How would it change you if this was a medically recognisable illness?

[worldbackwards]

MEActionUK is not a reputable source of information.

This is true. Too often a mix of fact, fiction and half truths that shoots itself in the foot when there's plenty in the real world to get worked up about as it is. A problem across disability activism in general, in my opinion.

 

[Countrygirl]

What would be the reason it has never aired in other countries? I think saying that there is "no way that the SMC could allow the documentary to by shown if the name of the illness was made public" is likely untrue and such statements should have some kind of proof because if this is true well ... ... ... !!!!!

I should have made it clearer, Kina. I was only referring to the UK. I don't know about other countries. It would be great if it could be shown elsewhere.

 

[sarah darwins]

Got to be honest, I follow media stuff pretty closely and I've never heard of a "D rating" or anything like it. I'm pretty confident there is no such thing.

Someone may have got confused after hearing about "D Notices", which do indeed exist. D Notices (renamed in the 90s to DA Notices - Defence Advisory Notices) are occasionally used to discourage publication of something deemed to be a threat to national security. In fairness, they have always been quite uncommon, and they aren't legally enforceable. The press generally honours them, recognising that they might occasionally get possession of material which would genuinely put people at risk if it were published.

D(A)-Notices might have been misused a few times to cover some politician's backside, but I've never heard of them being used in anything like health science, and I'm pretty certain even our often ridiculous media would draw the line at that.

I also don't think for a minute that journalists are required to check anything with the SMC. Unfortunately, many do because they've been told (mainly by, um, the SMC) that it's the font of all scientific wisdom, a sort of handy "fact" checker. The SMC's ubiquitous influence is a triumph of spin and cronyism, not of coercion.

I would be absolutely delighted if the UK attempted to ban broadcasting of Voices or to censor its content. Last time the UK tried to do something like that was with the book Spycatcher back in the 80s. They managed to turn a largely unremarkable memoir by a retired intelligence officer into an international bestseller!

 

[sarah darwins]

ps. of course, it's possible that a particular UK broadcaster turned the film down because "We've checked and the illness is no longer called ME .. etc. etc.", in which case I hope the film makers will tell us all about it because that would be a seriously important news story and a great chance to get people talking about ME

 

[slysaint]

I wish they'd make a film about Lynn Gilderdale.

 

[Kyla]

Hello Kyla,

I can direct you a discussion on how the SMC works as I briefly described above. I have just found it on PR and you were one of the posters.

http://forums.phoenixrising.me/inde...-pushing-corporate-science.30393/#post-664720


To briefly reiterate, when a journalist wants to write an article on a claimed scientific finding, they consult the SMC for the official story written by 'chosen experts' which in the case of a story on ME would be Prof White, Sharpe, Chalder and Wessely or any of their supporters. They do not choose people who would criticise the UK's official line. If you click on the link I gave you can see for yourself. You will also see where that the interpretation of the story that broke about the PACE trial recently came from. You can also check each breaking story year by year on the site, should you chose to do that.

The information about how the D rating functions was easily accessible six years ago when I stumbled across it. Not so now it seems as I have just asked Dr Google. Curious!

This was posted by Daisymay which some of you have read.





I tried to read this, but I received the 404 message. Does anyone have a copy of it as it would give some more information about how the UK controls the official message on ME?

Tom has fallen foul of them on the above thread which gives an insight into SCM's censorship role even when dealing with patients:



Interestingly, a year later by using the Wayback Machine, Kyla found this:



It will be fascinating to watch how the SMC respond in the unlikely of a journalist wanting to relate the story of the excellent letter written by the four scientists this week, challenging Dr Horton. They will they ask Prof White, as usual, to write the official story...............or will it be Wessely?


I hope the above makes sense as I have to dash for an appointment now and don't have time to check.

LOL yes, this was not brain fog I remember commenting on that thread, and I am well aware SMC are biased.
But there is an important distinction between supplying biased info and having a rating system that somehow bans journalists from publishing specific types of info. namely freedom of the press. this is not classified military info.
if they actually have/had this system it is a big deal.
Thanks for looking for it @Countrygirl

 

[Kyla]

and @Countrygirl here is a functioning link to the Malcolm Hooper piece:
http://www.meactionuk.org.uk/The-SMC-and-its-campaign-against-MECFS.pdf

 

[Undisclosed]

To briefly reiterate, when a journalist wants to write an article on a claimed scientific finding, they consult the SMC for the official story written by 'chosen experts' which in the case of a story on ME would be Prof White, Sharpe, Chalder and Wessely or any of their supporters. They do not choose people who would criticise the UK's official line. If you click on the link I gave you can see for yourself. You will also see where that the interpretation of the story that broke about the PACE trial recently came from. You can also check each breaking story year by year on the site, should you chose to do that.

Yes, @Countrygirl What does that have to do with the documentary film. It is not an article nor is it about a 'claimed scientific' finding. You are claiming that the SMC controls what is put on television in the UK -- I am asking where is the proof for this information. You haven't answered.

