The Courage for Conflict: Kennedy; M.E. and Political Conflict: Bayliss

The Courage for Conflict by sociologist, Angela Kennedy

In response: M.E. and Political Conflict by William Bayliss

Shortlink for Post #4: http://wp.me/p7FYk-3a

Source  The Courage for Conflict

The Courage for Conflict

By Angela Kennedy  |  29 October 2004

Regarding the two recent Co-Cure posts An open letter to all CFS/ME advocates and Advocacy in the CFIDS community:

AIDS advocacy is probably one of the greatest examples where courage to stand up and say “This is morally wrong”, and brave conflict and accusations of personal attack, has worked effectively for patient rights. Movements for social justice have historically only become effective when they have adopted adversarial positions towards those depriving them of that justice.

The issues around when does criticism become “personal attack” have not been tackled in either of these posts. What constitutes “healthy” disagreement (or “unhealthy” for that matter) has not been clarified either. The question (unanswered in these posts) also arises: when people who are supposed to be fellow advocates are sabotaging important progress, how do you refrain from conflict without acceding to the sabotage? Majority rule can become mob rule: put three Wessely proponent psychiatrists in a room against an ME/CFS sufferer and they will win the point that ME/CFS is a mental and behavioural disorder: it does not make them correct.

Kimberley McCleary cites another who claims that: “Communities of suffering (COS)* (and those at risk) deserve to have a “seat at the table” of research and public health policy decision making. There needs to be greater sensitivity to the etiological understandings of COS. On the other hand, communities of suffering also need to recognize that their etiological understandings may not be correct.”

The question is, how is “correct” decided? And by who? What happens is the “COS” AREcorrect, (as, for example, in the ME/CFS community’s critique of the inappropriate generalising of psychiatric/behavioural causation to the neurological disease ME/CFS WHO ICD-10 G93.3, by psychiatrists who have been researching on heterogeneous groups) and they are ignored by policy makers anyway?

There are some real problems with these posts. To conflict theorists (broadly those who study how unequal power relations work in societies, but out of concern to reduce the social and material inequalities of such power relations) they would appear very naive and extremely functionalist (broadly supporting of unequal power relations in society, believing they perform a necessary function). A façade of respectability and striving for harmony is being constructed in these posts: but even, for example, British and North American government politicians are allowed to be adversarial! How realistic is it to expect deep conflict and anger to be suppressed in the ME/CFS community, especially considering how deeply oppressed its members remain?

I think the ME/CFS community has some very hard questions to ask itself about power relations, both within the community itself, and those directed against the ME/CFS community. We have STILL not had the successes we desperately need: how long are people prepared to continue to be denied of these? These are important issues to consider: they are not rhetorical questions. Adversarial positions have arisen, not because we all want to be ‘rivals’ or enjoy conflict, but because our situation is so desperate. There is, unfortunately, a real need to be adversarial. It takes courage to be so.

While people continue to encounter personal oppression, exploitation and misconduct, there will be conflict. The way to reduce such conflict is to work towards righting the wrongs, and this needs to be done as a matter of urgency: strategies for strong, effective political advocacy that does not shy away from assertive claims for the rights of ME/CFS sufferers and, where necessary, conflict with those whose actions are blocking such strategies, are our greatest hope of preventing our rights as a community from being further eroded, and ensuring that those rights are met, promptly.

Angela Kennedy [At the time, director ONE CLICK Group]
THE ONE CLICK GROUP
29 October 2004

---

Source   M.E. And Political Conflict

M.E. and Political Conflict

Response by William Bayliss  |  2 November 2004

With regard to University Lecturer Angela Kennedy’s article entitled The Courage for Conflict – posted on the ONE CLICK Group website on 29th October 2004. I am the spouse of an M.E. sufferer and a social-science graduate: majoring in social history/economics and with many years of experience working for social justice & environmental responsibility. I probably know more than most how human agency and chemicals are bringing our planetary biosphere to the point of nightmarish precipice.

The environmental situation is somewhat analogous to the extremely urgent situation now faced by M.E. sufferers  – in that matters are very much coming to an ugly head. In this case, the myopic human agency responsible is that of deceitful corporate-backed psychiatrists – who are presenting dangerous cost-saving ‘treatments’ to budget-conscious Government Ministers. Evidence for and the agenda of corporate backers has been amply set out by – amongst many other authors – Martin J Walker in his book entitled Skewed: “Psychiatric hegemony and the manufacture of mental illness in Multiple Chemical Sensitivity, Gulf War Syndrome, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome” [Slingshot Publications, August 2003, ISBN: 0-9519646-4X. Available for £12.00 including p&p from: Slingshot Publications, BM Box 8314, London, WC1N 3XX].

