHS study, was the subject of an Advertising Standards Authority (ASA) ruling [10].
The ASA upheld a complaint about unsubstantiated claims made for the efficacy of the Lightning Process in ME and CFS in an advertisement for Mr Gibson’s “Withinspiration” company.
At least one Lightning Process company has made changes to the wording on its website following the ME Association’s discussions with Trading Standards.
Currently, the ASA’s remit does not extend to website content but from May 2011, the ASA will broaden its remit and will be able to consider complaints about:
• Advertisers’ own marketing communications on their own websites and;
• Marketing communications in other non-paid-for space under their control, such as social networking sites like Facebook and Twitter.
On 1 September, the Advertising Standards Authority issued a news release setting out its extended remit:
Concerns about the pilot study have been taken up with Earl Howe (Parliamentary Under-Secretary of State for Quality). Earl Howe is a Patron to The Young ME Sufferers Trust. An unsatisfactory response was received from Bill Davidson, Research Governance Manager, Department of Health, on 30 August, who responded on behalf of Earl Howe.
In July, Annette Brooke, MP, Mid Dorset & North Poole forwarded my concerns and documents to the Rt Hon Andrew Lansley MP, Secretary of State for Health, Department of Health. Paul Burstow MP, Minister of State for Care Services, responded briefly on behalf of the Secretary of State for Health, on 12 August.
Mrs Brooke is Vice-chair of the newly reformed APPG on ME (Acting chair, David Amiss, MP).
The ME Association had also written to the Department of Health requesting that their joint press release be forwarded to the ethics committee reviewing the application. The DoH refused to do so – a decision which the ME Association considered unacceptable.
The name of the South West Research Ethics Committee, which had met to review the application on 8 July, was identified on 27 August in a response to my request for information under the Freedom of Information Act. The contact details for this regional RE committee chair have been passed to the ME Association.
The South West Regional Manager for the National Research Ethics Service (NRES) confirmed to me, in May, that there is apparently no process through which REC decisions might be challenged by the public.
On Page 4 of the Autumn issue of Action for M.E.’s InterAction magazine, CEO, Sir Peter Spencer, announces changes to the way in which the organisation operates.
Sir Peter writes, “In another significant change, inspired by your Board wishing to create greater transparency and demonstrate their accountability, our Trustees have voted to invite members to attend Action for M.E.’s annual general meeting (AGM). The first opportunity is Thursday 21 October in London and an application form for attendance is enclosed with this magazine.
“Additionally, the Board will be introducing procedures that will give all our Supporting Members voting rights regarding the appointment of Trustees and the Chair from 2011.”
How this change of policy will operate in practice remains to be seen but I would like to thank those who have lobbied long and hard for years for the right to attend AGMs, for voting rights and the right to participate in what I hope will be a democratic trustee election process.
I maintain a membership of Action for M.E. not because I support their policies or the way in which they operate but because, as a site owner, I need to know what the organisation is involving itself in and with whom, and what its policies and positions are.
There is to be a question and answer session with the board members (the Trustees/Directors) at the AGM.
Were I to attend this first open AGM, scheduled for October, I would want to raise the following:
This pilot study, led by Dr Esther Crawley, with funding from the Linbury Trust and the Ashden Trust, is still pending approval by a South West Region Research Ethics Committee.
The application was submitted on 14 June. The REC meeting to consider the application took place on 8 July.
Although funding for the study had been secured last November and a press release published in early March, at 6 September, the study is said to be “still at the final stage of the ethics procedure”.
The ME Association and the Young ME Sufferers Trust issued a joint press release on 4 August, describing the proposed study as “unethical” and calling for it to be abandoned.
To date, no rigorous controlled trials have been undertaken using an adult patient cohort into the safety, acceptability, long and short-term effects of the application of the Lightning Process.
No rationale has been provided by the research team for piloting first with children and there has been virtually no information made available about the study design, objectives, interventions, criteria, recruitment process etc, for public scrutiny.
At the end of March, in response to a request for a position statement, Action for M.E. said it saw “no reason to oppose this pilot study.”
On 24 August, in response to a request that Action for M.E. set out what information it had used to inform its position on whether to support this study and what its understanding is of what the children in this proposed study would be exposed to, Sir Peter wrote:
“…Action for M.E. has not seen the research protocol for this proposal and has no detailed knowledge of the way in which this trial would be conducted if approved.”
They don’t know. They’ve bought into a pig in a poke.
Four days earlier, Action for M.E. had issued a second position statement in which the organisation wrote:
“As long as the ethics committee gives its approval, the charity supports proposals to investigate whether it is possible to set up a controlled trial to look at the Lightning Process and how it compares with current treatments for M.E./CFS in children.”
But how much does this South West Region REC actually know about the Lightning Process?
What information have the researchers placed before this committee?
With no robust data from RCTs into the application of Lightning Process in adults, how is the research team and the Research Ethics Committee considering this application in a position to determine that overall the likely benefits of this proposal outweigh any risks to child participants or that undergoing the training program would not be detrimental to their health and psychological well-being, as patients with ME and CFS?
So I should want to ask how Action for M.E. justifies sidestepping responsibility for safeguarding children as young as eight under these circumstances?
I’d also raise the following:
On Page 14 of this Autumn edition of InterAction, is a quarter page advertisement for the Phil Parker Lightning Process at the “Swallows Retreat”, in Henfield.
