Today Wessely authors an article in the Spectator about ME extremists

[Enid]

Many thanks for showing us the letters - something to cheer in this media frenzy.

 

[orion]

Unlike 'you' activists (a description so inappropriate as to render the term 'activist' meaningless) Charles Shepherd is appointed by a representative body of a member organisation - the MEA has to do no more than fulfill its obligations to its members and comply with Charity Law, something which it appears to do with continuing effect. That there are those who are not MEA members, who are dissatisfied with the MEA and/or the MEA's medical advisor, is irrelevant, other than that intemperate attacks on either the MEA or Charles Shepherd, by non members, only serves to alienate further those people affected by M.E/CFS who view self appointed 'activists' as unrepresentative, manuipulative and harmful to the general interests of people affected by M.E/CFS.
IVI

Actually, you've got it completely back to front.

In reality it is Charles Shepherd's views that are given undue prominence by the media simply because he holds the title of MEA's medical adviser. He is perceived (incorrectly in my opinion) by journalists to speak for ME patients as a whole.

By way of contrast, the only person I claim to represent is myself. That's the beauty of the internet, everyone can have a voice regardless of their health, financial resources, and what titles they happen to hold. The internet actually brings us significantly closer to the ideal of a direct democracy. That's why people who hold positions of power feel so threatened by it.

If your assertion that my views are unrepresentative is correct then my voice will be drowned out by the majority of patients who hold different views. However, if large numbers of patients actually agree with me then collectively our voices will be heard.

 

[Dolphin]

If your assertion that my views are unrepresentative is correct then my voice will be drowned out by the majority of patients who hold different views. However, if large numbers of patients actually agree with me then collectively our voices will be heard.

This is true in an ideal world. However, some views (in any forum on any subject perhaps) can be more popular or acceptable than other views and so only some people may feel comfortable giving their views or giving them often. Also, some people (in any forum on any subject again) can be more assertive or aggressive than others which might some people off giving their views so again some viewpoints may be more prominent.

But it is an interesting point you make about the "democratising" effect of the internet in general.

 

[Bob]

Well done to Anna (who I know) and K. (who Im not aware that I know)

Sir: I am pleased to read that Simon Wessely is `very proud of his achievements'. Unfortunately even he admits that at least a third of patients do not respond to CBT (cognitive behavioural therapy) or GET (graded exercise therapy). In fact this figure is likely to be much higher, as around a quarter of sufferers are housebound or bed-bound and therefore unable to access these treatments. And while the recent PACE trial showed some benefit to a small proportion of those involved, it only included those well enough to attend the hospital for appointments. A similar trial (the FINE trial) which involved nurses carrying out treatment in the home of patients who are severely affected showed absolutely no benefit. In the light of this, and despite Simon's hard work over the last 20 years, it is absolutely not surprising that the third of patients for whom these treatments do not work are demanding something more. Twenty years is a long time to be housebound, cut off from the world with not even a glimmer of hope their frustration is understandable. It is time to take a wider view of ME and expand research efforts to other specialist areas. These people want more and they deserve more.

Dr Anna Wood
Glasgow

This is a good letter, but I am so saddened when I see ME patients and patient representatives repeating the PACE Trial authors' spin.
30% did not improve as a result of CBT or GET.
It was one in seven patients who responded to CBT and GET. That's no more than 16%. (And that's only if we accept the flaws and the invalid statistics presented to us in the published paper.)
I wonder how we can we get this message out to ME patients everywhere?

 

[Bob]

Unlike 'you' activists (a description so inappropriate as to render the term 'activist' meaningless)...

IVI, I don't know if that was meant to be a sweeping derogatory remark aimed at the entire forum membership, but it is in danger of being interpreted that way.

 

[Bob]

In reality it is Charles Shepherd's views that are given undue prominence by the media simply because he holds the title of MEA's medical adviser. He is perceived (incorrectly in my opinion) by journalists to speak for ME patients as a whole.

Personally, I think that Charles Shepherd did quite a good job when interviewed on Radio 4's Today program, but the interview clearly didn't suit everyone's expectations and needs so I agree that it cannot be assumed that he represents all ME patients. The Today program should have interviewed other ME patients, or represenatives, esp those who have strong opposing views to Wessely. It is frustrating when the media only interview one person who they pretend represents an entire community. And it is esp unfair to only interview one patient representative when they've just given air time to three 'scientific' colleagues (Esther Crawley, Myra McClure and Simon Wessely) who had set out to denigrate the entire community with their media blitz.
It would have been helpful if several ME patients and patient representatives were interviewed, then Charles Shepherd would have been one voice amongst many, and this would have been fairer for everyone.

