We have said we disagree with that. The reality is that the services offered currently are sparse at best and detrimental to patients’ health at worst and rarely meet the needs of patients. It now must surely be recognised that, in fact, there is a distinct lack of services for ME patients, then we do really think it again illogical to worry about services disappearing. To what majority view is Professor Baker referring? Is the majority view that of doctors? We doubt it! Is the “majority view” that of the lobby of psychiatrists who have so dominated the debate regarding what guidelines are imposed on people with ME, and what research is to be funded? This seems a very odd conclusion in the circumstances. As all doctors will be told that a new set of guidelines will appear then new services will result from that. CCGs still have a responsibility to patients. In addition, we have suggested that NICE has a choice of action – if NICE does not wish to remove the existing guidelines then just adding the addendum that CBT and GET are no longer valid recommendations would be appropriate. The extremely poor or inappropriate services currently offered should not be a reason to retain flawed guidelines that harm patients. Professor Baker stated that “the actions of some service agencies (health care commissioners, children’s services, schools and benefits agency amongst others) ”....is not something which NICE has direct influence over”. Professor Baker claims that NICE guidelines are responsible for services being provided because they will disappear without them – whilst at the same time claiming that NICE has no direct influence over those services using them. It is hard to follow this reasoning. The actions of some service agencies (health care commissioners, children’s services, schools and benefits agency amongst others) are the direct result of the NICE guidelines and the recommendations therein and NICE must be held accountable and take responsibility. Despite admitting the unpopularity of the guidelines with patients, which Professor Baker and NICE state they "clearly now empathise with", Professor Baker states that the majority view has been that they have done some good. The guidelines must surely be created to benefit patients. Professor Baker admits that they are unpopular with patients. Yet patients are only offered empathy - not action. Mere words being thrown around without any substantiation or detail is not just careless - in this situation it is disingenuous and maybe even dishonest. If Professor Baker and NICE state that a majority view supports the retention of the existing guidelines then they must provide details of whom that majority consists of. For it is not amongst patients. Professor Baker believes that the guidelines legitimise the diagnosis. Yet how could that be when few services have been offered, when the services that are offered are inappropriate and when Professor Baker acknowledges the horror stories confronting him where patients are not treated seriously? How can it be when the diagnosis of ME is so unreliable and unclear? In short, we contend that the NICE guidelines have done nothing to legitimise the disease. In fact, they have maintained an ignorance of the disease and allowed patients to be harmed - and continue to allow patients to be harmed. Legitimation is not what patients feel. We also contend that doctors have been ill served by these existing guidelines and cannot help their patients. After two or three decades of seeing this disease mishandled and starved of funding for proper research then we can attest to the fact that it has been anything but legitimised. Even the main protagonists of the BPS ideology, an ideology that has so completely raped this illness with its misinformation and vested interests, have stated that they do not see ME as being a disease – but instead a behavioural illness that can be cured by quack treatments. Invest in ME research (Charity Nr. 1153730) www.investinme.org Page 13 of 56
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