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The politics of ME, ME, ME

Keith Kahn-Harris and David Hayes, 20 - 01 - 2009

The shrillness and point-scoring of much internet-based discussion - on topics as diverse as the Israeli-Palestinian conflict and chronic fatigue syndrome - is narrowing the space where a larger political dialogue should be, say Keith Kahn-Harris & David Hayes. 

(This article was first published on 9 January 2009)


The conflict in Gaza has dominated world headlines since the closing days of 2008. The war there is an exceptional event yet it also contains many elements of the familiar - in part because even at the “best” of times, media coverage of the middle east can be intense. In the new media age this coverage includes featuring and reflecting the intense engagement of people from around the world in the affairs of the region.

Indeed, it seems unarguable that anyone with even the slightest knowledge of world affairs knows “something” about the various middle-east disputes, and indeed is more likely than not to have an opinion on their rights and wrongs (which cannot be claimed with equal confidence for other conflict-zones, such as Kashmir or Abkhazia or the Democratic Republic of Congo). The middle east is distinguished by the way that legions of people across the globe - politicians, activists and commentators among them - are invested in its conflicts, often to a degree of passionate and partisan engagement. They may believe that the region is where the fight to defend western civilisation is being fought or that it is the place where the struggle against American imperialism needs to be won; that Israel in Gaza is justly defending itself from terrorism or that it is engaged in a brutal colonial enterprise - but in either case, many global protagonists are united in a sense of involvement in the region and even a sense of “ownership” of its issues and contested claims.Keith Kahn-Harris is a research associate at Goldsmiths College, University of London.
His website is here

Also by Keith Kahn-Harris in openDemocracy:
The attractions of denial” (13 September 2007)    
How to talk about things we know nothing about” (21 February 2008)

The elusive victory

In principle, there is nothing wrong with this. After all, one result of media or public indifference to the many “forgotten” wars in Africa and elsewhere is that they remain of interest only to those who are physically involved in it - which often contributes to their more or less indefinite perpetuation. At least in the middle east the interest of those around the world also ensures a ceaseless search for solutions and for reconciliation.

This very process of involvement has a twofold downside, however. First, it ensures that the more extreme protagonists on the ground are given moral support for their often violent struggles, their own passions fuelled rather than moderated by outsiders’ engagement. Second, those who choose or feel obliged to get involved in conflicts such as Gaza often do so in ways that are polarising, dogmatic, repetitive and damaging to the space of democratic debate they choose to enter.

A prime example is the Guardian’s Comment is Free (CiF) site, one of the most popular outlets for political commentary in Britain (and the United States). At the time of writing it is dominated by opinions on the conflict in Gaza. But even on an “ordinary” day there will normally be at least one comment piece on Israel-Palestine, Iraq or another middle-eastern issue (indeed an entire section of CiF is now devoted to the region). The articles tend to be short, easily understandable provocations - but the comments thread is where much of the real “action” takes place. The number of comments that the piece attracts is the principle measure of its popularity. In a kind of Darwinian struggle, the items that are kept on the front-page of the site for longest are those that attract the most comments. These are routinely pieces on the middle east; at the time of writing an article by Simon Tisdall on Barack Obama's response to the war in Gaza is in top slot with 1,108 comments (see “Obama is losing a battle a battle he doesn’t know he’s in”, 4 January 2009).

David Hayes is deputy editor of openDemocracy

Among his articles for openDemocracy:

"Bob Dylan's revolution in the head" (24 May 2006)

"A politics of crisis: low-energy cosmopolitanism" (22 October 2008) - with Andrew Dobson

"The world's American election: a conversation" (4 November 2008)

Comment Is Free is frequently an outlet for exciting and challenging writing (a judgment that is based on more than the fact that one of us has contributed to it). But when you peruse a typical comment-thread, the problems with it become apparent. What is striking is that few of the comments really engage with the piece they are supposedly commenting on. Instead, most commentators just engage with each other, often with a viciousness that takes your breath away. There is a kind of circularity to the threads, with similar arguments repeated time and time again and rebutted as often.

In parallel with the war in Gaza, another war is taking place in which the battlefields are comment-threads, message-boards and blog-posts. A maniacal energy is expended in the endless attempts to prove the other wrong, to find that elusive killer-blow that will ensure victory. That blow never comes, perpetuating the conflict as it migrates from website to website.

The war of attrition

This is not just a question of people with too much time on their hands beavering away at the keyboard on controversies that affect nothing – if it were “only” this, there would be little to worry about. The problem goes deeper. It is partly that so much of this activity is harmful and wasteful, in a context where intelligent citizens working in a spirit of constructive dialogue could in principle perform a useful role in clarifying issues and arguments and offering usable ideas to those seeking solutions to the conflicts concerned.

Even worse, this kind of internet politics is also engaged in by opinion-formers, major institutions and “the brightest and best” more generally. In the Jewish community - a world with which one of us is very familiar - those who are most committed and influential in what they view as the defence of Israel have, over the last few years, increasingly come to adopt the same style of politics and mode of address. They include (in the United States) high-profile intellectuals such as Alan Dershowitz and lobbying organisations such as the American Israel Public Affairs Committee (Aipac) and (in Britain) organisations such as Britain Israel Communications & Research Centre (Bicom). Pro-Palestinian activists, while usually less organised, also engage in these struggles with just as much fervid and driven commitment.

Both sides, all sides, have become tied up in intricate micropolitical struggles. At the moment these include: who exactly broke the ceasefire first; what the word “civilian” means; whether civilian casualties are simply “human shields”; what a “humanitarian crisis” consists of. In the recent past they have included long-running sagas such as whether Jimmy Carter is an anti-semite; whether settlements are illegal under international law; whether a particular BBC report is biased.

At root, these struggles can involve vital issues, but in the hothouse of the internet, they so often disintegrate into thousands of fragments - from the interpretation of an ambiguous phrase to the reliability of a single news item. The result is an internet war of attrition that produces an impenetrable fog of confusion - and must reinforce the indifference and alienation of the non-involved.

The latter point is vital, even though it may be of sublime indifference to the super-motivated partisans. The ultimate puerility of internet combat over the middle east means that the larger and most important issues - and the possibility of keeping in sight the big picture, a vision of a better future for the region - fade from view.

In this sense such internet politics is not just self-defeating but also profoundly exclusionary. Only those who are similarly versed in the minutiae of the conflict can participate fully. How telling that the supposedly democratising force of the internet should be subverted in this way! This is politics for insiders. Indeed, the ranks of the insiders may have been swelled by the internet, but the cliquishness of this new political class is no better than the more traditional political cliques. Worse, so obsessed is this clique with its endless internal arguments that the need to connect with those on the outside - both the larger citizenry, and those at the sharp end of conflicts - is largely forgotten. What remains is a mode of politics that has abandoned both persuasion and anchorage in reality outside the discursive bubble.

A medical parallel

There is evidence that the dead-end tendencies of much net-based combat over (for example) the Israel-Palestine issue is but one case of a broader trend. In many other areas of social and political controversy, or merely of public life, the way topics are discussed can over time lead to a fatal polarisation, circularity and exclusion - to the extent that the very logic of internet politics seems to push the ostensible subject-matter further and further away. The point can be illustrated by drawing attention to another form of cyberspace “ME” politics that may seem a long way from the internet war over the middle east, but which shares many of its characteristics.

The politics surrounding the illness myalgic encephalomyelitis (ME, also known as “chronic fatigue syndrome”) is unknown to most of those not affected by the condition. Yet in the experience of one of us its relentless viciousness is eerily similar to the far more high-profile middle-east conflict.

The medical controversy about what ME is, what causes it and how it can be treated has been bitter. For many years the “psychosocial” paradigm dominated research and treatment; this viewed ME as a disorder that, while possibly triggered by a virus or infection, is perpetuated by psychosomatic processes of deconditioning. This paradigm favours treatments for ME that focus on addressing “negative thought patterns” and gradually increasing exercise.

This paradigm has found itself increasingly being contested by “biomedical” approaches which argue that ME has physical causes. The proponents of this approach point to the failures of psychological and exercise therapies in many patients, while its detractors point to the continuing lack of evidence of a clear physiological cause of the illness.

Here then is a controversy that has profound consequences for ME sufferers and their families. It's understandable that as a result sufferers, patient groups, medical bodies and research funders have become embroiled in debates over how to respond to ME. What is problematic is the ways that the politics of ME have degenerated in recent years as the internet has become an important political tool.

In Britain, what might be called a largely web-based “ME opposition” has emerged that is passionately committed to the biomedical model. Its adherents are suspicious of the medical establishment, which they see as dominated by “psychs”; they also criticise most ME charities, in particular Action for ME, for being unaccountable and too willing to collaborate with the psychs. Again, in themselves, these views are not necessarily unjustifiable. The problem is that they are propounded in a way that falls into the worst traps of internet politics.

A dedicated group of activists has committed itself to the exposure of any trace of psychosocial bias. The campaign is relentless. On message-boards, blogs and other websites, any accommodation with psychs or deviation from this fight is instantly attacked. Any ambiguity or error in the statements of members of ME charities and the medical establishment is pounced on, deconstructed and treated as sinister. Lengthy, minutely detailed “dossiers” are compiled and presented with an accusatory seriousness.

An indication of where this leads is suggested by a blog such as ME Agenda. Over the last few months, many of its posts have concerned accusations of “betrayal” at the Countess of Mar, the patron of a number of ME charities who has apparently “gone over to the other side”; other posts have consisted of an impenetrable series of claims and counter-claims surrounding the actions of the chair of the Peterborough M.E. & CFS Self Help Group. To the outsider, such controversies are bewildering or irrelevant. They exist as a self-enclosed world in which the real issues surrounding ME have degenerated into a Mobius strip of controversy. Whoever might or might not be “right”, the real need to move forward in addressing a terrible condition is all but forgotten.

A politics beyond solipsism

The politics of ME - the illness - demonstrates that the insular internet-driven combat that influences so many arguments over the middle east are now replicated in other fields. People equipped with the requisite background or expertise - for example, those few who (like one of us) are both committed Jews and persons with ME - might have the knowledge necessary to understand the political contours of these two particular controversies. But in the huge number of other controversies where an individual's knowledge is more limited, the possibility of understanding, being persuaded by, or much less participating in them is much reduced if and when they descend into internet-driven cliquishness and circular backbiting. The day may be fast approaching when all politics will look like the middle east - and the only responses available will be either to join in the maelstrom of bickering or (more likely) to shrug one's shoulders and switch off.