 

[In Vitro Infidelium]

Actually, you've got it completely back to front. In reality it is Charles Shepherd's views that are given undue prominence by the media simply because he holds the title of MEA's medical adviser. He is perceived (incorrectly in my opinion) by journalists to speak for ME patients as a whole. By way of contrast, the only person I claim to represent is myself. That's the beauty of the internet, everyone can have a voice regardless of their health, financial resources, and what titles they happen to hold. The internet actually brings us significantly closer to the ideal of a direct democracy. That's why people who hold positions of power feel so threatened by it. If your assertion that my views are unrepresentative is correct then my voice will be drowned out by the majority of patients who hold different views. However, if large numbers of patients actually agree with me then collectively our voices will be heard.

Perhaps then you need to reconsider your earlier post:

Indeed. Once again Shepherd lets us down. It's about time that guy realised that you can't sit on the fence forever, especially when you're dealing with arrogant self-serving individuals who are unwilling to compromise or engage in meaningful honest debate. He should either man-up and join the fight or retire. One of the reasons why ME patients in the UK face particular difficulties is because for years the only organisation representing us was the useless MEA. And essentially Charles Shepherd is the MEA. However, he's largely an irrelevance these days. Thanks to the internet us "activists" can now take the fight directly to the enemy without having to deal with ineffectual middlemen like Shepherd.

You assert that CS is unrepresentative, you subsequently argue that it is the fault of journalists that CS is given the opportunity to express unrepresentative views, you also argue that CS is irrelevant and that what is important is the fight carried on by "us activists". The MEA is a member organisation, as its medical adviser CS has only to represent the views of the MEA membership, how can CS or the MEA be responsible for how the media uses the material provided to it ? Are you saying that M.E/CFS affected people who have an MEA membership have no right to have their views represented by any person they choose to represent them and that axionatically those views are illegitimate ? And if the MEA and CS are irrelevant, and if 'you internet activists' are so adept at 'fighting the good fight' why are you making ad hominem attacks on the MEA and CS ?

The notions of democracy you expound are frankly crass, although they are commonly expounded by numerous internet bullies who drive people away from any arena the bully chooses as a stamping ground. The vast majority of M.E/CFS affected people do not openly use the internet - anyone who has spent time on the various M.E/CFS forums knows full well that we are a tiny number, wholly unrepresentative of the several million global M.E/CFS affected population. As to the notion that 'our voices will be heard' as part of some grand accumulation of 'truth' by an invisible proccess of evolutionary sorting (strongest survives, the weak will die ) apart from the profound irony of lauding such a process when dealing with people whose commnonality is defined by the very fact of our weakenss, it is to use an internet term, total burning stupid. The words activist and M.E are now connected in the public mind in the UK, and increasingly across the English speaking world, with so many negatives as to make its authoratitive value unredeemable - the one lasting success of M.E/CFS internet activists is to have made their own identity the health advocacy equivalent of the News of the World. Of course it's all the fault of the evil Sith Lord Wessely assisted by the propaganda and lies of the SMC that M.E/CFS sufferers are now widely veiwed as potential maniacs prone to harrassing anyone foolish enough to actually offer help - that's the great thing about internet activism - no one actually has to take responsibility when things go wrong, or the oppsition turns out to be richer, smarter, more well connected, or just less stupid.

IVI

 

[In Vitro Infidelium]

IVI, I don't know if that was meant to be a sweeping derogatory remark aimed at the entire forum membership, but it is in danger of being interpreted that way.

Orion introduced the notion of 'us' - I simply responded using the appropriate pronoun. You'll have to take up with Orion who he/she considers to be the 'belongers' in his/her 'us' and 'them' world view. I can only affirm that I'm not a belonger to the Orion 'in group' and that I consider reasoned 'activism' to be something other than that practised by most self described M.E/CFS advocates and activists.

IVI

 

[Valentijn]

Are you saying that M.E/CFS affected people who have an MEA membership have no right to have their views represented by any person they choose to represent them and that axionatically those views are illegitimate ?