On Page 32, a quarter page ad for the “Rowan Centre” who until recently had been claiming on their website:
“People using the Lightning Process have recovered from, or experienced significant improvement with the following issues and conditions
“ME, chronic fatigue syndrome, PVFS, adrenal fatigue, acute and chronic pain, back pain, fibromyalgia, rheumatoid arthritis, migraine, injury, PMT, perimenopausal symptoms and menopause, clinical depression, bipolar disorder, anxiety and panic attacks, OCD and PTSD, low self-esteem, confidence issues, hay fever, asthma and allergies, candida, interstitial cystitis, urinary infections, bladder and bowel, problems, IBS, coeliac disease, crohns disease, food intolerances and allergies, blood pressure, cardiac arrhythmia, type 2 diabetes, restless leg syndrome, hyper/hypo thyroidism, insomnia and sleep disorders, autistic spectrum disorder, dyspraxia, ADHD, lymes disease, glandular fever, epstein barr virus, weight and food issues, anorexia and eating disorders, multiple sclerosis, cerebral palsy, parkinsonian tremor, motor neurone disease”
Their advertisement reads “We offer a training programme with on-going support to help people improve their symptoms. The teaching is based on neuroscience and cell biology and shows you how to affect your immune system using techniques derived from NLP processes, brain rehearsal and brief meditation techniques.”
On Page 22, a half page ad for The Lightning Process with Alastair Gibson.
In June, Mr Gibson’s “Withinspiration” Lightning Process company had been subject to an Advertising Standards Authority adjudication following a complaint about unsubstantiated claims [1].
In March, Mr Gibson (who in September will be offering Lightning Process sessions in Bristol) had identified himself on his website as “…one of the two practitioners working with the NHS and the young people in this exciting research study”.
I am sure there will be many questions raised at this Action for M.E. open AGM next month.
I append a copy of the article “New benefits for our members” by Sir Peter Spencer.
Action for M.E. is transforming how it operates so that we can reach more people with M.E. and work more effectively on your behalf. Sir Peter Spencer explains.
We really do appreciate the expertise that people with M.E. share with us. Over the past three years we have greatly increased our efforts to consult so that we can better represent your views on a wide range of important matters. However, Action for M.E. can still do more to empower members to become an even stronger collective catalyst for change.
Today, the most efficient and cost-effective way of reaching more people with M.E. is through the internet. That’s why we are creating an entirely new website, the Online M.E. Centre.
As well as multi-media communication channels, new members-only forums will be available as safe havens, where people with M.E. can reach others who understand exactly what they’re going through. We know that 50% of people with M.E. are not in contact with anyone else with the illness. We have ample evidence that putting people in touch can really help them face and share the distressing problems of isolation caused by loss of social contact and not being understood by family and friends.
Membership
From September this year, anyone renewing or joining Action for M.E. for the first time will be able to choose the features and benefits they want from their membership package. You can join or renew online, by telephone or by post.
There will also be greater flexibility by giving members a personal choice about how much they feel able to contribute through their membership donation, either by a monthly direct debit or on an annual or lifelong basis. Exceptionally, those facing extreme financial hardship may be eligible for a payment waiver. The sustainability of our new membership arrangements will be made possible through the generosity of those more fortunate who are willing to give more to enable the most vulnerable to remain part of our movement; an essential point that I want to re-emphasise.
We greatly value you as members mainly for your presence and for contributing your expertise and moral support. You are much more than a vital source of revenue. The higher our numbers grow, the stronger our voice and the greater our credibility and authority in lobbying the Government for action.
Some of our supporters do not have M.E. themselves. Many of these provide extremely generous financial donations and free expertise because they care so much about those who have the illness. We need much larger numbers of all types of member and, because all members are essentially supporting our charity, we’ve adopted the term ‘Supporting Member’ to describe all categories of personal membership. Professional membership for individuals and organisations will also be available, allowing better access to relevant information about how to support people with M.E.
AGM and trustees
In another significant change, inspired by your Board wishing to create greater transparency and demonstrate their accountability, our Trustees have voted to invite members to attend Action for M.E.’s annual general meeting (AGM). The first opportunity is Thursday 21 October in London and an application form for attendance is enclosed with this magazine.
Additionally, the Board will be introducing procedures that will give all our Supporting Members voting rights regarding the appointment of Trustees and the Chair from 2011.
This is a crucial and exciting year for Action for M.E. I hope you agree that the developments I’ve described will ensure that we continue to meet your high expectations.
I know that many people with M.E. do not use the internet. So want to reassure you: Action for M.E. will of course continue to provide printed information through InterAction and our information booklets. We will also be providing enhanced telephone support line services from October.
Abstract and commentary also available on MERUK site
Comment by ME Research UK[note this commentary is heavy with links, please refer to site for links]
Illness in youngsters has a particular poignancy; the transformation of a bright, active child into one who is unable to go to school or play with friends is something that touches us all.
Estimates of the numbers of children affected by ME/CFS vary, but with prevalence figures of 60 to 70 cases per 100,000, it is likely that around 9,000 people under the age of 16 in the UK have this diagnosis. As the report to the Chief Medical Officer in 2002 made clear, this illness “represents a substantial problem in the young” and “potentially threatens physical, emotional, and intellectual development of children and young people, and can disrupt education and social and family life, at a particularly vulnerable time of life”.
The results of a previous study on quality of life in children with ME/CFS were recently published in Pediatrics by Dr Gwen Kennedy at the Vascular and Inflammatory Diseases Research Unit in the University of Dundee. In parallel with this work, Dr Kennedy and her colleague Dr Faisel Khan have been investigating biochemical and vascular abnormalities in children with the disease, and their results have just appeared in the US journal Archives of Pediatrics and Adolescent Medicine.
The Dundee group had previously reported a number of biochemical and vascular abnormalities in adults with ME/CFS. These mainly involve the immune and cardiovascular systems, and include an increase in the programmed death (apoptosis) of white blood cells, raised levels of oxidative stress which can damage blood vessels and other organs, increased markers of inflammation, and abnormalities in blood vessel function. All of these are potentially associated with a future risk for cardiovascular problems such as heart disease and stroke.