The democratising possibilities of the internet are in the process of speeding the degeneration of the public sphere into a proliferation of insular nodes, each fighting a war that can never be won. Battles cannot be won on the net nor can they be lost. What remains is a solipsistic politics of ME, ME, ME: my views, my truths, my facts, my pain, my anger. Convincing others and changing the world is forgotten in favour of the perpetuation of one's own perspective.

It would be a mistake to look back at politics before the internet age as a prelapsarian idyll. But new realities create new problems as well as solving old ones. What is needed is a political model that can beging to redress the rise of solipsistic micropolitics; one that emphasises connection, self-critique and cool, considered analysis. What is needed is a different kind of technology that retains the internet's openness to participation but without the tendency to push activists and driven individuals towards self-righteous isolation. What is needed are tools for dialogue rather than tools for the proliferation of disconnected voices (see “How to talk about things we know nothing about”, 21 February 2008). The message-board and the comment-thread rarely encourage users to listen to each other, to share deeper (which usually means more complex) feelings rather than shouting at each other. To be sure, the possibilities for dialogue are there in the technology but the temptations of monologue usually prove too tempting.

It is hard to know how exactly this change could be brought about. Perhaps it is time for comment-threads on popular sites to be monitored more carefully or even jettisoned altogether. Perhaps the right to comment on something should be contingent on maintaining a respectful and constrained manner. The emergent trend towards “slow blogging” emphasises the production of considered, thoughtful online writing over immediate, often angry responses (and openDemocracy itself provides many good examples of this kind of writing). Blogs that feature dialogues rather than monologues are emerging (such as bloggingheads.tv). Social-networking sites can bring politically active people together in ways that develop meaningful relationships rather than antagonistic ones (see for example, the “peacemaking” network, mepeace.org).

The tools for a different kind of politics exist. What is needed is the will to turn away from self-obsessed and point-scoring politics to a politics that is actually about something. What is needed is a politics that reconnects individuals with each other, a politics that looks outwards as well as inwards, a politics that is not all about "ME".

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Keith Kahn-Harris

bloggingheads.tv

mepeace.org

Slow Blog Manifesto (Todd Sieling)

A "Slow Blog" (David D Perlmutter)

 
This article is published by Keith Kahn-Harris, David Hayes, and openDemocracy.net under a Creative Commons licence. You may republish it without needing further permission, with attribution for non-commercial purposes following these guidelines. These rules apply to one-off or infrequent use. For all re-print, syndication and educational use please see read our republishing guidelines or contact us. Some articles on this site are published under different terms. No images on the site or in articles may be re-used without permission unless specifically licensed under Creative Commons.
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jackfish said:



Mon, 2009-03-30 04:41

Normally I am a reader not a commenter. After all this I must agree that discussions on the internet may motivate people to think or research an issue, but notice that serfers often rip around the net looking for information that only buttress their own opinions. True research really can't be done on the net. I know I can't do it, (I have tried),  I can't trust the sources. I  don't know where the truth is in cyberspace or how to verify it or who is posting it. I know how to use a search engine but does it lead me to the truth? I don't think so. I'm like most people...somewhat lazy, and it would be great to sit in front of a machine and have it spew out facts and truths. I don't think people are ready for that yet.

The truth is out there, in the presents of people, in your local libraries, (that need our support), in schools, in real newspapers, in nature and within the hearts of our elders. Some may say this is a simplistic position to take. It may be. But why then is it so hard for us to find the truth? Why don't we respect eachother and differing opinions? Why is racism still a problem? Why are we becoming so morally weak? Why do we keep polluting our environment? I am sure if you search around the internet you will find a million missives proporting the truth on each one of these issues. Get out there, away from the machines and really look for the truth.

Just some humble thoughts from a humble fisherman.

F1Fan (not verified) said:



Wed, 2009-01-21 14:20

I wonder if, given the contents of the article, the author regrets his rather shrill and point scoring contribution to the Sun in the wake of the initial Max Mosley revelations last year?

kkahnharris said:



Thu, 2009-01-22 11:34

Yes I do regret it to an extent. The News of the World rang me up and I was flattered to be asked to comment - I guess it appealed to my ego. I'd never dealt with a tabloid before and was very naive as to how sensational my comments would sound and I ignored the invasion of privacy issue. So I learned a valuable lesson as to what happens when your ego gets the better of you!

Having said all that, I was disturbed by the Mosley case.I don't have a problem with BDSM at all. However I do think that for Max Mosley, a person with far right views that are on record and a fascist ancestry, playing concentration camp scenarios is pretty dodgy. S and M is fine when there is a clear line between fantasy and reality but much more problematic when, as I think was the case with Max Mosley, the dividing line is much more fuzzy.

F1Fan (not verified) said:



Fri, 2009-01-23 15:02

Thanks for the very honest reply.

It's interesting that the one paragraph you write here, I think, adds more to the debate than the entire NOTW article. I disagree with your comments (a "fuzzy" dividing line might be an issue for the participants but if they are content the line is sufficiently clear then that is their business, they owe no duty to the public to ensure the line isn't fuzzy to the public when engaging in an activity never intended to be seen by the public) but recognise the thought that has gone into them. They are comments with which you can have a meaningful engagement, unlike the NOTW reportage.

Which brings me on to the main point that relates to your enjoyable article here: whilst the problem you describe certainly exists and is exacerbated by the internet, I think it isn't solely an internet issue.

kkahnharris said:



Sun, 2009-01-25 13:01

You're right - it isn't solely an internet issue. What I think has happened though is that the internet has intensified tendencies already present in the modern media and modern politics.

I should also say that I don't want the article to give the impession that I am critical of the internet and am in favour of some kind of return to a patirician, heirarchical approach to politics. The task is rather how to build media/internet/politics so that a host of voices can be heard without a descent into solipsism.

Lilian Nattel (not verified) said:



Tue, 2009-01-20 20:04

No, I am not going to call you a self-hating Jew. I'm Jewish myself, and relieved to find another person who is describing exactly my experience online--less in the blogosphere (I know what I'm going to get where I go), but through list-serves I participate in. The circularity and polarization you describe is exactly what I saw happen on list-serves that have nothing to do with politics or the mid-east (ostensibly) but have been dominated in the last few weeks by nothing else, to no end, and no educational purpose, but a reiteration of ranting. I want to learn more. And I want to hear all sides, to understand. But those kind of online arguments are just a matter of people shouting at each other. Endlessly. Thanks for the links to slow blogging and mepeace. In exchange I'll offer a link to the velveteen rabbi, which, like your piece, expresses a desire to learn and come to a reconciling understanding rather than an increasingly intense and divisive argument. That blog has links (in the blogroll) to others with similar objectives but from other religious perspectives. I also agree that it's a waste of energy to just shout at each other. Nobody is going to convince anybody by shouting. And in those interactions people are only listening for an opening to poke at. Aha! Gotcha! I am a mom to 2 little girls. I want them to grow up in a better world. I don't have time or energy to participate in, or listen to, a lot of shouters. I want to learn. And there are online sites where people do respectfully convey information and thoughtfully comment.

kkahnharris said:



Wed, 2009-01-21 13:15

Thanks for the support and  the link to the brilliant Velveteen Rabbi blog. Maybe I am being naive but I have been struck during the  Gaza conflict at the emergence of a constituency that wants to avoid the name calling on both sides and is more concerned at developing peace and reconciliation. I wish this was also true in the ME war. Sadly, it seems that my own ability to help in the latter regard is now compromised.

Troy Camplin (not verified) said:



Tue, 2009-01-20 14:35

I am actually trying to do this sort of thing over at my blog Interdisciplinary World. I am also trying to foster such an environment at The Emerson Institute for Freedom and Culture. The kinds of blogs you are complaining about are the ones that get all the attention, while blogs like mine are ignored.

Daniel Zylbersztajn (not verified) said:



Mon, 2009-01-19 16:17

Thank you for this fascinating piece. Well we are all guilty of the fast blog impulse, and I agree slow and resourceful is in deed better. I do think that political spin doctors do look at the comments even of oblivious discussions, for isn't real politics superficial anyway. What are the battles that people vote upon, they certainly don't go very deep. I mean look at the London Mayor elections, many voted for Boris, because he was a cool dude, these exactly were the words of my former guitar teacher. And there are many other examples like that. Politics as everything has speeded up even more and yes decisions are based on superficial accounts, e.g. Iraq invasion dossier on WMDs?

Also I like to applaud you on the point of access and relevance. Whilst internet use in the developing world is increasing, it certainly is still true that so far the net remains the domain of the privileged, even though in the West that may not completely true anymore - albeit many political discissuns presumably are being carried out on Bebo, and a you tube link on facebook. For sure not very deep in deed, and what's worse few seem to care.

On my blog I have taken the pain of linking to documentaries on issues I believe to be important. Visitors can watch documentaries on the shoa, civil rights movement and blood diamonds. This was in the hope that somehow we can link education with superficial browsing, how effective this is I am not sure.

Many thanks for taking the time to wrote this.

douglas clark said:



Sat, 2009-01-17 12:37

kkhanharris,

Quote:
I'm conscious that the comment thread has been dominated by the ME
issue. Do any readers have comments about the rest of the article?

I'd originally meant to say that I think your article contains much truth and a smidgeon of exaggeration all at the same time. I absolutely hate 'flame wars' which I think are the area of internet commentary that you are really referring to. Nor do I hang around sites which - of themselves -  are simply trolling for comments. We could probably both create a list of the latter.

The problem with Comment is Free is that it is very successful at what it does, which is generate traffic through controversy.

But, and this is important, it was also the first site where I came to realise that there are a lot of highly intelligent and motivated people who were suddenly able to directly challenge the media consensus. The arrogance of the journalists who wrote for that site in refusing to even defend - in the comments - their own articles, was a bit of an eye opener. The difference in culture between the journalists and the bloggers they co-opted, could not have been more stark. Bloggers are used to controversy and do, usually, stand up for themselves.

I don't think anyone is swayed, one way or another, by stupid, partizan comments, without content. That is, I think, the tribalism you are railing against? The Gaza conflict is a clear example, to me at least, of the web allowing an outpouring of emotional turmoil in a situation where commentators on web articles, haven't the slightest influence. It is a safety valve for frustration, as much as anything.

On the other hand, I have seen lazy articles torn to shreds.

That, I think, is internet democracy at it's most brutal.

I really like your idea of 'slow blogging'. I'd be interested in how it could be made more popular.

---------------------------------------------------------------

Could I be permitted to go off topic and ask an unrelated question?

I think that this article

http://www.liberalconspiracy.org/2009/01/16/police-state-economy-claims-its-first-victim/

highlights an issue that is under-reported. Given ODs'  commitment to  a Convention for Modern Liberty, how would one go about attempting to have this considered as an agenda item?

