Dr Charles Shepherd give BBC Radio Interview

[Enid]

Can't remember when but some time ago W said how much he enjoyed the whole ME debate (whilst propogating his theory of wrong thinking) - so let's hope with all coming out this will now cease. Liddle presumably hasn't bothered to do his research.

 

[max]

There are two problems with whats being asserted in these quotes. The first problem is that the accusations against Wesseley are not sustainable in terms that anyone outside of an M.E/CFS affected perspective will take as being valid, and the more that such accusations are vocalised the more fanatical the accusers appear, further questioning the validity of their position. The second problem is that it is impossible to mount a campaign against Wesseley without confirming the now established proposition of unjustified attack in effect the battle is lost even before it could be begun. In a such a circumstance the only sensible thing to do is withdraw and embark upon a different strategy. In this case there is the very obvious opportunity presented by the costs of PACE stop attacking individuals and focus on a good old fashioned UK media obsession (not sex or house prices but still a goody) Government expenditure - 5 million for what ?

IVI

Trying to argue the cost of the Wesselys research is an empty pointless exercise, a few million makes zero difference, people read and watch TV reports of wasted money everyday, it will justify the ending of funding to most, that is not what we want.

Now is the time to increase pressure on the Wessely, we have nothing to left to lose, if we back down now, the media will be able to close the book.

 

[Bob]

Now is the time to increase pressure on the Wessely, we have nothing to left to lose, if we back down now, the media will be able to close the book.

I agree that this is a good opportunity to apply pressure, at least to Radio 4.

If anyone wants to send a message to Radio 4's Today program (this is the news program where the interviews were broadcast) you can do so here....
http://news.bbc.co.uk/today/hi/contact_today/default.stm

(I think we should try to keep our messages as polite, factual and non-personal as possible, so we don't give the BBC any reason to believe Wessely's negative portrait of the ME community, although I'm struggling to keep my correspondence non-personal myself.)

 

[max]

Hi Bob

We will be wasting our time with the Beeb - they are under the influence of the Science & Media B/S that comes out of the Wessely mouth.

However, we could ask the Beeb to define 'objective science' as opposed to 'subjective evidence based research' and how subjective opinion can ever be related as 'fact'.

Until the US, Canada etc etc find the science based evidence we need, we are on the back foot - the only thing we can do is to keep up the pressure, when the answer comes, we need to ensure the Wessely cannot inflict his beliefs on any other group - he has been presented with the opportunity to retire gracefully (as he keeps claiming), for some reason he appears to be reluctant to do so.

 

[Roy S]

Health Warning: Please Do Not Read That Article if you are feeling fragile today!

I think that I can safely say that it's the worst article that I've ever read about ME.

It's aggressively dismissive, disrespectful, arrogant, ignorant, partisan, unscientific to the extreme and quite honestly, it's abusive. And it's not journalism. It's a cheap and shoddy tirade of abuse, aimed at a vulnerable patient group.

I'm glad that the Times is behind a paywall so the article isn't widely accessible.

I have to say though, that if this article was designed to provoke a reaction, which I'm sure it was, then he's succeeded, and I fell for it!

If Simon Wessely has suffered abuse from patients in the past, he's really not helping himself here!
But it seems quite obvious that he actually revels in the controversy that he creates anyway.

I would add that it's prejudice and abuse. There are some good comments from advocates.

 

[Enid]

Just viewed the Liddle diatribe and it seems that his statements are both incorrect and libellous.

1) Simon Wessely - leading researcher
2) ME Asoc Site - foaming paranoia
3) ME Assoc Site - the cause is some sort of weird retrovirus
4) In the "light" of Wessely's research - patients show denials and paranoia

Is it allowed in medicine for doctors to be so abusive and dismissive of patients (even if not on their "books") And libel and misrepresentation look glaringly obvious too.

 

[Valentijn]

There are two problems with whats being asserted in these quotes. The first problem is that the accusations against Wesseley are not sustainable in terms that anyone outside of an M.E/CFS affected perspective will take as being valid, and the more that such accusations are vocalised the more fanatical the accusers appear, further questioning the validity of their position. The second problem is that it is impossible to mount a campaign against Wesseley without confirming the now established proposition of unjustified attack in effect the battle is lost even before it could be begun. In a such a circumstance the only sensible thing to do is withdraw and embark upon a different strategy. In this case there is the very obvious opportunity presented by the costs of PACE stop attacking individuals and focus on a good old fashioned UK media obsession (not sex or house prices but still a goody) Government expenditure - 5 million for what ?

