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Minutes of the meeting of the All Party Parliamentary Group on M.E. held at 1.30pm, Thursday 12th July 2007 Committee Room 17, House of Commons
PRESENT
Dr Des Turner MP (Chair)
Dr Ian Gibson MP (Secretary)
David Amess MP (Treasurer)
Celia Barlow MP
John Bercow MP
Koyes Ahmed (Office of Dr Des Turner MP)
Sir Peter Spencer, Action for M.E.
Heather Walker, Action for M.E.
Neil Riley, The ME Association
Dr Charles Shepherd, The ME Association
Tony Britton, The ME Association
Doris Jones, 25% Group
Tanya Harrison, BRAME
Christine Harrison, BRAME
Barbara Robinson, Suffolk Youth & Parent Support Group, member of EAME
Rosemary Page, Cambridge M.E. Support Group
Richard Crossich, North London ME Network
Hazel Griffiths, North London ME Network
Di Newman, Peterborough ME and CFS Support Group
Paul Davis, RIME
Joy Birdsey, RIME
Bill Kent, ReMEmber
Janice Kent, ReMEmber
Colin Barton, Sussex and Kent ME/CFS Society
Jill Piggott, Worcester ME Support Group
Dr Terry Mitchell, Great Yarmouth and Waveney PCT
Barbara Boyden, Peterborough Team Nurse
Dr Anne Gerken, Norfolk & Suffolk M.E. service
Doug Fraser (?), Hammersmith Group
Brook Hoadley, parent of teenager with M.E.
Annette Barclay, person with M.E.
Christine Russo, person with M.E.
Augustine Ryan, person with M.E.
Criona Wilson, mother of the late Sophia Mirza
1. Welcome
Dr Des Turner thanked everyone for attending and welcomed them to the meeting, particularly the main speaker – Dr Terry Mitchell, the regional NHS clinical champion for M.E./CFS in East Anglia. Read the rest of this entry »
On Monday, 23 July, The Times published an article in the Health section of Times2 called “Mum, nothing works. I can’t move”. You can read and comment on the article here
This article was a tie in with the Radio 4 programme “Leo, Rusty and ME”, produced by Leo’s BBC radio producer mum, Jane Ray, and broadcast on Friday, 27 July.
The programme was structured around clips from audio “diaries” begun by the family following the onset of Leo’s illness, two years ago. When Leo was sufficiently recovered to undertake the travelling and cope with the length of the sessions, he was persuaded to try the “Lightning Process”. According to The Times article, Leo, now 13, has returned to school part-time. We wish him all the best for a complete recovery.
On Monday, 30 July, BBC Radio 4 presented a follow-up to this programme during their regular edition of You and Yours.
Professor Leslie Findley, Essex Neurosciences Unit and a medical adviser to AfME and Gerri de Vries, a Lightning Process practitioner, took part in this follow-up item along with Leo’s mother, Jane. Dr Trish Taylor of AfME contributed via a phone link. There were no contributions from any other organisations or individuals, although we were told that the ME Association had been approached for background information.
A large proportion of the slot allocated to Monday’s follow-up was given over to extracts from the previous Radio 4 programme “Leo, Rusty and ME”, including the section where child and adolescent psychiatrist, Dr Sebastian Kraemer, is quizzing Leo during a hospital appointment and the section where Leo’s friend encourages him to try Phil Parker’s “Lightning Process”.
Towards the end of Monday’s follow-up (billed as “ME latest knowledge”) You and Yours presenter, Peter White, raised the issue that in Friday’s broadcast of “Leo, Rusty and ME”, listeners did not hear anything about any other types of treatment for ME/CFS [other than LP].
Instead of picking up on Peter White’s lead and opening out the discussion by bringing in the lack of effective treatments and the urgent need for funding for biomedical research, Professor Findley says something about there being no controlled trials and anchors the topic firmly back to LP by introducing a reference to a pilot study being undertaken into the Lightning Process. No-one else has been invited onto the programme to talk specifically about ME research into causes and treatments, recent UK and international developments or to explore the controversy over the dearth of MRC funded biomedical research, and Findley has the floor.
