open Democracy News Analysis - The politics of ME, ME, ME, Keith Kahn-Harris David Hayes - Comments

jackfish on "The politics of ME, ME, ME"

jackfish — Mon, 30 Mar 2009 04:41:35 +0000

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.

kkahnharris on "The politics of ME, ME, ME"

kkahnharris — Sun, 25 Jan 2009 13:01:08 +0000

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.

F1Fan on "The politics of ME, ME, ME"

F1Fan — Fri, 23 Jan 2009 15:02:09 +0000

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.

Tony Curzon Price on "The politics of ME, ME, ME"

Tony Curzon Price — Thu, 22 Jan 2009 20:53:00 +0000

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

kkahnharris on "The politics of ME, ME, ME"

kkahnharris — Thu, 22 Jan 2009 11:34:13 +0000

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 on "The politics of ME, ME, ME"

F1Fan — Wed, 21 Jan 2009 14:20:11 +0000

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 on "The politics of ME, ME, ME"

kkahnharris — Wed, 21 Jan 2009 13:15:13 +0000

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.

Orson Unwells on "The politics of ME, ME, ME"

Orson Unwells — Wed, 21 Jan 2009 07:13:30 +0000

"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.

Orson Unwells on "The politics of ME, ME, ME"

Orson Unwells — Wed, 21 Jan 2009 06:59:39 +0000

"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.

Orson Unwells on "The politics of ME, ME, ME"

Orson Unwells — Wed, 21 Jan 2009 06:35:37 +0000

"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?

Orson Unwells on "The politics of ME, ME, ME"

Orson Unwells — Wed, 21 Jan 2009 06:12:23 +0000

"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"...

Lilian Nattel on "The politics of ME, ME, ME"

Lilian Nattel — Tue, 20 Jan 2009 20:04:26 +0000

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.

Troy Camplin on "The politics of ME, ME, ME"

Troy Camplin — Tue, 20 Jan 2009 14:35:48 +0000

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 on "The politics of ME, ME, ME"

Daniel Zylbersztajn — Mon, 19 Jan 2009 16:17:56 +0000

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 on "The politics of ME, ME, ME"

douglas clark — Sat, 17 Jan 2009 12:37:38 +0000

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?

The politics of ME, ME, ME, Keith Kahn-Harris David Hayes

Tue, 20 Jan 2009 11:23:58 +0000

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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