parvofighter
Senior Member
- Messages
- 440
- Location
- Canada
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:
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:
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.
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?
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.5 Position Statements (must be under 150 characters for Facebook)
A template for a logo
Introductory info for a web 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:
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.
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?