 

 

 

 

 

 

douglas clark said:



Sat, 2009-01-17 01:01

Could I just, briefly, comment on what Tony (Open democracy) had to say?

I think that the motivation for a new form of political internet community will arise from the near complete arrogance of power. What I mean by that is that the Westminster village likes to see itself as the arbiter of what the state requires to do. It does not, contrary to the emmollient words that it will regurgitate about consultation, petitioning, etc, actually move one inch. If you think that that is overegging it a bit look at the difficulty in changing government policy on Iraq interpreters or Gurkhas.

The problem with this is of course that intelligent, well-informed and motivated people who attempt to sway the government on a single issue platform will inevitably become frustrated. The consequence might be alienation. But it might also be one of seeking broader alliances, much as you are doing with your own 'Convention on Modern Liberty'.

What that might mean is that, in order to influence government, blog alliances across subject ranges become necessary and hopefully influential. It is in this area that the generalist liberal blogs, like Our Kingdom or Liberal Conspiracy can perhaps make a difference. Partly through their PR skills and contacts and partly through the likely weight of the putative 'rainbow alliance'.

Sorry, not as brief as I meant it to be.

 

 

 

 

 

 

 

 

Tony Curzon Price said:



Sat, 2009-01-17 02:40

I agree with you, douglas. The micro-politics will be aggregated into macro-politics, much as parties once aggregated interests. And successful political aggregation will come from taking micro issues seriously.

on which ... I have to say that the fascinatinbg insight into the divisions amongst those concerned with ME that this thread has revealed shows that there might be one of those aggregatable issues here.

 

Tony

 

---

tony

doc (not verified) said:



Thu, 2009-01-15 20:09

As an M.E. sufferer I am now struggling to work out why I dragged myself through this page of comments which has degenerated into precisely the kind of behaviour the article complained about. Yes I would like more money on biomedical research, no I am not going to attempt to slate any organisation that is trying to help my plight. Why peoplewho purport to suffer from this illness and want to improve things insist on wasing energy on a slanging match I shall never understand. And yes, this is exactly what has happened in the Israel- Gaza situation. Please grow up.

Ciaran Farrell said:



Fri, 2009-01-16 18:55

My medical diagnosis is severe Myalgic Encephalomyelitis + IBS and I have had ME since May 1995. 

Perhaps you are unaware of the fact that Action for ME, AfME, grew out of the strife between different factions within the old ME Association, MEA, which at that time had a branch network organised into Regional Groups.

Martin Lev lead a break away group from the MEA, and there were several splinter groups as well as a group that was set up to specifically campaign against any break away group. 

A local contact asked for my help via the Community Health Council I was Vice Chair of in the autumn of 1993 to set up a public meeting and to assist in the formation of a new charity.

I had heard about ME and I had been lobbied by my contact and several members of Martin Lev’s group who came to a CHC meeting. I took a personal interest in it as I had suffered nose bleeds as a child and this had been put down to hysteria, which it was not. I therefore believed that those who lobbied me were right to campaign against a psychiatric label for their illness.  

To cut a long story very short, I help set up the public meeting at Friends House in Euston in December 1993 and was elected onto a committee to look into the form of the new charity.

 I was treated very badly by the others involved who decided they were not going to do things the democratic way and be bound by the decisions of the public meeting. 

The public meeting was itself lobbied against by a number of quite well organised groups which I have set out above who came into the meeting and made it a rather rowdy affair. 

I was prevailed upon to obtain the necessary documents to enable the new charity to be formed, and to explain their use to what had to some extent become the core group of the new charity as more people had undemocratically taken up residence on what had become a split organising group for the new charity.  

None of those involved knew enough about constitutions or the way charities operated on the level of constitutions to be able to draw up a Memoranda and Articles of Association or to make the minimum specific changes required to change a blank off the shelf model document into one that would be accepted by the Charity Commission and Companies House as a registration document for a charity.

I was prevailed upon to do this, which I did, but I was appalled by the attitude of those involved which can be summed by what Martin said, “this is for them ( meaning the constitution) the authorities, once we get our registration we ignore all this ******* rubbish and run the thing our way and **** the rules, we do what we want”. 

You may also be unaware that AfME has a place on the monitoring and evaluation group of the PACE trails which is a fundamentally flawed and pro psychological piece of non biomedical research into the effectiveness of Cognitive Behaviour Therapy, CBT, and Graded Exercise Therapy, GET, the two treatments that AfME champion which are based upon a psychologically dominant biopsychosocial model of ME. 

You may also be unaware that AfME obtained £24, 000 from the World Health Organisation to advise the WHO about the differences between physical neurological disease ME, and the mental health condition Somatizisation Disorder.

This is listed in the AfME report and accounts which AfME have to send in to the Charity Commission and Companies House.

 Instead of advising the WHO about the physical nature of ME and    it must not be confused with mental health conditions, AfME went along a completely different track, that of trying to make Somatizsation disorder into a physical condition and thereby saying that ME and Somatizisation Disorder can be regarded as two different kinds of the same thing. 

AfME refuse to answer questions about their Somatizisation Project, but it was led by Dr. Sykes who was the Director of the charity Westcare which AfME illegally engulfed. 

There are a number of other examples I could give about AfME, but I think I have made the point. 

Therefore when you champion AfME as a valiant steed for the ME community to obtain biomedical research into ME on a biomedical basis, I would advise you to take a very hard look in the mouth of this gift horse as I think you will find that it speaks with a forked tongue and is not under any kind of democratic control by its members and the ME community who ride on its back.

kkahnharris said:



Thu, 2009-01-15 16:11

I'm conscious that the comment thread has been dominated by the ME issue. Do any readers have comments about the rest of the article? Anyone fancy calling me a self-hating Jew?

kkahnharris said:



Thu, 2009-01-15 16:13

sorry - hit wrong key

Smiffy said:



Thu, 2009-01-15 15:20

I am one of the many housebound M.E. sufferers, whose only contact with other sufferers is via the internet, that Keith Kahn-Harris is trying to censor.  His organisation AfME do not represent us - we are represented by the 25% Group. (My understanding is that AfME do not have members, only asscoiate members who are denied AGMs and voting rights).My brainfog & memory problems (symptoms of M.E.)  are  bad so I apologise for not  following this lengthy discussion.

How can I speak Mr Khan Harris, after all these years of solitary confinement except of my individual experience?  I have been very ill & in dreadful pain  for 21 years whilst the government have poured all M.E. research & treatment money for my neurological illness into the psychiatrists' pockets. To me this misallocation of funding  whilst tens of thousands of us exist in a living hell is the 'wider picture' of M.E.

I've found out from private testing (as increasing numbers of M.E. sufferers are doing ) that my symptoms are caused by ongoing infection - in my case borreliosis and co-infections.  I can't afford private treatment & I can't get NHS treatment , only graded exercise and cognitive behaviour therapy and graded exercise - these have made me & many other so much more ill than we started.

AfMe are calling for more cognitive behaviour therapists . We have a physical illness, yet are being offered this to help us overcome our 'abnormal illness beliefs'. Is it self obsessed to ask for biomedical treatment for what we actually have, instead of the current therapies aimed not at people with M.E., but at those with the completely  different illness, chronic fatigue?

Is it self obsessed for me to find the current situation for M.E. sufferers immoral, and to want to change it? Is itself obsessed for Criona Wilson, whose daughter Sophie Mirza died of M.E. after being forcibly admitted to a locked room of a locked mental ward, to campaign for biomedical research, testing and treatment?

Would Keith Kahn-Harris like us all to be silent and permit AFME to have a monopoly on our treatment? Is it self obsessed of me to disapprove what they do?

kkahnharris said:



Thu, 2009-01-15 15:56

I'm not the enemy Smiffy. I too am disgusted by the lack of biomedical research into ME. The case of Sophia Mirza makes me want to punch holes in the wall. I've been ill for 16 years, although have a reasonably high level of functioning and I too am angry that I have been offered virtually nothing - only cognitive therapy that I tried and found useless.

I don't want to censor you or anyone else (including Ciaran Farrell). You or anyone else should write what they like. I am only trying to point out what I believe is the self-defeating tactics of a section of the ME community. 

I don't agree with AfME on everything but I don't think they are as bad as you suggest. They do not represent everyone in the ME community. Neither does the 25% group or anyone else. The ME community is diverse and no one group or person represents this diversity in its entirity.

AfME should not have a monopoly on approaches to treatment of ME. But that doesn't mean that every approach is necessarily better than AfME's.

 

 

 

 

 

 

Orson Unwells (not verified) said:



Wed, 2009-01-21 06:12

"I too am disgusted... Sophia Mirza... I have been offered virtually nothing... cognitive therapy that I tried and found useless... ."

So why not use your advantageous position to write exactly that sort of urgently needed, tough advocacy on the real matters of priority? Because it sounds too, ahem, "shrill"?

Instead, regardless of your alleged intentions, you add one more media attack on the ME community while the important stuff is relegated to the footnotes (the very bits you refer to with disdain in the article). From one who professes to be part of it, that reads of the very infighting you're whinging about, albeit from behind the elitist veneer of academic snobbery. We are not quite as thick as you make out and yet you seem to think "hey, have you ever considered you might benefit from some criticsm" angle" is a rather nifty novelty. It's not, it's old, and it's a very popular smear of the ME community; the entryist who can publicly "dish the dirt". But is it really pivotal and practical?

"I don't agree with AfME on everything but I don't think they are as bad as you suggest. They do not represent everyone in the ME community. Neither does the 25% group or anyone else. The ME community is diverse and no one group or person represents this diversity in its entirity."

Astroturf AfME does not represent pwME full stop -- it baldly relenquished any specific mandate to do so in 1993 and instead decided to become a "fatigue" charity and now cannot tell the difference between ME and a self-limited "fatigue" state. Now it is cementing its contempt of genuine exertional multi-organ ME by calling for ***MORE*** exercise therapists, helping to ensure there will be many more Sophia Mirza's to come. Would a genuine diabetes charity recommend confectionary merchandising and be expected to get away with it?

As well as collaborating with those psychologists who claim that ME does not exist, is "psychosomatic", "biopsychosocial", a "functional somatic syndrome", i.e. "fear avoidance" and deconditioning (irrational laziness), AfME supports politically & ethically dangerous quackery like the "Lightning Therapy", does not hold voting AGMs, refuses to endorse the need for biomedical investigations, treatment and recognition of over 70 years of existing published evidence. It supports the fraudulent PACE & FINE trials (which have nothing to do with real pacing and are crudely conceived), LIES through its teeth about what CBT (and pacing) is and its usage in treatment of other diseases like cancer (virtually none) and currently of import, objects to the crucial judicial review of the atrocious NICE guidelines, an action which has the support of 90% of the ME community.

