BBC interview with Ron Davis

[Seven7]

What we need is David Tuller to interview the reporter!!!! Or at least let him know what happened.

 

[Seven7]

Also maybe move the conference to a country where real reporting can happen, this is a lost media opportunity.

 

[IThinkImTurningJapanese]

He told him that England is the laughing stock of the entire world scientific community with regard to the treatment and protocols and bad science on ME/CFS.

There is nothing more expensive than regret.

 

[Esther12]

James Gallagher has just promoted Science Media Centre BS uncritically, so if it was him I'd expect him to be rubbish. Who knows - maybe he was asking probing questions as part of a rigorous pursuit of truth? Seems a bit unlikely.

 

[sarah darwins]

James Gallagher has just promoted Science Media Centre BS uncritically, so if it was him I'd expect him to be rubbish. Who knows - maybe he was asking probing questions as part of a rigorous pursuit of truth? Seems a bit unlikely.

There's an illuminating blog post by someone from a marketing firm that specialises in pharmaceutical branding, summarising what the marketing guys got out of a visit by 'celebrity' (her word) James Gallagher:

https://publicislifebrandsresolute.wordpress.com/2015/10/23/bbcs-james-galagher-visits-plbr/

If it's an accurate reflection of what JG was telling them about how to get a story onto the BBC health news website, then it explains a lot.

 

[Esther12]

There's an illuminating blog post by someone from a marketing firm that specialises in pharmaceutical branding, summarising what the marketing guys got out of a visit by 'celebrity' (her word) James Gallagher:

https://publicislifebrandsresolute.wordpress.com/2015/10/23/bbcs-james-galagher-visits-plbr/

If it's an accurate reflection of what JG was telling them about how to get a story onto the BBC health news website, then it explains a lot.

That is sickening. Thank God for David Tuller. I need to go back and make another donation.

 

[sarah darwins]

That is sickening. Thank God for David Tuller. I need to go back and make another donation.

Sickening is right (as well as one of the most atrocious pieces of writing I've come across in a long while).

It starts:

On Monday the 12th of October a lucky few from across a range of agencies and press offices within the pharmaceuticals and healthcare space braved the lonely darkness of the early morning for a special event.

As we rubbed our weary eyes and revived ourselves over a steaming hot cup of tea in the Admiral room, the atmosphere was buzzing with anticipation.

A celebrity was in our midst.

James Gallagher of the BBC ....

So just to be clear, this appears to be the health news website editor (or possibly just a reporter in 2015 when this one happened) from the publicly funded BBC, visiting a group from "across a range of agencies and press offices within the pharmaceuticals and healthcare space" to tell them how to get their press releases converted into coverage on the BBC.

By 'eck, it's a golden age for journalism. As you say, Esther, thank God for Tuller and a few other independent, principled souls.

 

[Tom Kindlon]

The first question was something like, Do you support taking sick kids away from their parents when they refuse to follow established protocols?

I have been dealing with a BBC journalist who has been working on a story on the child protection and ME issue. My impression is that he is not a fan of it [child protection procedures being used]. So I'm not sure the journalist should be condemned or reported or anything else like that at this stage.

 

[sarah darwins]

I have been dealing with a BBC journalist who has been working on a story on the child protection and ME issue. My impression is that he is not a fan of it [child protection procedures being used]. So I don't think the journalist should be condemned or reported or anything else like that at this stage.

I get what you mean. But Janet did say that Ron and others were shocked by the reporter's approach. It doesn't bode well.

Point taken, though. I'll shut up until a story comes out. If it does.

 

[Esther12]

I have been dealing with a BBC journalist who has been working on a story on the child protection and ME issue. My impression is that he is not a fan of it [child protection procedures being used]. So I don't think the journalist should be condemned or reported or anything else like that at this stage.

I guess there is a danger that problems with the BBC's past coverage means that people were overly concerned about probing questions in this area, and misinterpreted what was happening.

Could also be that different people at the BBC are pushng very different angles?

 

[Tom Kindlon]

I have been dealing with a BBC journalist who has been working on a story on the child protection and ME issue. My impression is that he is not a fan of it [child protection procedures being used]. So I'm not sure the journalist should be condemned or reported or anything else like that at this stage.

