Tuesday, 17 December 2013

*** UPDATE 12th March 2014: I've re-written this post, to make it more coherent. This only means I've added a couple of sentences and changed the order of the bullet points, for ease of reference***

10 reasons why disabled people (and their supporters) are against
'euthanasia, 'assisted suicide' and 'assisted dying': a short summary

Objections to euthanasia, assisted suicide or assisted dying are most frequently portrayed in the media as being motivated by religiosity, and/or a right-wing, 'anti-choice' rhetoric. This often functions as a 'straw man', and ignores the reasons most often given by disabled people and their supporters for why these practices are dangerous to disabled people. Below is a short summary of the reasons why disabled people (and their supporters) in the UK, who may not be (indeed are often not) religious, 'right-wing' or 'anti-choice' in most areas of life at all, are objecting to legalisation of euthanasia, assisted suicide and assisted dying. This does not necessarily constitute an exhaustive list of the grave concerns people are giving as reasons for their objections. Nevertheless I have tried to make this list as comprehensive, but also as concise, as possible. The ten main reasons people object to euthanasia, assisted suicide and assisted dying are:

1. The 'Right to die' is always in danger of becoming 'duty to die', in neoliberal ideology in particular, for people with physical impairment who need help in activities of living (people who cannot commit suicide by themselves) and are treated, and encouraged to see themselves, as 'burdens'. This ideology reaches doctors, families and social services.

2. Related to this, current mistreatment of disabled people by the UK government has been leading to more suicides anyway . Treatment of disabled people as 'burdens on the state' is in place already as state policy. Suicide rate because of denial of welfare would be likely to accelerate even more with legalisation of 'right to die' for disabled people. Health care economic concerns, where the public has been exhorted to 'tread lightly on the state' (Emke, 2002), have also been promoted for many years. There is a real risk of exhortation of people with medical impairments to present themselves for killing should it be legalised.

3. It is always very hard to ascertain whether someone is choosing suicide rationally or because of (a) being under duress (b) depressed (due to medical impairment, lack of adequate treatment such as pain relief, or life circumstances), both of which could lead to irrational decisions to commit suicide, which may change once the duress, bad situations or even ill health causing a specific bout of depression is eliminated. But these are unlikely to be presented as solutions to the person at risk of suicide due to disability or ill health.

4. It is clear that the 'right to die' is only desired for disabled and ill. If it were different, physically fit people would be allowed to procure lethal drugs, so that they did not have to die by hanging, jumping off buildings or jumping in front of trains (for example), but instead die in a manner of their choosing (comfortably in their beds, for example). The suicide of a fit person is invariably seen as a tragedy, something to be prevented. This demonstrates that disabled and ill people are being specifically deemed as having lives not worth living. There is special pleading for their 'right to die'. If it is believed they have lives not worth living, then the 'logical' conclusion from that is that they are better off dead (whatever the disabled or ill person believes).

5. However discomfiting to acknowledge, the above all have precedents in the state policies of Nazi Germany, where disabled people were the first to be systematically killed. Even the notion of choice (or 'right') to die was initially used in Nazi propaganda and quickly turned to 'duty' (though in some aspects ran concurrently - indicating supporting 'duty to die' was the hidden desire). Michael Burleigh's research, delineated in his book Death and Deliverance, demonstrates that this happened, and the ideology behind it is demonstrated in Hitler's Mein Kampfe and elsewhere.

6. With people who have any difficulty communicating - others may make the wrong decision for them to die, whether deliberately, or by mistake. Thus involuntary euthanasia is always a material risk.