Drs Kennedy and Khan wanted to investigate whether these abnormalities were also present in children with ME/CFS, given the potential long-term consequences for cardiovascular risk. Risk factors such as high cholesterol and increased blood pressure, which are usually associated with adult diseases, have also been found in children and can progress into adulthood as hypercholesterolaemia and hypertension, so it is important that risks are identified as early in life as possible.
Twenty-five children with ME/CFS (all between the ages of 10 and 18 years) and 23 healthy children matched for age, gender and stage of puberty were recruited from throughout the UK. The diagnosis of ME/CFS had been made according to a revised version of the CDC-1994 case definition, and was confirmed by the researchers from a clinical examination.
A blood sample was taken from each child (using an anaesthetic cream to minimise their discomfort), and this was then subjected to a battery of tests in Dr Kennedy’s laboratory. The child’s blood pressure was measured, and then the pulse at their wrist was detected using a special pen-like probe applied lightly to the skin. This records the fluctuations in pressure as each pulse travels along the artery, and is exactly what you feel with your finger when you take your own pulse. This recording of the pulse is then analysed on a computer to give information on how flexible the artery is, which gives an indication of its health and function.
Overall, compared with healthy control children, the young people with ME/CFS had:
1.Higher levels of oxidative stress, manifested as elevated levels of isoprostanes
2.Reduced levels of vitamins C and E
3.A greater percentage of white blood cells undergoing apoptosis
4.A trend towards increased arterial stiffness, although this was not statistically significant
As Dr Kennedy points out, the increased oxidative stress may be due to a deficiency of antioxidants in the diet (such as vitamins C and E, found to be reduced in this study). However, she feels it is more likely to have been caused by white blood cells releasing an excessive amount of highly reactive free radicals, possibly from exercising muscle. This would tie in with the finding of increased white cell apoptosis, and Dr Kennedy has previously reported increased oxidative stress following exercise in adults with ME/CFS. She does emphasise, however, that more studies, perhaps including an assessment of diet, are needed to determine this mechanism.
The increased apoptosis (or programmed cell death) may be caused by a number of factors, including a persistent viral infection or toxic agent, or an abnormal immunological response. This finding is particularly intriguing given that many patients, including most children in this study, report that their disease started following a viral infection of some kind. At present, however, there is insufficient evidence to make a causal link between infection and increased apoptosis, though the finding is tantalising.
Although there were no other statistically significant changes in the children with ME/CFS, there was a clustering of markers such as arterial stiffness and cholesterol that showed small changes which may indicate the possibility of future cardiovascular risk. This type of clustering has been shown before in healthy children and in young people with diabetes. Although it should be stressed that children with ME/CFS are at no immediate risk of developing cardiovascular problems, we might expect these changes to become greater (closer to the adult pattern) as the children grow older and have been ill for longer.
Dr Kennedy and her team conclude their report by saying that the findings show that many children with ME/CFS “have an underlying, detectable abnormality in the behaviour of their immune cells, consistent with an activated inflammatory process”, and provide evidence of “a persistent or reactivating viral infection triggering apoptosis of white blood cells with an increased production of free radicals”.
It is important that these abnormalities have now been recognised in children with ME/CFS. To date, aside from symptomatic treatments, no specific therapy is available for children or adults with ME/CFS. Based on these and other biomedical findings in the disease, putative therapies could perhaps include both pharmacological and non-pharmacological strategies (to treat dysautonomia, for example), or antioxidant or antiviral interventions.
Co-funders of the study
ME Research UK funds biomedical research into ME/CFS with the aim of finding the cause of the illness and developing effective treatments. It funds the work of a growing number of scientists in the UK and worldwide, and to date has invested over £600,000 to support biomedical research. We are particularly grateful to the ME organisations which have provided larger donations to help us fund specific projects, details of which including some of the resulting scientific papers can be found on our research pages.
The Young ME Sufferers (Tymes) Trust, one of the major co-funders of the study at the University of Dundee, is the longest established national UK service for children and young people with ME and their families. A well-respected national charity, which recently won the Queen’s Award for Voluntary Service, its entire professional team give their time free of charge. It runs an Advice Line, provides access to ME experts for doctors, teachers and social workers, and produces a magazine for children, families and professionals. The Trust played a major role in producing the children’s section of the Department of Health Report on CFS/ME (2002). It promotes interactive virtual education for children with ME, and provides the Tymes Trustcard — a pass card for children in school, endorsed by the Association of School and College Leaders. More information on the Tymes Trust and its work can be obtained at its website.
Search ME, based in Rosyth, Fife, was founded in 2002. Its aims are to improve the lives of people with ME and to provide them with a voice on the Cross Party Group for ME in the Scottish Parliament. The charity has raised the bulk of its donations through organising Rock and Pop Concerts. Search ME became an early supporter of the study at the University of Dundee and helped fund the work carried out there. Members of the charity are very proud of the work carried out at Dundee and of all the people involved. Further information can be found on their website.
Tenovus Scotland has funded world class cancer research across the UK for over 40 years, providing a vital link by funding pilot studies which can attract further support from major funding bodies such as the Wellcome Trust, the MRC, Cancer Research UK, the British Heart Foundation and many others. Further information can be found at its website.
