XMRV International Advocacy Strategy: Help us start a Facebook page?

parvofighter

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Progress Summary: XMRVGlobalAction.org and Facebook page

OK, Ive tried to comb through the posts and collate a summary of our progress. Trying to do this quickly, so please edit if I'm off track.

We have done the following:


Come up with a name: XMRV Global Action
Secured a Web Name: XMRVGlobalAction.org
Drafted the following:
Mission Statement
5 Position Statements (must be under 150 characters for Facebook)
A template for a logo
Introductory info for a web page
As I understand it, XMRV Global Action will have its own web page, as well as a dedicated Facebook Page.

Four main thoughts:
1) Re: Mission Statement: I'm concerned that our current mission statement is too focused on "How" we propose to do things, rather than "What" we want to achieve. The original mission:
Mission: Our mission is to create a global advocacy network for diseases associated with the retrovirus XMRV.
Our mission isnt about building a global network. That sounds almost bureaucratic. Focus on what we really want to do: my sense is that our mission should be about accelerating global access for XMRV patients to diagnostics, care, & prevention. That's the holy grail. Very outcome-focused. Something that people can buy into. I.E. We want to SPEED up access to XMRV diagnostics & treatment, versus We want to build an advocacy organization. In other words, SPEED is WHAT we want to do. Building an advocacy organization; sharing international best practices; joining our voices in advocacy etc. is HOW we'll get there.

My draft for our mission:
To accelerate global access to diagnostics, clinical trials, treatment,
and prevention for diverse patient groups with the XMRV retrovirus,
by sharing international best practices and joining our voices in XMRV advocacy.

2) NB: These materials are a draft that will need to be further edited to reflect multistakeholder views. This has been said earlier, but it bears repeating. Needless to say, as additional organizations come on board, we need to ensure that there is buy-in to these components, so they will need to be fluid. My instinct is that we really stick to our knitting: what are the KEY things that we can do together that speak to all of our diverse groups and then do a bang-up job on those. But for now, let's get a "good enough" version that we can run with. Hopefully with future funding for a not-for-profit, we can leave the finessing to them. The "guts" are what important for now. Can people buy into our mission?

3) 5 Position Statements: I've reorganized these to capture the main themes: XMRV is transmissible. It's very serious. There's a critical need for care. Global advocacy can accelerate change. We need a unifying PR strategy. Note I've also included the count for characters (including spaces) for each Position Statement.

1: The XMRV retrovirus is transmissible by blood, and is likely in the blood supply. This potential contamination is a worldwide public-safety crisis. (147)

2: XMRV is associated with debilitating and life-threatening, poorly-understood illnesses, including cancers and neuro-immune diseases. (132)

3: Some patients have been ignored for decades. There is a critical global need for accelerated access to XMRV testing, clinical trials, and treatment. (149)

4: We have strength in numbers. Vigorous global advocacy and sharing of best practices across diverse XMRV patient groups will drive accelerated change. (150)

5: We share a common need. A powerful and unifying PR strategy must demand swift and decisive action from governments and research bodies. (134)

I would NOT recommend including the "swift and decisive redress for decades of governmental and medical neglect", in the umbrella of this particular organization, as this is not necessarily shared by all XMRV patient groups. I do agree with islandfinn's concern that we not focus on a negative past - at least for this organization. For example, patients with prostate cancer may not see things this way. Remember, we want our approach for this particular organization to be as powerful as possible. In order to do that, we need to be inclusive of ALL XMRV patient groups. Redress is gravy - if I'm not mistaken, the URGENT need now is for us patients to get our lives back. And that equals swift diagnosis/treatment etc. Keep your eyes on the prize. Let's stick to our knitting: get diagnostics/clinical trials/treatment asap for patients with XMRV. We need numbers to do that.

That said, there is clearly a need for the patient groups seeking redress to do so. Other alliances may spring up (eg. autism + FM + ME/CFS) regarding redress. But the last thing we want to do with a global XMRV action group is to alienate or disenfranchise entire patient groups. That might bog down any efforts to get swift Dx/Rx. (Sorry if this comes across too strong - I'm running out of steam to edit for niceties!)

4) Conditions associated with, or at risk for XMRV infection: It is right that prostate was the first chronologically, but it'd be a mess to try to order the list accordingly. I'd suggest keeping these in alphabetical order.