7. Changes of laws always engender the capacity to set a precedent for further changes to the law. While the issue of abortion is separate to that of euthanasia, assisted suicide or assisted dying, the UK law on abortion is an example of precedent. Now UK law allows abortion effectively up to birth for disabled foetuses. The legalising of abortion in the first place, in 1967, is what allowed new law to be made, legalising a differential treatment of those with disability. Canine breed specific legislation (BSL) is another example. There was no BSL in the UK before 1991. Then legislation banned certain dog breeds, but also, in the case of the 'pit bull' (genetically no such breed) any dog that is deemed, by very subjective measures, of 'pit bull type' is covered. This means even pedigree dogs can be deemed of type and therefore 'illegal' (including pedigree Staffordshire bull terriers). The law is highly unpopular, condemned by many experts and dog welfare organisations, and can be shown to be irrational. But not only do successive governments maintain it and refuse to repeal: a select committee on Dog Control and Welfare, despite being made aware of the myriad objections to and problems with BSL, have actually recommended that other breeds be added to the legislation as they see fit. The 1991 legislation set a precedent. These are just two examples of laws that engendered precedents allowing further changes to laws. The possibility of voluntary euthanasia/assisted suicide/dying leading to involuntary euthanasia is a reasonable concern, when historical precedents, and current state treatment of disabled and ill people, indicate lack of respect for their autonomy in living, as is the case now in the UK. For example, Belgian government members have recently voted to allow euthanasia for children “if the parents consent”, and there is evidence that people are killed under the Belgian state policy even when they do not ask to be so (Chambaere et al, 2010).

8. Often those advocating the 'right to die' invoke notions of 'choice', but are usually looking to give doctors power over life and death decisions, not individual members of the public the 'right' to die as they wish. This is a highly problematic intention. Doctors have no special knowledge of ethical problems, and have conflicts of interest, particularly as agents of the state presiding over health care economic decisions. Despite the cultural romanticizing of doctors' (and nurses') roles, they have no automatic special wisdom in understanding this issue and the ethical problems it generates. Despite the fervent support for the Liverpool Pathway by some, Rabbi Neuberger's report showed how easily health professionals failed patients in 'end of life' situations under it. Nor are state officials in any guaranteed privileged position to 'choose wisely' on this matter, governed, as they are, by neoliberal ideology informing health care economics and welfare provision.

Although I have specific criticisms of it, one of the most useful books I have read on this subject is Fabian Tassano's The Power of Life or Death: Medical Coercion and the Euthanasia Debate:

"In spite of much recent talk about autonomy and patient rights, there is mounting evidence that patients' views come a poor third in the determination of treatment after cost considerations and 'expert' opinion. This is particularly true for the elderly, the disabled and the handicapped. Yet medical practitioners are perceived as benevolent authority figures who always act in their patients' best interests. As a result, they have been given increasing discretion in deciding who is to live and who is to die. This book argues that patients need to recognise that medicine is not necessarily on their side. It is written for the general reader who is concerned with the question of involuntary treatment and non-treatment."

My main problem with Tassano's argument is that it neglects to address how such problems occur in private health care systems, focusing on 'socialised' systems instead. But the problems he outlines above are major concerns to be addressed publicly, though they have not been in this debate (at least publicly) very much at all.

9. That these problems are rarely, if ever, discussed in the public discourse on euthanasia/assisted suicide/dying (including where they have been subject to legalisation), and opponents of legalisation are subjected to ad hominem misrepresentation, usually centring on alleged 'religious beliefs' is odd. The lack of open discussion being afforded to all 'stakeholder' groups is itself suspect, indicating that 'full and frank discussions' are being censored, and that some people may have interests in doing this: therefore a more cautious appraisal of moves to legalise death-making decisions is indicated. Related to this is that research claiming positive results and lack of problems (such as involuntary euthanasia) in the academic literature is generally not critically appraised, but taken at face value. The critically analytical person should find this suspect. More analytical appraisal of those systems already in place are needed, and which need to be publicised, from an ethical, sociological and scientific perspective, before an open and accurate appraisal can be made of how these systems are proceeding, and their effects.

10. The problems outlined above all have the capacity to intersect with and compound each other, causing increased, multiple jeopardies, that is, discrimination and prejudice based on various forms of social stratification such as race, gender, class, sexuality, age and, in this case, for disabled and ill people, to the point of wrongful killing of them. For at least all of these reasons - it is clear that the UK are not in a position to be able to 'make safeguards' against the above abuses of any legalisation of euthanasia, assisted suicide, or 'assisted dying' as yet - and may never be. Therefore legalisation of any of these at this point in time would present fundamental dangers to the rights, and lives, of disabled and ill people in the UK.