Vol. 164 No. 9, September 2010 | Journal of Archives of Pediatriatrics & Adolescent Medicine
Biochemical and Vascular Aspects of Pediatric Chronic Fatigue Syndrome Gwen Kennedy; Faisel Khan; Alexander Hill; Christine Underwood; Jill J. F. Belch
Arch Pediatr Adolesc Med. 2010;164(9):817-823. ABSTRACT | FULL TEXT | PDF [Free Abstract, Payment required for full paper]
Biochemical and Vascular Aspects of Pediatric Chronic Fatigue Syndrome
Gwen Kennedy, PhD; Faisel Khan, PhD; Alexander Hill, PhD; Christine Underwood, MBBS; Jill J. F. Belch, MD
Objective To evaluate the biochemical and vascular aspects of pediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).
Design Cross-sectional clinical study.
Setting Tayside, Scotland, United Kingdom.
Participants Twenty-five children with CFS/ME and 23 healthy children recruited from throughout the United Kingdom.
Interventions Participants underwent a full clinical examination to establish a diagnosis of CFS/ME and were asked to describe and score their CFS/ME symptoms. Biochemical markers were measured. Arterial wave reflection was estimated to assess systemic arterial stiffness.
Main Outcome Measures Markers of oxidative stress and free radicals, C-reactive protein level, white blood cell apoptosis, and arterial wave reflection.
Results Children with CFS/ME had increased oxidative stress compared with control individuals (isoprostanes: 252.30 vs 215.60 pg/mL, P = .007; vitamin C, mean [SD]: 0.84 [0.26] vs 1.15 [0.28] mg/dL, P < .001; vitamin E, 8.72 [2.39] vs 10.94 [3.46] µg/mL, P = .01) and increased white blood cell apoptosis (neutrophils: 53.7% vs 35.7%, P = .005; lymphocytes: 40.1% vs 24.6%, P = .009). Arterial stiffness variables did not differ significantly between groups (mean augmentation index, –0.57% vs –0.47%, P = .09); however, the derived variables significantly correlated with total (r = 0.543, P = .02) and low-density lipoprotein (r = 0.631, P = .004) cholesterol in patients with CFS/ME but not in controls.
Conclusions Biomedical anomalies seen in adults with CFS/ME—increased oxidative stress and increased white blood cell apoptosis—can also be observed in children with clinically diagnosed CFS/ME compared with matched controls. Unlike in their adult counterparts, however, arterial stiffness remained within the reference range in these pediatric patients.
Author Affiliations: Vascular and Inflammatory Diseases Research Unit, The Institute of Cardiovascular Research, Centre for Cardiovascular and Lung Biology, Division of Medical Sciences, Ninewells Hospital and Medical School, Dundee, Scotland, United Kingdom.
Additional papers and Editorial in current edition:
Adolescent Chronic Fatigue Syndrome: A Follow-up Study
Stefan M. van Geelen; Rob J. Bakker; Wietse Kuis; Elise M. van de Putte Arch Pediatr Adolesc Med. 2010;164(9):810-814. ABSTRACT | FULL TEXT | PDF[Free Abstract, Payment required for full paper]
Abstract
Adolescent Chronic Fatigue Syndrome
A Follow-up Study
Stefan M. van Geelen, MPhil; Rob J. Bakker, MD; Wietse Kuis, PhD, MD; Elise M. van de Putte, PhD, MD
Objective To describe the symptomatic and educational long-term outcomes, health care use, and risk factors of nonrecovery in adolescent chronic fatigue syndrome (CFS).
Design Follow-up study.
Setting Academic pediatric hospital.
Participants Sixty adolescents with CFS.
Interventions Regular care.
Outcome Measures The Checklist Individual Strength, Child Health Questionnaire, and a general questionnaire regarding further symptoms, school attendance, work attendance, and treatment.
Results Complete measurements were returned for 54 adolescents (90%). At initial assessment, their mean (SD) age was 16.0 (1.5) years and 20.4% were male. The mean follow-up duration was 2.2 years. At follow-up, the mean (SD) age was 18.2 (1.5) years; 28 adolescents (51.9%) had nearly complete improvement of symptoms but 26 (48.1%) did not experience improvement. Adolescents who attended school (n = 41) had missed an average of 33% of classes during the last month. The rest (n = 13) had worked an average of 38.7% of a full-time job during the last month. A total of 66.7% of subjects were treated by a physiotherapist, 38.9% were clinically treated in rehabilitation, 48.1% had received psychological support, and 53.7% had used alternative treatment.
Conclusions About half of the adolescents had recovered from CFS at follow-up. The other half was still severely fatigued and physically impaired. Health care use had been high, and school and work attendance were low. Older age at inclusion was a risk factor, and pain, poor mental health, self-esteem, and general health perception at outcome were associated with an unfavorable outcome. Future research should focus on customizing existing treatment and studying additional treatment options.
Author Affiliations: Department of Pediatrics, University Medical Center Utrecht, Utrecht, the Netherlands.
Postinfectious Fatigue in Adolescents and Physical Activity
Yue Huang, PhD; Ben Z. Katz, MD; Cynthia Mears, DO; Gary W. Kielhofner, DrPH; Renée Taylor, PhD
Objective To compare adolescents who do and do not recover from acute infectious mononucleosis in terms of fatigue severity and activity levels before, during, and in the 2 years following infection.
Design Prospective case-control study.
Setting The baseline and 12- and 24-month evaluations occurred in the subjects’ homes. The 6-month outpatient visit occurred at Children’s Memorial Hospital in Chicago, Illinois.
Participants Three hundred one adolescents (aged 12-18 years) with acute infectious mononucleosis.
Main Exposures All participants were evaluated at baseline (during active infection). Six months following infection, 39 of them met criteria for chronic fatigue syndrome. These subjects were matched by sex and Tanner stage to 39 randomly selected screened-negative subjects. Both groups were reevaluated at 12- and 24-month follow-ups.
Outcome Measures Scores from the Fatigue Severity Scale and the Modifiable Activity Questionnaire.