Do they choose Dr Shepherd to represent them? Are they given options and a vote? Or do they get stuck with whatever representative is chosen by the MEA? I'm also not aware of alternatives to the MEA in England, but would be very interested to know what other options there are in the realm of organized support for ME patients. If there is basically only the one organization, and its members do not choose who speaks to the media for them, the only say they have is to be a member or not to be a member. It is quite likely that many members are not 100% in accord with the MEA (or any other organization), yet choose to remain members because the good outweighs the bad.

Furthermore, I see no easy way for MEA members to give their feedback to the MEA. There is no apparent discussion between members and the MEA, only information and services provided by the MEA to its members and the public. The MEA is in charge, and for a fee, the members can participate by getting some brochures with the information that the MEA deems appropriate. Though I do admit I'm basing my assumptions based solely on what I see on their website, and may not have all the relevant information.

That said, I don't think Dr. Shepherd is a bad representative. His views and that of the MEA seem sensible, assuming their rejection of the psychological cause for the continuation of ME is sincere. But on the other hand, being a reasonable and intelligent representative does not necessarily equate to being an effective representative or advocate.

He is being largely ignored in the recent media frenzy, and it may be because he is not sensational enough. Reasonable and intelligent advocacy is essential if we are to be taken seriously, but the media isn't going to give a damn unless there's some sizzle with the steak. His response to Max Pemberton is spot on for accuracy, but it's dull as dirt, focusing on numbers. Then he goes on to list the names of the BS psychological treatments - thereby reinforcing their existence in the minds of the public.

He is taking a purely reactionary stand, but with none of the passion seen in article to which he is responding. Why not go on the offensive? Why not display outrage at what Max Pemberton has said?

The notions of democracy you expound are frankly crass, although they are commonly expounded by numerous internet bullies who drive people away from any arena the bully chooses as a stamping ground. The vast majority of M.E/CFS affected people do not openly use the internet - anyone who has spent time on the various M.E/CFS forums knows full well that we are a tiny number, wholly unrepresentative of the several million global M.E/CFS affected population.

Of course the vast majority of ME sufferers are not on this website. But why should that negate the power of our opinions? We can't say we represent everyone, because we can't talk to them, and they aren't here talking to us. All we know is what we experience as a community, and I don't think we should stay silent just because we don't know what the rest are thinking. No one is ever going to know everything, but if that stopped people from acting, nothing would ever be accomplished. All we can do is represent ourselves to the best of our abilities.

As to the notion that 'our voices will be heard' as part of some grand accumulation of 'truth' by an invisible proccess of evolutionary sorting (strongest survives, the weak will die ) apart from the profound irony of lauding such a process when dealing with people whose commnonality is defined by the very fact of our weakenss, it is to use an internet term, total burning stupid. The words activist and M.E are now connected in the public mind in the UK, and increasingly across the English speaking world, with so many negatives as to make its authoratitive value unredeemable - the one lasting success of M.E/CFS internet activists is to have made their own identity the health advocacy equivalent of the News of the World. Of course it's all the fault of the evil Sith Lord Wessely assisted by the propaganda and lies of the SMC that M.E/CFS sufferers are now widely veiwed as potential maniacs prone to harrassing anyone foolish enough to actually offer help - that's the great thing about internet activism - no one actually has to take responsibility when things go wrong, or the oppsition turns out to be richer, smarter, more well connected, or just less stupid.

Ah, there's the typical message that we should sit down and shut up, while the experts take care of everything. It'd be tempting to do that, since standing up and shouting is very exhausting for us, but staying uninvolved has gained as absolutely nothing thus far. But maybe we should try something different.

Maybe we need to stand up taller, and shout even louder.

 

[Firestormm]

Will reply in more detail later. But yes we get a vote and yes there are many charities in the UK for people to choose from - probably too many if you ask me but there it is...

Dr Shepherd works voluntarily I believe - 30 hours a week or something - but in terms of being in contact with the MEA as a member I can do this as much or as little as I like: email, facebook, whatever.

I think you need to understand something more about UK Charities and the fact that most (if not all) of those working for them (the MEA I mean) do so on a voluntary basis.

When Dr Shepherd and others make statements or contributions to programmes they do so on behalf of the MEA. Members do not get to approve things before hand - that isn't how it works.

But we can (and do) raise concerns and are free to question.

Will read through your reply later. Sorry have to go rest up for now...

 

[Esther12]

I think you need to understand something more about UK Charities and the fact that most (if not all) of those working for them (the MEA I mean) do so on a voluntary basis.

