Request to sign a petition to the governme... - Ramsays Disease

Ramsays Disease

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Request to sign a petition to the government for funding for ME research

ukmsmi4 profile image
26 Replies

This is on behalf of a fellow ME sufferer on the fibromyalgia HU forum, but as an ME and fibromyalgia sufferer I am also requesting your assistance too.

meaction.net/2016/01/19...

"I must have a pea in my head today as as tired as I am I do not want to lie down to this horrible illness. The way medicine and attitudes to unseen illnesses is approached needs to change dramatically and Fibromyalgia is no different. Can I ask you all to please sign the petition (uk residents only atm) and hopefully collectively we can raise awareness of our pain. "

Please sign and share as much as you can.

Many thanks.

Margaret.xx

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ukmsmi4 profile image
ukmsmi4
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26 Replies
pandemic profile image
pandemic

Played my part in reaching 10,000 thank you for the opportunity Margaret.

ukmsmi4 profile image
ukmsmi4 in reply to pandemic

Thank you. :)

Jonesbones profile image
Jonesbones

The current annual budget for biomedical research works at roughly £1 per patient per year - an increase from such humble beginnings cannot be beyond budgets.

ukmsmi4 profile image
ukmsmi4 in reply to Jonesbones

Yes indeed, you would think so wouldn't you.

slowmotion profile image
slowmotion

Confirmation e mail received vote counted :-)

ukmsmi4 profile image
ukmsmi4 in reply to slowmotion

Thank you. :)

Arianne profile image
Arianne

Signed thank you

ukmsmi4 profile image
ukmsmi4 in reply to Arianne

Thank you. :)

carch520 profile image
carch520

Almost two thousand when my name went in.

ukmsmi4 profile image
ukmsmi4 in reply to carch520

It's at 2,315 now. Still a long way to go though. Thank you. :)

ringading profile image
ringading

Government have placed responsibility for research funding with the Medical Research Council when asked previously more pressure on them can do no harm in asking again.

ukmsmi4 profile image
ukmsmi4 in reply to ringading

Who do we put pressure on though, the government who are supposed to represent us or the Medical Research Council, who personally I know nothing about?

Thank you. :)

ringading profile image
ringading in reply to ukmsmi4

I will join in not knowing where pressure produces results as my expectations are limited by previous history parliament.uk/business/publ... a political hot potato passed around.

I have even heard the money wasted on the PACE trial quoted as an example of funding generosity and the bitter irony of that cannot be understated for all concerned with moving research forwards.

Ian123 profile image
Ian123

Signed and shared with another group.

ukmsmi4 profile image
ukmsmi4 in reply to Ian123

The more the merrier (hopefully)!! Thank you. :)

Seascape profile image
Seascape

Shy folk get nothing we must shout up about neglect when it's happening.

ukmsmi4 profile image
ukmsmi4 in reply to Seascape

Very true.

CheshireKatz profile image
CheshireKatz

With 250,000 affected then 10,000 signing in 6 months is realistic with publicity.

ukmsmi4 profile image
ukmsmi4 in reply to CheshireKatz

I take your point. But the problem is such a large proportion of sufferers are bedbound or are so severely affected that even small amounts of effort and concentration like that is very difficult for them. Lets face it everything is so much harder for us. And the really sad thing is when the psychobabble brigade use that against us on the few occasions when we do raise the energy to campaign on our own behalf. They conveniently forget the sad truth is we are so neglected and treated so appallingly badly that we have very few people to fight on our behalf so we have no choice but to do so ourselves, despite, and I sometimes feel because of, the huge drain it has on our reserves.

For that reason I feel we have to put some effort into not only signing ourselves but persuading as many non ME people as possible to sign as well.

CheshireKatz profile image
CheshireKatz in reply to ukmsmi4

Families and carers must do so much that asking for campaigning as one more thing is a drain on this resource also sadly.

ukmsmi4 profile image
ukmsmi4 in reply to CheshireKatz

Very true. Which is partly why I think campaigns like this are as much for their benefit as ours.

Effort profile image
Effort

Signed and shared as widely as I can.

Onceagain profile image
Onceagain

Signed want more research showing how serious this disease is taken by medical professionals.

rocketronnie profile image
rocketronnie

A sense of achievement from filling this out when helpless facing an uncertain future.

Funding is not at a level that numbers affected and disabling effects demand an opportunity is presented for correcting this mistake.

Theresa60 profile image
Theresa60

Saddened that we must ask can they just do their jobs properly nothing extravagant in the request for biomedical research.

readerlist profile image
readerlist

Research for me is hope my future could be better than my past I have signed for a more hopeful future.

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