So they ARE one of the biggest obstacles to the ME cause. Defense of AfME doesn't fit with your disgust of tragic cases of psychologising abuse like Sophia -- incidentally AfME and AYME claim to know better than the coroner/ pathologists -- that she did not die of ME.

"AfME should not have a monopoly on approaches to treatment of ME. But that doesn't mean that every approach is necessarily better than AfME's.

This demosntrates exactly why you have no qualification to speak out on the subject. You actually think it's alright to have contradictory "approaches" . Incredible, if we'd not heard such gumph before. It was exactly one of those "approaches" that helped torture and kill Sophia. You are as out of touch as your article suggests.

Luckily for you as a very mild sufferer, CBT was merely "useless"; the reality is that GET is usually part of the behavioural component of CBT (a re-exposure therapy) and 90% of severely affected sufferers have had iatragenic deterioration as a result. Not "merely" the severely affected if you consider that in the UK genuine ME is conflated with burnout, stress, PSTD, etc under the guise of the corrupt joke "Oxford" definition which inflates the prevalence. Withdrawal of other essential services goes hand in hand with the "encouragement".

If you think that an "approach" of graded exercise and CBT might benefit some people with "ME" then one logical conclusion to take from that is you really do not know or care what M.E is and how it has been consistently empirically studied through the decades. This is a disease where graded exercise is contraindicated, full stop; the heart is damaged and there is autonomic dysregulation: demand causes ***LOSS** of responsiveness. The physiopathology just does not support such fatuity at all. I note you accordingly refer to the the non-disease CFS interchangeably in your piece.

AfME's approach is dangerous for sufferers of G93.3 exertional ME. Yet they openly collaborate with PD White, a man who believes ME is an "abnormal belief" and gets his results by flagrantly redefining "recovery", even to the extent of inviting him to chair a biased conference.

A lot of severely affected sufferers, who until the 'net came along had no voice, are rightfully angry at this very view you propagate that there is no one truth and no one priority. That's "inverse proportional" healthcare, where the mildest get the most attention and those who are the severest get the least, and are treated by the likes of GPs and DLA et al, as the most "mad", to quote that "sad, bad or mad?" Guardian doc.

Yet the moral, ethical and practical priority should be clear. Access could easily be solved with some will, and biomedical research would benefit from the clarity that more out-of-normal-range symptoms, signs and findings bring, with a trickle-down effect on mild cases. To say nothing of the urgent need for community care, domicilary visits and biomedical investigation and monitoring. The priority is inarguable.

This would be logical approach to take and its the approach all other serious diseases take. Too bad if that's not what you want to hear.

You claim not to be the enemy but the enemy is smiling smugly when it sees your useful prevaricating and chin-stroking, not to mention articles that start with "ME ME ME"...

dunablue said:



Mon, 2009-01-12 10:38

There is a tone to this piece that is disturbing. It cmes of as a lecture by a teacher scolding his pupils for not staying in line or paying attention. The consistency, or lack of, of any particular thread (on this site or another) is something in always flux. An evenness to the flow of debate varies and has a lot to do with the nature of the site. Some discussions are more focused than others and even then can evolve or dissolve into chaos. But, finally, so what.

The problem here is the basic underlying premise in the piece and the nature of the public sphere and how it works. As Nancy Fraser has pointed out, there is no one public sphere; and how people 'behave' within various discoursive environments depends on the context of those discussions and their objectives...

 Listen to a little more Pink Floyd it might clarify the matter. 

kkahnharris said:



Tue, 2009-01-13 19:47

I understand that there is the danger of seeming authoritarian in criticising some of the problems resulting from the anarchy of the internet. I don't think the tone was a 'scolding' one though. The problem the piece is highlighting is not that people don't 'behave themselves' on the net. The problem is that the politics that results from the solipsistic tendencies of internet discussions is a narrow one that has real difficulties in producing change and engaging with people.

Hobbes said:



Sun, 2009-01-11 20:55

As a sometime contributor to the OD forums, I think the writers have identified an important issue here.  The danger of insiderese is real enough.  I don't agree with Englishman that anything is better than ignorance: impassioned misinformation poses its own risks, especially given the accelerated news-cycle.

Monkey (not verified) said:



Sun, 2009-01-11 18:51

It seems to me that, 'a context where intelligent citizens working in a spirit of constructive dialogue could in principle perform a useful role in clarifying issues and arguments' is what many of us crave in any debate context, whether in the chambers of our political houses, in academic institutions, through offline media or in the online space.
The internet is not the only arena subject to rhetoric, circularity of debate, avoidance of the issue, straw men, polarity or any of the other tactics that get in the way of constructive dialogue.
Happily however, unlike other fora for debating issues of public importance, the internet isn't in fact an exclusive club. Notwithstanding your valid points about the tendency of individuals to wield superior knowledge of finer points as a means to exclusivity, the internet at least offers access. It connects those who otherwise may not otherwise be able to engage with each other. It provides a lower barrier to entry. Although perhaps more would be achieved if these debaters less energy online and more engaged in offline action, it takes a lot more time, effort and determination before an active citizen get to a place where they can participate in debate of anything like this level of depth or intelligence (speaking as someone who has been active in public life). That is a fault of our democracies and is a gap which the internet may help to fill. Yes, there remains the need to turning discussion towards resolution and progress, and yes, there will always be good debate and bad debate but as far as I'm concerned the more people are able to engage, the better.

kkahnharris said:



Tue, 2009-01-13 19:49

Perhaps it comes down to this: the internet ensures quantity of engagement but not quality. Maybe encouraging deeper discussion and more profound engagement between netizens is the next stage of the internet revolution?

Ciaran Farrell said:



Sun, 2009-01-11 17:58

I welcome the fact that Keith Kahn-Harris does acknowledge that he ought to have declared his interest as being a member of Action for ME’s National ME Observatory.

 I also welcome the fact that he now acknowledges the fact that many ME sufferers and carers use the internet to campaign for an improvement to their lot, and to do so they need to change the system but he has not taken onboard what this means for the nature of the ME community online or his involvement in it. 

Having read and inwardly digested Keith Kahn-Harris’s comments I really don’t think he is taking the matter seriously, and that is why he has in the past been criticised for responding in a rather superficial and perhaps arrogant way to his critics as he has yet again relied on the argument that engaging with his critics is “boring or what?”  

What surprises me about this line of argument is that if Dr. Kahn-Harris finds that being on the Action for ME National ME Observatory Steering Group is so boring and that as a result of members of the ME community trying to engage with him about its work and his role as an Action for ME “ambassador” for the Observatory which has landed him in the kind of internet wars that he so dislikes and does not want to be dragged into, that he has not taken the logical “or what” option of resigning. 

Perhaps Dr. Kahn-Harris has been all too content to let his critical and analytical faculties lie fallow on the subject of the Observatory’s work and the way this work is conducted as well as the nature of the work and the biopsychosocial bias that pervades it, as I suspect he does not read the reports that are sent to him, and that he does not actually attend many of the actual meetings.  

If so, it would not be surprising that he does not consider that asking Action for ME or the Observatory for any information or material about the actual genesis and set up of the Observatory and its 6 research projects would be worthwhile, as I did. Action for ME and the Observatory refused point blank and I then made a formal Freedom of Information Act request to the Lotteries Board.  

Action for ME did not want any lay people involved in the Observatory at all, and it was only pressure from the Lotteries Board that forced them into setting up the Steering Group, and this is why Dr. Kahn-Harris and others were recruited in a process that he has admitted was not a particularly fair or open one.

It is therefore is not surprising that Action for ME sidelined the Steering Group and reduced the Reference Group which was meant to be an extension of the Steering Group to a tokenistic list of names. 

Dr. Kahn-Harris claims he does not share the biopsychosocial paradigm of ME with Action for ME or hold it himself personally, then how can he support a Patient Questionnaire used in the epidemiological research conducted by the Observatory that asks questions about whether a person was “happy” and “active” at Primary School, Secondary School, College or University, at work, and 6 months before developing “chronic fatigue” or “the tiredness symptom” when this questionnaire was designed as a primary tool to diagnose ME patients? 

The researchers involved in the Observatory are either those who do hold a well known biopsychosocial view of ME like Prof. Peter Campion or have published on the subject of “fatigue” or “chronic fatigue” brought about by many things but not ME, or they have not published about ME.

This is why the Patient Questionnaire is set out the way it is as it only permits the space for a patient to write in 2 other symptoms other than “the tiredness symptom”. 

ME is a complex multi-system neurological disease as defined by the World Health Organisation at G93.3 in the International Classification of Diseases, ICD 10.

 Therefore it is not some kind of longer term “fatigue state” or “fatigue condition” which arises out of being unhappy or inactive due to depression in childhood, adolescence or later in life. It is quite clear from the way that this Patient Questionnaire is set out and from the background and supporting documentation that the researchers consider that factors such as lack of activity and low mood, or anxiousness are essential precursors and predisposing factors for the development of “the tiredness symptom” which they call chronic fatigue which is the kind of biopsychosocial illness that they are indeed researching.

They also consider that these mental health factors and others make up their version of what they consider ME to be, some kind of protracted fatigue state which is indeed a biopsychosocial model of ME with very little biological involvement. 

This is simply one example taken from only 1 of the 6 Observatory research project, but I think I have made the point. There are a very great many more such examples I could give and can set out if required for each and every one of the 6 Observatory research projects. 

Sally Crowe of the Prime Project which has been much criticised by the ME community for its psychological and psychiatric bias sits on the Observatory Steering Group and she is on record as pushing the use of the Patient Questionnaire as a means of diagnosing ME for the selection of research subjects for all the Observatory’s 6 research projects and as a means of being able to recruit from a broader range of patients who would in her view “be more representative” of patients as a whole.

This again clearly establishes the biopsychosocial credentials of the Observatory as the intention was, and is, to water down the inclusion criteria to such an extent that just about anybody with any kind of tiredness can be a part of research which was designed to find out about ME, not about tiredness.

Therefore the results of the research will not be relevant to ME, but to general tiredness within the general population as opposed to finding out about the epidemiological nature of ME and how having affects the lives of ME sufferers and carers which was what the Observatory was paid to research.

 It is the Trustees of Action for ME who are responsible for the Observatory and for the conduct of the Action for ME Chief Executive and the Observatory Chief of staff who report to Steering Group meetings to administer the affairs of the Observatory.

