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FMAUK Statement

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Category: General Information

Published on Tuesday, 06 August 2019 13:19

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In relation to a recent post on a research article, FMAUK would like to clarify some information. We as a charity will often post research opportunities for people to participate in – it is only right that we let people know the results of these as people will want to know the outcomes of them. Unless we are a stakeholder or funder we have no influence or input in the design, analysis or the final report.

Whether people agree or disagree with findings, abstracts, or journal articles it is not the charity which comes up with them, but instead is based on the results of the participants of the study itself. Also this may not be representative of the wider population or of individuals within the community but this does not in itself invalidate the results.

Some studies are conducted as part of a student’s doctoral study where they are supervised by a professor or senior lecturer. A benefit of student researchers doing this is that they achieve their educational step in a field they have interest in and may do future research in that is more substantial. These studies are of a pilot nature that may lead to more detailed research later.

We will in future posts, try to give a disclaimer to highlight that we are in no way responsible for the studies or research as well as give greater context. Fibromyalgia is different for everyone, so people’s experiences with the condition will vary – some findings may not apply to people, whereas others may feel that it does to them.

FMAUK have been fighting for more awareness and research into fibromyalgia, and will continue to do so with our awareness graphics and resources which we offer. We are primarily run and operated by volunteers, the vast majority of whom have the condition themselves, and always fight for what we believe in. Over the last year the charity employees has grown a 100% from 1.6 to 3.2 and we expect more growth over the next year but resources will always be an issue. Resources are not just funds, but peoples time and skills and often it is having the correct skills and the right time that is important.

Whilst we respect that people have different and strong opinions, we do listen and act on feedback when we are able to. But our mission is to continue to raise awareness of fibromyalgia and improve our understanding of the condition.