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

[Frickly]

XMRV Global Action?

I like this one and we could make the web domain name XMRVGlobal. Will have to make sure this is available.

I lie here amazed! So exciting. So needed.

For the name - I like either xmrv action international or xmrv action global or xmrv global action (would that be pronounced zag?)

I love the idea of getting other diseases on board asap. I wonder about having a person or few who are interested in one of the other diseases be a spokesperson for our group who would be the liaison person/group to approach organizations for the other disease and see about getting them involved as well.

A very small point, think that prostate cancer should be 1st in any list of related diseases - xmrv found there 1st + a men's disease + fatal, think all catch attention

What do you think about talking to existing ME/CFS groups to see if they're interested in participating, if they have contacts.......

yay everybody

islandfinn

 

[Countrygirl]

Hello Bully Beef,

Just to say that a friend of mine, who was ill for 20 years with M.E. also had it officially recorded as his cause of death, too That was about 8 years ago, so Sophia was not the first in England.

 

[Frickly]

Mission: To bring awareness to the possible connection between diseases such as Chronic Fatigue Syndrome, Autism and Gulf War Illness and to advocate for XMRV research, testing and treatment.

Ok.....help me out guys. What disease do want listed? Any ideas on how to improve on the above?

Autism
Atypical MS
Cervical Cancer
Gulf War Illness
Irritable Bowel Syndrome
Lyme Disease
Multiple Chemical Sensitivity
Niemann-Pick Type C Alzheimer’s
Prostate Cancer

It's difficult to put this whole list in a mission statement

Not *at all* - I'm thrilled! And I have plenty on my plate right now. I totally appreciate you guys doing it.

ETA I agree that a good mission is to bring awareness to the possible connection between all these diseases and XMRV, and to advocate for urgent XMRV research. We can bring people's attention to it by commenting on *their* Facebook pages (autism groups, etc.), with a link to ours. Perhaps we could even get other groups to officially "join" the Network.

In the future, maybe we could make a related page around the broader topic of "unexplained illness," which is an important topic too - that "uncertain pathogenesis" does not equal "all in your head". But I think for now we should just stick to "XMRV might be causing your unexplained illness."

 

[bullybeef]

Hello Bully Beef,

Just to say that a friend of mine, who was ill for 20 years with M.E. also had it officially recorded as his cause of death, too That was about 8 years ago, so Sophia was not the first in England.

I am very sorry to hear that CG, was her death reported? I understand it is a delicate subject, and if you don't mind me asking (I understand if you would rather not), do you know her cause of death in relation to ME/CFS?

I have a suspicion that many probable ME/CFS causes of death have been lost in autopsies.

 

[Frickly]

Cort

Where is this sub forum?

I just opened a Projects SubForum: I'm going to copy this thread to there. (It'll be in both places)

You might want to start a 'Social Group' as a way to organize people to carry this out.

Good luck!

 

[leelaplay]

It is a mouthful Frickly (nice typo I just made - Friskly - I like it). Is this getting any closer?

To advocate for XMRV research, testing and treatment and to raise global awareness of its possible connection to diseases such as ME/CFS, Prostate Cancer, Autism, Atypical MS, Cervical Cancer, Gulf War Illness, Irritable Bowel Syndrome, Lyme Disease, Multiple Chemical Sensitivity, and Niemann-Pick Type C Alzheimers.

Mission: To bring awareness to the possible connection between diseases such as Chronic Fatigue Syndrome, Autism and Gulf War Illness and to advocate for XMRV research, testing and treatment.

Ok.....help me out guys. What disease do want listed? Any ideas on how to improve on the above?

Autism
Atypical MS
Cervical Cancer
Gulf War Illness
Irritable Bowel Syndrome
Lyme Disease
Multiple Chemical Sensitivity
Niemann-Pick Type C Alzheimers
Prostate Cancer

It's difficult to put this whole list in a mission statement

 

[OurDayWillCome]

RE groups.... Just remebered something I read on mefmaction.net.

"Co-morbid Entities: Fibromyalgia Syndrome (FMS), Myofascial Pain Syndrome (MPS), Temporomandibular Joint Syndrome (TMJ), Irritable Bowel Syndrome (IBS), Interstitial Cystitis, Irritable Bladder Syndrome, Raynaud’s Phenomenon, Prolapsed Mitral Valve, Depression, Migraine, Allergies, Multiple Chemical Sensitivities (MCS), Hashimoto’s thyroiditis, Sicca Syndrome, etc. Such co-morbid entities may occur in the setting of ME/CFS. Others such as IBS may precede the development of ME/CFS by many years, but then become associated with it. The same holds true for migraines and depression. Their association is thus looser than between the symptoms within the syndrome. ME/CFS and FMS often closely connect and should be considered to be “overlap syndromes”."

http://www.mefmaction.net/documents/ME_Overview.pdf

Maybe a list of Primary disoeders, then comorbid?

 

[fresh_eyes]

I like this one and we could make the web domain name XMRVGlobal. Will have to make sure this is available.

I don't know about you guys, but I always get confused when the domain name is not the same as the site name (like Phoenix Rising) - so I'd prefer xmrvglobalaction.org.

