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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Vote once for each of two ME orgs from anywhere to win £2000

Sasha

Fine, thank you
Messages
17,863
Location
UK
Yes, I agree. I think these smaller charities in particular dont have people checking their messages and responding regularly. That makes it harder to get them involved, but I think the fundraising group are working on ways to help these charties enter with our help and of course to get in better contact with the right people as sometimes these contests come out of nowhere.


This is such a new thing in the UK and if those little charities aren't well networked, they're not going to be aware of the kind of support that the community is providing in voting in massive numbers these days. I hope they'll become voters for others as well as entering contests themselves. We're still in the fairly early days of building up our network.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I think it is a tiny bit different if you use google+ instead of Facebook..? I can amend the instructions if anyone can suggest how to update. Maybe the title could be better too (it was late).


I have Facebook, not familiar with Google+

GG
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I think it is a tiny bit different if you use google+ instead of Facebook..? I can amend the instructions if anyone can suggest how to update. Maybe the title could be better too (it was late).


I just went through the process, using FB to vote for one charity and Google to do the other. I also didn't see Stage 6. It was slightly different with Google.

Here are the instructions I came up with - please feel free to copy:

To vote:

1. Log into your Facebook or Google account.
2. Go here to ME Research UK’s voting page:
https://www.directdebit.co.uk/TheBigBreak/100GoodCauses/Pages/CauseDetail.aspx?CauseId=1404
3. Scroll down a bit and hit the big red button at the bottom right that says, ‘Vote for this cause’.
4. Click on ‘Log in with Facebook’ or ‘Log in with Google’.
5. If you used Facebook, now choose ‘OK’ or ‘Skip’, depending on whether you’d like The Big Break to post to your friends on your behalf: if you used Google, you won’t see this choice.

6. You’ve voted! Now do it again for the ME Association by going here:
https://www.directdebit.co.uk/TheBigBreak/100GoodCauses/Pages/CauseDetail.aspx?CauseId=1955
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I've got a new signature on the go for this now - help yourselves!

To copy the signature:

1. First, copy the text of my signature as you would in a normal document by highlighting it, right-clicking your mouse and choosing ‘Copy’.

2. Go to the bar at the top of the screen where the ‘Log in’/’Log out’ tab is and you’ll see your username. Click on it to get the drop-down menu and choose ‘Signature’ (told you it was easy!).


3. Paste the text of my signature into the box. It will lose its formatting but the main thing is the message! If you want to format it with the tools there, you can – stick some balloons on it, why not – or you can just click on ‘Save’ straight away. Done!
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I've got an article coming up on this, probably towards the end of the week. Meanwhile, we seem to be off to an unusually slow start on the voting - I suspect we're all shattered after that amazing 8,000-vote finish in the Stormberg contest!

Anyway, the current situation is:

1. Henry Hallam Appeal - 422
2. NCCA
3. MERUK - 326
4. Rett Syndrome Research - 232
5. Brompton Fountain - 215
6. MEA - 176

For once, they're all medical charities in the lead - nice to see.

So, we're not winning yet, but we will be! :)

You know the drill - vote now, tell your friends...
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
The community's off to a slow start on this one - quite a weekend with Stormberg!

We've maintained those positions overnight - time to start voting! Tell your friends...:)
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Actually, our two charities only got about 15 votes each overnight - come on, rest of the world! :)

1. Henry Hallam Appeal - 422 now 543, up 121
2. NCCA - ? now 403, up ?
3. MERUK - 326 now 345, up 19
4. Rett Syndrome Research - 232 now 269, up 37
5. Brompton Fountain - 215 now 237, up 22
6. MEA - 176 now 192, up 16

A lot of these other charities are very local - we can easily outstrip them if we all vote together!
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I believe you were correct when you said earlier - I think it was you Sasha - that our UK charities as a general rule need to better embrace the internet and social media as our brethren in the States have. All down to organisation and manpower I suppose but if this scheme is likely to become one of many in coming years - it would do them well to have a better plan in place for lifting their profiles methinks.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Come on voters. We managed a hard-fought win for Invest in ME and these two charities also do a lot of great work - they have in the past, and continue to fund biomedical research !! Such as Dr Newtons very promising work and other work by Bansal which on B-cells which could relate directly to Rituximab findings. If we dont help these two research-funding charites win competitions like this then we wont get more research like this!