Burleigh, M. Death and Deliverance (2002) London, Pan.

Chambaere, K. et al 'Physician-assisted deaths under the euthanasia law in Belgium: a population-based survey' CMAJ May 17, 2010.

Emke, I. (2002) ‘Patients in the New Economy: the "sick role" in a time of economic discipline’ Animus 7: 81-93.

Erstelt, S. 'Belgium: Senate Approves Measure Allowing Doctors to Euthanize Children' Life News 12 December 2013:

Neuberger, J. et al Independent Report: Review of Liverpool Care Pathway for dying patients (2013)

Hitler, A. Mein Kampf (2007) Jaico Press.

Tassano, F The Power of Life or Death: Medical Coercion and the Euthanasia Debate (1999) Oxford, Oxford Forum.

Sunday, 3 November 2013

Originally written 6th February 2013.

This statement is also available on pdf here:


My email correspondence with Journalist Michael Hanlon regarding a
proposed Sunday Times article


Angela Kennedy
6th February 2013

I have today seen comments made by Charles Shepherd on the ME Association Facebook wall, regarding an article being written by a journalist from the Sunday Times:

“Had a fairly long and amicable chat this evening with the journalist who is writing the feature on ME/CFS for the Sunday Times. From what we covered this evening in my hotel I don't think this item is going to be looking at anything new in relation to both politics and research.... So it looks as though this article is going to cover the debate re nomenclature and sub-grouping (ME vs CFS), XMRV saga, PACE trial (including 'recovery' paper and House of Lords debate), CBT and GET - what do they involve? why are they so controversial? and all the usual stuff about hate mail: Who does it? (a minute minority - some of whom probably have a personality disorder rather than ME) And why to they do it? (because they are angry at the lack of biomedical research and clinical trials aimed at people who do not fit into the psychosocial model of causation >> an illness perpetuated by abnormal illness beliefs and behaviours + the resulting deconditioning and inactivity). Not that this justifies this type of activity.”

In light of Dr Shepherd's extremely worrying revelations here, and recent misrepresentations of patient concerns in an academic journal, I believe that I should now reveal that I was approached by a journalist, Michael Hanlon in regard to this proposed article in December 2012. Below is all the email correspondence I had with Mr Hanlon (my only form of interaction with him). I should also explain that I have heard nothing further from Mr Hanlon after I declined the lunch invitation on 7 December 2013.

I had intended to wait until after the article was published before publicising my full correspondence with Mr Hanlon. However, because I am concerned at the content of Dr Shepherd's post above and its implications for how this article will be written, I believe it is important for readers to understand the exact context in which information was given to Mr Hanlon, before the article is published. I believe that journalists have a duty to make fair and accurate representation of the issues they cover and the people they interview, and at this time I am hoping the transparency and accuracy of my own actions here will be mirrored in the Sunday Times article when it is published.

The email correspondence below is in chronological order.


----- Original Message -----
From: Hanlon, Michael
To: angelakennedy372@btinternet.com
Sent: Monday, December 03, 2012 11:10 AM
Subject: ME, XMRV, the PACE trials and Simon Wessely

Dear Angela

I am a science journalist and I have been commissioned to write a piece for the Sunday Times magazine about ME patient-support groups.

This is in the light of recent findings regarding XMRV, the continuing controversies regarding the PACE trials and the recent prize awarded to Simon Wessely.

Would you be prepared to chat with me, either on- or off-the-record?

Best regards
Michael Hanlon

----- Original Message -----
To: Hanlon, Michael
Sent: Monday, December 03, 2012 1:49 PM
Subject: Re: ME, XMRV, the PACE trials and Simon Wessely

Dear Michael,
Thank you very much for your email. I will be very happy to chat with you via email in the first instance, if that is ok. This is because talking by phone is difficult for me because of my daughter's care needs.

I can also send you relevant sources that explain my position in this situation, and if you would like a complimentary copy of my book (of which I presume you are aware) - let me know the address and I will send.

Best wishes
Angela Kennedy

----- Original Message -----
From: Hanlon, Michael
Sent: Tuesday, December 04, 2012 10:30 AM
Subject: Re: ME, XMRV, the PACE trials and Simon Wessely

Dear Angela

Thank you for taking time to reply.