Results For both groups, physical activity levels declined and sleep increased as a result of having mononucleosis. Compared with their matched controls, adolescents with chronic fatigue syndrome reported significantly higher levels of fatigue at all points and spent significantly more time sleeping during the day 6 and 12 months following infection. The 2 groups did not differ significantly in terms of physical activity levels before, during, or after infection. There was a consistent trend for decreased physical activity in the chronic fatigue syndrome group.
Conclusions Adolescents with chronic fatigue syndrome appear to be pushing themselves in an attempt to maintain similar activity levels as their peers, but paying for it in terms of fatigue severity and an increased need for sleep, particularly during the day.
Author Affiliations: Department of Occupational Therapy, College of Applied Health Sciences, University of Illinois at Chicago (Drs Huang, Kielhofner, and Taylor); and Department of Pediatrics, Northwestern University Feinberg School of Medicine and Children’s Memorial Hospital (Drs Katz and Mears), Chicago, Illinois.
Since this article does not have an abstract, we have provided the first 150 words of the full text and any section headings.
Chronic fatigue syndrome (CFS) is a disabling disorder that poses a significant personal and economic burden for patients, their families, and the community. It is increasingly recognized that CFS is prevalent in children and adolescents.1-2 In the young, the disability associated with CFS can be exacerbated by the effect of the illness on emotional and social aspects of development including social learning, autonomy, a sense of self, a healthy body image, relationships, sexuality, and academic development.3
After decades of hypothesis-driven research, the etiology and pathophysiology of CFS remains obscure, and curative therapies are not available. What have we learned from this poor outcome? For one, many now agree that the diagnostic label of CFS encompasses a heterogeneous group. This is supported by evidence from several studies (including one pediatric study2) showing that 3 to 5 distinct subclasses can be delineated from large, cross-sectional samples of individuals . . . [Full Text of this Article] [Payment required]
AUTHOR INFORMATION
School of Psychiatry, University of New South Wales, Sydney, Australia
—————–
BBC | BBC Scotland Health Correspondent | 7 September 2010
A study on children has found further evidence that ME, or Chronic Fatigue Syndrome, could be caused by a virus.
Scientists at the University of Dundee study found abnormalities in the white blood cells of children with ME/CFS, suggesting they had been fighting off infection…
…In the study, funded by ME Research UK and The Young ME Sufferers (Tymes) Trust, 25 children aged between seven and 14 with ME/CFS were assessed, along with 23 children of a similar age in a control group.
The report, published in the Archives of Paediatrics and Adolescent Medicine, said abnormalities were found in the blood of all the children with ME/CFS.
The results were similar to those previously identified in adults with the condition.
Samples taken from youngsters with ME/CFS contained higher than normal levels of free radicals – molecules that can damage cells, tissues and organs…
There should be quite a bit of coverage today of the new research in children, which The Young ME Sufferers Trust co-funded. I’ve done Radio 5 Live and BBC Northern Ireland radio so far. BBC Wales coming up. Prof Jill Belch has done interviews about the science for a number of channels.
I wasn’t able to say anything about this yesterday due to reporting restrictions. Will send out an Alert about the research later today.
Jane Colby
Executive Director
The Young ME Sufferers Trust
PO Box 4347
Stock Ingatestone
Essex CM4 9TE
Tel 0845 003 9002 www.tymestrust.org
The British Association of CFS/ME (BACME) appears to have taken over some of the functions of the CFS/ME Clinical and Research Network and Collaborative (CCRNC). There is no website for BACME and very little information available about the role and operation of this organisation.
Related information from the News section of the ME Association website (which includes extracts from BACME’s Constitution for which I do not have access to a full copy):
1] ME Association statement: NICE Guideline on ME/CFS – 2010 review process (UK)
2] ME Association statement: PACE Trial results in October (UK)
ME Association statement: NICE Guideline on ME/CFS – 2010 review process (UK)
1 September 2010
Having been led to believe that the proposed review of the 2007 NICE guideline on ME/CFS would be starting in August 2010 The ME Association wrote to NICE to seek clarification in the absence of any official announcement being made during August.
We received the following reply on 24 August:
Thank you for contacting the National Institute for Health and Clinical Excellence (NICE).
The review date which you refer to is the date at which we plan to begin the review process. We are currently beginning to gather evidence and opinions to inform our review proposal. If there has been a large amount of new evidence produced since the original guidance was produced, the review proposal may be to conduct a full review, which can take over a year. On the other hand, if there has not been very much new evidence produced, we may propose to delay the review.
The review proposal will be posted on our website for consultation in the months following the ‘review date’ listed in the guidance. To be notified of additions to web pages relating to your area of interest, including review proposals, you may like to sign up for our web alert system. You can do this via the following page of our website:
We also know that members of the original guideline development group have been asked for their opinion as to whether there is sufficient new evidence to justify a review at this time.
The important phrase here is large amount of new evidence produced since the original guidance was produced.
In NICE-speak this means results from randomised controlled trials into any aspect of management that have been published in reputable peer-reviewed medical journals since August 2007. The NICE guideline is primarily concerned with the clinical assessment and management of ME/CFS and does not get involved in coming to conclusions about causation – although NICE obviously has to take note of developments relating to causation, including the findings relating to XMRV and MLVs.
Having managed to fight off a Judicial Review of the ME/CFS guideline, NICE will be feeling confident that its guidance is sound and acceptable to both patients and doctors – a position which many patient support organisations, including the MEA, obviously strongly disagree with. And with very little in the way of new evidence being published in relation to the treatment of ME/CFS, and the fact that results from the PACE trial are fast approaching, it seems likely that NICE may decide to defer this review until later in the year, or even 2011, when they have this information – which could well strengthen their controversial recommendations regarding cognitive behaviour therapy (CBT) and graded exercise therapy (GET).