Again you said:

The excellent Film Voices from the Shadows could have been shown, I was informed, but the brilliant people who made it, I heard, were told that any reference to ME itself had to be removed and they refused to grant their permission to have it shown unless the name of the disease was acknowledged on the programme.

I guess, but don't know, that the SMC is the censoring body.

As a community, we need to avoid the promotion of rumours that may not be true because it will come back on us at some point. If their arms of censorship reaches this far and somebody has proof, then it's important to get that out somehow. If it's not true and it starts getting repeated as fact, well .... we all know how that ends -- another meme being produced about us all.

 

[Countrygirl]

Yes, @Countrygirl What does that have to do with the documentary film. It is not an article nor is it about a 'claimed scientific' finding. You are claiming that the SMC controls what is put on television in the UK -- I am asking where is the proof for this information. You haven't answered.

Sorry I am late responding but I have been away from my laptop today. If you are asking for written documentation, that is not on which my information is based, but on practical experience and verbal communication.Briefly, the situation was explained to me by two separate and I believed, reliable sources, about five years ago when I was involved with supplying information for an interview with the BBC. The story we wanted to get out to the public which related the truth of our situation had to be rehashed because it contravened the acceptable public image of ME. Such was the control, that some have decided that it was best to withdraw completely rather than a biased story be given or shown to the public. It was very frustrating. It was then explained to us that ME was under (thank you @sarah darwins for the correct term) a D-Notice, something I had never heard of at that point.

If you think you can persuade the UK media to tell the true story of ME including showing a documentary that portrays the dreadful treatment of the young people who have been taken from their parents or are being threatened by social services then I wish you every success. All those I know have failed to bypass the restrictions.

Many years ago, I remember the journalist Christopher Booker in The Telegraph wrote excellent short articles on ME, Camelford, OP poisoning in the south west and Mark Purdey's hypothesis on the origins of BSE as well as the very serious harassment he suffered as a result. I can't imagine the press printing those stories today. At least the truth about Camelford has been released at long last.

One other point that was mentioned. Much that goes on behind the scenes is not and could not be shared with patients publically until long after the event for reasons too obvious to mention.

Sorry if the above is badly expressed, but it has been a long night and day for me and I am now going to crash..............and check on one of our members who lives in Paris.

 

[worldbackwards]

Many years ago, I remember the journalist Christopher Booker in The Telegraph wrote excellent short articles on ME, Camelford, OP poisoning in the south west and Mark Purdey's hypothesis on the origins of BSE as well as the very serious harassment he suffered as a result. I can't imagine the press printing those stories today. At least the truth about Camelford has been released at long last.

And yet the press (The Guardian, no less) have printed articles about "Voices from the Shadows" itself.

This is the description of what is required to trigger a D-notice (now a DA-Notice):

As of 2008, there are five standing DA-Notices and one proposed:[2]

• DA-Notice 01: Military Operations, Plans & Capabilities
• DA-Notice 02: Nuclear and Non-Nuclear Weapons and Equipment
• DA-Notice 03: Ciphers and Secure Communications
• DA-Notice 04: Sensitive Installations and Home Addresses
• DA-Notice 05: United Kingdom Security & Intelligence Special Services

https://en.wikipedia.org/wiki/DA-Notice
In what sense does ME fit into any of these?

 

[Chrisb]

It does seem highly unlikely that anything about ME could be covered by a D-Notice.

However the possibility does arise that someone may have invoked the D-Notice system as an excuse for doing, or not doing, something. This is the advantage of an impressive sounding, secretive, fairly informal system about which most people know little or nothing.

It is not entirely clear that a disbelieving, adversarial approach is likely to be helpful in ascertaining the facts surrounding conversations from long ago.

It was interesting to hear mention of "Spycatcher". I had been thinking of this recently. My recollection of the furore is that even Prime Ministers may not be safe from rogue elements in administration, and that Harold Wilson's apparent paranoia was entirely justified behaviour.

 

[sarah darwins]

Hi @Countrygirl — I don't think we necessarily disagree very much. But if someone told you there was a d-notice on ME, I'm certain that was wrong. Either they were mistaken or they were using it as an excuse, as Chrisb suggests. Journalists, including ones who work for the BBC, are often quite dim. There aren't many Bob Woodwards around. The BBC does tend to have policy lines on various issues which are disseminated from the top down. It's entirely possible for a BBC journalist to get completely the wrong end of the stick and mistake an editorial position for something more official.

BUT ... there is no question that a lot of pressure comes on the media to follow a line on ME. A lot of that pressure is created through the old boy (and girl) network, at which the UK still excels. I could go into some details on that but I think it would totally derail this thread and would get too political. And frankly, I always get nauseous digging around in that world. George Monbiot has written a lot about this, usually away from the Guardian.

Mostly, though, I do believe this is far more a story of a brilliant PR (public relations not Phoenix Rising!) campaign by the BPS crowd. They are masters of spin and persuasion (but then, given their professions, that's not so surprising).

