This post is only if you’re not bored of the rather trying electrosensitivity lobby. Here is a letter which has popped up all over the interweb, I assume it is genuinely from Dr Carlo, who is hawked about as a rather eminent figure, and not a fake created in an effort to smear him.
The Radiation Blob, Indeed
Dr. George L. Carlo
Sat, 02 Jun 2007
To the Editor of The Guardian:
I am appalled by the insensitive, mean-spirited and factually incorrect opinion put forth by Andrew Goldacre in The Guardian (Saturday, June 02, 2007). His premise, that patients suffering from symptoms of electro-hypersensitivity are misinformed hypochondriacs, reeks of the adage: Ã¢â‚¬Å“Those who are saying donÃ¢â‚¬â„¢t know; and those who know, arenÃ¢â‚¬â„¢t saying.Ã¢â‚¬Â Goldacre does not know. It is time for those who know to speak up.
For the past five years, through our Safe Wireless Initiative project, we have operated the only post-market surveillance database in the world systematically collecting symptom information from thousands of patients suffering from the effects of various forms of electro-magnetic radiation (EMR). In addition, we coordinate a network of clinicians who regularly share information about their experiences treating patients with these conditions, another important and unique resource. Thus, we do not rely solely on self-reported information but have corroboration from treating doctors. It is noteworthy that our health concerns registry will open in the UK through a new local Safe Wireless Initiative branch within the month. This is an important public health step because in the UK, there are absolutely no reliable data on the incidence and prevalence of EMR-related conditions. Thus, GoldacreÃ¢â‚¬â„¢s speculations are all the more misinformed, but clarity is forthcoming.
In the Safe Wireless Initiative, we have a number of scientific papers in various stages of the peer-review process expected to be published by yearÃ¢â‚¬â„¢s end addressing this emerging medical problem. However, in the interim we continue to share summary information from our registry database in various fora around the world, including a February 2007 presentation at the House of Commons, for the benefit of clinicians and patients alike.
Overall, our data show the following:
* There are symptom and pathology similarities among patients suffering from electro-hypersensitivity, multiple chemical sensitivities, alcohol-related disease as well as neuro-behavioral and learning disorders. We refer to the symptom constellations as Membrane Sensitivity Syndrome (MSS) and the increase in reports of symptoms consistent with MSS associated by patients with various EMR exposures has dramatically increased over the past 24 months.
* It is noteworthy that concurrently in the past 24 months, the penetration of mobile phones has tripled globally, from one billion to three billion. WiFi has reached the highest penetration in history. Satellite radio is not far behind. All of these technologies rely on information-carrying radio waves, the trigger for non-thermal adverse biological responses and the cascade toward MSS.
* In a majority of MSS cases, when EMR is removed from the patientÃ¢â‚¬â„¢s environment, their acute symptoms subside. This is an important observation and indeed represents one of the Koch-Henle postulates for causation: If when the exposure is removed, the effect is diminished, there is evidence for cause and effect.
* Pathology and experimental findings support a mechanistic underpinning: an environmentally induced genetic change that renders daughter cells to carry membrane sensitivity characteristics with most symptoms directly or indirectly the result of consequent disrupt of intercellular communication.
* Therapeutic intervention regimens designed around known EMR mechanisms of harm have positively shown varying degrees of clinical symptom amelioration, another support for the causal hypothesis, but more importantly, a ray of hope for those afflicted and debilitated by these conditions.
It is a fact that every serious public health problem man has faced has first been identified through clinical observations, the historically confirmed first line of evidence for preventing epidemic spread of disease. It is a disservice to the public when uninformed speculation serves to lessen the acuity with which important early signs that can save lives are seen and heeded.
I’m afraid I can’t help noticing that his opening sentence is a bit wide of the mark. My name is Ben Goldacre – I do hope the rest of Carlo’s work [coughs] doesn’t reveal a similarly slapdash approach to accuracy – and I don’t think what I wrote on June 2 2007 is “insensitive” or “mean-spirited”, it was a rather short, clear and valid critique of an article in the Independent which itself was rich in scientific claims. You can read the pieces for yourself verbatim right here (the Independent, mine, her later one) and decide for yourself, because they are clearly linked, and anyone can see and discuss them for themselves. There is no room for obfuscation about who said what here.
I’d also hope that if someone was going to say that something from Andrew Goldacre was “factually incorrect” then they might spare the time to point out some incorrect facts in his work.
But most drearily of all, Dr Carlo explains that Andrew Goldacre’s “premise” is “that patients suffering from symptoms of electro-hypersensitivity are “misinformed hypochondriacs.” Nothing could possible be further from the truth, and on every single occasion Andrew has written on the subject he has made this very clear indeed (you can see everything I’ve ever written on the subject here). As I have said every single time I have ever mentioned the phenomenon, these symptoms are very real and deserve our compassion; but there is also a very real question about what causes them, and it is important to discuss this, in order to fully understand it, and to do something useful to prevent and ameliorate real human distress and suffering.
These bizarre accusations from Dr Carlo (and others, I’ve got a big old file building up I’m afraid) are clearly designed to close down any discussion or debate on the issue. The discussion of the data from the 37 provocation studies is effectively policed in this fashion: nobody is permitted to discuss what causes the symptoms that these people experience, because if they dare to do so, they will be accused of being insensitive, and of denying the very existence of the symptoms.
I would have expected this kind of behaviour from a rabid blogger, or in a private email, or from Rod Read of lobby group “Electrosensitivity“, but to find it from Dr Carlo, who is always presented as an academic figure with something valuable to say, is – and I mean this very honestly, rather than censoriously – a bit disappointing, because you do hope that there is someone out there who is able to present the case for a given interpretation of the data clearly and accurately.
Dr Carlo has a theoretical biological hypothesis about how electromagnetic signals might cause the symptoms that some people report in association with exposure to such signals, and although it’s currently very theoretical, that doesn’t mean it’s not interesting. It would also be very good to see him address the issue of the provocation studies. It may well be that he – or whoever from that lobby who is in a position to address this kind of data and reliably get the facts (or even the names) right – has some valuable criticisms of the methodologies of these studies. That is always useful and interesting.
As you might have picked up, I am starting to find popular rhetoric really interesting, and in that vein I do wonder if what we have seen with the electrosensitivity lobby is a product of their extraordinarily uncritical ride in the UK media. Through this, and their bullying to shut down anybody who dares to even discuss the provocation study data, the ideas and the evidence have not been subjected to the kind of rigorous discussion and debate that would improve and resolve them. In some respects I’m afraid I see Dr Carlo’s letter to Andrew as a product of that process. This failure to engage meaningfully with the critiques of others can only be to everyone’s detriment, and particularly those who suffer with symptoms.
Oh, and the fact that he may even be defending and endorsing the blatant quackery I was actually criticising hasn’t entered your mind. Don’t go there. It’s too awful even to consider.