I agree with others that people won't get up in arms about 5 million pounds wasted. That sort of thing happens all the time - it isn't news.

On the other hand, doctors and patients claiming that Mr Wessely is doing harm by ignoring overwhelming evidence for whatever reason ... well, that's nice and juicey, even if there's no resolution. Personally I think we should fully take advantage of any media spotlight on M.E. while it lasts. Let the the media outlets know that this IS a controversial subject that people care about.

I think the worst thing we could do is stay silent, even if to prove a point about not being a bunch of whackjobs.

 

[Bob]

Hi Bob

We will be wasting our time with the Beeb...

Hi Max, I don't agree with you here. In my experience, Radio 4 are sometimes very receptive to their listeners. Another Radio 4 program, 'You and Yours' did a feature on ME a couple of years ago. I emailed them ahead of the broadcast, and they phoned me up for an interview. I wouldn't be surprised if Today do a follow up. I think that they represented ME quite fairly in the end, although not perfectly.

I agree with your other points, and I think that every little bit of pressure from us helps in the long run.

 

[Enid]

Thanks Bob for links - got through to "Today" with message (along the lines fools rush in - but gently)

 

[currer]

I have complained to the BBC. It is easy they have a webpage. http://www.bbc.co.uk/complaints/

The BBC is in contravention of the Disability Discrimination Act which prohibits a public body (such as the BBC) from acting in a way that will incite contempt or discrimination of a disabled minority.

Check out the Act - it give us strength.
http://www.inclusion.me.uk/blog/disability-discrimination-act-dda-2005-dda-2005-summary

 

[Bob]

Thanks Bob for links - got through to "Today" with message (along the lines fools rush in - but gently)

I have complained to the BBC. It is easy they have a webpage. http://www.bbc.co.uk/complaints/

The BBC is in contravention of the Disability Discrimination Act which prohibits a public body (such as the BBC) from acting in a way that will incite contempt or discrimination of a disabled minority.

Check out the Act - it give us strength.
http://www.inclusion.me.uk/blog/disability-discrimination-act-dda-2005-dda-2005-summary

Great stuff, folks.

I've just emailed them a huge letter!
I wanted to explain the situation, and all the issues.
I've been told that I've sent them far too much for busy journalists to read, and they are unlikely to read it.
But I'm too tired to edit it, and I'm hoping that they might at least have a quick look through it, and get some of the message.

 

[Firestormm]

Health Warning: Please Do Not Read That Article if you are feeling fragile today!

I think that I can safely say that it's the worst article that I've ever read about ME.

It's aggressively dismissive, disrespectful, arrogant, ignorant, partisan, unscientific to the extreme and quite honestly, it's abusive. And it's not journalism. It's a cheap and shoddy tirade of abuse, aimed at a vulnerable patient group.

I'm glad that the Times is behind a paywall so the article isn't widely accessible.

I have to say though, that if this article was designed to provoke a reaction, which I'm sure it was, then he's succeeded, and I fell for it!

If Simon Wessely has suffered abuse from patients in the past, he's really not helping himself here!
But it seems quite obvious that he actually revels in the controversy that he creates anyway.

Yep. It was. Well as far as I can make out anyway. As I said on Prof Hooper's response thread. It helps if people take a step back I think. Realise what is actually being said and consider what a comment might be determined as representing.

This was a commentary - not an article. This chap Liddle has - I believe - 'form' for being controversial and inaccurate though if you read his piece take a while to think about what he is saying and who he is saying it about, and then comment - perhaps any 'trap' can be avoided.

As I have said also elsewhere - I fail to see why the MEA should be 'hopping up and down' in anger over the interview with Prof Wessely. The MEA have absolutely nothing to be 'mad' about. Read the transcript of the interview.

There are inaccuracies for sure within Liddel's piece. I repeat. It is a commentary designed to provoke reaction. It wouldn't look out of place in the Sun or Daily Wail for that matter. I am amazed he was permitted to publish - but scientists being threatened by 'activists' is news to the unenlightened.

