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ME Awareness Week - Walk for ME

Graham

Senior Moment
Messages
5,188
Location
Sussex, UK
In anticipation of the ME Awareness Week, 6th-12th May, Luke and Ian have set up a website to encourage friends and relatives of people with ME to raise money for biomedical research. Luke found that many people asked him what they could do to help, so he came up with this idea. Primarily it is UK based, but worldwide participation would be more than welcome!

http://walkforme.co.uk

As we all know, the amount of money spent on biomedical research has been minimal. You may have seen the recent video that Ian and I released on US funding:

Money and ME

I could have added a bubble to represent the amount of money spent by the UK government on biomedical research into ME in all the years up to 2011, but I couldn't find any such support at all. It's largely up to us to build up the pressure and the momentum.

Thanks!
 

golden

Senior Member
Messages
1,831
Graham,

I dont know if this counts but have you seen it?

http://www.forme-cfs.co.uk/research.html

Its Perrin trying to get the doagnostic and treatment technique available on the NHS.

I bet PR will be super dooper at properly evaluating all the studies so far.

He has done a couple of tiny successful double blind studies with also MRI scans etc and now needs 60,000 pounds for a larger clinical trial to get it approved.
 

Graham

Senior Moment
Messages
5,188
Location
Sussex, UK
No I hadn't seen it. Have you any idea where the full study is available? The website lacks a lot of the details (such as which questionnaires were used).
 

golden

Senior Member
Messages
1,831
No I hadn't seen it. Have you any idea where the full study is available? The website lacks a lot of the details (such as which questionnaires were used).


http://www.theperrinclinic.com/research.htm

Is this link any good????

If its not, I imagine if you emailed him directly. Presumably if his aim is to be accepted by the NHS he is following guidelines layed out by the NHS - but not sure what they are either...

I havent looked at the link yet myself....
 
Resurrecting an old thread but recycling is good so better that than a new thread. ;)

http://walkforme.co.uk/ is still up and running (pun unintended) and for those on Facebook there is a page, https://www.facebook.com/WalkforMEUK/, and a Facebook event for this year, https://www.facebook.com/events/223650654748426/

Funds raised go to Invest in ME and ME Research UK.

Since May 2013, Walk for ME has seen amazing people do sponsored walks, swims, runs and rides across the UK, Ireland, the Isle of Man, France, Spain, Malaysia, New Zealand and both coasts of America. To date Walk for ME has raised over £70,000 including gift aid. Wherever you are we hope you or your family and friends will get involved this year!

The idea
The original idea behind Walk for ME was that friends, family and loved ones of an ME sufferer do a sponsored walk on their behalf: hence the name Walk for ME or Walk for me. However as well as walks we have had healthy friends and families of ME sufferers do swims, rides and runs! It is hoped that as many friends and loved ones as possible will do a sponsored walk or other fun event during ME Awareness Week which runs from 8th May to 14th of May.

A significant number of people with ME/CFS are bed-bound, house-bound or can only walk short distances. One of the tragedies of ME/CFS is that it is effectively an invisible illness as so many are too ill to work, raise awareness of the illness or raise money for research. We hope Walk for ME can help address all these issues by raising awareness and vital funds for research into ME.

Our hopes
We hope this will be a fun but poignant event. Family and friends can choose to walk any distance they choose; it could be 1 mile, 5 miles, or 10 miles or whatever feels appropriate. Alternatively they can choose to swim, do a run or go for a ride. The whole idea is that the friend or family member is doing something that their loved one would love to be able to do but can’t. We really hope that by doing this on their behalf and raising sponsorship money it will help raise awareness of this debilitating illness.

People with ME often have friends and loved ones saying they feel helpless and they wish there was more they could do to help. This is their chance!