Please vote for XMRV Research

[garcia]

Please vote for XMRV Research (UK only)

*Edit*
Hi all,
Charles Shepherd posted this on co-cure today:

The MEA normally takes a relaxed position regarding people from overseas =
taking part in these website polls (because there are obviously people =
from the UK living abroad) and in most cases we are very happy for =
overseas input.

However, in the case the August poll, this is clearly related to the UK =
political situation, and the way in which UK politicians can try to help =
people with ME/CFS on a variety of issues - some restricted to the UK =
(eg DWP benefits; MRC Expert Group, NICE; NHS Services), others being =
more general (eg XMRV).

We would therefore ask that overseas votes are, on this occasion, =
restricted to people from the UK who are currently living abroad.

Our current website tools do not allow this extra wording to be added to =
the actual question, which is why this request does not appear as part =
of the question. Life is vever simple....

Since the MEA have finally made clear that they only wish to have overseas votes from British people living abroad I'd ask that people respect this.

Many thanks,
garcia.

*End Edit*

To British ME/CFS sufferers who wish for XMRV research to be given top priority:
Please go the ME Association website and vote for XMRV research in their latest poll.

http://www.meassociation.org.uk/

Poll Question: What should be the top priority for the reformed All Party Parliamentary Group (APPG) on ME?
Benefits
Children's Issues
Medical Education
NHS Services
NICE Guideline Review
MRC Research
Severely Affected
XMRV <------------------------ Vote for this one here!
None of the above

many thanks,
garcia.

 

[Sasha]

Done! Thanks, Garcia.

 

[alex3619]

Hi

Just voted. XMRV is now at 36.4%. The next closest is medical education at 27% - which considering how medical knowledge is viewed in the UK shows just how important people are considering XMRV to be.

bye
Alex

 

[Sasha]

Hi

Just voted. XMRV is now at 36.4%. The next closest is medical education at 27% - which considering how medical knowledge is viewed in the UK shows just how important people are considering XMRV to be.

bye
Alex

It's a difficult survey to choose one option from because they're all interdependent - for example, MRC research would be expected to subsume XMRV research and research would be necessary for decent medical education! Not a criticism of a survey, just an issue about the fundamental importance of research and how every other single thing hangs off it.

 

[omerbasket]

But what the hack is "benefits"? Is it a proposal to study how people benefit from being ill with ME?!?! And if so - it's frightning that it's in 3rd place with 13.1%.
Or do I get it wrong?

 

[ukxmrv]

Benefits are the ones from the Govt i.e. for sick and disabled people (social security)

 

[omerbasket]

Ah, Okay. Thanks.

 

[busybee]

On Thursday 12 August we became aware of some very unusual voting activity on the MEA website poll - which is asking about the top priority issue for the new APPG on ME.

http://www.meassociation.org.uk/ind...of-mea-website-polls&catid=30:news&Itemid=161

 

[urbantravels]

I'm afraid that is the inevitable result of putting up any open internet poll, especially on a topic where people have strong feelings.

If the intent of the poll was to hear only from members of the organization, or only people within the UK, or whatever, there are ways to conduct such polls via email and secure polling sites. A poll that is open to the whole Internet is going to get results from, well, the whole Internet. If that's not your intention, then that's not how you should conduct the poll.

 

[garcia]

I'm afraid that is the inevitable result of putting up any open internet poll, especially on a topic where people have strong feelings.

If the intent of the poll was to hear only from members of the organization, or only people within the UK, or whatever, there are ways to conduct such polls via email and secure polling sites. A poll that is open to the whole Internet is going to get results from, well, the whole Internet. If that's not your intention, then that's not how you should conduct the poll.

I totally agree. They didn't even say they wanted to restrict it to UK people. If they had I would have totally respected that, but they didn't. In any case I would imagine the majority of the people who voted are based in the UK.

 

[Mark]

[FONT=verdana,arial,helvetica,sans-serif]ME Association:
We are going to continue to run the poll. [/FONT]

[FONT=verdana,arial,helvetica,sans-serif]However, the APPG on ME will have to be made aware of this voting activity when the final figures are presented to them in September.[/FONT]

That should be OK, so long as they all get a copy of PNAS in September as well.

ETA:
They can tell them our name at that point as well if they like. Phoenix Rising it was, who said they thought this was important. And by the way, I'm pretty sure we have at least as many UK members and readers as the number of votes cited, nearly all of them ME/CFS sufferers, the rest carers and advocates, so I am sure the poll is no less representative than it was before we voted. Skewed a bit that way, maybe, I grant you - maybe - but representing a large body of well-informed patient opinion nevertheless.

 

[alex3619]

Hi

I sent them an email suggesting they let people know, clearly, if it was a UK only poll. I read their site from time to time, and vote on their polls, and I am in Australia. Good sites are worth visiting. While there are local issues, there is also the global agenda. Nobody is entirely alone in this, which is a good thing. I also let them know that I sign e-petitions from the UK too. They have my support in their struggle, and that is probably the same for most of us who are aware of the UK issues.

bye
Alex

 

[RustyJ]

I also voted for XMRV. Didn't even consider the point I was not in UK. As far as I could see the issues in the poll are the same as those here. Not really sure why MEA should get their panties in a knot, unless they are not happy about XMRV research being supported. 'Manipulated' is a pretty strong word, implies they are very unhappy with the end result.

We are still part of the Commonwealth anyway.

 

[*GG*]

Hi all,
Please go the ME Association website and vote for XMRV research to be given priority in their latest poll. The poll is open to all.

http://www.meassociation.org.uk/

many thanks,
garcia.

XMRV <------------------------ Vote for this one here!
I did as you asked, hope it helps!

 

[SickOfSickness]

XMRV 633 51.7%
Medical Education 242 19.8%

Good. Let more people learn what XMRV is and how much we suffer. We need to get our foot in the door at any possible opening.

 

[Min]

The MEA seem to be looking for an excuse to ignore the poll if most people vote for XMRV.

 

[Sasha]

The MEA seem to be looking for an excuse to ignore the poll if most people vote for XMRV.

Hi Min - I don't find that likely. If they hadn't wanted people voting for XMRV they could just have left it off the list.

I think they had just assumed that the vast majority of people looking at their website would be UK people (probably a reasonable assumption under normal circumstances). I think it hadn't occurred to them that they might attract interest internationally, and so didn't think to state that they wanted the poll to be for UK people only.

They've been actively seeking XMRV projects to fund (I've seen that on their website, I think in the research fund bit) - I think that shows they're interested in XMRV and want to help push forward on it.

Either way, XMRV will get a strong mention at the APPG now and I'm sure would have anyway (it will surely be post-Alter). It will be good for the APPG to be reminded of the strong international interest and that this is an issue that cuts across national borders.

 

[Min]

They've been sitting on the money for ages whilst saying that they are looking for high quality research into XMRV. Haven't they also stated that they will not use the Canadian Criteria in their research?



In contrast, the tiny charity Invest in ME have had no problem finding and going right ahead with research into XMRV; they have even sent people out to the severely affected to collect their blood. This is the first time that I have heard of biomedical research including the UK severely affected.

I know who's getting my donations in future & it ain't the MEA.

 

[ukxmrv]

What would we like the APPG to do about XMRV?

I'm too braindead to think today. Anyone else?

 

[Sasha]

What would we like the APPG to do about XMRV?

I'm too braindead to think today. Anyone else?

I'd like to see them earmark funding to do good quality (in colloboration with WPI) investigations into XMRV in CFS, and to act to protect the blood supply.