Therefore Dr. Kahn-Harris’s membership of this Steering Group does “ally” him to Action for ME as I have stated. He is also allied to Action for ME politically through his uncritical support of both Action for ME and the way in which the Observatory goes about its work with over £1/2 Million of public money as he has taken upon himself the role of an “ambassador” for the Observatory’s work, thus allying himself with it personally.

 It has so often been discussed on the very internet lists and websites that Dr. Kahn-Harris detests that the ME community is characterised by the lions of ME sufferers and carers who have the courage to speak out against an unjust system in order to do what they little they can as individuals in order to change the status quo, being led by the donkeys of the ME charities who are basically content with the status quo.

 One of the chief reasons why this situation has arisen is that those in power within the charities are those who select others like themselves to become part of the ruling cliques that make up the Boards of Trustees of Action for ME and the other ME charities. Anyone with new or different ideas to those in power is simply not appointed or if they are, then they are disposed of as quickly as possible by the ruling clique.

These methods are also used by the staff and Trustees of ME charities to select and reject candidates for such committees as the Action for ME National ME Observatory. 

Therefore in terms of the paradigms of Marxist politics anyone who wants to serve on such a committee as the Steering Group must be someone who wants to queue up to manage the system, rather than someone who actually wants to change the system.

 This is perhaps why Dr. Kahn-Harris does not actually want Action for ME to operate in an open, honest and democratic way and listen to its membership, or even have a say in what the charities policies are or vote in a Board of Trustees as these issues are unimportant to him as he may consider that this sort of activity would be frowned on and may prevent him from achieving a measure of success through the old boy networks that dominate the Action for ME appointments system. 

Given the fact that Dr. Kahn-Harris has published articles in the major newspapers which reflect a rather biopsychosocial perspective on ME, I wonder if he is engaging in a PR exercise or whether he really might be experiencing some kind of epiphany, but I won’t be holding my breath on this one as it is evident that he placed his membership of the Steering Group on his CV presumably because he considers that it will do his career good even if he is “collaborating” with an organisation like Action for ME and their Observatory.  

Perhaps the reason why Dr. Kahn-Harris dislikes ME internet lists and websites so much that he rails against them is because he wants to be rid of them so he can rid himself of the voice of his own conscience when it says to him that it would be better to be courageous lion rather than just another beast of burden as an Action for ME donkey?  

Ciaran Farrell said:



Sun, 2009-01-11 22:24

I have read the comments made by other contributors to this site, and I think that in view of that I ought to set out a few things that would make my discussion with Dr. Kahn-Harris and took place in context the comments I made on the original article.

 I was originally appointed to the Action for ME National ME Observatory Reference Group largely because Action for ME, AfME, thought that if they did not do so I might make a fuss. Some candidates for the Steering Group were appointed on the basis of a brief telephone conversation with the then chairperson of AfME, Trish Taylor, who then required a simple confirmation that the individual wanted to be part of the Steering Group. Others like myself we toured around a number of hurdles including having to provide three CVs and a substantial amount of paperwork, which caused me to have a relapse of my ME as AfME placed extremely tight deadlines on the production of the paperwork concerned.

There was no agreed processes or procedures for making these appointments, and there was no structure by which and through which the Observatory had any form of existence beyond the borders and boundaries of AfME, whatever those borders and boundaries maybe. AfME then moved the goalposts and changed radically the roles of the Steering and Reference Groups sidelining them and managing the Observatory through a Management Group of AfME staff and relating to the researchers directly without the involvement of the other two groups.

I had asked the chief executive of AfME, Sir Peter Spencer the obvious question when I was appointed, which was how are these groups going to conduct their business, and he wrote back to me by e-mail setting out what he considered to be a modus operandi which he considered to be a policy for the operation of the Steering and reference Groups.

When he moved the goalposts he denied he ever written such an e-mail and accused me of lying about it. The way in which Sir Peter wanted to organise the work of the Steering and Reference groups was both illogical and unworkable. The job of the Reference Group was to advise the Steering Group about various matters with prior to Steering Group meetings, but the Reference Group were not permitted to do this because the Reference Group were not provided with any point of contact through which the advice could be channelled, or even permitted to know how they ought to conduct their job of advising the Steering Group, or even who was on the Steering Group. In addition, the Reference Group were not even allowed copies of the Steering Group of minutes because Sir Peter considered them to be confidential. 

None of the lay people involved in the Observatory whose job it was to monitor the progress and budget of the Observatory to ensure that the Observatory represented good value for public money in relation to the contract between AfME, the Observatory and its researchers and the Big Lottery Fund were permitted to have a copy of the contract that ought to be used as their principal monitoring tool.

The fundamental description of the six research projects conducted by the Observatory and the original budgets together with detailed plans of research activities to be undertaken within detailed timescales we denied by AfME to members of both the Steering and Reference Groups. These groups were simply to receive reports from the researchers, and to acknowledge that they had done so, and they were told in no uncertain terms that the only positive comments would be acceptable because no negativity would be tolerated, it became clear that Sir Peter was engaged in a political strategy of marginalisation, and that he was not interested in the administrative workings logical or otherwise of the Steering and Reference Groups. 

This meant that the Big Lottery Fund who had awarded over half £1 million of public money to the Observatory could not effectively monitor the project on the ground, as they were relying on the Steering and Reference Groups to do so. The monitoring reports that were received by members of both groups could not be understood since they related to various tables and criteria which were not in our possession. The monitoring reports were in the form of various grids or tables which contains information for example, “ Deliverable A maybe weak and may require further work”.

 It is not possible to make any value judgements as to whether or not this is a cause for concern, or what one should be concerned about without knowing what deliverable A is, why it is weak, and what further work is proposed. When I complained about this and contacted the Big Lottery Fund with my concern that AfME had effectively marginalised the Steering Group and completely tokenised the Reference Group they contacted AfME and told them of my concerns.

 This made me a marked man as far as AfME and the Observatory were concerned, so when I raised further concerns about the quality of research work being conducted by the Observatory and the biopsychosocial bias of the Observatory research projects as well as the inexperience of the researchers together with AfME’s own inexperience at running and managing such research projects, Sir Peter Spencer simply removed me from my post. He did this in a particularly nasty way by trying to bully me into resigning, but this is not the point. The point here is that by so bullying me he made it abundantly clear what he expected of what he termed to be members of his team, and so those who remained team members were those who were only prepared to say something nice, or not say anything at all, thus reducing their input to zero or nearly zero, or false praise designed to win plaudits from AfME and the Observatory. 

The big lottery fund were completely unaware of the psychological versus physical debate within the world of ME, and they were all so unaware of AfME’s past record as well and AfME’s support for the biopsyscosocial model of ME, and AfME’s lack of democratic credentials. 

The dossier that is referred to in the original article I have reason to believe is the Internet campaign group One Click’s dossier of concerns about AfME in relation to AfME’s lack of democratic credentials and psychological and psychiatric bias against ME as a purely physical disease.

 I provided a copy of this document to the Big Lottery Fund as evidence of the concern with in the ME community about AfME. I find it interesting to note that the criticisms I made of the Observatory, for which I was removed from my post by Sir Peter Spencer, echoed the concerns of the original scientific and academic referees appointed by the Big Lottery Fund to independently assess whether or not the Lotteries Board would fund the Observatory.

The Lotteries Board overrode a recommendation from their internal expert committee not to fund the Observatory, citing the shortcomings identified in the independent assessors reports. AfME refused to make public a list of the researchers involved in the Observatory, and they also refused to make public the list of Steering Group and Reference Group Members, claiming that since they had published some of the names concerned in their internal members magazine that this was all anyone needed to know, but they did not publish many of the names of the researchers and simply refused to acknowledge that their members had a right to know who was working for the Observatory either as a paid researcher or administrator, or as a voluntary lay member of any form of advisory body connected with the Observatory. 

Some of the names of those who were involved in the Observatory had already entered the public domain via press releases through our youth are some of the participating universities who were engaged in Observatory research work, or through AfME press releases, but neither AfME nor the Observatory would confirm or deny whether these researchers were actually involved in research work, and what research work they were involved in. 

Dr. Kahn-Harris was one of the names of Steering Group members published in AfME’s members magazine, so other members of AfME knew that he was involved in the Observatory, even if AfME and the Observatory refused to provide their members with any information, or any meaningful information about the Observatory and its work, and who comprised the Observatory, and how the Observatory might improve the lot of ME sufferers and carers, or why indeed AfME had chosen to set up the Observatory at all.

AfME claimed that they had carried out a survey of their membership which indicated to them that they ought to do more research work, and they took this as their licence to set up the Observatory in the name of their membership, but not to tell their membership anything about the Observatory. 

The specific reference to MEagenda within the original article centres around a discussion between Dr. khan-Harris and a member of the ME community who has a blog on which she comments on issues pertinent to the ME community in which Dr. Kahn-Harris does not consider that there is any reason to accept that there is any right to know who is involved in the Observatory on the basis that those who are on the Steering and Reference Groups as well and as AfME and the Observatory are responsible for the spending of public money, and so should be publicly accountable.

The Observatory has no public point of contact and so it is not possible for anyone to contact the Observatory except through AfME, and when they do so, they are referred to the chief of the Observatory staff, who simply does not respond. 

MEagenda successfully put her case with which I agree,  that there is a public right to know these things, and that the members of various steering groups ought to be publicly accountable to the community from which they are drawn, and who I presume they are meant to serve, as they are responsible for spending public money for the common good.

What this amounts to is that if individuals like Dr. Kahn-Harris are appointed to these committees than they take on a public responsibility for the spending of public money, and therefore they should expect to be publicly accountable for their actions.

Over the years I have served on many such committees and I have always accepted that there ought to be public scrutiny of my actions and that of the committee on which I serve, but also that there ought to be proper for and public consultation about the way these committees are set up, and who has a seat on them. 

Dr. Khan-Harris initially denied he had anything to do with the steering group, and then prevaricated and obfuscated on the matter declaring it was unimportant and that it constituted the “minutiae” that is referred to in the original article. 

The reference to the Peterborough support group contained in the original article concerned a debate between myself and the organiser of a public meeting which took place on 15 May 2008 as to whether or not there is a public right to know, about what happened at a public meeting, and whether the public have a right to have a written or an audio copy of the proceedings of that meeting. 

This matter is neither so dense nor so complex as the authors of the original article have made it out to be, it is simply a dispute about what is, and what is not in the public interest, and therefore what is in the interests of the ME community, just as it was a debate about the public interest of the ME community which was the central point of the dispute between Dr. Kahn- Harris and MEagenda. 

Once these facts contained within the above analysis is read by those on this “ open democracy” site and inwardly digested by them, the original article takes on a whole new meaning. 

