IVI made some very strong points in my opinion, and seems acutely aware of how arguments that make perfect sense to us are perceived differently by others. The message so often does not translate, and I hope readers are taking IVI's feedback and suggestions seriously. I think he's basically right about 'what works' and how certain natural 'campaigning' responses and reactions are perceived.
I've responded pretty negatively to IVI on this thread, but I think he has said some insightful stuff, such as the following:
Pemberton is effectively playing the role of a 'shock jock' using controversy to get reaction - poking an ants' nest to watch how the ants run about and then say "look at all those silly ants" to the amusement of his audience. The audience (Daily Telegraph) is exclusively conservative, primarily middle class and heavily middle aged; Pemberton is fully aware of 'the science', but his roll as a Columnist is not to convey accuracy or reason, but to excite the prejudices of his audience. Arcane arguments about PACE or quotes from academics not openly conservative aligned, are not going to have much purchase in the DT audience. There probably are ways to write a response to Pemberton that could have a positive influence, although I wouldn't trust my very much non conservative perspective to confer the necessary insights.
In the end I think it comes down to whether there is a confident and assertive (as opposed to aggressive) alternative presentation of what M.E/CFS and living with M.E/CFS means. Part of that would entail abandoning anything that might seem to suggest conspiracyism, victimhood, a lack of resiliance to criticism and an acceptance of crankery...
...above all though abandoning a description of M.E/CFS that involves saying what it isn't (psychiatric) because to do that only endorses the message that it is in fact 'psychiatric'. It's the basic psychology of denial that when over repeated it evinces disbelief in the denier and a subliminal acceptance in the audience that what is denied is in fact the truth.
Although there is some logic in the last two quotes, they are also in danger of being patronising.
I think that many patients are involved in intelligent, reasoned and well informed advocacy work.
I also think it's a bit ridiculous that we can't deny that we have a psychiatric illness, in case it reinforces the belief that we do. I do see some logic here (i.e. we don't want to look like we "doth protest too much"!), but I think we can still express our opinion about the nature of the illness, and provide evidence in terms of the results of the FINE Trial, and the PACE Trial, etc.
IVI is in danger of portraying us as child-like idiots screaming: "I don't have a psychiatric illness! I don't! I don't!"
Yes, it's helpful to make a careful argument in favour of biomedical research and treatment etc.
And I think we need more resources available to us.
I don't know where the patient organisations are in all of this.
There should be a webpage available which we can provide a link to, or which we can quote, which makes the case for the biomedical nature of ME, so we don't have to make a new argument each time, from scratch.
This should include a comprehensive list of symptoms.
And the most convincing biomedical research should be listed.
The PACE Trial and the FINE Trial should also be summarised in the same place.
And the various diagnostic criteria should be listed together.
If we had a wiki on phoenix rising, we could perhaps make an attempt at such a project.
In the case of responding to articles like this one, and the arguments about 'psych' vs 'biomedical' issues, I think there is only one simple point that needs to be made: one fact that the public need to be aware of. It's the fact that classification of an illness as 'psychological' makes it ineligible for long-term insurance payouts. I say it's a fact...but I haven't checked it...and I would dearly love to see a referenced and provable explanation of how that works - any laws that allow this and any insurance policy statements to demonstrate it.
I don't know the absolute facts either, but I have read that insurance payments for psychological illnesses in the USA are available for a much more limited amount of time. I don't know if health payments in the USA might include replacement wages, but if they do, then the savings would be massive, if payments are limited to just a few months or just a couple of years.
Edit 1: I see Jarod has provided some good evidence.
Edit 2: Yes, Jarod's document confirms that the insurance payments are intended to replace wages.
People can very easily understand that patients are angry about their illness being labelled psychological simply because that means insurance companies don't have to pay out. People can totally understand what is going on there, and really I think that is just about the only thing we need to be saying, in our campaigning, about this question. A well-referenced, evidence-based series of 3 sentences that demonstrates exactly how it is. Without a hint of conspiracy - because you don't need to be a conspiracy theorist to believe in the concept of "conflict of interest", or to understand that money talks.
That "fact" (?) that insurance companies don't have to pay out (after 2 years) for "psychological" illnesses is the absolute key to this argument. Nobody I have spoken to (in real life) is aware of that fact, and it changes everything: I've seen the light bulbs going on when I mention that point.
Are you sure about this approach Mark, because I've seen someone on Twitter using this as an argument against us... They were questioning why we would be so against a psychiatric diagnosis, and wondered if it might be to do with insurance payouts. Maybe the argument would have a different outcome depending in which country you make the argument (e.g. UK vs USA)?