Curses - there goes my only remaining route to the high life.

 

[orion]

Orion introduced the notion of 'us' - I simply responded using the appropriate pronoun. You'll have to take up with Orion who he/she considers to be the 'belongers' in his/her 'us' and 'them' world view. I can only affirm that I'm not a belonger to the Orion 'in group' and that I consider reasoned 'activism' to be something other than that practised by most self described M.E/CFS advocates and activists.

IVI

You appear to have misunderstood what I said.

The reason why I put the term activists in inverted commas is precisely because it is so often misused in a derogatory way as a vague catch-all term to describe anyone considered to be awkward, difficult, extreme etc.

The reality is that all of us here are activists in our own different ways. Even Charles Shepherd is an activist, just not a very effective one (in my opinion).

 

[Tony Mach]

Was thinking of this:
http://youtu.be/BTWaaSwnnZk

 

[Bob]

The reason why I put the term activists in inverted commas is precisely because it is so often misused in a derogatory way as a vague catch-all term to describe anyone considered to be awkward, difficult, extreme etc.

Well, that's news to me... I had no idea... I've only ever heard 'activist' used in positive or unemotive terms...
Are you sure that's not your own interpretation, because I've honestly never thought of the word in those terms before?
It's always been a positive word for me.

 

[Firestormm]

I think 'advocate' summons feeling of positivity more so than 'activist' personally, although I have reservations even about 'advocate' these days unless the term is quantified by the person calling themselves one. Then again if the police choose to designate these 'threats' as being on a par with the actions of animal rights activists - I suppose what might have been a term you associated with positivity, gets 'tainted'?

 

[Bob]

I think 'advocate' summons feeling of positivity more so than 'activist' personally, although I have reservations even about 'advocate' these days unless the term is quantified by the person calling themselves one. Then again if the police choose to designate these 'threats' as being on a par with the actions of animal rights activists - I suppose what might have been a term you associated with positivity, gets 'tainted'?

Yes, I see what you mean there Firestormm. 'Activists' can have a negative connotation in that context, because animal rights activists are portrayed by the media as extremists. I suppose I've always been aware of the difference between 'activists' and 'extremists' in relation to animals rights and other campaigners. Likewise, I know that 99.999999999% of muslims are peace loving, respectable and decent people, but I wouldn't know that from the media portrayal of muslims. So in the same vein, I hope other people will realise that most ME patients are just patients, and not extremists like Wessely likes to portray us.

 

[Firestormm]

Good analogy. As ever in life it is those deemed by others for their 'extremist' actions and/or views that 'taint' the rest and sometimes with almost disastrous results...

Though the police are said to have made this association with animal rights activists - it is of course their own view and similarly those who receive 'threats' and even 'death threats' will interpret them according to their own set of values.

Even so it doesn't make the attacks 'right' and actually undermines any cause but then I guess it has to be balanced with what they think (if indeed they do) such actions will achieve.

O crap. Read too many psychology books. Was about to 'go off on one then'. Sorry.

 

[orion]

Like many words, the term activist means different things to different people and its meaning also depends to some extent on the context in which it's used. At its most benign, it can be just another way of describing people who actively campaign for a cause. However, the term is also often used to describe people who pursue their aims in an aggressive, confrontational, and perhaps even violent manner.

I've noticed that a lot of the negative articles on ME use the term "ME activist" to describe campaigners. I don't think this is a coincidence. There is often a hidden subtext that if these people are really as ill as they claim, then how come they're able to campaign so vigorously.

Whether it's actually a positive term ultimately depends upon your philosophy and perspective. Personally, I'm perfectly happy to be called an activist. But if you're one of those people who believes that our aims can be achieved through nothing more than gentle persuasion, you might take a different view.

 

[Firestormm]

Well put.

Of course anyone who comments or campaigns can be deemed an 'activist' as you say, they don't have to all be patients of course. I noticed in the recent media stories that hit the British press recently, no accusation was laid at the patients' door specifically or generally - hence the generalised terminology perhaps.

Though the cartoon (pulled quickly) in the Time Education commentary was actually saying what your second paragraph describes and that 'suggestion' and attempt at 'humour' has been taken up elsewhere on blogs I notice.

 

[alex3619]

Hi, May I put forward an observation that Simon Wesseley et. al. are activists for the biopsychosocial movement, and indeed many of our issues and complaints come from their activism and not their science. Bye, Alex