Despite the “ open democracy” name of the site on which the original article was placed it can now be seen that one of the authors, Dr. Kahn-Harris has been engaging in some rather disingenuous conduct in that he has claimed the moral high ground of speaking from a platform of being open and democratic, when his actions belie his words in that in all the specific instances referred to in his original article he was not a friend of either openness or democracy, because he was in reality the enemy of openness and democracy, and his guilt is written in his actions. 

Therefore the truth is not as has been portrayed in the original article at all, as the original article is simply a whinge piece tacked onto an arrogant, patronising, and academically naive analysis of the situation in Gaza which makes false reference and analogy to the situation experienced on ME Internet lists by one of the authors who was justly criticised in the past over issues and conduct in which he was found woefully inadequate.

kkahnharris said:



Tue, 2009-01-13 20:30

Ciaran, do you really think that most people who visit this site will read this and your previous comments through fully? Do you think they will have any understanding of what you are referring to? Do you think you have convinced anyone?

Let us assume that you are right about everything. You could have achieved far more in a short, to the point post than in 2 massive posts like this. 

This is what I meant in the article about solipsistic politics that refers only to itself. 

Orson Unwells (not verified) said:



Wed, 2009-01-21 07:13

"You could have achieved far more in a short, to the point post than in 2 massive posts like this."

Says the man who takes an article of a 1000 odd words to say what is (tritely) sayable in 100.

Once again you are not engaging with the issues but dismissing them as "micro politics", and obfuscating your obfuscation by criticising form rather than content.You are bending over backwards to "not take sides" with the ME community, but criticise it from your privileged place of being "outside" (or above?)

More people with ME will end up dead due to them becoming more and more sidelined or abused by AfME's current policy of promoting dangerously inappropriate therapies for people with non-ME fatigue states and a dangerously inappriate psychosocial model of ME, clinics, services and guidelines.

And I don't know if you've ever heard of "cognitive dysfunction" but the brain injury in ME makes succinctness difficult due to word-finding etc problems.

Lots of what Ciaran is saying seems news to you, so its just as well its being said.

Ciaran Farrell said:



Wed, 2009-01-14 00:59

Keith,

 I note that yet again you are not prepared to engage in any form of serious debate of serious matters.

This has been the case in the past and it is why you have been so badly criticised in your past encounters with members of the ME community which you are complaining about in your article. 

I note also that your tactic has again been to pour scorn and ridicule on the matter by posing some rather sarcastically phased rhetorical questions. I had hoped that you might have learned from your previous experience that it would be far better to engage in a serious debate, but you are clearly not going to do so. 

You have completely misunderstood and misrepresented what I have written, and why I wrote it, and you and your co-author have completely misunderstood and misrepresented the ME Internet debate which took place and is taking place on a continual basis within the ME community Online.

 The reason why a detailed set of postings were necessary was to make clear to readers of the “Open Democracy” site the specific background to the issues you and your co-author are using to form your central thesis from.

Those specific issues were ones in which you played a part,  but you hid your involvement in those matters from the reader therefore constructing an entire political psychology or pathology of the ME community Online on the basis of being a disingenuous narrator of the events that you claimed to be only an impartial observer of.  

The point being that the thesis you and your co-author constructed was based on examples that do not prove your case at all, they detract from it to the extent that the entire structure you created has no validity, and that is my thesis which I needed to set out. 

Most importantly you claimed to be acting in the interests of openness and democracy, whereas your agenda was to use the platform of openness and democracy to speak against openness and democracy from the position that you had placed yourself above such suspicion by speaking from the platform you spoke from thereby denigrating the principals of openness and democracy. 

If I had simply said the above, and only the above or even more pithy words to convey the same meaning people would have read what I said and most likely they would have asked themselves what basis I had for making such statements, as I had not provided any account of why I had come to the conclusions I had expressed. They might also have wanted to know what evidence there was to back up my statements. 

The long postings were necessary to set out some of the background to events and to provide some of the evidence and reasoned argument from which these conclusions can be drawn as I have done. 

You told me about 14 months ago that you had had very little if any real experience on ME Internet Lists and that you were not really interested in them. I encouraged you to get involved and I have watched your progress since that time and the encounters you have had with people in the ME community Online including myself. 

You have been blinded by what you perceive as the narrowness of the minds of others when you have seen the Internet discussion of specific topics between a specific set of individuals, but you have failed miserably to observe that this discussion takes place out of a shared though disputed past history common to them, but which you have not been a part of due to your own lack of experience and engagement with the ME community Online. 

You are also wrong to think that I do not know about your buzz word ‘Solipsism’ as I have studied philosophy so I know it is the school of thought that expounds "My mind is the only thing that I know exists." This effectively creates a dichotomy between what is inside “the mind” which can be judged to be part of the existence of the mind that knows of its own existence, therefore the contents of the mind must exist, and an external reality that is not perceived by the mind as part of its own existence so any reality that is external to “the mind” cannot exist. 

In ordinary practical everyday terms this comes down to ‘if I refuse to engage with or acknowledge another person’s reality, or the reality another person is trying to tell me about, then I safely ignore the other person because their reality simply does not exist in my world unless I decide to give it houseroom in my mind, therefore I can continue to pursue my own agenda’. 

This mindset is indeed responsible for many of the problems within a very great many communities, the ME community Online included because it is the rationale that certain individuals have used to drive their own personal agenda through at all costs and not count the cost of the collateral damage they cause by doing so. 

What I am trying to point out to you, but you are refusing to take seriously or engage with me about is that the answer to the problems such individual cause is not to be found in behaving in the same way as they do and pursue your own personal agenda to the ME community’s detriment, and should you decide not to heed my advice, then you can expect to be criticized for refusing to listen to the views of others, being arrogant, self serving and preaching from a rather hypocritical bible of being holier than thou. 

This has certainly been the case with your encounters with the ME community Online, but it has come about because you have brought this on yourself through the way in which you have interacted with others, and you have blamed other people for your own personal faults and failings which you have written up in your article as if you were the victim of the bad behavior of others, when this is simply not the case. 

You have then built up an entire psycho-political patho-physiology of the ME community Online which does not reflect the way the ME community Online actually is, but reflects your projection of your own modus operandi towards other people who hold views you do not agree with onto the ME community Online. 

Therefore what I am saying to you is that if you want to see an ME community online that is less divided, do not act in a divisive way and proclaim that you are the victim of the divisiveness of others, take responsibility for your own actions and engage with others as equals in a more constructive way instead of undermining the efforts of others who are actually trying to build a consensus around certain issues.

kkahnharris said:



Wed, 2009-01-14 20:46

Ciaran

What this article was trying to do was to draw attention to a way of debating and arguing that I believe to be unhelpful.In all my dealings with you and others allied to you, my issue has never been what you argue but how you argue. I agree with some of the issues that you are campaigning about and I disagree with others. However, I believe that the way you approach these matters is profoundly counter-productive.

While I appreciate the danger that (as another commenter pointed out) the article could be read as patronising and anti-democratic, I am not criticising the democratisation of politics in the internet age. Again, I am criticising how politics is all too often being done.

 

Ciaran Farrell said:



Thu, 2009-01-15 00:17

                 Keith,                              

                             Despite your denial you are indeed criticising the democratisation of politics on the Internet because you are falsely using what you consider to be the sins of the ME community Online to do so, because you simply do not believe that those in authority ought to be open, honest, transparent or accountable to those they serve.

Therefore you are in reality using the old right wing tactic of arguing that democracy does not work as it leads to division, discord, waste and inefficiency so that you can write an opinion piece which very strongly suggests that the way out of such a predicament is to be overcome by the imposition of authority because only through this means will all the squabbling and bickering voices as you perceive them will fall silent through self censorship before the powers that be take action to restore order.

Therefore your article is a vehicle for the right wing agenda of brining democracy into disrepute in order to pave the way for the acceptance of an authoritarian regime which would take the place of  an open and democratic one.    

Your debate with the ME community in which you cite MEagenda principally centres around three issues, firstly that you backed the Action for ME line that the names of the Action for ME National ME Observatory Steering Group, of which you are a member, must not be made public as you do not consider that the public and therefore the ME community Online or anyone has a right to know how Action for ME is spending over £1/2 Million of public Lottery Board money. You also did not consider that the public and therefore the ME community has any right to hold you or Action for ME or the Observatory to account over the way in which this public money is spent on 6 research projects in which the ME community and Action for ME members have had no say.  

You proclaimed that Action for ME and the Observatory are carrying out the right kind of research work, and you have placed the fact that you hold a position on the Steering Group on your CV, but you are not willing to discuss the work of the Observatory or the kind of research work the Observatory is conducting, or how the Observatory is conducting its research work.

In doing so by your very own statements you considered yourself to be an “ambassador” for Action for ME and praised up the work of the Observatory, but again you refused to discuss the Observatory’s work or to be held in any way accountable for the work of the Observatory.  

This quite clearly shows that you were not acting in an open, honest or accountable or a democratic way.  In the article you did not declare your interest, although you subsequently unfledged that you should have done.  

The second issue pretty much arises out of the first in that you have backed Action for ME against its critics from the basis of ignorance of the issues which have genuinely been debated many times over the years about Action for ME, their lack of transparency and accountability and their lack of democracy and their psychological bias in the way in which the regard ME.   

Therefore you have not only failed to research the issues before you have dismissed what you see as ridiculous bickering and nit picking without even bothering to find out about what the issues are or why they were debated in the way they were on the Internet, you have failed to actually weigh the actually evidence in the balance and then decide matters based upon the evidence.

The One Click document “The AFME Dossier 2004” is a serious evidenced based document which raises serious issues about the operation of Action for ME in relation to the charity denying members their legal rights to attend an Annual General Meeting to determine policy and to elect a Board of Trustees as set out in its constitution.   

Thus the democratic deficit problem which is the chief reason why Action for ME is justifiably criticised.   

 The Dossier 2004 was an updated version of a previous document that dealt with this democratic deficit and the legal issues surrounding it. Both documents deal with a catalogue of instances in which Action for ME has acted against the interests of its members by pursuing a pro psychological / psychiatric line in its dealings with Government and the NHS to the detriment of Action for ME members. 

 I have researched this matter in some considerable detail and the legal fact of the matter is that Action for ME are operating outside the law by refusing to conduct the business of the charity in accordance with the Action for ME constitution, its Memoranda and Articles of Association.  

You told me over 14 moths ago that you did not really care about such things as constitutions and whether or not Action for ME obeyed the rules, as you considered that it was a non issue because all that was important to you was the realties of how the charity operated under those who were in charge of it.  

