THE TURRET at FoxleyTowers; is a new FaceBook page. The proposed purpose of the page is to provide an in road to a ‘meaningful participation’ platform for professionals and those with ME/CFS and those with caring responsibilities across all age groups. It is likely that some professionals will have personal experience of ME/CFS and some professionals will have caring responsibilities.

By professionals I am meaning those qualified within their specialist field for example; primary care, health services, alternative and complimentary therapies, social care, community care, education, housing association/ government funded housing and sheltered accommodation, councillors, voluntary organisations providing community services, welfare benefits and law, employers, prisons, armed forces, media. This is probably not an exhaustive list. 

ME/CFS potentially effects people in all walks of life, all aspects of their life, globally. My thinking is that it is therefore not unreasonable to develop a joint working and meaningful participation approach to discuss practical ways to support and enable; those with chronic disease and those with caring responsibilities across all age groups.

It is important to hear empathetic views, relevant experiences and realistic ideas in relation to reasonable practical support needed to enable those with ME/CFS to manage their condition in better ways.

It is equally important to help professionals, decision makers and those who are able to facilitate or provide support to have a better understanding of ME/CFS to enable them to help those who need support.

The aim would be to identify support needed and collate the discussion findings. Explore appropriate channels and realistic opportunities to facilitate the development of beneficial support for people with chronic disease. Secondly, to follow the same process to facilitate support for those with caring responsibilities.

The Internet provides a potentially far reaching audience in terms of participation and therefore knowledge, experience, views and ideas. Understandably not everyone will want to contribute to all discussions all of the time for many reasons; no interest, little knowledge, low energy levels, high work load and other more pressing responsibilities.

What is important is that overall some people participate some of the time; joint working to promote a less stressful and better quality of life could lead to a more productive life in terms of achieving goals and aspirations in the long term for all those effected.

The group is at its early stage of development and any input to possibly further develop aims and facilitate those aims and/or offers of virtual page Admin support will be welcomed. Also, I will periodically be inviting people to submit short current discussion articles in the future with a view to publishing them on the FoxleyTowers website.

Additionally, a London publisher who is familiar with my style of writing has asked me to think about putting together a draft proposal ‘Self Help Book’ and I will be writing it this year with a view to presenting it for consideration this summer. Members of this proposed group will potentially, over the coming months, be given specific opportunities to feedback experiences in relation to living with and for example coping strategies in relation to ME/CFS.

In the meantime, would you like to put forward a subject/ask a question/ or raise an issue for discussion to start the ball rolling?     

If you think that you might be interested in some of The Turret discussions please press ‘like’ on the FaceBook page advertisement on the right-hand side of the page. 

Good News: The Facebook Turret Page has now been fully activated as it has 40 people following and wanting to be involved in future discussions. The Turret page has been activated as a ‘private group’ meaning that those who wish to join the group will have to request and be approved to join the group.

In view of; global time zones, possible health issues and work schedules of participants it is envisaged that discussions will run for a few weeks or as long as necessary.

Please note that the The Turret at FoxleyTowers Facebook page and this website is not a place to debate whether the disease exists or its possible origin, latest research/pharmaceutical trials and findings, latest cures, fund raising or where it sits within the worldwide medical arenas. Appropriate ground rules will be set, mutual respect will understandably be expected.

[Short articles will be published quarterly from this website, which to some degree, will be subject guided by ‘followers of foxleytowers’. Followers can opt for being notified via email when articles are published on FoxleyTowers. To receive articles please subscribe free by giving your email address in the box provided on this website, where the box is will vary according to whether you are on an e.g. laptop, i-Pad or iPhone.]

All comments, views and ideas will be appreciated, I look forward to hearing from you,

Editor: Cass Jade Foxley

Photograph: Cass Jade Foxley

4 January 2017