Hello!
I'm Martin, I'm a blogger and a journalist at The Guardian, and at the Bad Science forums I'm 'mjrobbins'. I just came over as I'm curious to know more about what you guys are about, why you support Myhill, what the deal is with Professor Wessely, et al. Bits of this I get, I had a girlfriend with CFS and I certainly understand the frustration, etc, and I think I understand why Wessely is a particularly controversial figure. Bits of it I don't get - for example I can see why Myhill was reported (the stuff on vaccines is a bit whacky), and while I agree that Wessely has some controversial ideas, he seems very genuinely concerned about CFS, and I'm not sure I understand how he was responsible for the Ean Proctor stuff, and also the stuff about my fellow Guardian columnist Ben Goldacre seems odd - I doubt he's even aware that the forum threads or complaint exist since he very rarely ventures there.
I'm fairly open minded and an equal opportunity sceptic - as well as tackling alt-med I've also gone up against people like the British Psychological Society in my time at The Guardian, and tackled the GMC over homeopathy - so I guess I'm just here to engage in a hopefully cooperative way, and learn what you guys are all about.
Over to you guys!
Hi Martin, and welcome to one of the most diverse, ordered, constructive, and open-minded forums you might encounter.
I'll try to take your points in order:
What are "you guys" about ?
This is answered by the URL "about mecfs". We are for the most part either sufferers of ME/CFS (chose your term, I'm afraid, as the med.profession can't agree on one), or carers of sufferers.
Why do we support Myhill ?
Sorry, I have to confess to not knowing a lot about this, but I suspect it's because Dr.Myhill acknowledges a physiological explanation of ME/CFS and attempts to treat it accordingly.
What is the deal with Professor Wessely ?
Mr.Wessely maintains that ME/CFS is explained by a malfunction of the brain, and that it can be resolved by addressing this malfunction. It is difficult to understand what this model is based upon, as there certainly doesn't seem to be any supporting science or evidence. Some people report recovery from ME/CFS using a technique called the Lightning Process, and the anecdotal evidence from this would seem to support Mr.Wessely's theories. Independent surveys suggest that around a third of ME/CFS sufferers gain some improvement from this approach, so it seems that a minority subset of the ME/CFS population may conform to Mr.Wessely's model of the condition.
"The deal" (forgive me if I've not fully understood that thechnical term) is that the findings in a minority subset are often incorrectly extrapolated to include the whole set.
Girlfriend with CFS and frustration
Apologies Martin, I'm not sure I understand the point. Is that you were frustrated by your girlfriends limited energy?
Mr.Wessely seems genuinely concerned about CFS
Yes, understandably so. He obtains a large part of his income from insurance companies who are terrified of the potential liabilities of crippling infectious disease.
Mr Goldacre and Forum
I can't comment with confidence as I don't know the facts. However, if it is true that Mr.Goldacre has initiated a forum which does not operate in a fair, unbiased and empathetic way as this one does, then he has a duty to visit it and moderate it. If He has no connection with the forum then I apologise.
Equal opportunity sceptic
Apologies again, does this mean that you are sceptical about equal opportunity? A personal view is that we are not all born equal in terms of ability, but that we all deserve equal opportunity, therefoe I can't understand scepticism about equal opportunity.
Alternative Medicine, Homoeopathy etc.
ME/CFS sufferers (and others) do tend to seek out alternative medicine due to the inadequacy / inefficacy of conventional medicine. I have found most of the patrons of this forum to be generally both intelligent and open-minded, therefore in respect of homeoopathy specifically, due to an absence of a scientific foundation, I would expect a healthy scepticism about its efficacy, particularly in respect of a condition such as ME/CFS.
Primarily, apart from the opportunity to offer each other mutual support and friendship, most of the members of this forum seek the truth. The psychological explanations of ME/CFS seem to have flourished, almost by default, in the absence of sound physiological ones. It may even turn out that it iis not productive to make this distinction, but this can only be concluded through quality research and analysis.
As Einstein said, Everything should be made as simple as possible, but not simpler.
ATB, Martin
Steve
