MEA letter to SMC regarding coverage of Hornig/Lipkin paper

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Aurator

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I won't hold my breath for an answer from the SMC. I don't know that we need one anyway.

Yes, they "provide….accurate and evidence-based information about science". The only trouble is they forgot to add "the bits of the science we want people to read".

They're news-mongers who fight dirty. The usual explanation for that is not the holding of certain principles but mere venality.
 
bertiedog

bertiedog

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Thank you @charles shepherd for letting us know that the M E Association has written to this appalling organisation known as the Science Media Centre (at least it is appalling when they are dealing with anything to do with ME/CFS).

Has anybody contacted the journalists who reported on the paper to also let them know about the clear conflict of interest involved?

Pam
 
Y

Yogi

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Did the "Science" Media Centre "experts" fully disclose their conflicts of interest?

It seems psychobabbler Peter White has forgotten that he gets money from insurer Scottish Provident and his colleague Michael Sharpe gets money from insurer Aegon in their panicky "expert" opinon.

Anyone know further information about why these were not disclosed?
 
S

Sasha

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There's a reply to the letter now from the SMC:

http://www.meassociation.org.uk/201...on-and-the-science-media-centre-3-march-2015/

Partial quote, near the end, demonstrating the complete lack of clue of the writer as to the issue of having a physical disease that's presented to the world as psychological:

Science Media Centre said:
Any organisation serious about CFS/ME should not care whether the causes of and treatments for an illness are physical, psychological, or a combination of the two. I find this pitting of psychological vs physical medicine artificial and damaging, as do the very many scientists we work with from both fields.
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He should try living with this disease for five minutes and see if he still thinks the distinction is artificial and damaging.
 
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user9876

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Sasha said:
He should try living with this disease for five minutes and see if he still thinks the distinction is artificial and damaging.
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To a certain extent the distinction is irrelevant. There is research that could lead to treatments and better understanding of disease mechanisms and there are charlatans pushing 'treatments' that don't work based on theories that are obviously flawed. It just happens that psychiatrists tend to fall into this latter category. Then of course there is a power relationship between the two groups where the latter group get the funding for clinics, research and have a media lobby despite their poor quality research.

Sometimes I think we use the physical vs psychological for short hand for other issues and that allows people like Wessely and the SMC a way in to criticise and gloss over serious complaints about their dangerous and failed treatment, misleading media statements and very poor quality research.
 
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user9876

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What I noted in the reply from the SMC is that they fail to recognise the bias in their coverage but instead just describe their process. To me the bias in coverage is pretty obvious. They say they follow their process of contacting experts and hence the clear conclusion to me is that their process is failing and likely to lead to biased coverage. Given they claim to have the same process for all issues this should be thought of as a serious organisational issue leading to a revision of their process. Unless of course they don't aim to give balanced coverage in any area.
 
A

Aurator

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The reply is contemptibly evasive, ill thought through and beside the point; entirely consistent, in other words, with the low standards the SMC otherwise operate by.

Dr Sykes mysteriously says he's previously run a press briefing with Lipkin. Is the corollary of that "but on this occasion I didn't actually even contact him"? Who did he contact exactly on this occasion and who did he get replies from? The whole list, if you please, Dr Sykes.

The last paragraph plumbs the depths of absurdity:
"Any organisation serious about CFS/ME should not care whether the causes of and treatments for an illness are physical, psychological, or a combination of the two."

It is his statement that cannot be serious. Not caring whether an illness is psychological or physical takes us back to the dark ages of medicine. Is he seriously suggesting that this would have been an acceptable response to the cause/treatment controversies that once existed over other diseases such as AIDS, for example? Is he suggesting you could ever have effectively treated HIV/AIDS without knowing whether it is physical or psychological?

The man needs to take some time out from writing about ME/CFS. In fact the SMC as a whole needs to take some time out from writing about ME/CFS.
 
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S

Sasha

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user9876 said:
To a certain extent the distinction is irrelevant.
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I'm sorry but I've got to spectacularly disagree with you there! The public perception of our disease - an organic disease that affects multiple body systems and does so measurably - is that it's psychological and that we don't get well because we have a fear of exercise. This is the model pushed by the BPS school here in the UK, and the SMC helps them to do it.

It's a crucial distinction. It's at the very heart of how patients in the UK, especially, are having CBT and GET imposed on them and how the MRC has been failing to get infrastructure and funding going for our disease. It's at the very core of our stigma - not that we have a mental illness (there should be no stigma in that) but that we're seen as having a mental illness and denying that we have one.
 
W

worldbackwards

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Sasha said:
There's a reply to the letter now from the SMC:
http://www.meassociation.org.uk/201...on-and-the-science-media-centre-3-march-2015/
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This latest research sounded like it could be very exciting news so I wanted to ensure that as many experts could comment as possible. As per usual, I approached all the scientists on our database that work in a relevant field (immunology, biomarkers, CFS/ME) along with a number of press officers, who we ask to find us further relevant scientists. I asked for comments on the robustness of the paper, the methodology and any implications of the work.
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Are we buying that? They didn't even get a comment from neurologist idiots like Grunewald, who'd have found a reason to have a go even if the research had appeared from the heavens (peer reviewed of course). They phoned their mates, and their mates replied.

