Petition for increased research funding in the UK

[Adrian]

I noticed this on twitter (UK only)

Their are 250,000 men, women, children in the UK suffering from ME. While other illnesses get support, sufferers are told it a psychological illness and offered a variety of therapy. But the answers lie with the biomedical scientists, who need more funding to find cause and cure.

My daughter is one of the next generation having to endure this horrific sentence of trying to save as much energy just to try and get through the day so they don't sink further into their world of illness. For many sufferers who are older it may be too late, as half their lives has already been blighted and damaged on this devastating journey - many confined to their beds, a shadow of all their hopes and dreams been ripped away from them, never being able to reach their true potential. We owe it now to give the next generation a chance to find a cure to fulfil their potential and become part of life again. We need the government to listen to our voice and give sufferers the funding, support, respect they desperately need.

https://petition.parliament.uk/petitions/203140

 

[arewenearlythereyet]

Signed

1431 signatures so far

 

[Moosie]

Signed

 

[Wonko]

signed 1436

and, to me, it is about the next generation of suffers, it being a tad late for some of us

 

[Esther12]

tbh, I'm wary of signing anything which could lead to more funding for Crawley.

This is such a ridiculous situation... I should be able to sign that petition, but I just don't trust the UK medical research Establishment at all.

 

[markiemark]

signed!

edit: I definitely understand @Esther12's concerns though. More funding is not the complete picture. Research into where we prioritise research and research standards need to be addressed too.

 

[MeSci]

Signed

 

[Graham]

I agree about us not needing more funding for the psychs, but, to be fair, when MPs did get involved with an Early Day Motion back in 2010 it was to push the MRC into funding biomedical research. OK, it was the third attempt by parliament to get things moving, and the MRC only responded in 2011 as a one-off, but I do not think that MPs are happy that money is being spent on CBT etc.

The other point is that the spending on ME is utterly pitiful. Squabbling over the relative crumbs doled out to the psychs instead of demanding equivalent funding to comparative medical conditions just wastes our energies.

 

[Awol]

tbh, I'm wary of signing anything which could lead to more funding for Crawley.

This is such a ridiculous situation... I should be able to sign that petition, but I just don't trust the UK medical research Establishment at all.

Interestingly, the petition was created by Sharon Anne Tiday, mother of 10 year old Shannon Tiday, whose instant response on video to the media hype about Esther Crawley's SMILE trial of the Lightning Process was itself reported in local/regional media.

So although I completely agree with your comment, this time the petition comes with that bit of background publicity attached.

The health struggles of a 10-year-old Plymouth schoolgirl have prompted the launch of a nationwide petition calling on Parliament to act on the growing problem of chronic fatigue syndrome. https://www.indyonline.co.uk/news/petition-research-funds-m-e/

Shannon hit the news after a video she made on M.E. went viral, with people from all over the world backing her protest that her debilitating condition cannot be treated as a psychological illness, a claim made by supporters of a controversial treatment for M.E. known as the Lightning Process. https://www.indyonline.co.uk/news/petition-research-funds-m-e/

The journalist Geoff Baker, had previously written this article inspired by Shannon's video:
https://www.indyonline.co.uk/indy-column/please-take-vile-illness-seriously/

Here's the link to her video for ref.



Sharon Tiday is linking the petition with a campaign she calls 'Listen to ME'.

She had already been proactive in raising disability awareness and this is her campaign profile on Twitter..

 

[Awol]

Posted by Sharon Tiday
16 hrs
https://petition.parliament.uk/petitions/203140 our story in Chat magazine but one of millions so please keep signing and sharing

 

[Amw66]

I think what we are missing is a coordinated campaign off the back of unrest. The media profile has been raised, we need to capitalise on this. If national coverage is difficult perhaps it has a local base to build from ( similar to Bristol Cable articles).
In New Year i will look at getting unrest into my daughter's school ( trying very hard to get virtual educational provision established) and combine this push with other chronic illnesses. We have no support group locally, although 25 group is nearby, so it would be interesting to see how many pwme there are locally.