Having already talked about how ME can be successfully “managed”, Professor Findley goes on to talk about physical and psychological “perpetuating factors”, citing anxiety, stress, depression, problems with relationships…
In March 2007, AfME’s magazine, InterAction, ran an article on the Lightning Process [Issue 59, page 39] in which Professor Findley states that he is “…undertaking a clinical study into the [LP] process”. In his contribution to this InterAction article, Professor Findley goes on to say:
Over recent months, Gerri de Vries, an LP practitioner and occupational therapist with huge experience in fatigue syndromes, and I have been assessing individuals and offering treatment to those we consider likely to benefit from the process. Each patient has been properly assessed in advance and is being followed up by a therapist and physician. This is an open clinical study to try and provide data to argue the case for a proper clinical trial in the conventional sense. We hope to have some data to publish over the next few months.
But Professor Findley omitted to disclose, in yesterday’s broadcast, that he is overseeing this LP trial. Nor was it disclosed that his colleague, Gerri de Vries, also taking part in the programme, is not just an LP practitioner but also working on this trial with Professor Findley. Their professional interest and their personal involvement with this pilot study using Lightning Process techniques should have been transparent. This issue has been raised with the You and Yours production team.
Who is funding this pilot study and how much is it costing?
The chances are, Phil Parker won’t be forthcoming. So we will rely on Professor Findley to supply this information and we’ll report back with his responses.
In February 2007, ME agenda had emailed Phil Parker with a number of questions after spotting the following on Phil Parker’s LP website:
We are pleased to report that we are currently undertaking research, using established scientifically valid research protocols, under the scrutiny of a leading authority in the field of M.E/CFS.
We asked Mr Parker:
Who is the Principal Investigator, please?
Who is the “leading authority” in ME/CFS who is supervising this research project?
Which research criteria are being used in order to select subjects, ie. Oxford, Fukuda, Canadian?
Myalgic encephalomyelitis is indexed in the WHO [ICD] under G93.3, what condition is myalgic encephalitis?
In his response, Mr Parker told us that the “leading authority” in the field had specifically asked that the details of the project should not be fully reported until the findings were in. Mr Parker also stated that it appeared that there was such interest and bias within the field that revealing too much at this stage would cause discussion that would be inappropriate to where the project was at that time.
In response to our question about criteria he responded that the diagnostic criteria used is Fukuda and that the data set uses a range of standard tests including HADS, SF-36 and VAS. Mr Parker ends by asking us if we could we let him know why we are asking these questions?
Why should Mr Parker be apparently so uncomfortable about releasing basic information about a research study and why did Professor Findley and Ms de Vries not disclose their interest in this trial in yesterday’s broadcast?
It was noted that the illness was introduced at the start of yesterday’s You and Yours item using the term “Myalgic encephalitis” (apparently Mr Parker’s preferred term) and not as “Myalgic encephalomyelitis”, as more commonly termed, and as indexed in WHO ICD: G93.3. This point has also been raised with the production team.
Rather than present a balanced overview of “latest knowledge” this follow-up came across as little more than a promotion for NLP and the “Lightning Process”; Ms De Vries also manages to slip in a plug for Phil Parker’s new book.
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Written answers: Chronic Fatigue Syndrome: West Midlands
19 July 2007 : Column 597W
Richard Burden: To ask the Secretary of State for Health if he will make a statement on the closure of the Birmingham / West Midlands Clinical Network Co-ordinating Centre for myalgic encephalomyelitis. [150768]
Dawn Primarolo: The local national health service determines the configuration of local services and organisations, including those organisations that provide services to patients with chronic fatigue syndrome / myalagic encephalomyelitis.
[Dawn Primarolo MP was appointed Minister of State for Public Health at the Department of Health in July 2007. See Department of Health for political background.]
