• To provide an opportunity for people who are usually invisible and unheard to speak for themselves, so that their situation can be seen and understood more clearly.
• To show evidence of the devastating impact this physical disease has on individuals and their carers and families.
• To bring to more public notice the plight of ME sufferers.
• To help change a widespread lack of comprehension based on general misinformation, vague definitions, guessed numbers and statistics, to the development of empathy and concern for those who are so ill.
• To educate the medical profession, the public and others such as wider family.
• To encourage a sense of community among ME sufferers and those supporting them.

It will contain pages consisting of a mixture of writing and largely photographic images. The writing and photos will be provided by carers, families and, as far as possible, people with ME themselves. There will be individual pages and double spreads or groups of pages representing different families, showing the impact of the illness on all family members and sufferers and carers.

The photographic material will have various purposes. It may be documentary; may contrast or juxtapose images to make a stronger point: or photos may be used  by the artists, to respond to, work with and combine in a creative, poetic and evocative way- to make images with a more powerful emotional resonance.

We also wish to incorporate a short section of informative material on ME written by experts. 

1. First of all we would like you to tell us if you would like to take part in this project, so that we can confirm that there is still space in the book and that you are in a suitable position to contribute. It is important to keep a balance of contributors, making sure that those very severely affected – house-bound or bed-bound - are well represented. These are the very people for whom participation will be most difficult, so it is hoped that carers and family may be able to offer support in this respect and act not only on their own behalf, but also for the person they love and care for.

2. Then, I would like each family or pwme-&-carer to put together and send us a collection of material, (written, photographic, and/ or other visual contributions- drawings, diagrams etc) from which selections can be made to design pages representing each person or family’s situation. It will probably be necessary and helpful for us to be able to make a selection from the material you provide, but when each page is designed it will be sent to you for your feedback and approval - to make sure you are happy with what has been included and how you are represented.

The Written Content

This is an opportunity for people to say whatever they feel it is important for others to hear, or whatever they wish to express about their situation. It can take pretty much any form, whether it is a few disconnected thoughts or observations, a brief or longer passage of writing, or even poetry.

It could be things you have written in the past in a letter or diary, or even for pacing or documentation purposes, or it can be written specifically for the project. It can be about any aspect of life with ME, whether it is about what has happened to you, your feelings around it, your relationship to others whether friends, the medical profession or society at large, what you hope for, what you have lost, what your day to day life is like, or what you imagine your future may hold, or even your symptoms, -  or any combination of the above.

The writing could refer to, or be inspired by, the photos you send so that photos and writing are related to each other. It can be whatever you would like to share with others to help them understand, both for yourself and for other pwme.

We would like to have pieces or snippets written by all involved, if they are happy to participate- carers, family members and people with ME, or if you are too ill, perhaps you may be able to tell someone what to write down for you. If that is too difficult then don’t worry, just leave it to your carer or family to explain the situation.

It would be quite helpful, in designing the book and its pages, to have a very brief history of your illness, either as background information, or to use in the book.
Please show which material is available to use in the book and which material is confidential and for background info only. However, we would like to be able to refer to how long people have been ill and how severely they are affected.

The Images

Please could you, between you, find, sort out or take some photos to send to us for us to use (just for this project alone). See details below about how to send photos. The photos serve various purposes but the overall intention is to be able to give others a more vivid sense of the individuals involved and what life with ME is like. The photos can be quite varied. They might include some of the following-

• past and present photos of the pwme, their family or carer, 
• the environment - the bed or bedroom or wherever you spend your time.
• the window- I would particularly like to include windows, or doorways, in the images as they have a relevant symbolic function- both as view onto the outside world and as barrier.
• A contrast of places that are, or were, important to you.
• objects or activities that are/were important to you

It would be great to have some really nice/good high resolution photos that will reproduce at a larger size, but don’t worry if you don’t have a good camera, because some can be printed smaller and some will be developed and used in over-layered images to build up a more complex  images. So the kinds of image you send can be very varied, but we would like them to have a particular significance for you.

Some people do not like being photographed and if you do not want to appear in photos, that is fine. However, you could always be just out of sight in the shadows, or you could use a shot through your bedroom door into the dark, or whatever you think appropriate, to give some visual impression of your situation. It would be helpful to have plenty of  visual material to draw on in designing the pages.

Another option for sending larger files may be to use a service such as YOUSENDIT (http://www.yousendit.com) which allows a free account to be set up and files transferred to an email address.

This is up to the individual(s) involved. Ideally we would include a list of all the participants, but not directly connected to their contributions. Pen names could be used wherever necessary. Please let us know any concerns or views you have so that we can find a solution you are happy with.

'Our contact with Invest in ME and their conferences has inspired us to use our time and skills to work with IiME to bring this project to fruition.'

Natalie is a parent and carer whose daughter became too ill to continue with school sixteen years ago. Her daughter had years of slow improvements and sudden relapses; the last being severe and frightening. She was diagnosed  early on as having ME caused by the enterovirus Coxsackie B4 as well as Bornholm disease, autoimmune thyroid disease, food and chemical sensitivities and more recently pericarditis. Natalie's mother was also ill with ME, for the last half of her life.

Iain is an artist and is Reader in Fine Art at the University of the West of England, Bristol, responsible for PhD students and teaching graduate students. He has worked on a number of artists’ books (including one for the Arts Dyslexia Trust) and community art projects, and has been awarded a number of research grants for projects.
Natalie has a background in fine art and design, education and more recently Alexander technique and counselling skills.
Josh provides the necessary technical help, having worked on Macs most of his life, and as an editor, cameraman and technical support for production and post production companies.

Email-  mebook@investinme.org

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