You missed the point then and you have continued to deliberately miss the point ever since, and that point is that because Action for ME does not abide by its constitution it has disenfranchised its members who are legally entitled to have a say on policy matters and to elect a Board of Trustees to run the charity on behalf of members.

The result of the fact that Action for ME makes policy decision behind closed doors without any input from its members, so Action for ME policy does not reflect what members want, it reflects only the personal views of the closed clique that runs Action for ME. Action for ME claims that it does not have members so they do not need to give their members their legal rights as members.

This is simply not constitutionally or legally true and Action for ME are acting in outside the law.  The issue for the ME community is what is to be done about it, and how the ME community who are members of Action for ME can get their voices heard by the charity.  

Therefore you have failed to ascertain the true facts of the matter and to represent the actual debate which has and which still does continue about Action for ME because you have not operated in an open, honest and transparent or democratic way in researching and investigating the actual issues.

You have simply sided with your own vested interests as being part of Action for ME by being a member of the Action for ME Observatory Steering Group.  

The result of your siding with your vested interest over the Action for ME issue is again that you have not acted in an open, honest or democratic way, and you have been criticised for this and for the deliberate misrepresentation of this matter in your article.  

The third issue centres around the fact that MEagenda put up on her blog certain material relating to the 15th of May public Open Forum meeting and this relates to the first issue in that it again relates to a public right to know about the proceedings of a public meeting which was convened for the ME community as a public meeting in order that the ME community might discuss certain issues at a public meeting.

The organiser of this meeting the person you refer to as the Chair of the Peterborough support ground then decide that she did not want to make public the proceedings of that public meeting. 

 That was what the debate was about, whether the ME community as a stakeholder in a meeting organised supposedly by the ME community for the ME community had a right to know what went on at a meeting organised in their name as a public interest matter.  

You do not know the background to this matter, and you have falsely misrepresented it in your article as another instance of what you do not like which is people arguing for a greater public openness and transparency and public accountability on the part of those you consider to be in authority because you are simply not in favour of openness, transparency, accountability and democracy.  

All three of the examples which you cite in your article upon which you have built your case simply do not establish why you have made them out to prove, and that together with the specious arguments is why your article gives a false and misleading account of your involvement with the ME community Online and why your article is fundamentally flawed and biased.

Anthony Barnett said:



Sun, 2009-01-11 15:23

Keith asks: "A message to readers who know nothing of ME (assuming they are still reading) - is this exchange boring or what? Part of the point of the article was that these kinds of e-wars do nothing to help public comprehension of complex issues."

I am very glad you have entered the comments to defend and clarify your co-authored article. (When I asked a question about the use of the term "left" in an article also co-authored by my colleague David Hayes and Andrew Dobson, I was disappointed not to get a reply. )

You complain about CiF. But one of the problems with CiF is that many of its authors take a traditional journalist's view and don't come into the forums, where their presence (in my experience from OurKingdom - or even better see Liberal Conspiracy) calms comments and makes contributions more reasonable and engaged.
How can you demand that comments stick to the article and its argument if its author won't ever enter to clarify reasonable points? At other times he or she can leave it to others - it does not have to be endless.

To answer your specific question, I was surprised and interested to see the point about your 'interest' in ME. This  gives your article added authority - and your reply seemed dignified and fair (although I think that maybe you should have agreed that you should have told the reader of your interest).

I skim comments, as I do many articles on the web, and here it seems to me they are engaged. If I want to know more, I can. If I don't, I needn't. But an argument is being made here and there seems to be a degree reciprocity, rather than just accusation, exaggeration and 'whataboutism'. A term I have just learnt to use. For me the key is "engagement". Sometimes this will be specialist, or on a particular point (as Tony says eloquently in his comment). Sometimes it will raise the game and widen the debate. The authors can do a lot to help this happen - as you just have, I would not have commented unless you had asked your question.

PS: I wrote about this in a recent OurKingdom exchange after I posted a little memoir on Harold Pinter. Someone wrote a rude comment saying he was fascist. I deleted it and noted:
"I have deleted a post that was simply rude, personal and vile. In OurKingdom, we want comments that engage in some way or other. If they are just going to be ad hominem they must at least be witty. Posters that simply want to show off that they can throw dirt can do so on their own blogs."
This then led to a vigorous exchange with 'Owly' which I think established an authoritative tone on both sides. These small spats can have consequences, like the letters pages of the TLS or the NYRB, which shape future arguments.

kkahnharris said:



Sun, 2009-01-11 16:28

I take your point that authors should enter comments threads (something I won't be able to do much over the next day or so as I am away). I certainly do when I author pieces on CiF - and I have always been encouraged to do so by CiF editors. I am a fan of CiF in the sense that there is some superb writing on it. The problem is that on some topics the debates get so circular and entrenched that the actual article seems almost besides the point. This is not the  case on all topics. My last piece for CiF was on whether musicians should earn money and this generated an excellent and productive comments thread. Pieces on Israel though tend to degenerate fast.

I don't want to give the impression that I am obsessed with CiF comment threads. All the phenomena that the article deals with are apparent in the blogosphere more generally.

opendemocracy said:



Sun, 2009-01-11 12:36
I agree with my colleague David and his co-author that there is something very attractive about:

"a context where intelligent citizens working in a spirit of constructive dialogue could in principle perform a useful role in clarifying issues and arguments and offering usable ideas to those seeking solutions to the conflicts concerned."

That is indeed an ideal for collective government. I wrote an article soon after my arrival at openDemocracy trying to clarify for myself what I thought openDemocracy was really about, The cheap talk challenge - what debate is really for? -- I think this is somewhere between what I described as the Rousseauist notion that debate is there to form a general will that is the basis for action and the Millian view that public intellectuals should settle the great questions of their time in open-minded conversation.

But the fact that we have neither Rousseau-ist politics nor a Millian intellectual class is not mainly about technology, I think. David and Keith write:

"What is needed is a political model that can begin to redress the rise of solipsistic micropolitics; one that emphasises connection, self-critique and cool, considered analysis. What is needed is a different kind of technology that retains the internet's openness to participation but without the tendency to push activists and driven individuals towards self-righteous isolation."

Their suggestion is that there is a problem in the fragementation of politics and the solution proposed is technological.

Of course, it is a good joke and fits well with the ME example to talk of micropolitics as being "solipsistic" -- but Keith and David don't, I think, mean it literally. All these micro-issues arise between real people and are about things that really matter to them. They are not debates with your self, even if they are often conversations with your self-selected similars. (Indeed, we often come across the "debates with self" sites --- these are flash-in-the-pan blogs or facebook groups that do not acquire a dynamic of their own and very quickly wither. But these graveyards of conversations are not what David and Keith are writing about).

The micro-politics we see on the web -- like the ME sites Keith and David write about, or the vaccine-denial site that was excellently covered by our then colleague Felix Cohen in a short film about The Health Ranger (it is the fourth film down on the page), or on one of my own favourite micro hang-outs, kiteforum.com -- is, for many of us, real and important politics. It may be misguided, idiotic, "boring" etc to outsiders. But it is ours. We care collectively about the world it pertains to.

This is not a defense of the content of any of these communities -- I would agree with Keith and David's judgment about many of them -- just a recognition that they are communities that have a value and a particularity that is clear when we live--at least in some fraction of our social selves--on the inside of them.

I suppose that I detect a note of nostalgia in the picture that Keith and David offer. Where are the good old days of real issues? Of serious activism for a nation, or a class or an institution? Of passionate debate in crowded rooms? Of political structures that could be inhabited, won or lost? Of a great chess-game combining tactics, politics, philosophy and camaraderie. I like the idea of this too, but know little of this except from online communities.

Indeed, I think the micro-politics of the micro-communities of the web are the one hope that a whole group of people has to rediscover the power of what-we-together do. More rootless than David (or Keith, I imagine), I and many others populate the long and lengthening tail of politics. Many of us have no single strong identity. Our overwhelming sense in the world of nations, classes, identities and activities is of being outsiders ... until we find the micro-political communities that speak to us and whose common projects we wish to join and help to form. Andrew Hagan has a very brilliant article in yesterday's Guardian on The age of indifference. The atomisation and destruction of politics he describes in England goes a long way back and has nothing to do with media technology. But given the context he describes, the point we have got to, web micro-politics should be celebrated. It may seem paltry to those who knew a politics outside the age of indifference, but these are promising seeds from which a collective sense can be reborn. Their "smallness" should not be a discouragement.

I think we should think of every web community as a nation, and if we want to be analytical about them, our model should be anthropological: to seek to speak to them from the inside, with the difficult combination of sympathy and distance this requires. Yes, though this would take a person of great patience and generosity to do it, even for a study of the tireless commenters on Comment is Free.

Tony

kkahnharris said:



Tue, 2009-01-13 21:48

People do indeed find identity and community in micro-political online worlds and this is not to be sneezed at. But its a terribly balkanised kind of identity and community. While I love the fact that the internet means that the 3 Slovenians who are fans of  Bolivian nose flute music can find each other, we all need to find ways of engaging with people we don't neccessarily agree with.

I take your point about the  O Hagen piece. I think that 'old style' politics is not something we should mourn, but it definitely offers models we should consider.

 

Orson Unwells (not verified) said:



Wed, 2009-01-21 06:35

"we all need to find ways of engaging with people we don't neccessarily agree with"

That worked SO well for Neville Chamberlain, didn't it.

You really have no clue why the Isreal-Palestine conflict is a poor analogy for the ME scandal -- if such a mild word as scandal suffices.

By engaging your presumably mean compromising. Can you explain how Sophia Mirza could have compromised with the view she was a psychosomatic patient who needed tough love? That she had but a physical "component" which was actually a "perpetuating factor"? Because that's fast becoming the prevailing view in the UK, the difference is that they haven't got round to coming for the rest of us severe folk yet and the mildeys like yourself are often either too naive, apathetic, co-opted or misdiagnosed to care. Most advocacy still comes from the severely affected.

In a war with a frontline the only peace is through negotiating compromise, but in an invasion the options are fewer, arguably the stakes higher.

You would have used Germany and Vichy France if you knew what you were talking about.

Why not get on board with the Resistance. Because it threatens your need for phatic identification with the well who need to keep the ill at arms length, and you wouldn't want to be tarred with the "extreme" brush as severe pwME are?