It should also be noted that NICE will not want to re-open the debate about existing evidence (ie results from clinical trials that were published up to the time of the 2007 guideline) – they want to look at new evidence.
The ME Association will obviously be challenging the current recommendations regarding the use of CBT and GET and to support out case we will be making use of the patient evidence (approx 4,500 respondents) from our 2010 Management Report – the largest ever survey of patient opinion ever carried out in the UK, probably in the world. This report can be accessed on-line here:
We are also consulting with various experts, including those with statistical knowledge, about how best to present our case to the review.
For information purposes the following explanation of how recommendations contained in a NICE guideline should be interpreted by clinicians when making decisions about patient management is worth noting. It clearly contradicts the mistaken view of some doctors that NICE guidelines are almost mandatory and as a result they are no longer able to exercise their clinical judgement where this is may not be entirely consistent with a guideline position.
NICE clinical guidelines are recommendations about the treatment and care of people with specific diseases and conditions in the NHS in England and Wales. Clinical guidelines represent the view of NICE, and are arrived at after careful consideration of the evidence available. Healthcare professionals are expected to take it fully into account when exercising their clinical judgement. However, the guidance does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer, and informed by the summary of product characteristics of any drugs they are considering.
Implementation of this guidance is the responsibility of local commissioners and/or providers. Commissioners and providers are reminded that it is their responsibility to implement the guidance, in their local context, in light of their duties to avoid unlawful discrimination and to have regard to promoting equality of opportunity. Nothing in this guidance should be interpreted in a way that would be inconsistent with compliance with those duties.
With regards to technology appraisal guidance, this type of guidance contains recommendations on the use of new and existing medicines and treatments within the NHS. The NHS is legally obliged to fund and resource medicines and treatments recommended by NICE’s technology appraisals, usually within 3 months of guidance being published.
Ed: This BACME conference and AGM is being held in Milton Keynes on 13 and 14 October and is faciliated by AYME who have collaborated in CCRNC conferences.
Download PDFs for BACME Provisional Programme and Registration Form here:
2] ME Association statement: PACE Trial results in October (UK)
3 September 2010
It is being reported today in Link magazine (issue 39, September 2010) that:
Data collected for the one year follow up of the PACE trial is currently being analysed in preparation for publication of the findings.
Professor Peter White of St Bartholomew’s Hospital, London will report on the most up-to-date progress and baseline data from the PACE trial to delegates at the British Association of CFS/ME (BACME) October conference.
The release of this PACE trial information may well have an effect on a decision by NICE as to when they commence a review of the 2007 Guideline on ME/CFS.
A statement and more information on the NICE Guideline review can be found in the September news section on the MEA website.
British Association of CFS/ME (BACME)
2010 Conference
Draft Program – please note there may be changes before final program
Milton Keynes 13-14 October
Wednesday 13 October
9.30 -10.30 Registration and coffee
10.30-11.00 Opening Address:
Prof Stephen Holgate MRC (Medical Research Council) Clinical Professor of Immunopharmacology.
“The time has at last arrived to strengthen research into CFS and ME”
11.00 – 12.00 Keynote Speaker: Professor Daniel J. Clauw MD Division of Rheumatology University Michigan
“Advances in Our Understanding of CFS and Overlapping Conditions”
12.00 – 1.30 Lunch Hot and Cold Buffett (preference to be booked)
1.30 -2.15 Dr Alison Wearden Reader in Psychology: FINE Trial
“Pragmatic rehabilitation for Chronic Fatigue Syndrome/ME”
2.15 – 3.00 Judith Harding:
The Role of Diet Management in CFS/ME
3.00 – 3.30 Comfort Break
3.30 – 5.00 Uni – professional Networking Groups.
To be facilitated please contact maryjane@ayme.org.uk asp if you would like to request a specific group e.g physiotherapists, nurses, paediatricians
5.00 – 6.00 BACME AGM Chairperson: Gill Walsh
(for existing and new members)
7.30 Conference Dinner (to be pre-booked separately)
Thursday 14 October
9.00 Registration & Coffee
9.30 – 10.45 Workshop 1
10.45 – 11.15 Coffee & Comfort Break
11.15 – 12.30 Workshop 2
12.30 – 1.45 Lunch Hot and Cold Buffett (preference to be booked)
1.45 – 2.15 Poster Presentations – Organiser Gabrielle Murphy
Posters will be on display for the whole 2 days
2.15 – 2.45 Coffee & Comfort Break
2.45 – 3.30 Diane Cox & Heather Garry
Video Conferencing for delivery of CFS/ME Interventions at Home (Tele-rehabilitation)
3.30 – 4.30 Professor Peter White
St Bartholomew’s Hospital London
“PACE trial: so near yet so far”
(If outcome results are not yet published, Peter White will present the design, progress and baseline data from the trial)
4.30 – 5pm Closing Address – To be announced
WORKSHOPS
1. Working with the Severely Affected – Leeds Service
2. Mindfullness and ME –The Mindfull Approach to Chronic Illnesses Steve Johnson, Director of the Breathworks Foundation
3. Review of Literature and Clinical Implications on Sleep (please note this is not a workshop) Gabrielle Murphy & Alex Westcombe
4. To Be Announced
5. Research workshop – How to do research successfully when you are a busy clinician – Professor Peter White
Gabrielle Murphy
Physician working in the Fatigue Service at the Royal Free Hospital and Clinical Lead. She also works in the Department of HIV medicine. Her interests include medically unexplained symptoms MUS). Also involved in local and national organisations promoting access to CFS/ME services and ongoing research.