Autism
Atypical MS
Blood product recipients (Hemophilia, trauma patients, etc)
Cervical Cancer
Dysautonomia
Fibromyalgia
Gulf War Illness
Irritable Bowel Syndrome
Leukemia
Lyme Disease
Lymphoma (Mantle Cell)
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Multiple Chemical Sensitivity
Niemann-Pick Type C Alzheimers
Organ transplant recipients
Orthostatic Intolerance
Prostate Cancer

Oops - just came across islandfinn's great work on the list of Comorbid Entities: Agree that we might do a shortlist of the above list for Facebook if possible. Then for the website we might separate the list into Primary disorders vs Comorbid Entities, as per islandfinn's recommendation.

"Co-morbid Entities: Fibromyalgia Syndrome (FMS), Myofascial Pain Syndrome (MPS), Temporomandibular Joint Syndrome (TMJ), Irritable Bowel Syndrome (IBS), Interstitial Cystitis, Irritable Bladder Syndrome, Raynauds Phenomenon, Prolapsed Mitral Valve, Depression, Migraine, Allergies, Multiple Chemical Sensitivities (MCS), Hashimotos thyroiditis, Sicca Syndrome, etc.

Sorry - ran out of energy to do more. Can I punt this?:D
 

fresh_eyes

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Go parvo! Go parvo! :D Really nice work bringing everything together there. It's great that we're getting this just right before putting it out there. If we create a clear conceptual framework now, it will really benefit us moving forward.

Perhaps it would be useful to draw the distinction here between Mission (highest ideals), Goals (What we propose to do), and Strategies (How we plan to do it). Even if there isn't a place for all those things in the registration form, we can lay them out for ourselves and our web page.
 

Frickly

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That is soooo cool.

Thanks alot! I ya'll were concerned about the negativity of the last position so will try to reword it and then put. I'll put up the facebook page shortly and then we can have a better idea of how we want to organize the other information.

Hey y'all, the logo for XMRV Global Action is here!



Let me know if that works and I will email it to you, Frickly.
 

Frickly

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Parvo

Thanks for registering the domain as my husband was getting ready to do this. Fresh eyes will email me the logo and then I will put up the facebook page.

I thought we lost you for a while. I was afraid you had worn yourself out. Glad your back.

Whew, I just came back to find 58 posts since yesterday's post. Yowza!:):p:D I love this viral network! (Sorry - couldnt resist a very sick joke ). Thank you all SO much for jumping in and rolling up your sleeves this is astonishing. I love the logo, the name (XMRV Global Action), the website (XMRVGlobalAction.org). It's descriptive. To the point. Action-focused. Global. Very cool.

The volunteerism (and expertise) to get this up on Facebook is so affirming and welcome - thank you! It is astonishing what we have accomplished already in 24 hours particularly considering how disenfranchised we have been for so long, and how compromised our health is. Collectively though, were like the Olympic Torch relay.

OK, first things first: Ive taken the ball to ensure that we dont lose that great name: www.xmrvglobalaction.org . Last month I had registered XMRVcanada.org, with a view to transferring it to a not-for-profit, if - and I already thought When last month - the XMRV dam breaks. But I also registered the following sub-domains tonight @ www.godaddy.com , so that national/regional not-for-profit groups could be listed under the global umbrella. Lots more countries available I just thought it wise to register the ones who seem to be most vocally represented on the forum, and I can transfer these to you as soon as there's an organization to transfer them to.
www.XMRVcanada.org
www.XMRVusa.org
www.XMRVuk.org
www.XMRVeu.org
Forum participants from other countries you can go to www.godaddy.com and easily (and cheaply) register your countries too if you wish, and these are readily transferrable (at no cost) to a not-for-profit once they are established. GoDaddy can give you instructions how to do this - or I can email them to you.

Apologies that I lost track of who is doing the Facebook page and/or website. Was that you, @frickly? (And a huge thanks for that!) Let me know, and I can get a password to you when you are ready to upload info to the website. @ fresh eyes, youve done it again with the logo great work, and it really conveys the gravity of this virus very appropriate. @gracenote, I really like your emphasis on action verbs (eg. advocate vs believe). @islandfinn, thanks for your insightful, detailed feedback and @blackbeard, I agree, size MATTERS when it comes to advocacy!!! I'm trying to do this quickly, so apologies if I've missed anyone out - thank you all.:)

Ill follow with some more info in the next post, but wanted to let you know asap that the name you want is ours now! www.xmrvglobalaction.org :D
 

bullybeef

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The only problem is we don't know whether XMRV is a sleeper virus, alike Human T-lymphotropic virus 2. If XMRV proves to do nothing, a lot of people would have egg on their face.

I am more than frustrated that we have to sit and wait. But all we can do is tell the healthy what we know, that XMRV has been discovered, but the effects of which are still unknown.