The new DWP guidance is now published on the website of Department for Work and Pensions (DWP)
This medical guidance for Disability Living Allowance and Attendance Allowance Decision Makers has been developed by the Departments Health and Benefits Division with help from experts involved in patient care. It contains background information on the more common medical conditions in DLA/AA claims, their treatment, the likely disabling effects together with the likely impact on ability to self care and get around. At present the guidance does not cover children.
The new guidance replaces sections in the Disability Handbook which will eventually be withdrawn when the new guidance covers all conditions presently in the DHB.
If you have any comments please contact Craig Isherwood, DCS Customer Consultation Manager, Email Craig Isherwood
Entry for Chronic Fatigue Syndrome (CFS/ME)
What is Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME)?
Greg & Linda Crowhurst
July 20th 2007
The 25% Group does not consider the Final version 10 of the DWP document CFS/ME Guidance to be about ME, instead it concerns itself with psychiatrically-defined Chronic fatigue Syndrome; this is clearly obvious from the minimal list of symptoms and the recommended psychiatric management strategy. It is certainly not about severe ME.
As this document stands it does not represent a fair or accurate picture of the person suffering from ME as defined by WHO (ICD10:G93.3) and will steer the way to unhelpful and incorrect assessments. Read the rest of this entry »
In a statement released yesterday, AfME (Action for ME) states that it does not support the new DWP medical guideline for DLA decision makers and calls for the guideline’s withdrawal. AfME writes:
We reject the basic approach in which “evidence-based medicine” principles have been too narrowly applied in circumstances where so little research evidence is available. Too much weight has been given to a small number of unrepresentative Randomised Controlled Trials. The results of these trials have been extrapolated to make invalid claims about the effectiveness of Cognitive Behavioural Therapy and Graded Exercise Therapy. The experience of patients and experienced clinicians has been largely ignored.
What credence can members of AfME and the wider ME community give to statements such as these when just a week ago, details of the NHS Collaborative Conference on CFS/ME were released?
The programme for this conference has been developed by the National NHS Collaboration and the National Network for CFS/ME Therapists in collaboration with ME/CFS patient organisations AfME (Action for ME) and AYME (Association of Young People with ME). AfME’s and AYME’s logos appear on conference flyers and programme information.
Presenters include Vincent Deary (formerly King’s College London CFS Unit), Trudie Chalder (Professor of Cognitive Behavioural Psychotherapy, Department of Psychological Medicine, King’s College London and a colleague of Professor Simon Wessely) and Dr Mary Burgess (Chronic Fatigue Syndrome Research and Treatment Unit, KCL).
ME/CFS charity members and non charity members incensed by AfME’s endorsement of this conference should contact Sir Peter Spencer and demand that the new CEO of AfME account for his organisation’s involvement with this convention of CBT/GET proponents.
Details of the NHS Collaborative Conference can be read on ME Agenda here
The DWP medical guideline for DLA decision makers on ME/CFS
Statement from AfME (Action for ME)
Action for M.E. does not support the DWP guideline.
We reject the basic approach in which “evidence-based medicine” principles have been too narrowly applied in circumstances where so little research evidence is available. Too much weight has been given to a small number of unrepresentative Randomised Controlled Trials. The results of these trials have been extrapolated to make invalid claims about the effectiveness of Cognitive Behavioural Therapy and Graded Exercise Therapy. The experience of patients and experienced clinicians has been largely ignored.
The methodology is inconsistent with fundamental principles stated in the Government’s own policies, including:
1. The National Service Framework for Long Term Conditions, which states that: “Randomised Controlled Trials and other quantitative methodologies are not necessarily best suited to research questions involving long term outcomes, varied populations with complex needs and assessment of impact on quality of life rather than a cure.”
2. Patient-derived evidence has been given so little credence as to marginalise the patient voice. This contravenes the central principle of the White Paper, ‘Our Health, Our Care, Our Say,’ which puts the patient at the heart of the NHS.
3. The imbalance of the document will in practice tend to reduce patient choice of treatment in contravention of a key tenet of NHS and Government policy as set out in the Department of Health document, ‘Choice Matters – Putting Patients in Control’.