Though it is nominally a research trial into M.E., the Medical Research Council’s current ‘PACE’ trial has been very cleverly designed to exclude most true M.E. sufferers and include sufferers of mental illness. As such, the trial is a deceitful national scandal and a gross abuse of taxpayer’s money. When the skewed results of this trial begin to be used by Government, the NHS and the DWP, M.E. sufferers should be under no illusions as to what it will mean.

They will face forced and increasing physical exercise programmes at the hands of psychiatrists in the twelve new regional ‘M.E. Treatment Centres’. Patients’ negative response to such programmes will be viewed by these psychiatrists as evidence of mental illness – thereby presenting an appalling no-win situation to physically vulnerable people.

There is now much international research evidence demonstrating why patients with M.E. (ICD-10 G93.3) will respond negatively – suffering long-term damage and disability as a direct result. However, these (Simon) Wessely-School Psychiatrists ignore such hard science because they are working to their own corporate-backed agenda.

In opposition to good science they simply assert that M.E. is not a real physical illness and is only ‘an errant belief’: i.e. a mental illness. Unfortunately, this perverse psychiatric view is fast capturing the minds of Ministers, NHS Doctors and Managers at the DWP (Department for Work & Pensions).

The impending results of the PACE trial will no doubt set the seal on this cancerous doctrine. In the not too distant future, persecution of M.E. sufferers, benefit withdrawals and the number of families with child M.E. sufferers subject to child ‘protection’ and ‘care’ orders will all skyrocket. Should readers believe that such an assessment is over-the-top fear-mongering by amateur M.E. campaigners I would direct them to document entitled The Mental Health Movement: Persecution of Patients by the eminent UK Emeritus Professor of Medicinal Chemistry, Malcolm Hooper.

I fully endorse the general thrust of Ms Kennedy’s article with respect to courage and conflict. If M.E. sufferers and their families do not wake up and confront the forces ranged against them now, the ‘conflict’ they will face at the 12 new (psychiatric) ‘M.E. treatment’ centres in the near future will be diabolical by comparison. The proverbial writing is well and truly upon the wall. The well-intentioned but wholly misplaced attempt to dialogue with and influence these corporate-backed psychiatrists has not only failed to secure progress, it has led to the extremely dangerous situation now at hand.

All this pussyfooting about has been tried for years by the ME Association and Action for ME and has been pointless and damaging to our cause. Members have said as much for years, but their ‘representatives’ have not been listening. It is the view of many that this has led to the corruption of these two organisations, both of which emphatically do not now represent the best interests of true M.E. sufferers.

The situation is analogous to that of Neville Chamberlain’s appeasement of the Nazis. Chamberlain wasted years trying to negotiate with Hitler when any cursory reading of Hitler’s copious words would render it obvious that conflict was unavoidable. Chamberlain’s time wasting was doubly foolish because it gave the Nazis time to gather strength and gain allies.

Some in the M.E. community may find such an analogy distasteful. In response I would direct them to just a cursory reading of the equally copious words of ‘Wessely-School’ psychiatrists (for example, Dr Michael Sharpe’s statement that: “Purchasers and Health Care providers… are understandably reluctant to spend money on patients who are not going to die and for whom there is controversy about the ‘reality’ of their condition [and who] are in this sense undeserving of treatment.” [Hooper – op cit. page 75.]).

I would also add this: what is really distasteful is that, as were the Nazis, Wessely-School psychiatrists are hell-bent on using pseudo-science to persecute physically ill people because they are a costly inconvenience. Such persecution is causing untold misery and has, in the opinion of many, contributed to the desperate suicide of physically ill M.E. sufferers. I for one am very angry about this scandalous situation and plan to do something about it. What are you going to do about it?

I would solemnly caution the M.E. community to beware of people attempting to persuade us not to confront and politic against corporate-backed psychiatrists. Carefully examine the motives, loyalties and sponsors of these foolish souls. History most definitively shows that human-rights and justice are never given; they have to be fought for against powerful vested interests.

The M.E. community are not the instigators of politicised conflict, the Wessely-School are. These people are not open to reason, they are the enemy of good science and they are the enemy of M.E. sufferers. Enough already, the time has come to sadly disassociate with MEA, AfME and other appeasers – they are part of the problem not the solution.

We did not start the fight with the Wesselyites but we MUST now take courage and fight fire with fire. The one thing we have on our side that Wesseleyites do not is science. It is time to expose bad science and vested interest.

William Bayliss, University Member
2 November 2004

More thoughts on the Gibson Report by Angela Kennedy

Shortlink for Post #2: http://wp.me/p7FYk-L

An edited version of a commentary first published in December 2006 by social scientist, Angela Kennedy, following publication of the “Gibson Report”.

