--- On Fri, 7/8/09, ooiknow wrote: STATEMENT RE NHS HEALTHCARE DEVELOPMENTS. [PERMISSION TO REPOST] To whom it may concern, It has been announced by journalist Sarah Hall of the Eastern Daily Press online/newspaper that Norfolk and Suffolk NHS are to have a revamped NHS "ME" service. I am mentioned as an aside in Ms Hall's article but did not have any contact with her on this matter. Elsewhere it has been announced both that this new service was agreed with local patients and that it will follow the NICE 'CFS/ME' Guidelines (CG53). As far as I am aware such a service has NOT in fact been agreed with local patients (and certainly not this ME patient), and having spent over a year trying to have the disgracefully unscientific NICE CG53 struck down in the High Court (see below) I am appalled that any NHS clinician or service should seek to comply with CG53 as it has rightly been widely condemned - with, for example, the chairman of a parliamentary group of inquiry stating: "I do not believe that the NICE CFS/ME Guidelines are fit for purpose." (see below). For the record, and briefly because I am still trying to recover my health after the High Court ordeal and am presently dealing with extremely difficult personal circumstances, please note the following: 1. In 2006, Dr terry Mitchell, who adopted and endorsed the erudite International Expert Panel ME Guidelines[1] on the back cover of the overview version, announced his intention to retire as CNCC lead of the Norfolk, Suffolk and Cambridgeshire NHS ME/CFS service. 2. In Autumn 2006, the East Anglian ME Patient Partnership (EAME), a biomedical campaign group whose membership comprised individual ME Activists as well as ME Support Group executives from Cambridgeshire, Suffolk and Norfolk (the latter, Norfolk, being the most numerous of all groups represented in EAME), decided that, in spite of the tendency of NHS officials to only appear to listen to patients, it was right for us to engage with them and push for a full biomedical ME clinic (the rationale being that if we did not argue for a biomedical clinic the local NHS would claim patients had not asked for one when they gave us something much less satisfactory. This constructive action was voted upon by all present and carried with an overwhelming majority. 3. With the full and energetic support of Dr Terry Mitchell therefore, we engaged in a prolonged campaign to have a new Norfolk & Suffolk NHS ME service run jointly by Dr Jonathan Kerr and Professor Basant Puri, with part-time paediatrics support from Dr Nigel Speight, on a proper scientific/biomedical evidence-based basis[2] using the above mentioned International Expert (Canadian) patient selection criteria. We had been in discussion with these professionals for some time who were fully in agreement and involved with our aims - with Dr Kerr and Prof Puri both giving presentations of their hopes and plans to local patients and attending Dr Mitchell's clinics to facilitate what we hoped could be a smooth takeover when the latter retired. We also had the very active support of Professor Malcolm Hooper, who even came all the way down from the North of England to lobby the local NHS for us and make a presentation to a primary care trust meeting. Several local MPs were involved in supporting us, including Norman Lamb and Dr Ian Gibson[3]. Added to this we had the support of Greg Crowhurst and the national 25% ME Support Group for the Severely Affected who ran a local patient survey that clearly demonstrated both the need and patient desire for proper biomedical hospital services for ME patients. The envisaged possibilities for such a clinic were very exciting, not least because the two clinicians proposed as joint lead were active cutting-edge biomedical ME researchers who hoped to involve the clinic in building a regional centre of research excellence - that would contribute to discovering both causes of and cures for Myalgic Encephalomyelitis. We all knew we had an extremely difficult uphill struggle on our hands but, given that we were all either ill, carers, or both, I think that attempting such a difficult task was commendable. 4. Some time after becoming involved with the legal team attempting to have NICE CG53 quashed in the High Court (Fraser & Short v The National Institute for Health & Clinical Excellence - CO/10408/2007) I decided to end my involvement with the ongoing attempt by local patients to argue for a regional NHS biomedical ME service. I am very ill and what I can do is extremely limited. I am not therefore up to speed on what other local ME activists have been doing to argue for local biomedical ME services since, either through the Service Project Design Group (SPDG) or other channels. What I am completely sure of however, is that the local activists I cooperated with in the past would absolutely NOT have agreed to a local NHS 'CFS/ME' clinic that implemented NICE CG53. Far from it, they would have continued to vigorously argue against it. I can only conclude therefore that, in the light of recent announcements, local NHS officials have only been going through the motions of listening to patients whilst actively working to construct the kind of service that patients do not want. Moreover, they now appear to be grossly misrepresenting the true nature of the situation if they are claiming that they have constructed a psycho-social service in cooperation with local patients. As said, I am still trying to recover my health from being involved with major High Court litigation for over a year. I am not therefore in a position to properly engage with medical politics or debate