ME Links And Blogs

If you have read much of this blog, you will know that I am disabled with a neurological illness called ME (aka CFS or CFIDS if you are across the pond), as a result of which I also have MCS (multiple chemical sensitvity), and hyperacusis (acute sensitivity to noise).

ME is a much misunderstood illness - most people don't know very much about it, and thanks to the rubbish which has been printed by the media over the years, those people who think they know something about it are almost invariably wrong! Unfortunately this includes some people working in the medical professions, as theories about the disease which were prevalent in the 70s and 80s have now been discredited, but some medical professionals have not kept up with new research in the area.

This page is intended as a resource for anyone who would like to know more about ME, whether you only have a vague interest in finding out what I'm talking about, you know someone with ME and would like more information about how it effects them and your relationship with them, you have some medical knowledge, or you have ME yourself and would like to know where to find support. I will try to keep the links updated - please let me know if any are no longer working.

And once you've had a look at some of these links, you will understand why I'm asking you to please support ME research. The small UK charity Invest in ME are trying to raise money to set up a centre of excellence for research into ME - you can read more about this here. If you can't afford to donate, perhaps you would consider buying a calendar or a few greetings cards, or just signing up for the Everyclick scheme so that whenever you do an online search you are raising money for Invest in ME at no cost to yourself - for more information about that see my post here.

You could also support ME Research UK, The European ME Alliance, The ME/CFS Worldwide Patient Alliance, or one of the charities listed in the links below.


For Those Without ME

Letter to anyone who doesn't have ME

Video answering the question "what is ME?"

Explanation of limited energy levels - which was originally written about Lupus, but could refer to any similar invisible disability.

Rachel Miles' explanation of how it feels to live with ME

Poem by Stewart Henderson

Poem by Frieda Hughes

Short video explaining the severity of ME and current research

Short video of people with severe ME

My post on myths and facts about ME


For Those With ME - Charities, Support Groups, And Information About Living With ME

ME Association

Action For ME

25% Group (severe ME)

Association of Young People With ME

Tymes Trust (young people)

CFIDS Association (US)

Myalgic Encephalomyelitis Society Of America

ME/CFS Australia

ME Chat

Christians With ME

ME tips and severe ME

Get Well From ME - despite the name this isn't offering any false hopes of a cure, it's just a helpful blog about living with ME.


Blogs

I don't read many ME blogs, as I find most of them too depressing - I know what it's like to have ME, and I don't want to be reminded about how ill I am, or how ill I could become: I'd rather read blogs about gardening! But I like these because they are creative, or because they haven't lost their sense of humour or their sense of hope.

Dreams At Stake

Green Words Growing

RachelCreative

Velo-Gubbed Legs

CinderBridge - this blogger doesn't have ME herself, but has written some excellent posts (and a song) about it.


For Those Wanting More Medical Information

Some basic medical facts about ME

New International Consensus Diagnostic Criteria (long version - this also leads to link to short version, which is much clearer and easier to read).