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Research – benefits and frustrations

23/08/2012 //  by Michelle Berridale Johnson//  Leave a Comment

I have only just realised, belatedly, that you are able to subscribe for email updates on specific research threads in our huge research and news forums. (For any of you who are not aware of them, these are John Scott’s weekly, and sometimes daily, updates on new research and events within the allergy world.  There are sixteen individual ‘feeds’ covering everything from food allergy and intolerance to mental health and taking in coeliac disease, digestive conditions, autism, eczema, vaccination and many more on the way.)

Subscribing is easy but you do need to log in (and therefore register if you are new to us). Once you have done so, go to the forum, and then the thread, in which you are interested and follow the instructions in the drop down menu ‘Thread tools’ from the double green horizontal bar.

This is, obviously, extraordinarily useful, especially if you have a particular interest in a particular subject. John’s efforts in corralling all the latest news and research (he now has two different threads, one just for research reports and the other for more general news around the subject) into one place can save hours of web-combing. Moreover, because  he has now been at this for some years he has developed sniffer-dog expertise both in unearthing the most obscure, and therefore most fascinating and otherwise unreported, items  and in sorting the research wheat from the chaff. A really exciting resource that we can offer FoodsMatter visitors.

But fantastic though access to all of this research is, one must remember, none the less, to approach research with a critical eye and an open mind. And this applies not only to each individual report but to the premise which underlies modern research, that ‘averaging out’ the results of a trial will allow one to draw a ‘useful’ conclusion. Although the conclusions drawn are often extremely useful they rarely take into account the fundamental fact that trial participants are individuals and may therefore react differently to the substance/drug/treatment being trialed. So the fact that it works well for a majority of  the participants does not necessarily mean that it will work well for everyone (the assumption underlying approval of drugs/treatments for general use) – merely that it may work well for a majority of the population and therefore, by definiton, not well for the minority. Yet, once a drug or treatment has been ‘approved’ it is handed out to all regardless.

A few weeks ago I quoted an Orthomolecular News piece which developed this theme in  great detail and they are certainly not the only people to question the concept. Just on our own patch, read Dr Harry Morrow Brown back in 2008; he was scathing about the the use a meta-analyses (carrying the above principle to the ultimate) with respect to dustmite research.

Dr John Briffa is another who is sceptical about much of the research which appears in medical magazines, although his main concern is the manipulation of trial results – see this post and several others on his blog. On this subject see also Dr Lucija Tomljenovic on the goings on at Joint Committee on Vaccination and Immunisation (quoted here before). And, for a primer on ‘how to read a research report’ and not get taken in, read Dr Jayne Donegan’s presentation at the 2011 BSEM conference – also quoted here before.

However, all of that aside, other frustations await the general reader – or, more pertinently, the sufferer from some condition about which research is being carried out. The most devastating has to be a report of some preliminary research on a treatment for your condition which looks really promising – but, which will not be available to the patient for another four or five years. This is bad enough if you have a debilitating but not fatal condition, but how horrendous if you have what appears to be a terminal condition and you will be gone before that potentially life saving treatment is available….

Far less crushing but still frustrating are the trials which merely confirm something which is already screechingly obvious to anyone who lives or works with a specific condition. The recent research from Southampton General Hospital showing that allergies were gender related (daughters inherit them from their mothers and sons from their fathers) falls slightly into this category and I hear myself (and others) muttering: ‘Well, we all know that! Could they not have spent their  money researching something more useful….’

But the fact remains that, like it or not, we are a statistics driven society and in order to get things done, you need to be able to quote ‘reliable’ figures. One of the significant factors in the poor provision for allergy within the NHS has been the lack of any reliable research-based data on allergy sufferers within the system. ‘Well, how can we do anything about them, we don’t know how many sufferers there are, where they are or what they suffer from…’ And it is that kind of very basic research on who suffers from what, and in what relationship to whom, that paints the picture needed to enable remedial action.

So, grumbles aside and caveats accepted, we do need this far from perfect system – we just need to use it, as with most things, with circumspection. How fortunate that we, at least, have John Scott to assemble, vet, pre-digest and list the most useful, helpful and interesting nuggets for us! So just log in and subscribe to those News and Research Forums!

 

 

Category: Allergies, Alternative/Complementary Health, Conventional Medicine, Food/Health Policy, VaccinationTag: allergies within the NHS, Dr Harry Morrow Brown, Dr Jayne Donegan, Dr Jon Briffa, Dr Lucija Tomljenovic, drug trials, food allergy and in tolerance, FoodsMatter research forums, individuality of the patient, John Scott, Joint Committee on Vaccination and Immunisation, manipulation of drug trial results, mental health, meta analyses, on going research threads, Orthomolecular news swervice, research, research reports, Southampton General Hospital, vaccinations

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