matters further, either presently or in the foreseeable future. I shall close therefore by stating the following: (i). In spite of considerable establishment efforts to channel all official funding of 'CFS/ME research' into the psychiatric lobby, who use highly questionable patient selection criteria[4], there is still a slow but relentless growth in international peer-reviewed scientific literature supporting the World Health Organisation's recognition of the biomedical nature of the disease (WHO - ICD-10-G93.3). To quote Professor Anthony Komaroff from Harvard University's medical school: "…the good news is that there are now over 4,000 published studies that show underlying biomedical abnormalities in patients with this illness [ME/CFS]. It's not an illness that people can simply imagine that they have and it's not a psychological illness. In my view, that debate, which has waged for 20 years, should now be over..."[5] (ii). The NICE CG53 'CFS/ME' Guideline and the Guideline Development Group (GDG) that developed it have been widely condemned as unscientific incompetent and unrepresentative by professionals, politicians and charities as well as patients (see for example the text of the witness statements by Dr Bruce Carruthers and Dr Ian Gibson that are appended/linked below). Given that there is now so much evidence for organic physical pathology in genuine ME patients (WHO - ICD-10-G93.3) as opposed to psychiatric fatigue patients (WHO - ICD-10-F.48), and that graded exercise (GET) can be severely harmful for the former, it is professionally and scientifically negligent to fail to properly examine and separate such patients as, alas, NICE effectively recommends. Ditto to subject those who are physically ill to inappropriate cognitive psychotherapy (CBT) in an attempt to mislead patients into thinking they are not physically ill and able to undertake potentially fatal GET. Even NICE's own professional evidence reviewers at York University warned that there was insufficient evidence to recommend CBT/GET to patients - as so expertly pointed out by ME Research UK's High Court witness statement appended/link below. (iii). What is apparently now going to be foisted upon ME patients in my region as a substitute for proper science-based care, under a misleading smokescreen of alleged patient 'consultation' that adds insult to injury, is a very grave matter for local patients indeed. Sadly, we are not alone in our plight; ME patients the world over are suffering similar neglect and abuse. Now, more than ever therefore, ME activists need to focus and direct their fire at those denying us genuine science-based health care, denying us proper disability support facilities, denying us research for a cure, denying us what we have paid for with our taxes and insurance contributions and, above all, denying our right to dignified treatment as human beings. I am utterly ashamed of what my Governement and its increasingly soviet-style state-directed pseudo-healthcare system is doing to physically ill people. God help us. Kevin Short 7 August 2009 contact@angliameaction.org.uk PS: For further introductory and background information on ME issues see the documentation at the following web addresses: http://angliameaction.org.uk/docs/ME-basic-information.pdf http://angliameaction.org.uk/docs/ME-basic-information(with-scans).pdf http://www.meactionuk.org.uk/ http://www.investinme.org/index.htm http://www.meresearch.org.uk/ http://www.25megroup.org/ http://www.nightingale.ca/ http://www.sophiaandme.org.uk/ ENDNOTES: [1] See: http://angliameaction.org.uk/docs/CanadianOverviewUK.pdf [2] "…the good news is that there are now over 4,000 published studies that show underlying biomedical abnormalities in patients with this illness [ME/CFS]. It's not an illness that people can simply imagine that they have and it's not a psychological illness. In my view, that debate, which has waged for 20 years, should now be over..." Professor Anthony Komaroff, Harvard Medical School: Speaking at the USA Government CDC (Centers for Disease Control and Prevention) press conference on 3 November 2006. www.cdc.gov/od/oc/media/transcripts/t061103.htm [3] Also see APPENDIX 3 below. [4] To quote Dr Bruce Carruthers, Fellow of the Canadian Royal College and principle lead of the international expert team that produced the highly respected ME/CFS Clinical Case Definition: "A hypothesis underlying the use of Cognitive Behavior Therapy (CBT) for ME/CFS is based on the premise that the patient's impairments are learned due to wrong thinking and `considers the pathophysiology of CFS to be entirely reversible and perpetuated only by the interaction of cognition, behaviour, and emotional processes. The patient merely has to change their thinking and their symptoms will be gone. According to this model, CBT should not only improve the quality of the patient's life, but could be potentially curative'. Supporters suggest that `ideally general practitioners should diagnose CFS and refer patients to psychotherapists for CBT without detours to medical specialists as in other functional somatic syndromes'. Proponents ignore the documented pathophysiology of ME/CFS, disregard the reality of patient's symptoms, blame them for their illness and withhold medical treatment. Their studies have often included patients who have chronic fatigue but excluded more severe cases as well as those who have other symptoms that are part of the clinical criteria of ME/CFS. Further, their studies fail to cure or improve physiological impairments…" Also, for the best and indispensable detailed overview of matters see: CORPORATE