4. The definitions of moderate and severe conditions are wholly inadequate and have completely ignored the advice given by Action for M.E. and other M.E. organisations. This leads to a high risk that people with M.E. will encounter even greater difficulty than they do now in obtaining the allowances and support to which they are entitled and which they desperately need.
5. Action for M.E. would wish that this guideline be withdrawn; a view shared by virtually all the other M.E. organisations.
6. However, if the DWP nevertheless decides to ignore our very strong advice, then we will use our membership and wider contacts with people with M.E. to monitor very closely implementation by DLA officials. If there is any evidence of the guideline resulting in people with M.E. experiencing greater difficulty in making claims or getting poorer support, then we will campaign very vigorously for the guideline to be amended appropriately or withdrawn.
Ends
20 July 2007
A full copy of the DWP medical guideline for DLA decision makers on ME/CFS can be read on ME Agenda here
At present I cannot think of one MP with enough grasp of the situation for ME/CFS sufferers (the damaging effects of the psychiatric paradigm, its flawed evidence and irrationality as a belief system, the systematic attack on patients as deviant not ill, the biomedical evidence demonstrating physiological abnormality and now ongoing infections being ignored just for starters) to mount a cogent response in parliament in a debate.
The Gibson Report was privy to huge amounts of high quality evidence – and even they got things spectacularly wrong, to the point where Chalder’s notions of mind over matter is now being touted as ‘biomedical research’, advocates were constructed as unreasonable and hostile, the children’s section was positively dangerous (and this list of damage is not exhaustive!)
The problem is that ME/CFS, and the new emerging stuff like borreliosis and other infections being found, is a very complex subject, both scientifically and politically. We have already seen that the charities are incapable of addressing these complexities in any meaningful way. How can we expect MPs to do so? (I don’t mean that morally- I mean literally!) Especially if, for a very recent example, they are NOT being briefed as to the strength of opposition to the ‘clinics’, because people are being prevented from speaking this opposition, or discredited if they succeed, by charity reps among others.
I’m not saying people should stop political or parliamentary campaigning. Not at all. For example, the submissions to the Health Commission on NICE were spot on, and gave suitable exposition to a complex subject (though I can’t help but worry how the committee itself will deal with such information. Are they capable of grasping, let alone committed to rectifying, the situation?) I do think politicians are NOT able to deal with complex subjects very well – but this does not necessarily mean that we shouldn’t trouble them with complex subjects! However, it does mean we should always proceed with care, and we should be exploring alternative strategies such as litigation also.
But the last attempt at an EDM was full of dangers for people, especially when certain charities attempted to take control of the process, with their limited understanding of the issues and refusal to consult. At this stage a parliamentary debate could well go the way of Gibson, down the path of confusion and rubber stamping of the psychiatric paradigm in all its guises.
I think there are certain questions we should be asking ourselves (and no doubt people are): what are the possible benefits and what are the risks of either option? Having done this for myself – I would conclude that at this stage both options have risks which far outweigh any potential benefits.
Angela Kennedy
20 July 2007
Note:
1] John Bercow, MP for Buckingham is a Patron of the ME Association. This interest has not been disclosed in the 25% ME Group material below.
2] The Gibson Report was published without consultation in November, 2006, and an electronic copy sent to all MPs. The Group on Scientific Research into Myalgic Encephalomyelitis [the GSRME] which undertook this unofficial inquiry and published this unofficial report disbanded in May, 2007 because half of the panel were no longer willing to attend meetings, to continue to engage with the work of the Group or willing to consider amendments to the Report. As a result, the factual inaccuracies, errors, ambiguities and omissions identified in the Report, post publication, by UK national ME charities, campaigning organisations and the ME patient community remain unaddressed and the Group does not intend to issue a revised and corrected version of this document.