He may be looking for particular types of quotes (A) and already have other people saying other types of things (B) and not need more people saying B types of things. I have been giving him background information but have not been recorded. He rang me last week and also again yesterday so it seems a good chance that it is the same guy.

 

[user9876]

I think there is something much darker and more sinister going on, and I don't beleive this is mere paranoid conspiracy theory. It all starts with the question: why did the DWP part fund the PACE trial, something they have never ever done before or since?

I think it is easy to read conspiracy into how PACE is treated in the UK but I don't think that there is some big conspiracy. Instead I think it represents a culture and views of a lot within the medical (and associated) establishments. To me it is about them feeling superior and wanting to assert that by putting other people down. Hence they enjoy the idea that a group of people think themselves ill as they can put that down to weakness - hence also believing the opposite that they are well and healthy (and deserving of privileged) because they are strong and clever. I think many doctors do look down on patients and that has been a long term attitude. This group also like to be seen as the guardians of science without a real understanding but anything that criticisms their established views and attitudes is bad and clearly bad science. I don't think it is a thought out conspiracy just that a certain group of people have bad attitudes and have been allowed to grow those attitudes between themselves without challenging voices. I would see it as a process similar to how groups justify racism or other forms of hate.

I think the DWP funded PACE as a vanity project because Alywood was the scientific adviser at the time and interested in pushing these views.

We should see this approach as prejudice born out of a need for those individuals to seem superior rather than a conspiracy. And we should treat their press campaign as hate speech.

 

[user9876]

I guess there is a danger that problems with the BBC's past coverage means that people were overly concerned about probing questions in this area, and misinterpreted what was happening.

Could also be that different people at the BBC are pushng very different angles?

Its a mistake to consider a massive organisation like the BBC as having particular views. For example there has been some good coverage from local radio/news. I see it as a problem with the medical correspondents across the media rather than a BBC issue.

 

[jimells]

There is so much smoke emanating from various conflicts of interest that an official Parliamentary report called for a proper investigation ELEVEN YEARS AGO:

UK Parliament Group on Scientific Research into ME (The Gibson Inquiry)

"CFS/ME is defined as a psychosocial illness by the Department for Work and Pensions (DWP) and medical insurance companies. Therefore claimants are not entitled to the higher level of benefit payments. We recognise that if CFS/ME remains as one illness and/or both remain defined as psychosocial then it would be in the financial interest of both the DWP and the medical insurance companies."

"[There are] numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here."

https://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome#Political

It's not too late to find the fire.

 

[bullybeef]

I think it is easy to read conspiracy into how PACE is treated in the UK but I don't think that there is some big conspiracy. Instead I think it represents a culture and views of a lot within the medical (and associated) establishments. To me it is about them feeling superior and wanting to assert that by putting other people down. Hence they enjoy the idea that a group of people think themselves ill as they can put that down to weakness - hence also believing the opposite that they are well and healthy (and deserving of privileged) because they are strong and clever. I think many doctors do look down on patients and that has been a long term attitude. This group also like to be seen as the guardians of science without a real understanding but anything that criticisms their established views and attitudes is bad and clearly bad science. I don't think it is a thought out conspiracy just that a certain group of people have bad attitudes and have been allowed to grow those attitudes between themselves without challenging voices. I would see it as a process similar to how groups justify racism or other forms of hate.

I think the DWP funded PACE as a vanity project because Alywood was the scientific adviser at the time and interested in pushing these views.

We should see this approach as prejudice born out of a need for those individuals to seem superior rather than a conspiracy. And we should treat their press campaign as hate speech.

Unfortunately, the austerity cuts suggests the biopsychosocial model has been rolled out since the practice proved feasible for PwME: http://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-research-a_b_9726490.html
& http://www.disabilitynewsservice.co...-cuts-is-cavalier-unevidenced-and-misleading/

And FOIs have displayed a need to quell DWP/Govt responsibly: http://www.mirror.co.uk/news/uk-news/thousands-die-after-being-declared-6348067

There's plenty of documentation of Aylward working with Unum for years before welfare reform & austerity hit the UK after the 2008 economic crash.

And in recent years, cuts to the NHS & the Govt connected DWP means getting relevant tests and even a diagnosis to prove Medically Determinable Impairment (MDI) is very difficult. No relevant evidence to prove symptomatology, no Social Security/Benefits.