I have to say at the outset where I am, what (if any) agenda I have and what I hope to write about. Never believe a journalist who says they don't have an agenda - we all do. But at least I will try to lay my cards on the table.

I have been a science journalist for 20 years and, as such, I count myself as broadly 'pro-science'. I tend to side with sceptics and rationalists, materialists and those who obsess about evidence-based medicine. I distrust homeopathy, people who worry about electrosmog and people who claim to have seen UFOs.

But M.E.? I admit I am baffled. When I first picked up on the whole debate, if that is not too polite a word, between the likes of Simon Wessely who believe that M.E is basically a psychogenic condition that can be treated by CBT and other techniques, and those who insist that M.E. is the result of an infection or immune system malfunction, I was mystified.

My initial reaction has been to side totally with the psychiatrists. I have seen some of the emails and so forth that have been sent, told about the FOI requests, reports to the GMC and so on and find it weird, at best, that this is happening.

But clearly people feel very strongly about this and I want to know why. Perhaps you can tell me?

I have written about many controversies - animal experimentation, global warming, MMR and so on but even a brief delve into the Internet shows me that there is a volcano of an issue here.

So, my first question. You are prominent among those who would like to see ME treated as a 'proper' illness (not psychogenic). What informs this view?

Do you condemn - unreservedly - those small number of people who appear to have issued threats, however vague, against people like Simon Wessely? You are quoted as saying that you believe these threats are a storm in a teacup, that Wessely et al are over-reacting. Is this the case?

I have spoken to Simon Wessely and he seems a decent, humane man. Do you accept that he is decent and humane, even if you disagree with his methods and point of view regarding this disease?

How did you react to the recent news that XMRV is probably not the causal agent of ME?

Did you previously believe it was? If not XMRV, then what do you believe causes ME?

Are you still in contact with Jane Bryant?

Have you ever met your opponents and debated with them? Do you believe it is possible to have a mature and reasoned debate over a matter of what amounts to a major scientific and medical disagreement?

I look forward to hearing from you, and your view on any of these issues.

Best regards

----- Original Message -----
To: Hanlon, Michael
Sent: Tuesday, December 04, 2012 2:03 PM
Subject: Re: ME, XMRV, the PACE trials and Simon Wessely

Dear Mike,
I will hopefully be able to answer your questions within the next few hours. In the meantime I enclose three links which you should look at to get a reasonably clear idea of where I am actually 'coming from':

1. The link to my book on Amazon gives the first few pages of the Introduction on its 'look inside' facility. The first three pages will I believe be most useful to you, though I would also recommend you read the back cover, which also gives my academic research interests as a social sciences lecturer and researcher.


2. A publicly available statement I have made about dematory claims made about me with regard to Professor Wessely.


3. My complaint to the Lancet about the PACE trial:
Best wishes

----- Original Message -----
To: Hanlon, Michael
Sent: Wednesday, December 05, 2012 1:28 PM
Subject: Re: ME, XMRV, the PACE trials and Simon Wessely

Dear Mike,
For ease of reference I have preceded your questions with a Q, and my answers with an A (should make things clearer hopefully!)

Firstly I should tell you that I too count myself as (colloquially) 'pro-science' (though with some caveats), with a rationalist, materialist concern that science and social science, proceeds with empirical adequacy, and rational, coherent argument within a critically analytical framework: and that all underlies my critiques of psychogenic explanations for physical illnesses like ME, particularly the analysis I undertake in my book.

I am concerned that you seem to believe FOI requests and reports to the GMC constitute harassment. These are publicly available legitimate courses of action, through official channels, for people who have concerns or complaints about certain situations. I'm confident you would not think anyone who has ever made a complaint to the GMC, written to an employer, or asked for information under FOI is guilty of harassment per se. Journalists use FOI requests, for example. These were mentioned three times on Panorama the other night; and have been used by BBC reporters since 2005:


There are specific, legitimate and rational reasons people are taking these - again, legitimate - courses of action. As you will have seen from the links I gave you, there are specific reasons I have had occasion to complain about the PACE trial, and write to an employer, neither of which can be remotely considered as 'harassment'. I would say, if I may advise you, that you should dig deeper on those reasons.