Thanks for confirming my vague memory that Chris Brooker had written about ME in the past. I've hesitantly suggested his name a few times as someone who might be worth trying to get on board. He does still write without fear — sometimes wrong, never uncertain! — and I don't think upsetting the great and the good bothers him one bit.

 

[CantThink]

Seeing as Channels 4 & 5 love to show documentaries, I wonder why they wouldn't be interested in showing it... What their reasoning would be...

 

[slysaint]

Just watched the trailer on YouTube; sorry, my mistake it DOES feature Lynn Gilderdale.
Has anyone actually asked Channel 4 /5 why they haven't shown it? Given the recent publications in the Telegraph re CBT and GET (couple of ongoing threads on this) maybe someone could suggest their journalists watch it.

 

[CantThink]

Just watched the trailer on YouTube; sorry, my mistake it DOES feature Lynn Gilderdale.
Has anyone actually asked Channel 4 /5 why they haven't shown it? Given the recent publications in the Telegraph re CBT and GET (couple of ongoing threads on this) maybe someone could suggest their journalists watch it.

I was thinking, perhaps it is worth asking the filmmakers which channels they have approached and what response they got.

 

[digital dog]

If someone tells me what to do and who to contact I will write to them.
Does anyone have an email address?

 

[Undisclosed]

Sorry I am late responding but I have been away from my laptop today. If you are asking for written documentation, that is not on which my information is based, but on practical experience and verbal communication.Briefly, the situation was explained to me by two separate and I believed, reliable sources, about five years ago when I was involved with supplying information for an interview with the BBC. The story we wanted to get out to the public which related the truth of our situation had to be rehashed because it contravened the acceptable public image of ME. Such was the control, that some have decided that it was best to withdraw completely rather than a biased story be given or shown to the public. It was very frustrating. It was then explained to us that ME was under (thank you @sarah darwins for the correct term) a D-Notice, something I had never heard of at that point.

I am sorry but I am still not getting it because your explanation doesn't really explain your initial comments:

Just imagine the impact if Voices had been broadcast! It is highly critical of the medical profession's 'treatment' of young people with ME and reports on the serious damage and distress it inflicts on both their lives and those of their families. There is no way that the SMC could allow the documentary to be shown if the name of the illness was made public.

The excellent Film Voices from the Shadows could have been shown, I was informed, but the brilliant people who made it, I heard, were told that any reference to ME itself had to be removed and they refused to grant their permission to have it shown unless the name of the disease was acknowledged on the programme.

I guess, but don't know, that the SMC is the censoring body.

You are suggesting that the SMC has the power and ability to censor what is shown on TV in the UK. Based on 'practical experience' -- having watched lots of UK television and knowing that there are now many television channels in the UK besides the BBC -- it is highly unlikely that the SMC has the extended power to go beyond research and censor documentaries made by non-scientists. What you explained above doesn't really translate into the claim you made regarding the SMC. You said you didn't know, ie., you guessed that the SMC was involved.

I very much understand that the people associated with the SMC have promoted and engaged in some pretty nasty propaganda and really we shouldn't repeating stuff about them that has very little or no direct support. They need to be wiping the collective egg off their faces (and I can't wait to hand them the kleenex for that) not us.

I think it would be an interesting project especially with all the stuff coming out about the dishonesty in the PACE and the promotion of SMC related propaganda to actually try and get a TV channel to air the documentary -- but then there is the problem of trying to get people to watch it. These days to get something on TV it has to be a money-maker and be relevant to a wide audience. I think maybe that why it, as well as many other documentaries about many things, don't make it onto tv -- not sexy enough, not a money maker.

Who needs the TV these days any ways -- you can reach a huge audience via the internet -- SMC can't censor the internet or can they?

 

[worldbackwards]

think it would be an interesting project especially with all the stuff coming out about the dishonesty in the PACE and the promotion of SMC related propaganda to actually try and get a TV channel to air the documentary -- but then there is the problem of trying to get people to watch it. These days to get something on TV it has to be a money-maker and be relevant to a wide audience. I think maybe that why it, as well as many other documentaries about many things, don't make it onto tv -- not sexy enough, not a money maker.

I suspect that it's too much of a minefield. D-notice or not (and yes, it sounds highly unlikely), the psychiatric lobby have plenty of friends in high places and I think Sarah is right that pressure is likely brought to bear over cases like this in an unofficial way.

The best TV representation on ME I ever saw was a Panorama documentary on the treatment of children with ME in 1999. It wasn't for the feint hearted. I refuse to believe the political aspect is too boring to be seen - that it isn't is part of the problem.

 

[CantThink]

If someone tells me what to do and who to contact I will write to them.
Does anyone have an email address?

The only thing I can come up with is this:

http://voicesfromtheshadowsfilm.co.uk/contact/

 

[slysaint]

As I posted on another thread about vfts film, I understand they want to raise funds but its quite difficult to actually see the film unless you buy the DVD, and the only people likely to do that are ME sufferers. As its trying to raise awareness this seems a bit self defeating. Isn't it time to make it available to view, free to all, say on YouTube?