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All Fall Down for M.E, 2.30 for 3PM, Sunday 12th May, Westminster

 

Disclaimer: Please note that everyone taking part in this event is responsible for their own safety and well being; the organisers do not take responsibility.  The police have been informed and since this is public land they have assured us we have the right to demonstrate here, they will support us and that there is no risk of arrest – unless someone does anything that is likely to endanger the health & safety of others.

 

 

While collapsed, we need to show that this is not enjoyable: the person with ME has to do this in order to survive/exist.  We suggest you bring a black sheet/cloth/bin bag to cover your body to signify a living death.  Please bring props such as eyemasks, sunglasses, ear defenders, possibly feeding tubes etc to convey:

 

The exhaustion to the point of collapse after minimal activity; the nerve, joint and muscle pain unresponsive to painkillers; the physical weakness; the cognitive dysfunction with thinking & memory problems; the inability to tolerate light and noise; the faintness & dizziness particularly when standing; nausea; rest or sleep bringing little or no relief; plus many other symptoms. This is what our loved ones have to suffer, day after day, after month, after year, with no end in sight. A living death.

 

Since Old Palace Yard is cobbled, you may also wish to bring something to lie on, but please make it as ‘dead-looking’ as possible ie no bright colours.

 

Please bring banners if you wish but think about who may hold them while you are lying on the ground.  We plan to have those with banners at the back, with those collapsed on the ground in front of them. We plan to film & photograph the event from an angle that gives maximum impact to the sight of those collapsed on the ground, with the Houses of Parliament in the background.

 

Ideas for straplines: M.E – a living death, it could be YOU or your child.  Biomedical Research urgent.

You may want to wear a sash or sign saying, for example: My son, M.E 6 years; my wife M.E 20 years; my Dad M.E …; my sister….and so on.

 

Our aims are: to raise awareness among the public and government about how severe & long-lasting M.E can be; how common it is; how it can strike healthy, happy individuals out of the blue, particularly our children and young people; and that we urgently need far more investment in biomedical research to discover cause(s), effective treatments and hopefully a cure – before it’s too late.

We also need far better training for doctors etc on the latest knowledge about M.E.

 

With this demonstration, as well as depicting the severity of the illness, we will be honouring those who have actually died from M.E. and also the courage of all those who continue to fight on in the hope of a living life.

 

 

 

 

For Further Information about M.E. - please watch &/ or send on to others:

 

Fatigue is to this illness what a match is to an atomic bomb (1min)

http://www.youtube.com/watch?v=FaJRjFomQ1w&feature=player_embedded

 

 

Mind the Abyss (15 mins) A brilliant new short animation which vividly evokes the first 6 months of this young man’s illness. The first of three.  http://www.youtube.com/watch?v=GyxUVkfZ1Hk

 

 

The World of One Room (6 mins) The photo on the Event poster is of the courageous young woman in this video. http://www.youtube.com/watch?v=VH-puNCQxh4

 

 

Voices from the Shadows trailer (4 mins) . The full film (just over 1 hour) is available via the website below.  It is a profoundly moving and shocking portrayal of the abuse of children & adults with M.E by medical ‘professionals’.

http://voicesfromtheshadowsfilm.co.uk/#

 

 

Professor Anthony Komaroff (Harvard Medical School) presentation on The Biology of ME/CFS. Very good viewing for anyone who doubts the scientific evidence for ME/CFS as a real, serious neurological condition.

http://vimeo.com/28512873 (Part 1, 25 mins)

http://vimeo.com/28610278 (Part 2, 22 mins)

 

 

Dr John Chia talking to Llewellyn King of The White House Chronicles:

 

Chia: In England this is not recognised as a …. real disease so there’s really not much funding.

L-K: It’s really interesting what’s happened in England where the psychiatrists have claimed the disease …. I get more sad, terrible correspondence from patients from England than from anywhere in the world.  Great anger, great pain.  And yet the National Health Service …. being a monopoly, has arguably decided on the cheapest ‘solution’ which is psychiatry, except that it isn’t a solution and doesn’t work.   

Chia: You said the right word: it’s the cheapest way to deal with a difficult disease: “It’s all in the mind, there’s nothing I can do for you” - it doesn’t cost any money. 

The problem is this is a very complicated disease.  This disease, in my humble opinion, is as difficult as HIV. The only difference is that AIDS patients died.  This disease usually doesn’t kill a patient.  Rarely, people do die from this illness.  But this is a very serious disease: it can be life-long, people are totally debilitated and they cannot really function ever, although they wish to.

 

http://forums.phoenixrising.me/index.php?threads/llewellyn-king-interviews-dr-chia-part-4-me-cfs-alert-episode-41.21950/

 

 

The International Consensus Criteria (ICC) for M.E. For full list of symptoms: http://www.hetalternatief.org/ICC%20primer%202012.pdf

 

 

From the UK Medical Research Council website:

Neuropathology: There is now preliminary evidence supporting the view that inflammatory mechanisms in the brain and spinal cord may underlie the pathophysiology of some severe disease CFS/ME phenotypes.

http://www.mrc.ac.uk/Fundingopportunities/Highlightnotices/CFSME/MRC001747

 

 

The UK Medical Research Council has recently given £1.65 million towards biomedical research, a UK ME/CFS Research Collaborative is about to be launched, and there is much biomedical research now taking place in the U.S, Australia and many other countries.

BUT WE NEED FAR, FAR MORE AWARENESS & FUNDING to give our loved ones a chance of living what is left of their lives – before it’s too late.

 

 

Don’t be intimidated by ignorance.  Stand up (or lie down!), speak out and let everybody hear our voice on behalf of our loved ones who are hidden away and seldom seen or heard.  Educate others at every opportunity!

All Fall Down for M.E. is a cross-charity event with no particular charity affiliations, although we particularly support those which promote and fund biomedical research.