Q: So, my first question. You are prominent among those who would like to see ME treated as a 'proper' illness (not psychogenic). What informs this view?

A: Your above comment does not accurately reflect my position. This is why I would ask you to read the first three pages and back cover of my book via the Amazon link I gave you to get an idea of where I am coming from. There are a very important distinctions between your above assessment of my position and what my position actually is, not least being that I do not consider psychiatric illnesses as 'improper' or 'not real', which is what your description implies (whether or not you meant it like that). But to give a summary of where I am coming from: I am concerned about psychogenic misdiagnosis, which leads to psychogenic dismissal of serious physical illness, which leads to patients' lives, health and quality of life being endangered. Psychogenic misdiagnoses have led to tragic, premature deaths, and to prejudicial treatment by health, educational, social and benefits agencies, even communities and families.

It is also untrue that people objecting to psychogenic explanations for ME are doing so out of contempt for mental illness and its sufferers - though that is a myth that gets repeated over and over again.

One thing I think also needs to be remembered is that, no matter what I, or Professor Wessely, the ME community or other doctors think, the WHO classify ME as a neurological illness, and the British government abides by this classification.

1. Q: Do you condemn - unreservedly - those small number of people who appear to have issued threats, however vague, against people like Simon Wessely?

A: I must ask you quote this exactly: "As an academic myself I unreservedly condemn any actual harassment and abuse of researchers. However, raising reasonable objections to something through legitimate means (such as FOI requests or official complaints) is not harassment or abuse. There are specific reasons I have complained about the PACE trial, and written to an employer, neither of which can be remotely considered as 'harassment'."

The other issue you need to consider though - and this is vital - is that hate speech is being waged against a disabled patient group, especially though not exclusively with regard to the claims of 'harassment', that are specifically unsafe i.e. falsely accusing people - who are following legitimate procedures - of harassment, intimidation, and abuse, which is what is being done, when you look carefully at the various claims being made about the community.

ME sufferers are being characterised as 'extremists', 'fanatics', as well as 'malingerers' and 'hypochondriacs'. Their concerns are misrepresented as contempt for mental illness sufferers. They are mocked and told that they cannot be that ill in the first place if they have the energy to comment, an common insult. The historical insult 'Yuppie flu' is repeated as nauseum. Doctors have been involved in inciting this contempt for sufferers, and I discuss this phenomenon in my book.

2. Q: You are quoted as saying that you believe these threats are a storm in a teacup, that Wessely et al are over-reacting. Is this the case?

A: I would be grateful if you could give me the exact place such a 'quote' was made (and by whom), because I have never said this. This is not how I actually speak or write, and it is certainly NOT how I see the situation.

3. Q: I have spoken to Simon Wessely and he seems a decent, humane man. Do you accept that he is decent and humane, even if you disagree with his methods and point of view regarding this disease?

A: It is impossible for me to make an assessment of the character of someone whom I have never met. It's like asking me to say if Robert Pattinson is a 'decent, humane' man. In any case, as both a supporter of the ME community and, importantly, an academic myself, my concern is really not with anyone's 'character', but with highlighting specific problems with claims, and actions, within the fields of science and medicine that might be harming patients.

4. Q: How did you react to the recent news that XMRV is probably not the causal agent of ME? Did you previously believe it was? If not XMRV, then what do you believe causes ME?

A: The vast majority of patients and their supporters are not, and were never, pushing for a 'favorite pathogen'. From my experience, most of us were - still are - merely hoping for science to progress, correctly and ethically, in testing for a possible causative agent. There are, however, reasons to believe there were, and remain, problems with how 'the science' was conducted, following publication of the Lombardi paper.

5. Q: Have you ever met your opponents and debated with them? Do you believe it is possible to have a mature and reasoned debate over a matter of what amounts to a major scientific and medical disagreement?