All I say is that it is related to HIV, if you like, they are cousins. That gives an honest implication of its potential.
 

fresh_eyes

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The only problem is we don't know whether XMRV is a sleeper virus, alike Human T-lymphotropic virus 2. If XMRV proves to do nothing, a lot of people would have egg on their face.
Though even if it didn't directly cause illness, if many CFS people have it and the general population doesn't, it would prove CFS is not psychological but physiological - that counts for a lot.

I know, it's excruciating to wait!
 

Marco

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HI All

I know this had been discussed on another thread but I hadn't realised it had started until 50 odd posts in. Magnificent work everyone.

Unfortunately I have little to offer except, as I stated in another thread, I've been through this before having been a founder member of frenchhealthissues (FHI)
http://www.frenchhealthissues.eu/default.htm

The site is now archived as we were almost 100% successful in persuading the French government to reverse plans to retrospectively change the law relating to residency and access to health care. I include the link only as an example of website content.

Some things that we found important :

The founder members were all volunteers but it was necessary/sensible to assign roles and responsibilities depending on capabilities and at times to seek further volunteers from outside the core group e.g. for translations, another pair of hands etc.

A website is fine but has a tendency to appear static unless there is provision for interaction and regular updating. As has been said, one strength we have is that we all have a story to tell. The FHI site had a facility to contact by webmail where people could tell their stories, raise problems, track progress etc. The site also had a latest news section which kept the main site from appearing static. People are hungry for news but many do not or cannot just continually surf the net or will necessarily be able to pick out the important news items.

Thought needs to be given to the website content. A well designed site that is light on content won't retain vistors. Likewise, while its understandable to want to have something up and running there's nothing more offputting than sections waiting for content or links that don't link.

You IT buffs may know the tricks. I know that the frenchhealthisues site always appeared first in keyword searches.

Political pressure works. Many people wanted to write to their elected representative, the French government, the health ministry, the European Union etc but didn't know all the issues or how to write the letters (or even who to write to). The website held names and addresses of elected reps plus template letters for all purposes also translated into French where appropriate. Basically we made it as easy as possible for each individual to bombard the decision makers with personal correspondence.

Many governments make use of polls, petitions etc as part of their 'public outreach' - encourage everyone to use them.

Try to identify 'tame' politicians and cultivate them. Each individual should identify their public representative and contact them to provide their support
as all public reps should.

Finally, get friendly with the media. Public embarassment is the politocos no1enemy, particularly where they are vulnerable, and the media love public interest stories. I'm also sure science programmes such as the UK BBCs Horizon would love the XMRV story. So much going on - third? human exogenous retrovirus, cancer, ME/CFS, Gulf War Syndrome, public health risk, government cover ups etc?

Thats all I can think of off the top of my head. Apologies if its all obvious.

Mark
 

Frickly

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To the Group

We have two versions now. Any one care for a vote?:)

My first thought is that Parvos mission is a little long and difficult to read and changes the focus a bit. I like the the mission highlighted in red because it is clear that we are inviting all patient groups to join in a discussion about XMRV but think we could expand on this mission if needed.

With regard to the order of positions I like the order highlighted because, again our most important goal is to bring these groups together. Many of the patients in this group have no idea that there is a connection. For example, the autism moms I know have no idea that CFS could be related to their disease.

This is an important discussion as we should all be on the same page when it comes to our mission and goals and in what order of importance they come. Of course my vision of this website might be different than the groups. If so I am more than happy to use whatever we all agree upon.

Thanks Parvo, You have spent alot of time on this and I am very excited about it.

Name: XMRV Global Action xmrvglobalaction.org

Mission: Our mission is to create a global advocacy network for diseases associated with the retrovirus XMRV.
Position 1: Preliminary studies show that XMRV is associated with many poorly-understood illnesses.

Position 2: Effective advocacy is needed and by bringing these groups together we can accomplish this goal. There is strength in numbers...

Position 3: XMRV is likely in the blood supply. This potential contamination is a worldwide public-safety issue that must be given the highest possible priority.

Position 4: There is a critical need for accelerated availability of XMRV testing, research and care.

Position 5: There is a need for a coherent message and effective PR strategy for all groups and individuals who have XMRV associated diseases.



Mission: To accelerate global access to diagnostics, clinical trials, treatment, and prevention for diverse patient groups with the XMRV retrovirus, by sharing international best practices and joining our voices in XMRV advocacy.

1: The XMRV retrovirus is transmissible by blood, and is likely in the blood supply. This potential contamination is a worldwide public-safety crisis. (147)

2: XMRV is associated with debilitating and life-threatening, poorly-understood illnesses, including cancers and neuro-immune diseases. (132)

3: Some patients have been ignored for decades. There is a critical global need for accelerated access to XMRV testing, clinical trials, and treatment. (149)

4: We have strength in numbers. Vigorous global advocacy and sharing of best practices across diverse XMRV patient groups will drive accelerated change. (150)

5: We share a common need. A powerful and unifying PR strategy must demand swift and decisive action from governments and research bodies. (134)
 

Frickly

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What about this?

