Lipedema – the debate

There is a debate in the world of Lipedema which Coco now spells not as Lipoedema in order to avoid the suggestion that oedema (water based fluid) is present in the dsytrophy which is called lipedema1. Coco has referenced the debate in other articles – here and here. The video referenced below produced by Colin Mockery (is that a pen name like Coco?) is quite long but an excellent literature review for anyone who has either the smallest interest in lipedema or who is looking for an example of how to review literature and present the results of such a review. The reader must understand that in saying this Coco is not condoning the conclusions of this particular review. Coco is merely saying it is a good example of a review. For an assessment of the conclusions of the review the reader must look elsewhere, in particular any reply that may have been prepared by any of those who were subjects of the review.

Before Coco says any more he should declare that he is not unbiassed and if you have read any thing else you, the reader, will understand the bias. Coco also understands that none of the parties to the debate promoted either directly or indirectly, the review or the production of the video.

It is a fascinating story. Coco understands why some at the ILA or the Concensus would want to either suppress or advertise the video, but Coco would wish to be cautious about the way it is done. Whilst the review has at its foundation a good literature, in the broadest sense of that word, review, the tone in which the conclusions are presented, do not become a cautious, intelligent enquirer into truth, but rather more speaks of the polemical promoter of a particular cause. A suppression of the video would be seen as an attempt to silence free speech, whereas a promotion could so easily be perceived as a gloating over the ‘enemy’. We must not rejoice over the fall of others nor seek to find ways to make them fall, for we are as frail as they are, so concerning promotion of the video, Coco would want to add a statement something like (whilst the author himself makes much the same point close to the end of the video, you yourself must judge the manner in which it is made.):

‘whilst we agree with the scientific conclusions of this examination of the literature, at the same time recognising the limitations in our knowledge, we do not endorse any attacks upon any of the individual practitioners mentioned who, we believe, intend only the best for their patients even if it may appear that they may have been misinformed or may not have used or promoted the most appropriate treatments in their practices. Attacks upon individuals merely strain relationships and hinder our efforts to work towards a common evidence-based understanding of the underlying causes and best treatments available for this debilitating condition, which we call lipedema. We must remember that each one of us has taken a journey to reach where we are today, having ourselves also made mistakes and having been in need of correction by others.  Our understandings are limited, and any criticism we make must be made with both humility and compassion, and with the recognition that we may also be found wanting as understanding of the condition develops. ‘

Coco can see at least one cultural problem though for whilst Luther and his contemporaries would happily speak directly against persons for the ideas they hold and promote – indeed Luther himself was likened to a bull by the Pope of his day, and perhaps such personal attacks could be used effectively with the response ‘If I be a bull, let me show what kind of bull I can be’ – such an approach is not the best to use today in some societies. Could a modern German be asked to speak in such a way that if, whilst he is attacking the teaching of Mein Kampf, at the same time he would be defending the writer thereof? Surely that would be completely counter cultural. We must be careful that we do not impose our own cultural judgements on others in the particular forms of words they choose to express disagreement. If even native English speakers can be misunderstood when speaking across different English speaking cultures, those who are native English speakers must bear with the frailties of those who are translating into another foreign language and do not understand that the form of words chosen, which may be understood in Birmingham, Alabama, may not be understood in the same way in Birmingham, Warwickshire.

There were some other aspects than the attacks upon the individuals, with which Coco was not happy in the video for example, the use of the comic music behind some of the video clips of Dr Karen Herbst and Linda-Anne Kahn(?) were prejudicial, unhelpful and disturbing. Coco could see why it was thought appropriate, but it was unnecessary (unless the music was also behind the original videos of course). The words used were enough in themselves to get across the point that was being made. Secondly, the use of irony in the apparent pretence of a denial that there was a commercial motive behind their public statements despite the presentation of evidence that suggested quite clearly that there is a financial conflict of interest may not be what you want to find in a literature review, even though there are good examples of it in English literature itself; Shakespeare used the very technique in Mark Anthony’s speech after the murder of Caesar, perhaps with good cause for if he had not Mark Anthony may himself have become the object of a second murder. It may be a good literary or oratorical technique, but it behoves the scientist to avoid it.

Coco commends the video for your close attention. There is much to learn from it, not just about lipedema, but about what we do not know, and about how not to present your findings. Listening at 1.25 times normal speed will work, and reduce the viewing time, but there are sections in which the review is quoting from the literature during which you will need to slow the video down to normal speed in order to properly grasp the sense of the speakers being quoted.

1 Coco is not suggesting that oedema is absent in the presence of lipedema, it may be, and perhaps often is, present, but it is not intrinsic to the condition. The presence of oedema is a different condition which may be lymphoedema, the consequence of inflammation or some other oedemic condition.

2 Warning: As always do not take medical advice, or understanding, from Coco. Whilst Coco may be able to think scientifically, his hypotheses are often untested and perhaps some would say ill-founded.

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