Dr Helen Chubb
Senior Registrar, Whitchurch Hospital Chronic Fatigue Syndrome – personality and attributional style of patients in comparison to healthy controls and depressed individuals: Helen. L. Chubb; Irene Jones; Janice Hillier; Christopher Moyle; Stephanie Sadler; Tanya Cole; Kate Redman; Anne Farmer
DOI: 10.1080/09638239917274 Journal of Mental Health, Volume 8, Issue 4 August 1999 , pages 351 – 359 http://www.informaworld.com/index/T32L42TTQ9N74DN3.pdf
It is of considerable public concern that Dr Esther Crawley has sought to obtain the advice, guidance and involvement of a Lightning Process practitioner who, in June, was subject to an Advertising Standards Authority ruling in relation to claims made in an advertisement about the efficacy of the Lightning Process for CFS and ME [1].
In July, in this background posting, I reported that Bournemouth Lightning Process instructor, Alastair Gibson, had already identified himself, on the “Withinspiration website”, as “one of the two practitioners working with the NHS and the young people” in the Dr Crawley led pilot study into Lightning Process for children aged 8 to 18 [2].
At 29 March, Mr Gibson’s website had carried this information:
“Breaking News – NHS and Lightning Process research collaboration.
“A new pilot study involving the Lightning Process and the NHS has been awarded £164,000 for research into the treatment of CFS/ME in children and adolescents. Alastair Gibson is one of the two practitioners working with the NHS and the young people in this exciting research study. Find out more.”
That statement no longer appears on his website and it is unclear whether Mr Gibson retains an involvement with this proposed pilot study.
At 27 August, according to the University of Bristol’s FOI officer, the study had yet to obtain ethics approval. A research protocol and other information was supposed to have been published on the University of Bristol’s website by the end of August – regardless of whether the study gained approval [3].
This material has failed to appear.
The Old Bailey Online site is a fully searchable collection of 197,745 criminal trials held at London’s central criminal court:
In the 1700s, Old Bailey court reports included advertisements and this one caught my eye:
Old Bailey Proceedings, 27th February 1712
“All Melancholy, Hysterical and Hypochondriacal Distempers, which variously affect the Mind with strange Fears, and dismal Apprehensions, Paintings, and Sinkings of the Spirits, great Hurries, Restlesness and Disquietment (little understood, and seldom cured by any common Means) also Pains and Giddiness of the Head, Risings to the Throat, Sick-fits, Tremblings, Oppressions of the Heart, or any other Disorders caus’d by Vapours, are successfully cured (with God’s Blessing) by a Physician well experienc’d therein, and of more than 20 Years Practice in those deplorable Cases; who also cures all kind of Fits, tho’ strange and violent, if curable; which he informs on sight of their Water. Living next door to Shadwell Coffee-House in Upper-Shadwell, near London; where those that have occasion, and live remote, may direct their Letters, and they shall be speedily answer’d, or attended on, if desired.”
Well little changes, because in 2010, the sites of some Lightning Process practitioners are still making the following claims:
“What does it work for?
“People using the Lightning Process® have also recovered from, or experienced significant improvement with the following conditions: -
“Fibromyalgia
Chronic Fatigue Syndrome
Post Viral Fatigue
Asthma
Rheumatoid Arthritis
Hayfever
Depression
Dyspraxia
Bipolar Disorder
Ocd
Anxiety And Panic Attacks
Insomnia
Cerebral Palsy
Low Self Esteem
Parkinsons Tremors
Motor Neurone Disease
Hyper And Hypo Thyroidism
Chronic Aches And Pains
Ibs
Lyme Disease
Anger Issues
Food Intolerances
Coeliac Disease
Ptsd
Candida
Allergies
Type 2 Diabetes
Interstitial Cystitis
Migraines
Noise And Light Sensitivity
And Many More”
“Using the Lightning Process® has proven effective for clearing ALL the debilitating physical and mind based symptoms of ME, chronic fatigue syndrome, and post viral syndrome.
“Some of the symptoms that people have cleared are listed here…
“Addictions, adrenal problems, allergies and intolerances, anxiety, balance problems, bloating, blurry vision, brain fog, candida, chemical sensitivity, compulsive behaviours, concentration problems, confusion, constipation, depression, diarrhoea, dizziness, electrical pulsing sensations, excessive sleeping, exhaustion, fatigue, fear, feeling detached or disconnected, fever and chills, flu-like symptoms, frequent coughs and colds, fybromyalgia, hallucinations, head pain or pressure, heartburn, indigestion, insomnia and other sleep disturbances, irritability, irritable bowel syndrome, itching and rashes, itchy eyes, joint pain, light sensitivity, loss of vision, malaise, memory loss, migraines, muscle pain, nausea, noise sensitivity, oedema, panic attacks, painful and/or swollen glands, pins and needles, restless leg syndrome, runny nose, sensitivity to electrical fields/computers/mobiles etc, shaking, shooting pains, skin sensitivity, stomach pain, sun burn sensation, swelling, temperature control problems, thrush, thyroid problems, unrefreshing sleep, vertigo and similar sensations, vomiting, water retention, watering eyes, weakness…..and probably many more
“We advise you to consult your GP, have the necessary tests and obtain a diagnosis before applying for the Lightning Process® training programme”
The Phil Parker Lightning Process website and the sites of some Lightning Process practitioners have a “FAQ” page which includes the following:
“Can my doctor assess me for readiness?
“If your doctor or health care specialist is trained as a Lightning Process Practitioner then of course they can assess you for readiness to take the programme. If they are not trained in the programme they will not have the requisite skills or knowledge base about this very specialised field to assess you.