I have combined the two mission statements: What do you think?

Our mission is to create a global advocacy network for diseases associated with the retrovirus XMRV. By joining our voices, our intent is to drive accelerated global access to diagnostics, clinical trials, treatment, and prevention for diverse patient groups.
 

Frickly

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I like it! Other opinions?

That was my thought exactly, F.

Perhaps this?

Our mission is to accelerate global access to diagnostics, clinical trials, treatment, and prevention for diseases associated with the retrovirus XMRV by creating a global advocacy network.
 

bullybeef

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Though even if it didn't directly cause illness, if many CFS people have it and the general population doesn't, it would prove CFS is not psychological but physiological - that counts for a lot.

I know, it's excruciating to wait!
Hi Fresheyes,

With potentially 4% of healthy US controls confirmed, this isn't a small figure. When you analyse around 0.5% of the worlds population are carrying HIV, it emphasizes the huge figures involved with XMRV. That is why I think we need to raise awareness by exploring how we could gather the healthy populations concern into XMRV. One thing we don't yet know is why people may be at risk of XMRV, that gives us feasible leverage to explain that anyone is at risk of carrying the virus, and possibly at risk of ME/CFS infection etc, whatever the ramifications become once they are known

Again, going back to the numbers, if XMRV is prevalent worldwide, then 250 million healthy people could be oblivious carriers. That is nearly tens time greater than HIV/AIDS (approx 32 million carriers) and much greater than the ME/CFS population. ME/CFS may become lost because more people whom don't have ME/CFS would be XMRV infected. E.g.: In the UK, approx 250,000 suffer from ME/CFS, but based upon the research, there could be 2.5 million heathly XMRV carriers. The number of healthy carriers would be tens time greater than the ME/CFS population!

If XMRV is the holy grail, XMRV related ME/CFS will be redefined (XAND?) and the people whom are left behind would be treated the same. The governments may use this strategy to keep ME/CFS in the background.
 

fresh_eyes

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@BB - I completely agree. I didn't mean to downplay the level of XMRV that may be in the general population, just to emphasize that it's (apparently) much, much more prevalent in ME/CFS, which in itself proves that CFS is biological.

If XMRV is the holy grail, XMRV related ME/CFS will be redefined (XAND?) and the people whom are left behind would be treated the same. The governments may use this strategy to keep ME/CFS in the background.
This in particular seems exceedingly important - that's why I think it's essential for us to plan now for how to deal with it when it comes up.
 
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@ Islandfinn

Thanks for the welcome. I have not introduced myself... just sort of wandered in and looked around. And I found a very nice group who are dedicated to improving our lot in life. Wonderful.
 

Frickly

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This is what we have so far. I changed the Positions to the ones suggested by Parvo. I will put up the page if everyone is in agreement.

Name: XMRV Global Action xmrvglobalaction.org

Mission: Our mission is to accelerate global access to diagnostics, clinical trials, treatment, and prevention for diseases associated with the retrovirus XMRV by creating a global advocacy network.

Position 1:: The XMRV retrovirus is transmissible by blood, and is likely in the blood supply. This potential contamination is a worldwide public-safety crisis.

Position 2: XMRV is associated with debilitating and life-threatening, poorly-understood illnesses, including cancers and neuro-immune diseases.

Position 3: Some patients have been ignored for decades. There is a critical global need for accelerated access to XMRV testing, clinical trials, and treatment.

Position 4:We have strength in numbers. Vigorous global advocacy and sharing of best practices across diverse XMRV patient groups will drive accelerated change.

Position 5:We share a common need. A powerful and unifying PR strategy must demand swift and decisive action from governments and research bodies.
 

Frickly

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Odwc

Glad you wandered onto the forum. There is a wealth of information here.

WELCOME!:)

Thanks for the welcome. I have not introduced myself... just sort of wandered in and looked around. And I found a very nice group who are dedicated to improving our lot in life. Wonderful.
 

Frickly

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Parvo

"Our mission isnt about building a global network. That sounds almost bureaucratic."

I just wanted to comment on this. I think our first priority and part of our mission isto build a global network. Without this network we will be unable to accelerate global access to diagnostics, clinical trials, treatment, and prevention for diseases associated with the retrovirus XMRV.

Let me know what you think about the last version as I changed the priorities to your suggestions and we reworked the two mission statements and combined them.