Hello everyone,

Many people have shared their M.E. stories, and it is important we continue to put our stories out there, genuine M.E. stories.to try to counteract all far more common 'miracle recovery' and psychological and/or fatigue based case studies out there of people who do not have M.E. but instead some fatiguing illness misdiagnosed as 'CFS' and just to let people out there know what M.E. is really like, how devastating it is.and so that people with M.E. can know they aren't alone too..

So I'm after submissions of photos, and a little bit of information about how M.E. has affected your life, to make some short videos for YouTube.

The idea is that I'll show your picture for a few seconds and then give the viewer some basic facts about how M.E. has affected your life.

A voiceover might say: 'This is Jean, she lives in New Zealand and has had M.E. for 15 years now. Jean has severe M.E. and is currently housebound and bedbound, and has been for the last 8 years. Jean was a nurse before she contracted M.E. but hasn't been able to work for the past 14 years. Jean has also been unable to receive house calls and so has had no access at all to health care for 8 years now. For the first few years she was ill Jean did not have the support of her family, but thankfully over time this changed and Jean's daughter is now her carer. Jean says her worst symptoms are to do with cognitive problems, and problems with memory.'

I'd really like to have some real M.E. stories out there, particularly the very severe ones (but also the moderately affected too - moderate M.E. is hell too I know!), with NO sugar coating at all. Just the facts. How our lives really are.

If you are, as many of us are, unable to tolerate much light at all, you can either send very dark pictures in (so long as they aren't just completely black!) OR you can put your hand over your eyes, then turn the lights up and have your picture taken with your hand covering your eyes. There is no point showing us in well lit rooms if that is NOT how we live.or making ourselves very ill to have well lit pictures made. (Both defeat the purpose don't you think?)

One picture is fine, but you can send in up to four (by email). Standard quality, JPEGs or TIFFs will be fine. (I'd rather not be sent videos of you as I'm unable to watch them though.)

FACTS ABOUT YOU: Please fill in at least the first four questions (the rest are optional).
1. Your first name (you can also be anonymous if you like):
2. How long have you had M.E.?
3. How severe is your M.E. currently? Moderate, severe, very severe,
profoundly severe
4. What country are you in?

• How long did it take you to get a diagnosis, or to find out for yourself that you had M.E.?
• What was your job pre-illness?
• Can you work currently, and if not, how long has it been since you could work?
• Your age (if you're under 30 only, unless you want to list your age):
• Are you housebound?
• Are you bedbound?
• Do you have access to a doctor?
• Do you have access to a good/knowledgeable about M.E. doctor?
• Are you severely affected because of bad medical advice? Because you were told to increase your activity levels, or enrolled in a formal exercise program.or because of other medical mistreatment?\
• How much are you annoyed/frustrated by the misconception that the primary symptom of M.E. is mere 'fatigue'?
• What is your worst symptom? (Cognitive problems, memory problems, neurological problems, cardiac problems, seizures, orthostatic problems?)
• What would be your top 5 worst symptoms?
• How has the confusion between M.E. and 'CFS' by the media/government/doctors/public etc. added an additional burden of suffering on you? How has it affected your relationships with friends and family?
• Have you had problems, or been unable to, get appropriate welfare support?
• Is there anything else you'd really like to tell people about yourself or your experiences, or about M.E. generally?

Please only write down answers and send images that you give me full permission to use. (Genuine neurological M.E. sufferers ONLY please.)

Also, of course families of kids with M.E. can write in on their behalf. If you didn't want to send in a pic of the child, and fair enough, maybe you could just photograph yourself.or yourself holding a pre-illness picture of the child? Whatever you feel comfortable with. (You also don't need to use the child's real name or your own if you don't want to.)

Of course getting the facts out there, the overwhelming science and evidence that we *already* have and which proves so irrefutably that M.E. is a serious neurological condition which occurs in epidemic and sporadic forms and which is initiated by a viral infection and so on, is of the utmost importance and far more important than mere personal stories.but it couldn't hurt to have a few more authentic M.E. case studies out there either, particularly severe ones.

It feels like it is important in some way to speak up for those who are too ill to do so themselves and to have people know about them.to give them a voice.as mostly the reality of M.E. is hidden behind closed doors. So few people are aware of it, just because the illness is just so very severe.and of course there are so many very, VERY wrong misconceptions because of all the 'CFS' (and other) financially motivated propaganda.

I'll make the deadline for sending things in March 1st 2008, although it'll likely be fairly flexible. Please email me if you have any questions at all about this, or suggestions.

(The shorter and more simple you can make your questions the quicker your reply will be, but please bear with me as replies may still take a fair while due to illness.)

Click here for the email address.

I look forward to hearing from a lot of you, hopefully, and to telling your stories to the world...or at least a small part of it!

Best wishes everyone,

Jodi Bassett