“A large part of the training for LP practitioners is to train them to appropriately assess potential trainees for their suitability for the process, as it is essential to ensure, as far as is possible, that only those who are ready to get benefits from the training program are enrolled in the training.”
So, according to Mr Parker, your doctor is not capable of assessing patients for “readiness” to undertake the Lightning Process.
How and by whom are the potential child participants in the RNHRD NHS FT Bath/University of Bristol pilot study going to be assessed for “readiness” and suitability to undertake the “training”?
We don’t know, because the University of Bristol is withholding virtually all information requested by me under Clause 22(1)(a) of the FOI Act.
The Lightning Process is controversial and untrialled. It is marketed by the Phil Parker organisation not as a therapy or a treatment but as a “training program” delivered by “instructors” or “practitioners” or “coaches”.
Instructors are trained and licensed by the Phil Parker organisation and are not accountable to any regulatory professional body. If individuals have complaints about a practitioner or about the Lightning Process, itself, which cannot be resolved directly with the practitioner or through the Phil Parker complaints procedure, their only recourse is Trading Standards.
Currently, the Advertising Standards Authority’s remit does not extend to website content. But this is to change in March 2011.
The Advertising Standards Authority has issued this news release today:
The digital remit of the Advertising Standards Authority (ASA) is to be extended significantly to deliver more comprehensive consumer protection online.
The ASA’s present remit online includes ads in paid-for space and sales promotions wherever they appear. But from next year, the rules in the UK Code of Non-broadcast Advertising, Sales Promotion and Direct Marketing (the CAP Code) will apply in full to marketing communications online, including the rules relating to misleading advertising, social responsibility and the protection of children. The remit will apply to all sectors and all businesses and organisations regardless of size.
The Committee of Advertising Practice (CAP), the body responsible for writing the CAP Code, has decided to extend the digital remit of the ASA in response to a formal recommendation from a wide cross-section of UK industry. CAP has today published a document detailing the new remit and sanctions.
The new remit will ensure the same high standards as in other media and will cover:
• Advertisers’ own marketing communications on their own websites and;
• Marketing communications in other non-paid-for space under their control, such as social networking sites like Facebook and Twitter.
Journalistic and editorial content and material related to causes and ideas – except those that are direct solicitations of donations for fund-raising – are excluded from the remit.
Sanctions
In addition to the ASA’s present sanctions, which already achieve a high level of compliance, CAP member bodies have agreed new sanctions to apply to the extended remit such as:
• Removal of paid-for search advertising – ads that link to the page hosting the non-compliant marketing communication may be removed with the agreement of the search engines.
• ASA paid-for search advertisements – the ASA could place advertisements online highlighting an advertiser’s continued non-compliance.
Funding
The industry has agreed to apply the standard 0.1% levy on paid-for advertisements appearing on internet search engines through media and search agencies. This is an extension of the existing funding mechanism in other media that pays for the ASA and it will be supplemented initially with seed capital from Google.
Implementation
The remit will come into force on 1 March 2011 after a six month period of grace to allow the ASA and CAP to conduct training work to raise awareness and educate business on the requirements of the CAP Code, particularly amongst those who may not previously have been subject to ASA regulation. Website owners and agencies are urged to sign up to CAP Services to receive guidance and training to help ensure their sites comply with the new rules
before 1 March 2011.
ASA Chairman Lord Chris Smith said, “This significant extension of the ASA’s remit has the protection of children and consumers at its heart. We have received over 4,500 complaints since 2008 about marketing communications on websites that we couldn’t deal with, but from 1 March anyone who has a concern about a marketing communication online will be able to turn to the ASA.”
CAP Chairman Andrew Brown said, “Extending the online remit of the ASA has been a top priority for UK industry over the last couple of years. Our aim has been to extend further in the online world the principles that are already well established in our system, namely those of effective consumer protection and fair competition.”
[2] Background to this issue: Advertising Standards Authority (ASA) Adjudication: Withinspiration (Lightning Process) http://wp.me/p5foE-2Vt
[3] Update on ethics approval for the Dr Esther Crawley led RNHRD NHS FT Bath/University of Bristol Lightning Process pilot study for children aged 8 to 18: http://wp.me/p5foE-341
On 4 August 2010 The ME Association and The Young ME Sufferers Trust (Tymes Trust) issued a joint statement that expressed a number of concerns about the proposal to carry out a feasibility study, involving children and adolescents with ME/CFS, into the use of the Lightning Process.
We also sent a copy of this statement to the Department of Health with a request that it should be forwarded to the ethics committee that will be examining this proposal. This is because we believe the ethics committee should be aware of widespread concerns being expressed by people with ME/CFS about the trial. Our statement also contained information about an adjudication from the Advertising Standards Authority and interventions by several trading standards officials – both in relation to therapeutic claims being made for the Lightning Process which we believe the ethics committees must be aware of when reviewing this proposal.
The Department of Health have refused to forward this information to the ethics committee on the grounds that
“We expect research ethics committees to consider all the relevant evidence, but they have to be seen do so objectively and impartially and to arrive at their decisions independently if they are to command public confidence and the credibility of all the stakeholders concerned. For this reason, it would be inappropriate, as well as potentially counterproductive, expressly to bring your joint statement to the attention of the research ethics committee reviewing the proposal for this project..”
We profoundly disagree with the DoH’s reasoning, which we consider carries serious implications for the integrity of the scientific process. Whether or not an ethics committee membership is confidential, it should still be possible for essential evidence to be supplied to them. How else can the public be assured that an ethics committee has all the relevant evidence to consider before reaching its decision?
The two charities are unable to forward this statement direct because the identity and location of the relevant ethics committee is not in the public domain.
We are now considering what further action to take.