Reading some of the forum comments and Facebook pages - which are also read and used by journalists - one can see the 'evidence' available to them. Remember these journalistic pieces are aimed at the activists - those who wrote and carried out the 'abuse' - not me that's for sure.

IVI and Esther - I believe - previously were talking about the various charities and true representative organisations speaking out together against these tiny, tiny, few and I agree.

There was a campaign I believe some time back 'Not in my name'. I am not suggesting this should be used under these specific circumstances - but it might be worthy of further debate....?

 

[Firestormm]

Firestormm - I wonder if you've managed to read Prof Hooper's clarifying letter (Bob's post 109 here). Just puts the whole thing in perspective rather than the usual ignorance picked up by the tabloid press. "Shoot the Messenger" in your post 115 from the Sunday Times sounds too biblical for me - well some humour needed.

I have Enid thank you. I read it when it was first posted elsewhere and I believe - I don't know - it has been sent to the BBC. That is a shame in my opinion. Not least because it is not an accurate representation of the transcription from the BBC Interview with Wessely.

I didn't 'like' the reference to help from the ME Community either for what it is worth. And rehashing the history is not serving any purpose other than potentially aligning oneself with those whom the interview was addressed at.

Would it not have been more appropriate to stick to the interview transcript perhaps?

Anyway, the Times piece was - as I have said above - a commentary and designed to inflame, which it obviously has. Personally I just felt numb and sad that it has come to this once more.

 

[Firestormm]

Rod Liddle used to be an editor for the Radio 4 program that interviewed Wessley on Friday morning.

He's had a busy week (RL). Fresh for abusing disabled benefit claiments in the Sun newspaper earlier.

http://www.spectator.co.uk/rodliddle/5601833/benefits-of-a-multicultural-britain.thtml

http://www.spectator.co.uk/essays/a...ost-benefits-of-a-multicultural-britain.thtml

Thanks to NMJ for doing the research.

O sorry - that is an 'article' (blog post) from the Spectator and the PCC Adjudication that was upheld against him.

 

[ukxmrv]

The journalist pieces "just" aren't aimed at death threating issuing "ME activists". They are aimed at all ME patients who operate in legal ways.

Those who organise legal protests when the Psychiatric lobby lie

Our supporters like Prof Hooper who write to magazines and fight for us

Patients who organise petitions

Who meet with MP's

Who write letters

This is designed to denigrate each and every ME patient who fights back with humour, legitimate protests and complaints

The vast majority of patients act within the law and in the same way other groups act

It's an attempt to tar all of us with the "mad and bad brush"

We're sick not stupid.

 

[Firestormm]

I don't agree I am afraid UKXMRV. But then you wouldn't expect me too I don't suppose. The articles and interviews were quite clear - though open to mis-interpretation - it is those making the threats not the 'community' at large.

Those who do believe (if there are in reality anyone out there that does) that having a retrovirus is preferable to a psychological condition. Do you see what I am saying?

If you don't believe that then it isn't aimed at you is it? If you haven't sent abusive emails or made phone calls etc. referred to by Wessely so generally, then this doesn't refer to you either.

Very very small minority....

 

[Enid]

Delighted to see Dr Charles Shepherd is drawing up a response to the various factual inaccuracies and misrepresentations in Rod Liddle's Sunday Times commentary. (See the MEA website).

 

[Bob]

Hi Firestormm,

I'm not quite sure what angle you are coming from here.
Are you suggesting that the ME community should not be involved in any activism?
Personally, I believe that if the patient community did no advocacy or campaigning, then we there would be very little progress.
I think it's helpful to raise the profile of ME, and to campaign for improvement to our situation.

With regards to this specific radio item, I agree that the abuse issue is a red-herring, and just an excuse for Wessely to get on the radio and promote his views re ME being a psychiatric disease. I can't believe that many people believe that ME patients are more abusive than any other section of the population.
So my correspondence has only been focused on the biomedical nature of ME, the desperate need for biomedical funding and government policy.

I think that Wessely has given us a chance for our voices to be heard on mainstream media, which doesn't happen very often.
Apart from anything else, I think that media exposure can help to galvanise and strengthen the patient community.

 

[SOC]

I have complained to the BBC. It is easy they have a webpage. http://www.bbc.co.uk/complaints/

The BBC is in contravention of the Disability Discrimination Act which prohibits a public body (such as the BBC) from acting in a way that will incite contempt or discrimination of a disabled minority.

