Sunday, 22 May 2016

Statement by Angela Kennedy and Stevie Kennedy from August 2009 regarding Judicial Review of NICE guidelines on 'CFS/ME'

**This statement was distributed by me and my daughter Stevie on 1 August 2009 in response to certain comments being made about the Judicial Review of the NICE Guidelines for 'CFS/ME'. The statement has been altered only slightly to take account of my daughter's correct name, at her request. Otherwise it is the exact same statement made in 2009.**


In light of recent events and suggestions made elsewhere about both of us, we would like to clarify, collectively, the following:

In 2005, Stevie, after receiving a ‘CFS/ME’ diagnosis in 2001/2002, was subsequently given a ‘borreliosis’ diagnosis, following test results. As anyone with any knowledge of the problems facing people diagnosed with ‘CFS/ME’, or ‘Lyme’, or ‘borreliosis’ will understand, the political situation is not as simple as being diagnosed with one or another. A useful account, for the layperson, of the rank confusion and contestation surrounding ‘Lyme’, ‘borreliosis’ and ‘CFS’ diagnoses is given in Pamela Weintraub’s book “Cure Unknown: Inside the Lyme Epidemic”, with a foreword by Hilary Johnson, author of “Osler`s Web”. It should be noted that many people, initially diagnosed with ‘CFS/ME’, have subsequently received a diagnosis of ‘borreliosis’ or ‘Lyme’, or other condition or disease.

Stevie remains severely physiologically impaired by her condition, though there have been small improvements due to certain treatments and a proper diagnosis of a cardiac/neurological condition. We would both like to go on record and say, specifically, that none of this improvement has been as a result of NHS policy or ‘care’. Our collective position remains that the NICE guidelines are inappropriate and dangerous.

In 2007, Stevie attempted to bring, independently from any other party, a Judicial Review against NICE in respect of their Guidelines for ‘CFS/ME’. Because of the other, apparently partially funded, cases being brought at the same time, Stevie could not secure Legal Aid and therefore unfortunately could not proceed. Situations such as these are apparently quite common and neither of us hold anyone ‘responsible’ for Stevie’s failure to secure Legal Aid.

Another clarification we need to make is that we had no knowledge of the Short/Fraser case until it was first announced publicly, although it is clear they had knowledge of Stevie’s case as her solicitors were mentioned by Professor Malcolm Hooper in his statement. Although we kept the One Click group informed of Stevie’s intention to bring a JR action, we were not given any information by them, and therefore had no knowledge of the One Click JR case apart from that made public by them.

We are both keen to see accuracy prevail, because we believe there are important advocacy lessons that might be learned from a careful analysis of what has happened. For this reason we may have cause to clarify any further issues raise by public comments made by supporters of the Short/Fraser or the One Click JR action.

Due to family problems at the time, Angela was unable to continue campaigning with the One Click Group. Since April 2006, the trajectory of campaigning that One Click has subsequently taken is therefore not that of Angela’s own, although Angela is aware that some of her work was used by One Click in the response to the NICE guidelines (for example, her “Summary of the Psychiatric Paradigm of ME/CFS” document), subsequent to her having discontinued her association with them. Angela has no problem with her previous work on either NICE or the psychiatric paradigm being used by other advocates, and is happy that this work has been of use to people.

Since leaving One Click in 2006, Angela continues to work in advocacy for people suffering because of ‘psychogenic’ explanations for their illness. For example, she co-initiated a campaign to ensure the APPG on ME were made fully aware of the objections many in the ME/CFS community have to the ‘psycho-social’ approach adopted by most of the ‘CFS/ME’ clinics. This was done in support of other advocates who had been highlighting this problem. In 2008 she, with another advocate, tackled the ongoing misrepresentation of the ME/CFS community that was taking place on Wikipedia, an unfortunate result of unsubstantiated allegations, made in the Gibson Report, about members of the ‘CFS/ME’ community ‘harassing’ a Professor. As a result of their attempts to protect the ME/CFS community from such unsubstantiated allegations being incorporated into the Wikipedia article on Simon Wessely, Angela was herself defamed on Wikipedia, and, falsely implicated as being involved in “personally harassing” Professor Wessely. More information on this subject can be found here in the public-archived dedicated Yahoo Group APK-Papers.

Angela continues to advocate for people adversely affected by the scientific and logical flaws in ‘psychogenic’ explanations for illness. She is currently working on an academic project which she hopes will benefit the ME/CFS, Lyme and other patient communities, a project supported by Stevie. Both continue to support the work of other patient advocates whenever possible.

We both hope that the above clarifies our respective positions.


1 August 2009

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