I think the fact the NHS now has ME/CFS listed within MUS/Somatisation (Medically Unexplained Symptoms: http://www.nhs.uk/conditions/medically-unexplained-symptoms/Pages/Somatisation.aspx#Causes) with only flawed evidence to support such claims, suggests the deck is stacked.

I doubt the MUS/Biopsychosocial situation we face today is completely down how they lobbied to transform ME in the 1990s, but I am sure it gave them direction and sadly, public and media apathy allowed them to run with it.

Only PwME saw it coming and no one could care less.


Just wanted to add, its worth noting, by law, we have to pay National Insurance directly from our salaries towards our Social Security. But since Unum & DWP became embroiled, Social Security suddenly became a Benefit rather than an Insurance, and a doctors/GPs word wasnt enough. And the NHS seems more loyal towards the state than the patient, even though their funding has been depleted.

Worth watching the Ken Loach film, I Daniel Blake, to have an insight into the DWP.

 

[IThinkImTurningJapanese]

Worth watching the Ken Loach film, I Daniel Blake, to have an insight into the DWP.

Absolutely,

"The scale of suffering is immense", Ken Loach at 5:17

 

[bullybeef]

Its very simple: Oxford CFS was conceived to lump PwME within. Those diagnosed with Oxford CFS have a concealed diagnosis of Neurasthenia/Somatisation - the patient's Neurosis is the cause of their symptoms. For that reason, Social Security/Benefits can be denied, saving the Govt Millions.

The only NHS approved treatment is now highly criticised, due to proven flaws and anecdotal harms, but it remains recommended - so our health services are prescribing treatments and won't hear patient concerns. Why would a health service we compulsory pay into when we're fit and well act this way?

By advancing this, MUS is now conceived to lump anyone with symptoms which cannot be explained, including MECFS, especially when an austerity hit health service cannot afford to perform relevant tests to prove whether a patient has an MDI - Medically Determinable Impairment.

If you still consider yourself 'sick' with a MUS diagnosis, even after flawed treatment which could make you worse, Social Security/Benefits can be denied, saving the Govt Billions in Welfare payments, further testing and treatment.

Obviously we can speculation whether it's just about money. Could be a kind of Disabled Cleansing or Population Control, if we're taking conspiracy theories or are really cynical.

Money usually is the simplest and common reason, though.

 

[Maggie21]

There's an illuminating blog post by someone from a marketing firm that specialises in pharmaceutical branding, summarising what the marketing guys got out of a visit by 'celebrity' (her word) James Gallagher:

https://publicislifebrandsresolute.wordpress.com/2015/10/23/bbcs-james-galagher-visits-plbr/

If it's an accurate reflection of what JG was telling them about how to get a story onto the BBC health news website, then it explains a lot.

Eugh!! Am I the only one who somehow feels dirty and soiled by reading that sickeningly sycophantic piece. Yuk!

As you say, it does indeed explain a lot.

 

[Snowdrop]

I cannot understand a science reporter who does not have a genuinely open and enquiring mind. Maybe the best that we can hope for this time, is that having had the privilege of speaking to scientists who have been involved in the human genome project, this particular reporter will realise what he's up against and just go away and write nothing. But that he also might begin to question privately whether his friends in high places have all the answers.
I would have thought it's better to wait and see if an article is written rather than go on the attack now. Because that runs the risk of us appearing vexatious or unhinged.

The thing is. . .re: J Gallagher he probably does have an open mind on a host of other issues. But he's sold his soul for 30 silver on this issue. They (insurance etc) very likely own him on this issue.

This is why transparency is so fundamentally important to a democracy.

PS If I'm wrong about him Mea Culpa. I would like to be wrong but how to explain so much of the reporting.

 

[Esther12]

But he's sold his soul for 30 silver on this issue. They (insurance etc) very likely own him on this issue.

This is why transparency is so fundamentally important to a democracy.

I don't think that's remotely likely. I think that sort of clear-cut corruption plays little to no role in most of the problems around PACE. It's more the way people trust authorty figures without thikning critically or looking at the evidence that it the problem... and the desire for easy stories that make one feel good about oneself, etc.