I hope we can at least agree that the very worst outcome is that patients’ hopes are prematurely raised by hyped media reporting of a biomarker ‘proven to exist’. Patients of all illnesses deserve nothing less than accurate, responsible media coverage...
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That's just satire.

The comments were mistakenly tagged under mental health on the website – they should have been tagged with CFS/ME and immunology but I was out of the office and wasn’t there to advise my colleague. This has been updated.
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iu


Any organisation serious about CFS/ME should not care whether the causes of and treatments for an illness are physical, psychological, or a combination of the two. I find this pitting of psychological vs physical medicine artificial and damaging, as do the very many scientists we work with from both fields.
Click to expand...
It really pisses me off how one side can wage war against another and then, when someone fights back, come out with all this "Oh, you're being divisive, why can't we all just be friends" bullshit. Distinctly reminiscent of the Tories attacking the weak and vulnerable and then shouting "class war, class war" whenever someone calls them on it, because 'we're all in it together'.
 
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biophile

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http://www.meassociation.org.uk/201...on-and-the-science-media-centre-3-march-2015/

Sykes said:
The Science Media Centre is an independent press office with the remit of improving the accuracy of science coverage in the UK national media. [...] In fact they all said this research is important, but that it needs to be independently verified and people shouldn’t get their hopes up too soon. I hope we can at least agree that the very worst outcome is that patients’ hopes are prematurely raised by hyped media reporting of a biomarker ‘proven to exist’. Patients of all illnesses deserve nothing less than accurate, responsible media coverage – especially when results are preliminary and in need of replication. [...] It is far more important to enable researchers to help patients and to make sure that high quality research is reported in a responsible, unhyped manner. The ME Association should welcome the fact that we achieved more measured and accurate coverage and ensured that patients’ hopes were not raised prematurely once again.
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All the emphasis on accuracy and not hyping research is laughable given their promotion, hyping, and defense of PACE. The results of the trial were exaggerated and the methodology was repeatedly described as the highest grade possible. When it comes to assessing biomedical research though, suddenly hyping research and raising false hopes is bad. It makes sense to be cautious about research, but it's the blatant hypocrisy here which is most frustrating.

Sykes said:
The idea that those who investigate psychological causes or treatments have nothing to contribute to a discussion of CFS/ME is absurd and I reject your suggestion that their views should not be sought. It should be a case of adding the voices of others, rather than removing theirs. [...] Any organisation serious about CFS/ME should not care whether the causes of and treatments for an illness are physical, psychological, or a combination of the two. I find this pitting of psychological vs physical medicine artificial and damaging, as do the very many scientists we work with from both fields.
Click to expand...

But the subject of the paper in question is specifically about immune biomarkers or pathology, not a discussion about CFS in general. So it makes sense to seek (mostly) the views of relevant experts in that field, not just the usual psychiatrists etc. Any organisation serious about accurate reporting or fair representation shouldn't be using tired old red herrings and straw man arguments to ignore issues about accurate reporting or fair representation!
 
Antares in NYC

Antares in NYC

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Sasha said:
I'm sorry but I've got to spectacularly disagree with you there! The public perception of our disease - an organic disease that affects multiple body systems and does so measurably - is that it's psychological and that we don't get well because we have a fear of exercise. This is the model pushed by the BPS school here in the UK, and the SMC helps them to do it.

It's a crucial distinction. It's at the very heart of how patients in the UK, especially, are having CBT and GET imposed on them and how the MRC has been failing to get infrastructure and funding going for our disease. It's at the very core of our stigma - not that we have a mental illness (there should be no stigma in that) but that we're seen as having a mental illness and denying that we have one.
Click to expand...
Absolutely agree with this point. The distinction between physical and psychological is crucial, and the lack of such distinction has undermined research and treatment. Furthermore, it has allowed utter abuse of ME/CFS patients and misdiagnosing sufferers for three decades now. It also gave wings to the UK Oxford school to hijack this illness and turn it into their cash cow, simultaneously further abusing patients and denying the care they truly needed. But let's not forget, the CDC started this in the 1980s (read Osler's Web).

In my personal experience, if my own doctors had taken me seriously instead of pumping me full of worthless antidepressants, then it wouldn't have taken me 14 years to get a diagnosis. Fourteen-friggin-years of wasted time, money and efforts, while being prescribed the latest nsri du jour or being told to "man up." It was "all in my head", don't you know?

So yes, it matters. Any steps towards finding biomarkers matter. And anything that finally makes the medical community take this illness seriously does matter tremendously. We wouldn't be in this deep dark hole if the attitude towards this illness would have been different back in the 1980s.
 
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