Peter Johnson said:



Tue, 2009-01-13 11:27

Tony, I agree with much of your post, but I don't share your optimism that micro-activity will lead to macro-communities that can similarly debate and form opinions about more widely shared concerns at the nation state level.  Without shared concerns, there can really be no national society.  Since we're not about to abolish the nation state, don't useful macro-communities need to reflect this?  If so, they have to decide who their members are in a way that parallels political realities but is anathema online.  Even if these groups can self-form, will they do so in sufficient numbers to fairly claim they are part of the political process?  Maybe that comes down to Anthony's good point about authors participating: does anyone know a website where serving ministers get into open-minded public conversation?

In terms of behaviour, the topic of the article, self-control and self-censorship are surely the only options.  The technology of the internet encourages haste and anonymity, which whilst they're not essential, make it easier to be rude (think lavatory-wall graffiti).  There must be a sense that standards may be imposed in the way Anthony describes.  If this about internet maturity, then perhaps there are grounds for hope.

Aside from good debate, any institution - a political party, company, choir, or sports team - and the society that supports it also depend on the emotional bonds acquired from doing things together. The atomisation of experience and consequent disruption of these emotional bonds, which the internet surely facilitates, separates debate from doing and is perhaps a key obstacle to rebuilding macro-communities.  Maybe people should just get out more.

Tony Curzon Price said:



Thu, 2009-01-22 20:53

Peter, As often with your posts, I find myself nodding vehemently and
then wondering why there is a disagreement. Here, it was until I got to
your opposition of "doing things together" versus the online existence
that I agreed. My point is that i think atomisation has happened
independently of technology, and that the internet has a role in
precisely a rediscovery of what it is to "do things together". It is a
technology for making "imagined communities", and, at least for us
children of Thatcher, these are most of what we really know.

Tony

Orson Unwells (not verified) said:



Wed, 2009-01-21 06:59

"The technology of the internet encourages haste and anonymity, which whilst they're not essential, make it easier to be rude (think lavatory-wall graffiti). There must be a sense that standards may be imposed in the way"

What EVIDENCE do you have that the majority, or any significance of internet discussion by those with ME fits this depiction? Yet by way of an exemplar of ME that's what the article implies. It couldn't be further from the truth.

Since most ME discussion takes place on closed mailing lists I am not convinced Khan or yourself would have much experience of them.

I don't really see what lavatory wall graffitti has to do with advocacy and politics, which I thought were the subject of scrutiny. You really need to frequent better web sites!

Anonymity can be an important way to circumvent censorship in regimes where people have little or no free speech. And open web sites like this are like using unlocked post boxes. The sometimes arrogance of identification is not necessarily a recommendation, when the message can be more important than the messenger.

Some health professionals who advocate for ME can only do so with a pseudonym or they will lose their position.

Ciaran Farrell said:



Sat, 2009-01-10 19:36

I find it highly ironic that Keith Kahn-Harris should be a co-author of this article on this “open Democracy” site and that he and his co-author should spend so much time and so many words for Keith Kahn-Harris not to declare his interest as a member of the Action for ME National ME Observatory Project Steering Group which is engaging in biopsychosocial research into ME as a predominantly psychological and sociological designer illness which has only a small physical component.

 Keith Kahn-Harris is responsible for the oversight of the spending of over £1/2 Million of public Lottery Fund money on 6 research projects on behalf of Action for ME. This quite clearly makes Keith Kahn-Harris part of Action for ME and allied to Action for ME’s Trustees who refuse to hold AGMs of the charity so that ordinary members of the charity, Like myself,  cannot vote on policy issues and elect a Board of Trustees who will run the charity in a democratic way. 

Keith Kahn-Harris has defended Action for ME by being an apologist for Action for ME and their lack of openness, transparency and democratic accountability on the basis that Action for ME is no worse than other charities in his experience, but how well does he know the charity sector in order to judge this one may very well ask, and even if this were true, is this an acceptable argument for the denial of Action for ME members’ democratic rights?  

I have well over 20 years experience of the charity and voluntary sector and I am appalled by Action for ME’s lack of democracy and their refusal to listen to the views of their membership and I think it is rather hypocritical of  Keith Kahn-Harris to claim the moral high ground of democracy against his critics when he himself has been responsible for backing the anti democratic practices of Action for ME against his critics and that by doing so he has come in for some criticism, and I think he ought to come clean about that.  

Both authors see the operation of a great many paradigms which they describe in their article, but they have forgotten the one called “disability” brought about by the profound consequences of suffering from ME or of being a primary carer for someone with ME which renders people housebound or virtually housebound, and that is why so much campaigning is done by isolated individuals working on their computers from home. Perhaps this is because Keith Kahn-Harris and presumably his co-author are pretty mobile and therefore they did not consider the plight of housebound sufferers and carers for it ever to have entered into their analysis.

 I really don’t think the rather tortuous analogy between the situation in Gaza and ME does any justice to either set of highly complex issues, however if one is to use the themes of modern war and music as well as left wing politics which I have reason to believe may be to the authors taste, I consider that the words of John Lennon, suitably adapted would suffice to put the case for myself and other critics of Keith Kahn-Harris, ‘all we are saying, is give democracy a chance’.

 

kkahnharris said:



Sat, 2009-01-10 20:43

I am left in something of a quandry by this comment. I know that if I respond there is a danger of being dragged into precisely the kind of argument that the article was criticising. Yet there are things said in this comment that I am unable to leave unchallenged. I will respond very briefly:

- Although arguably I should have declared an interest as a member of the National ME Observatory Project Steering Group, the project is not engaging in 'biopsychosocial research into ME as a predominantly psychological and sociological designer illness which has only a small physical component'. It is engaging in social research on the needs and experiences of people with ME. I do not hold to the biopsychosical paradigm.

- I am not 'part of Action for ME and allied to Action for ME’s Trustees'. I am a paid up member of Action for ME and I am a member of the ME Observatory Steering Group. I do not represent Action for ME nor do I approve of everything it does. I am collaborating with them on a particular project.

- The comment that I 'did not consider the plight of housebound sufferers and carers' is hurtful. For one thing, I am housebound on occasions. More importantly, my best friend is housebound with severe ME and it has been extremely traumatic watching him suffer. I do though take the point that the internet may be the only involvment in ME politics for the housebound.

A message to readers who know nothing of ME (assuming they are still reading) - is this exchange boring or what? Part of the point of the article was that these kinds of e-wars do nothing to help public comprehension of complex issues.

Ciaran Farrell (not verified) said:



Sat, 2009-01-10 19:21

I find it highly ironic that Keith Kahn-Harris should be a co-author of this article on this “open Democracy” site and that he and his co-author should spend so much time and so many words for Keith Kahn-Harris not to declare his interest as a member of the Action for ME National ME Observatory Project Steering Group which is engaging in biopsychosocial research into ME as a predominantly psychological and sociological designer illness which has only a small physical component.

Keith Kahn-Harris is responsible for the oversight of the spending of over £1/2 Million of public Lottery Fund money on 6 research projects on behalf of Action for ME. This quite clearly makes Keith Kahn-Harris part of Action for ME and allied to Action for ME’s Trustees who refuse to hold AGMs of the charity so that ordinary members of the charity. Like myself cannot vote on policy issues and elect a Board of Trustees who will run the charity in a democratic way.

Keith Kahn-Harris has defended Action for ME by being an apologist for Action for ME and their lack of openness, transparency and democratic accountability on the basis that Action for ME is no worse than other charities in his experience, but how well does he know the charity sector in order to judge this one may very well ask, and even if this were true, is this an acceptable argument for the denial of Action for ME members’ democratic rights?

I have well over 20 years experience of the charity and voluntary sector and I am appalled by Action for ME’s lack of democracy and their refusal to listen to the views of their membership and I think it is rather hypocritical of Keith Kahn-Harris to claim the moral high ground of democracy against his critics when he himself has been responsible for backing the anti democratic practices of Action for ME against his critics and that by doing so he has come in for some criticism, and I think he ought to come clean about that.

Both authors see the operation of a great many paradigms which they describe in their article, but they have forgotten the one called “disability” brought about by the profound consequences of suffering from ME or of being a primary carer for someone with ME which renders people housebound or virtually housebound, and that is why so much campaigning is done by isolated individuals working on their computers from home. Perhaps this is because Keith Kahn-Harris and presumably his co-author are pretty mobile and therefore they did not consider the plight of housebound sufferers and carers for it ever to have entered into their analysis.

I really don’t think the rather tortuous analogy between the situation in Gaza and ME does any justice to either set of highly complex issues, however if one is to use the themes of modern war and music as well as left wing politics which I have reason to believe may be to the authors taste, I consider that the words of John Lennon, suitably adapted would suffice to put the case for myself and other critics of Keith Kahn-Harris, ‘all we are saying, is give democracy a chance’.

englishman said:



Fri, 2009-01-09 23:32

Whilst discussion on forums can reveal ignorance and a propensity for individuals to simply reinforce their own prejudices, the discussions also force these individuals to research the subject under discussion, sometimes to a great extent. The only way to have anything approaching a true democracy is to have a well informed populous. Gaining information and knowledge, even in defence of one's ego, is better than ignorance or in simply accepting what one maybe told by someone who claims to be a knowledgable source. I think the discussions in forums reveal that there is not simply one point of view on any subject and, when it comes to key world events, it would seem to be better that more people gain a deeper understanding by having their viewpoint challenged. I don't think this is ever intended to be a spectator sport but to be primarily for the players. I also think most people's opinions do get modified by discussion even if they don't always reveal this to their opponents.

The criticism of these discussions shown in this essay reveal, not the professed modesty of the writers, but profound elitism. All this whilst accusing the forums' contributors of being self-centred or arrogant, maybe as a device to deter any self-defensive response, in the same way as the comment in the last paragraph-but-one about actually not allowing comments in response (like this one).

The ability to discuss and debate issued as varied as the Middle East (and also ME - ho ho) are usually empowering and enlightening to most who take part. The Middle East is discussed predominantly because it is probably the most important area in world politics and the Israel-Palestinian conflict the fundamental cause of much of the unrest in the region.

The internet forums allow people to question and debate the news they receive on this, and other issues, and by doing so learn more about the subject. The authors complain that the web discussions alienate the non-involved but, in a somewhat contradictory manner, agree that the people involved do have knowledge of the "minutae" of the conflict, which deters others from participating. This may well be the case, and it is also true that the discussions often polarise rather than converge on what may be a more constructive dialogue. This is perhaps an unfortunate consequence of the nature of forumsthat they are often combative, but then if it were easy the solve world problems by simply having a constructive debate, it would have been done already.

 

kkahnharris said:



Sat, 2009-01-10 20:46

I do accept that there is a danger of elitism in the article. I also accept that there is nothing wrong having well-informed people who passionately care about particular issues. The problem is though that the kind of minute debates that often dominate the internet, the larger issues often disappear from sight.

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