A: I did try and explain concerns about the PACE trial to Peter White, one of its authors, in a public meeting actually about the trial, but sadly he was not interested in discussing them. It SHOULD be possible to have mature and reasonable debates over this matter, but that is impossible when one 'side', from a position of power (that is proponents of psychogenic explanations for ME), accuses other participants (like patients and their supporters) of harassment, intimidation, and abuse - just because they have raised legitimate objections or concerns through legitimate channels - and misrepresents those concerns, which is sadly what has been happening.

Best wishes

----- Original Message -----
From: Hanlon, Michael
Sent: Thursday, December 06, 2012 1:18 PM
Subject: Re: ME, XMRV, the PACE trials and Simon Wessely

Dear Angela

Thank you for taking the time to answer my questions.

Would you be prepared to meet with me sometime before Christmas? Happy to buy you lunch on the Sunday Times!

Best regards

----- Original Message -----
To: Hanlon, Michael
Sent: Friday, December 07, 2012 7:39 AM
Subject: Re: ME, XMRV, the PACE trials and Simon Wessely

Dear Mike,
Thank you, that's very kind of you :) Unfortunately I'm just not in a position to do that at the moment - certainly not before Christmas, and to be honest after Christmas feels unlikely, for a variety of reasons around caring for my daughter - and to be honest I've not been too well myself anyway (ongoing anaemia of unknown cause).

But anything else you need to ask me I am happy to answer by email.

There is one thing I forgot to mention in my previous email, regarding insults against ME patients that are repeated over and over again by journalists and academics (and Roger Highfield has just used this insult himself in a tweet!), and that is the irrelevant and laboured association, onto the obvious but entirely coincidental similarity, in the English language, between the acronym for Myalgic Encephalomyelitis, and the first person objective, in order to characterise ME patients’ characters in dysphoric terms. This manifests in phrases like "the Me Me Me lobby" (Highfield's tweet), or in Elaine Showalter's case, this comment in her book Hystories, that the acronym “reflects the patient’s self absorption” . This is being done without irony. It's become, I'd say, an institutionalised, highly prejudicial insult against a disabled group. I discuss the characterisation of ME sufferers (and those of other illnesses deemed psychogenic) in dysphoric terms in detail in my book.

Best wishes


Tuesday, 8 January 2013

Professor Susan Wendell comments on my book

I'm very honoured to have received the following comments from Professor Susan Wendell, author of the book 'The Rejected Body: Feminist Philosophical Reflections on Disability' about my book, comments she has given permission to make public:

"I am very, very impressed by the thoroughness of your research. Even though our lines of inquiry into both ME/CFIDS and psychosomatic diagnosis have been different, nearly every relevant study I had encountered in my own research is discussed by you, and then you cover far more. I am equally impressed by your careful reasoning in confronting the scientific inadequacies and logical absurdities of much psychosomatic theorizing.

Perhaps most important for readers who are at risk of receiving psychosomatic diagnoses (and, from my own research, I would say that includes virtually everyone who may become ill), you expose the consequences of psychosomatic diagnosis or speculation in medicine, clinical psychology, counselling, social work and everyday life. Your book is a gift to everyone who has endured these consequences - including shame, isolation, loss of income and social rejection. Thank you, thank you for all the painstaking work you have done in writing it."


Friday, 4 January 2013

My submission to the Select Committee on Dog Control and Welfare

My submission to the Commons Select Committee on Dog Control and Welfare has been accepted and published by them here:


first paragraph:

"My submission to this Committee is informed by my own position as a dog owner (of a small English Bull Terrier Cross rescue who is NOT ‘of type’), and as an academic social science lecturer and researcher, with a research interest in the social and material effects (on both people and dogs) of breed specific legislation (or BSL), and in public and state construction and management of risk. I have a number of grave concerns about the BSL component of the current UK Dangerous Dogs Act 1991 (DDA) in its present form. As I shall demonstrate, it is not a rational law, and gives rise to many instances of injustice, while failing to protect the public, or dogs. Any attempt to extend this aspect of the law would not be rational or just. In addition, there are a number of additional proposals around dog control that are unreasonable and unworkable. These will make owning and controlling a dog more difficult, and will not protect the public or dogs. I will therefore also address these..."