These are some of my thoughts on some problems in the Gibson Report

My own concerns below are in addition to other concerns expressed by others (including but not limited to the dismissal of Lyme, the children’s section, the approval of CBT etc) and also in addition to approval of some of the more positive aspects of the report. As I have said before, the key is that no matter how positive some aspects may be, it is the dangers that we need to guard against, and therefore it may not be in the community’s best interest to wholeheartedly endorse the report, even in principle. In fact my own opinion at present is that it would be foolhardy.

It was only by reading this report about four times and reading John Sayer’s comments [Page 77: The ONE CLICK Report Gibson Inquiry], and putting my sociological linguistic analysis head on (as tedious as that appears to be to some people!) that the following problems occurred to me. I didn’t see it on the first reading at all.

With regard to point 2 below, the Report claims patient hostility TOWARDS DOCTORS THEMSELVES (not their policies) SEVEN TIMES.

With regard to point 3, I believe that comment from the Report has been made before by a psychiatrist – possibly Peter White? [Ed: Professor Peter Denton White, Barts CF Service].

These comments have been submitted to One Click as part of their consultation exercise:

1. This report is written in a very idiosyncratic style – which one would not expect from a document produced by a group of parliamentarians and where clarity is of vital importance. There are, therefore, some confusing statements requiring further clarification, for example:

The group does not intend to criticise the motivations or actions of any one group…

What does this mean? Should an enquiry not present criticism if necessary?

…indeed, the Group wishes to avoid being distracted by debates centring on semantics in this difficult and contentious field…

This statement is charged with innuendo yet nebulous at the same time. What ‘semantics’ problems have been encountered by the Group?

2.  Emotive and inappropriately inflammatory language against patients, both individually and as organised advocates (or ‘groups’), that has no place in a report ostensibly on scientific research into ME/CFS has been used on more than one occasion by both by Dr Ian Gibson himself in communications around the report – for example, in his article published in the Journal of Clinical Pathology in August 2006, and within the Report itself, for example:

…for some sufferers, their personal physical experience of the illness has led to resentment of those who favour a psychosocial/behavioural course.

This comment is unnecessary and speculative. Patient representatives who criticise the psychiatric paradigm do NOT express negative personal feelings towards the proponents of the paradigm. They critique the paradigm itself and the actions of its proponents. To claim otherwise is emotive and inflammatory.

…we are left in no doubt that this is a contentious field, and some of the evidence we heard provoked considerable hostility from the audience.

What audience? Why an emotive term such as ‘hostile’?

Quite apart from the often strongly polarised views of some patient campaigning groups and the scepticism of some of the medical profession, there have been disagreements, even amongst those who represent different groups of patients and medical professionals. This has left many patients feeling very aggrieved, and many doctors feeling misrepresented.

The comment about patients’ feeling is unnecessary and contributes to an insinuation of patients as being “over-emotional”, while doctors, in contrast, are merely and justifably feeling ‘misrepresented’.

Professor Wessely is considered by many to be the leading expert on treating CFS/ME and the CFS/ME treatment centres set up by the NHS have been to his model. Many patient groups oppose these treatments, because, although they are founded on the positive results of controlled clinical trials, they are psychologically based.

Here patients are implied as being prejudiced against psychological treatments, despite the alleged efficacy of the treatments. This is clearly not an accurate summing up of advocate critique of the psychiatric paradigm, which is based on critical analysis of the evidence and claims put forward by proponents of the psychiatric paradigm. To insinuate otherwise appears disingenuous.

Wessely gave up the research side of his work, possibly due to extreme harassment he received from a very small fringe section of the ME community.

It is quite simply ludicrous that an inquiry carried out by parliamentarians has apparently accepted such serious yet nebulous, and apparently un-evidenced allegations at face value. This part of the report is particularly inflammatory towards patients and therefore inappropriate.

Their observations that GET [Graded Exercise Therapy] may make severe sufferers feel worse, has lent fuel to their often serious antipathy to the doctors offering it.

Again, this comment is unnecessary and speculative. Patient representatives who criticise the psychiatric paradigm do NOT express negative personal feelings towards the proponents of the paradigm. They critique the paradigm itself and the actions of the proponents. To claim otherwise is emotive and inflammatory.

…there is a great deal of frustration amongst the CFS/ME community that the progress made in the late 1980s and early 1990s toward regarding CFS/ME as a physical illness has been marginalised by the psychological school of thought. It is clear the CFS/ME community is extremely hostile to the psychiatrists involved.

Again, this comment is unnecessary and speculative. Patient representatives who criticise the psychiatric paradigm do NOT express negative personal feelings towards the proponents of the paradigm. They critique the paradigm itself and the actions of its proponents. To claim otherwise is emotive and inflammatory.