COLLUSION. Professor Malcolm Hooper, Eileen Marshall & Margaret Williams. A MUST READ document. www.meactionuk.org.uk/Corporate_Collusion_2.htm [5] Professor Anthony Komaroff, Harvard Medical School: Speaking at the USA Government CDC (Centers for Disease Control and Prevention) press conference on 3 November 2006. www.cdc.gov/od/oc/media/transcripts/t061103.htm APPENDIX 1: WITNESS STATEMENT OF DR NEIL ABBOT IN SUPPORT OF FRASER & SHORT v NICE: Download at: http://www.angliameaction.org.uk/NICEJRdocs/Neil_Abbot_MERUK_WS.pdf APPENDIX 2: WITNESS STATEMENT OF DR NEIL ABBOT IN SUPPORT OF FRASER & SHORT v NICE: Download at: http://www.angliameaction.org.uk/NICEJRdocs/Bruce_Carruthers_WS.pdf APPENDIX 3: WITNESS STATEMENT OF DR IAN GIBSON IN SUPPORT OF FRASER & SHORT v NICE: http://www.angliameaction.org.uk/NICEJRdocs/Ian_Gibson_WS.pdf Mr Jamie Beagent Leigh Day & Co Solicitors Priory House 25 St John's Lane London EC1M 4LB Our Ref: SHOR01001/01081040/jb 21 July 2008 Dear Mr Beagent Re: Douglas Fraser & Kevin Short v NICE – Case Number: CO/10408/2007 I have been Member of Parliament for Norwich North since 1997 and have a background and interest in science and health issues: I taught in the School of Biology at the University of East Anglia from 1965, was Dean from 1991 to 1997 and was made Honorary Professor in 2003; I served on the House of Commons Science & Technology Select Committee and was its chairman from 2001 to 2005; In 2005 I established and chaired a cross-party ME/CFS science inquiry with members from both Houses of Parliament, The Group on the Scientific Research into ME (GSRME), that reported in November 2006; The GSRME was a NICE Stakeholder; I am currently Secretary to the All Party Parliamentary Group on ME. I am writing to support Kevin Short and Douglas Fraser in the Judicial Review of the National Institute for Health and Clinical Excellence (NICE) Guidelines for ME/CFS. I am unhappy with the current NICE Guidelines on ME/CFS. I am also concerned that the composition of the Guideline Development Group (GDG) was unbalanced and unrepresentative and consequently excluded biomedical expertise. The current guidelines recommend cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as the `clinically excellent' first choice treatment for most patients; however the guidelines understate the potential harm with graded exercise. The study by A Peckerman, J Lamanca et al, for example, found that in severe cases ME/CFS patients may also develop reduced circulation which may lead to heart conditions: so graded exercise may be potentially fatal for them. There is a considerable body of international peer-reviewed evidence and expert opinion giving some indication that graded exercise therapies may also cause harm to patients other than just the most severely affected. This suggests further biomedical research on such matters is urgently required. That the GDG did not adequately consider the large body of existing international evidence means they were in no position to make the recommendations they did on the use, efficacy and safety of such therapies. NICE claims that both CBT and graded exercise therapy are supported by an adequate evidence base, however, the GDG relied on a very small number of controversial randomised control trials (RCTs). The patient selection criteria for participating in the trials were too wide and therefore allowed non-ME/CFS suffers to participate. It is also misleading to refer to CBT & GET as `treatments' of `choice'. They cannot properly be described as treatments, since, as NICE admits, they do not address the core pathology of ME. Neither is there effective choice given that many patients will be denied much of the knowledge they need to make informed decisions and there is little alternative to CBT GET on offer in the NHS. CBT/GET have also been rejected by ME patient charities in the UK. The NICE Guidelines give the false impression, to doctors, politicians, and the MRC, that effective treatments are available for ME patients. NICE would do better to honestly admit that their core therapy recommendations are not properly evidence-based, and to use this admission as the starting point for an adequately-funded search for a cure. We should not forget that ME patients have a legitimate right to aspire to a cure. Far too many doctors appear to have lost sight of that objective. That NICE did not adequately take into account the general international biomedical evidence base was highlighted by the GSRME committee of senior parliamentarians I chaired in 2005-6 who were concerned with both the psychiatric dominance in the current UK ME research programmes and patient selection criteria they use. I am therefore disappointed that the NICE GDG did not adopt or endorse high quality internationally recognised patient selection and diagnostic criteria such as the Canadian Criteria even though the latter were mentioned in the Guideline. I am also concerned that the NICE GDG did not properly fulfil its remit and did not properly adhere to the internationally accepted high standards of guideline development such as the European Union AGREE instrument of which NICE is a signatory. The NICE GDG also failed to endorse the World Health Organisation definition of ME/CFS as a neurological disorder despite the fact the Department of Health and Government Ministers have repeatedly confirmed that they do agree with this classification. I do not believe that the NICE CFS/ME Guidelines are fit for purpose. Yours sincerely Dr Ian Gibson MP for Norwich North Secretary to the All Party Parliamentary Group on ME [PERMISSION TO REPOST].