From Dr. Charles Shepherd MAY BE REPOSTED The ME Association is making public this continuing exchange of correspondence with NICE. The exchange relates to our objection to the content of the official notes regarding the ME/CFS guideline implementation meeting held on October 5. NICE is maintaining that the content of the guideline is completely separate to issues relating to guideline implementation. Consequently, criticisms of the content that were made at this meeting are not being included in the official notes. We do not believe that this explanation makes sense. _____________________________________________________________________ Sent: Wednesday, November 22, 2006 8:33 AM Dear Dr Leng You will not be surprised to learn that the ME Association is very disappointed by this response. The ME/CFS planning meeting was an important event at which a number of very critical and constructive comments were raised about the content of the current draft. We do not see how NICE can regard content and implementation as separate issues when they are so inextricably linked - especially in the area of cost-benefit analysis in regard to the very controversial key recommendation to make a course of CBT and/or GET available to the vast number of people who will fit into the proposed new diagnostic criteria for having mild or moderate ME/CFS. An official note of the meeting should, therefore, contain a full record of what was actually discussed. The issue of the NICE guideline, including the content of the notes of the implementation meeting, was raised at a meeting of the All Party Parliamentary Group on ME/CFS at the House of Commons last Thursday. As there was an observer from NICE present at this meeting, further criticisms of the guideline given by the politicians present, along the request for Professor Sir Michael Rawlins to attend the next APPG meeting, will no doubt be passed on in due course. The MEA has now submitted a comprehensive response to the guideline. However, I feel we should once again make it clear that we would not want to have anything to do with the implementation of this seriously flawed document in its current form. Regards Charles Shepherd Honorary Medical Adviser, ME Association ___________________________________________________________________ To: charlesbshepherd@lineone.net Sent: Friday, November 17, 2006 3:26 PM Subject: CFS / ME planning meeting Dear Dr Charles Shepherd Thank you for writing to us. We are concerned to hear that our process has inadvertently raised your expectations and led to your disappointment. We are committed to continuous improvement in our work and will be reviewing the implications of your response for our future process to develop implementation support. We were glad that you were able to attend the planning meeting and are keen to secure your support for the implementation of the final version of the guideline. The NICE implementation team host the planning meeting to emphasise its focus on identifying and discussing potential implementation issues arising from the draft recommendations. Guideline developers are invited to the meeting to describe the key recommendations and how they relate to implementation but for purposes of openness and transparency, we make it clear at the meeting that comments on the guideline itself can be considered only when raised officially through the formal consultation process as this means all stakeholders have an equal opportunity to comment. We therefore do not use the implementation meeting to record or pass on your comments on the draft recommendations to the guideline development group. There is still time to make your views known by sending these to NICE using the stakeholder comments form to cfs@nice.org.uk or on a disk to Bijal Chandarana Guidelines Coordinator National Institute for Health and Clinical Excellence MidCity Place 71 High Holborn London WC1V 6NA The status of the draft guideline is that it is a public document available for consultation until 24th November, but the recommendations are draft and subject to change until the final guideline is published (currently scheduled for April 2007). As you copied your email into all planning meeting participants, we will be sending a copy of our response to them for information. Any further comments should be made through the NICE stakeholder consultation process as described above. We look forward to working with you to support the implementation of the final guideline. Yours sincerely Dr Gillian Leng Implementation Systems Director National Institute for Health and Clinical Excellence MidCity Place 71 High Holborn London WC1V 6NA From: Dr Charles Shepherd [mailto:charlesbshepherd@lineone.net] Sent: 10 November 2006 08:41 Subject: Re: CFS / ME planning meeting notes Dear Ms Polson Thank you for sending a copy of these planning meeting notes for comment. Unfortunately, they do not contain any of the very strong and detailed objections that were raised at this meeting by both the charity representatives and by Professor Leslie Findley (who was representing the Royal College of Physicians). For example, there is no reference to the crucial questions raised by the MEA regarding the quite enormous potential cost to the NHS of implementing these proposals. Where is the money going to come from to pay for treating upwards of 180,000 people who have mild to moderate ME/CFS - as well as many more people with chronic unexplained fatigue who will come under the proposed new diagnostic criteria - with a course of CBT and/or GET? Using a rough estimate of £1000 per course, the total cost comes to at least £180 million. And where are all these properly trained therapists going to come from? Surely the cost to the NHS of these recommendations is also an implementation issue? Neither is there any mention of the deep concerns that were expressed about the way in which the Guideline Development Group had produced a new clinical definition of ME/CFS that now includes almost anyone with chronic unexplained fatigue plus one other symptom. Again, this is an issue that is relevant to implementation. If issues relating to recommendations contained in the guideline were discussed in some detail at the meeting, then they should form part of the official notes. Otherwise, people who were not able to attend will not have an accurate overall account of what actually happened on 5 October. People with ME/CFS are becoming increasingly disillusioned with what is happening at NICE in regard to this guideline and do not believe that their views are being listened to. I am also coming to the conclusion that the patient consultation process is turning into far more of a PR exercise than a genuine attempt to produce a balanced guideline that is acceptable to both doctors and patients. Surely NICE has a responsibility to produce an accurate and complete account of the highly critical points that were raised at this meeting, rather than one that simply omits the difficult areas of discussion covering the actual recommendations. The ME Association has been conducting and co-ordinating a very extensive feedback initiative involving both members and non members over the past few weeks. To date we have not yet received one single item of feedback that supports the current draft. The latest draft (number 4) of our proposed response can be found on the MEA website news blog at: http://meassocnews.blogspot.com. The October news blog archive contains our summary of the implementation meeting. We intend to raise our very deep concerns about this guideline at a meeting of the All Party Parliamentary Group on ME/CFS that takes place at Westminster next week. Regards Dr Charles Shepherd Honorary Medical Adviser, ME Association