This is free money for more research!!
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Some info about ME Research UK, and ME Association. Please feel free to repost all of it, or extracts, anywhere.


ME Research UK

ME Research UK is a UK charity dedicated to funding biomedical research:
http://www.meresearch.org.uk/
ME Research UK have funded some very helpful research over the years.
See the full list of their research projects here:
http://www.meresearch.org.uk/research/studies/index.html

ME Research UK have funded Julia Newton (Newcastle University, UK) who recently carried out a muscle biopsy study which found that muscle tissue, taken from ME/CFS patients and grown in a lab, produced 20 times more lactic acid than muscle tissue taken from healthy controls, when subjected to simulated exercise in the form of electric pulses. I don't think this study has been published yet, but here's some info about it:
http://www.meassociation.org.uk/?p=15215
And here's a very interesting interview with Julia Newton, in which she mentions some of the funding that she has received from ME Research UK:
Short version:
http://www.prohealth.com/library/showarticle.cfm?libid=18065
Long version:
http://forums.phoenixrising.me/inde...usly-an-interview-with-dr-julia-newton.23320/



ME Association

The ME Association is a UK patient support group, and is helping to set up a national biobank:
http://www.meassociation.org.uk/?page_id=14711
The ME Association have also funded Julia Newton through their Ramsay Research Fund, the details of which can be seen here:
http://www.meassociation.org.uk/?page_id=14718
Here are more details about the Ramsay Research Fund, which is run by the ME Association:
http://www.meassociation.org.uk/?page_id=1086
The ME Association is also part of the new UK research collaborative set up by Prof Stephen Holgate:
http://www.meassociation.org.uk/?p=15299
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Some info about ME Research UK, and ME Association.


Thanks, Bob - I wish I'd had your post when I was researching them for my article! Their major achievements are actually rather buried on their sites because they've done a lot of stuff and it's all there in one big list, tucked away on subpages. :)

They've been funding biomedical research in the UK for a long time and leading the pushback against the government's bizarre emphasis on funding psychiatric research. Their seed-funding of Julia Newton's stuff got her team £900,000 from the MRC this year.

They've done a lot of good things and they're both a major part of the UK ME/CFS scene. Various charities seem to have different emphases in what they do and together, they're making a stronger and stronger whole. We need to support them so that they can better help us - the situation in the UK is dire.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
MERUK have 4 more votes since I last posted numbers about 4 hours ago and the MEA have 2 more!

Is the internet broken? o_O
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I believe you were correct when you said earlier - I think it was you Sasha - that our UK charities as a general rule need to better embrace the internet and social media as our brethren in the States have. All down to organisation and manpower I suppose but if this scheme is likely to become one of many in coming years - it would do them well to have a better plan in place for lifting their profiles methinks.


I don't think that was me - I haven't managed to embrace either the internet or social media myself much, so I'm no-one to talk!

But I was talking to a friend about these online contests yesterday and saying that none of my friends has a Facebook account, maybe because we're not the Facebook generation. She said she'd just been on a social media training course at work and in fact, younger people are leaving Facebook for Thing X. Being also of the wrong generation, she couldn't remember the name of Thing X.

Thing X, anybody?
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Regarding the slow voting patterns, I wonder if we made a mistake overlapping the heavy promotion of the MEandYou voting with promoting the new voting competition. It's probably confused people, and perhaps people think that they've already voted, and that the voting competition is now closed. The competitions were getting promoted in parallel on Twitter. It would also have been nice to allow people a bit of a breather after the MEandYou vote.

But never mind... There's a whole month to go... So I'm sure that people will catch on.

Regarding Facebook, I've always hated Facebook, for various reasons, but I recently opened up an account just so that I can join in with some of the ME related Facebook sites. If you have a Facebook account, it is possible to post messages on other Facebook accounts.

Sasha, I just looked up Thing X, and guess what? The name is actually "Thing X"! o_O :)
I don't understand what it's all about, but I don't think it's very big, and Facebook is massive.
Nearly everyone in the UK seems to have a Facebook account.