The frequent categorisation of patients as angry and hostile is a highly unfortunate feature of this document. It has already been found that this tendency to describe patients thus is rife within the literature of proponents of the psychiatric paradigm (Kennedy A, 2005, Hooper, 2004, Marshall and Williams, 1996, 1999). It is therefore highly demoralising to see similar constructions of patients within the Gibson Report.

In Dr Gibson’s Journal of Clinical Pathology article, he states: “…to curtail attempts of some to suppress what they hear and what they see written down and to keep their vitriolic actions and comments at bay.” It is clear that Gibson has allowed personal prejudice to inform the way he has constructed the very people he claims to want to consult. In the circumstances, it is ironic that the Gibson report claims “…our task is to highlight the ongoing struggle of the CFS/ME community and to ensure that the voice of the patient is heard”.

By constructing patients or their representatives as hostile, ‘vitriolic’ and unreasonable is to further alienate the community from enfranchisement. It is astounding to find such emotive and inflammatory language in such a document.

3.

…for some doctors to deny the existence of a physical part of the illness is as equally unhelpful as the claim by some patient groups that there is no psychological element to the disease.

This statement is problematic on a number of fronts. There is a construction of a “straw man”- the alleged doctors who deny physical elements of the illness. In actuality, no doctors would do this. The fundamental contention arises where doctors assign psychiatric causes to physical symptoms. By ignoring this fundamental problem, the Report engages in “fence-sitting”, which, in actuality, allows the psychiatric paradigm to take ascendancy. Furthermore, to claim that ‘some patient groups’ are claiming that there is no psychological element to the disease is speculative and misrepresentative – patients have instead been arguing that any psychological aspect of ME/CFS can be seen in any other organic disease, and that there should be no special pleading for ME/CFS as somehow more ‘psychological’ than any other organic disease.

4.

A lot has been made of the link between CFS/ME and Lyme’s [sic] disease or Lyme Borreliosis.

What does “A lot has been made” mean? In light of the further statements made on this subject – it appears a very trivialising statement to make, in the face of strong research and clinical evidence demonstrating the relevance of this issue to ‘CFS/ME’.

5. The recommendations in section 4.7 are astounding, for example, “other symptoms should be treated only when the doctor had absolutely excluded any other underlying organic illness that could be the cause…” and ” if depression is felt to be a significant result from the illness and contributing to its overall effects then anti-depressants may help if prescribed with full explanation by the doctor.” In this section, the Gibson Report is actually giving medical advice to doctors, a la NICE! This could not possibly be part of its remit.

6.

…the lack of easy confirmation of the organic nature of the illness by a readily available investigation lends itself to occasional invasion by those who are not genuine sufferers. The existence of such patients, and the inability of some in the medical profession to separate them from genuine patients with CFS/ME enhances the view that all patients with CFS/ME are neurotic and/or not genuinely ill.

These comments appear to arise from pure speculation and opinion. Such comments point to the special pleading of ME/CFS being a ‘malingerer’s charter’ – a professed view of certain proponents of the psychiatric paradigm.

7. In light of the many real problems of this report, a glowing endorsement by the ME/CFS/borreliosis etc community would be dangerous.

The report has various dangerous flaws. If it is endorsed in its entirety – it could have far-ranging adverse effects on many members of the community.

The Gibson Inquiry/Report has many similarities to the CMO’s report- the usual curate’s egg situation – good in parts. But it is the flaws that form the most potential dangers to the ME/CFS community. People’s safety is at stake, and here we are faced with possible risks to that safety caused by government intervention, a valid concern of advocates since the beginning of this Inquiry.

There are some fair questions to ask: How damaging will the flawed parts of the Gibson Report be to sufferers themselves? Will we find the positive aspects not followed up because the report actually has no teeth – but the flawed comments adopted to the letter by the psychiatric lobby and their government supporters?

No patient or patient representative has to endorse the report as a whole, even if some of the recommendations / comments are considered good.

REFERENCES

Hooper, M. et al. The Mental Health Movement: Persecution of Patients? 2004

Kennedy, A. A SHORT SUMMARY OF THE PSYCHIATRIC PARADIGM OF ME/CFS  2005

Marshall, E. Williams, M. Denigration by Design? A Review, with References, of the Role of Dr (now Professor) Simon Wessely in the Perception of Myalgic Encephalomyelitis, Volume I: 1987-1996: August 1996 (217 pages); Marshall, E. Williams, M. Denigration by Design? Volume II: 1999 Update: December 1999 (270 pages).

© 2007 Angela Kennedy

The report by The Group on Scientific Research into ME (GSRME) that resulted out of the “Gibson Inquiry” can be read here: http://www.erythos.com/gibsonenquiry/Report.html