3] Dr Gibson suspended his plans for laying down an EDM based on the Report of the GSRME in March, 2007, claiming that he was “not prepared to submit an EDM that will lead to a counter campaign asking MPs not to sign it.” The ME Association subsequently reported that “Dr Ian Gibson MP will not launching the EDM while there is a very real prospect of a counter-campaign being mounted against it by an ME activist faction.”
Readers should be aware that no threat of mounting any “counter-campaign” against this proposed EDM had been made and at no time had it been suggested that Dr Gibson should withdraw his plans for launching an EDM. The concerns were, firstly, that if the GSRME panel were unwilling to make corrections and amendments to the Report in response to the concerns brought to its attention by national ME charities, ME organisations and the ME community then the GSRME panel would be expecting the charities to campaign on the basis of an EDM which promoted a flawed report known to contain inaccuracies and ambiguities potentially detrimental to the welfare of vulnerable sectors of a patient community and which could not be considered fit for purpose; secondly, that Dr Gibson had failed to properly consult with the ME community over the proposed content and wording of the EDM.
4] The 25% ME Group has prepared a form letter that can be used for sending to MPs requesting a debate on ME which can be downloaded from the 25% ME Group’s website. The form letter draws attention to the Report of the GSRME. At the public meeting of the GSRME, in February, this year, Doris Jones had raised several significant concerns about some sections of the Report, on behalf of herself and on behalf of the 25% ME Group and had also called, specifically, for a rewrite of the section on ME in Teenagers and Children [Section 2.4].
Why then are the 25% ME Group and Doris Jones (who assisted in the preparation of this form letter) prepared to endorse this flawed, uncorrected and unrevised document?
5] The ME Association (of which Mr Bercow is a Patron) also raised criticisms and concerns, verbally and in writing, about specific sections of the “Gibson Report” at the GSRME public meeting, but this organisation is also actively promoting this document as a campaigning tool. The March/April issue of the ME Association’s magazine “ME Essential” carried a promotion of the (already suspended) EDM. The ME Association stated in its “Summary” of the July APPG on ME meeting that with reference to the proposal for a parliamentary debate it is preparing a comprehensive media and political briefing paper on the issues of DWP medical guidance, NHS Plus occupational health guidance, NICE guidelines, NHS services and MRC research strategy which can be used for both media and political campaigning.
It is likely that this forthcoming ME Association briefing paper will be rolled out on the back of the flawed “Gibson Report”.
6] The Countess of Mar, who was a member of the GSRME panel, is a Patron of the 25% ME Group.
Issued by the 25% ME Group, 19 July 2007
At the All Party Parliamentary Group Meeting on ME held at the House of Commons on 12.7.2007 the principal topic of discussion concerned funding problems for specialist services for ME/CFS patients, experienced particularly in the Norfolk/ Suffolk/Cambridgeshire areas, as reported by Dr Terry Mitchell, but also applying generally throughout the country.
However, John Bercow MP for Buckingham said he had recently visited Dr Charles Shepherd and was aware of many urgent problems affecting ME patients. The MEA’s office was in his constituency and therefore he had a special interest in the subject. He suggested that the combination of a very critical current situation, a reshuffle of ministers and a change in governmental appointments offered a timely opportunity to call for a parliamentary debate on ME. This proposal was endorsed by Dr Des Turner MP, Chairman of the APPG on ME, and supported by all those present. It was stressed that it would be necessary for numerous requests to be made for such a debate, and therefore patients should contact their MPs urgently with such requests. Dr Turner stated there were a number of critical issues to be discussed: funding for clinical services, the general lack of research, several new guidelines (e.g. NICE, DWP, NHS Plus), Dr Gibson’s Report etc. Hence this would need to be a long debate of at least one hour.
It is understood that this proposed parliamentary debate will replace the previously proposed Early Day Motion, following the release of Dr Gibson’s Report.
We urge all our members to write urgently to their MPs requesting an early parliamentary debate on ME.
25% ME Group
21 Church Street
Troon
Ayrshire
KA10 6HT
Simon Lawrence
19 July 2007
The 25% ME Group’s form letter can be read here