Check out the Act - it give us strength.
http://www.inclusion.me.uk/blog/disability-discrimination-act-dda-2005-dda-2005-summary

I should think Action for ME and the MEA have material here for formal complaints.

I think currer has a very important point here.

We are so used to getting annoyed by W's lies about us that I think a lot of us have lost track of the big picture (or one of the big pictures).

I think the public can see how absurd his behavior is. He has a smooth way of speaking, so it may help if we clear the dust for the general public by pointing out a few of the obvious absurdities.

This doesn't have to be about ME. We don't need to defend our illness in this case. This is about the whiny, obnoxious, absurd, unprofessional behavior of one (or a couple) of physicians whose work is being debunked by recent science.

Critical points:

1. Where is the substantive evidence of credible threats?

2. Are his extreme safety measures justified by the criticism he has received, or is he over-reacting to common (if obnoxious) internet chatter that results from public statements on controversial subjects?

People who read comments on news or internet forums and boards have seen plenty of "that's bull$h1t" and "he's an effing idiot". They are not going to be impressed with W having a panic attack (with taxpayer money) over internet criticism.

3. Is it generally acceptable in the medical community to come out with the kind of statements he's been making about the population you claim to serve?

4. Does he have ANY reason to generalize the behavior of a few obnoxious letter writers to the whole patient community? His statements are gross stereotypes.

5. His work is being debunked by real scientists. Now he's blaming the victims to try to salvage his personal ego/status/whatever. It's not subtle.

[All that needs to be cited at this point is the ICC. It's W (acting like a self-focused, whiny fool) against many well-respected scientists.

We have the Wizard of Oz here, people. Pull back the curtain. This is not about US, it's about HIM.

edited to condense

 

[Firestormm]

Hi Firestormm,

I'm not quite sure what angle you are coming from here.
Are you suggesting that the ME community should not be involved in any activism?
Personally, I believe that if the patient community did no advocacy or campaigning, then we there would be very little progress.
I think it's helpful to raise the profile of ME, and to campaign for improvement to our situation.

With regards to this specific radio item, I agree that the abuse issue is a red-herring, and just an excuse for Wessely to get on the radio and promote his views re ME being a psychiatric disease. I can't believe that many people believe that ME patients are more abusive than any other section of the population.
So my correspondence has only been focused on the biomedical nature of ME, the desperate need for biomedical funding and government policy.

I think that Wessely has given us a chance for our voices to be heard on mainstream media, which doesn't happen very often.
Apart from anything else, I think that media exposure can help to galvanise and strengthen the patient community.

No I am not Bob. Though your definition of 'activism' might differ with my own. I am referring specifically to the interview that kicked off this latest series of media articles.

Is responding to any of that necessary? Or indeed helpful? Why not agree with what was said by Wessely?

If one has written a letter that is not an 'attack' that is not 'abuse' that is not 'harrasment' or whatever - that does not say 'I believe I have a retrovirus which I think is preferable to having a mental illness' - then why not agree with him or leave it alone? Why respond?

In the transcript Wessely did little to 'promote his views re ME being a psychiatric disease' not really. I am simply saying - in my round-a-bout fashion - that to respond in a knee-jerk fashion claiming to represent the 'many' or the 'community' might not be the best way to proceed.

I think if you read the transcript you will see (I know you personally have by the way) that he does not challenge the need for biomedical research. He says (and I am failing fast now so forgive me) that people should not turn there backs on some help simply because they believe their condition stems from a retrovirus.

BBC Radio Wales was another interesting transcript to read because it featured more members of the Public - as did the actual Today programme. These people's words should be listened to.

They and Dr Shepherd - even Wessely and Dr Crawley - ensured that the programme was not an 'attack on the whole community' as I have heard elsewhere suggested.

This was not about psychological vs biomedical or about Wessely's 'dubious' past. This was about the threats received by various means from 'extremists' that potentially undermine existing and future research.

Now that last DOES relate to biomedical research as does the comments from Prof McClure (or is it Dr I can't remember at this minute). And in respect of McClure - in answer to other comments - she has stepped back from research into CFS. Those more recent papers that carried her name were - correct me if I am wrong - in relation to her being some sort of editor or something.

Will come back on that point....