Are we ready for a logo? XMRV Global Action?

 

[Lily]

I agree fresh eyes....

Let's see a logo

 

[Frickly]

xmrvglobalaction.org is available and I like it too. I think we are ready for a logo unless anyone objects to the above.

 

[Frickly]

I agree

We can refine the list once I get all the other info I need. Possibly take out the Irritable bowel syndrome andmultiple chemical sensitivity.

RE groups.... Just remebered something I read on mefmaction.net.

"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. Such co-morbid entities may occur in the setting of ME/CFS. Others such as IBS may precede the development of ME/CFS by many years, but then become associated with it. The same holds true for migraines and depression. Their association is thus looser than between the symptoms within the syndrome. ME/CFS and FMS often closely connect and should be considered to be overlap syndromes."

http://www.mefmaction.net/documents/ME_Overview.pdf

Maybe a list of Primary disoeders, then comorbid?

 

[fresh_eyes]

Great. Logo will be done by tomorrow. It can be refined as we go on too.

 

[leelaplay]

Good memory ODWC

So if we had primary diseases listed in the mission statement, it would be something like this:

To advocate for XMRV research, testing and treatment and to raise global awareness of its possible connection to diseases such as ME/CFS, Prostate Cancer, Fibromyalgia, Autism, Atypical MS, Cervical Cancer, Gulf War Illness, Lyme Disease, Niemann-Pick Type C Alzheimers.

And elsewhere there would be the list of comorbid entities?

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


Such co-morbid entities may occur in the setting of ME/CFS. Others, such as IBS may precede the development of ME/CFS by many years, but then become associated with it. The same holds true for migraines and depression. Their association is thus looser than between the symptoms within the syndrome. ME/CFS and FMS often closely connect and should be considered to be overlap syndromes.

IMO, if we were to post this, we would find the source that mefmaction used if we could.
http://www.mefmaction.net/documents/ME_Overview.pdf


I think I remember that in lists, people tend to remember the first and last few so thats where you want the big hitters.

Also think its important to have every bit of info supported, with the link nicely hidden.

 

[OurDayWillCome]

Frickly... OK with me. If building numbers and support is the aim, then the more, the better I would think. And I don't believe there is any clear idea at this point just how many disorders will be linked to XMRV.

 

[OurDayWillCome]

@islandfinn...glad I remembered that! I am not always so fortunate.

 

[Frickly]

Ok while Islandfinn is working on the logo we can think about the position statements. We can have up to five. I jotted down a couple but please feel free change them as I am not the writer I used to be.

Name: XMRV Global Action – xmrvglobalaction.org

Mission: To advocate for XMRV research, testing and treatment and to raise global awareness of its possible connection to diseases such as ME/CFS, Prostate Cancer, Fibromyalgia, Autism, Atypical MS, Cervical Cancer, Gulf War Illness, Lyme Disease and Niemann-Pick Type C Alzheimer’s.

Position 1 We believe there is a connection between these diseases and the common factor may be XMRV.

Position 2 More effective advocacy is needed and we believe bringing these groups together can accomplish this goal. We believe there is strength in numbers.

Position 3 We believe it is important to Accelerate availability of XMRV testing, research and care.

Position 4 There is a need to develop a coherent message and effective public relations strategy that demands swift and decisive redress for these decades of medical neglect.

Position 5

 

[leelaplay]

xmrvglobalaction.org mission statement

Here's where we've gotten so far in roughing out a mission statement:

To advocate for XMRV research, testing and treatment, and to raise global awareness of its possible connection to diseases such as ME/CFS, Prostate Cancer, Fibromyalgia, Autism, Atypical MS, Cervical Cancer, Gulf War Illness, Leukemia, Lymphoma, Lyme Disease, and Niemann-Pick Type C Alzheimers.

I found a site that has good examples of mission statements. Maybe it would help refine our mission statement.

eg

PANPHA
1100 Bent Creek Boulevard Mechanicsburg, PA 17050

Slogan / Motto
an association of nonprofit senior services

Description
Established in 1963, PANPHA is an organization that represents nursing homes, retirement communities, as well as personal care and independent housing facilities and community service providers. Their outreach plans include home health care, hospice care, counseling, adult day care, respite care, meals-on-wheels, etc.

Mission Statement
PANPHA represents over 320 nonprofit providers of long-term care and housing services for 65,000 elderly residents across Pennsylvania. The Association is committed to helping its members provide quality care efficiently and effectively for the individuals and families they serve. In an age of impersonal care, PANPHA members put people before profits.

American Antigravity
American Antigravity 9738 NE 138th Place Kirkland, WA 98034

Description
Headquartered in Kirkland, WA, American Antigravity is a non-profit organization that offers support and services to scientists and inventors who work to achieve new knowledge in certain disciplines. They do so in order to encourage newfound information, and to aid people learn more about the emerging science & technology.


Mission Statement
The mission of the American Antigravity Corporation is to provide online scientific and educational material and support to the scientific community and general public, relating to aerospace, renewable energy, and other scientific disciplines. American Antigravity fosters learning and academic excellence by working with scientists, educators, and inventors to create a safe, fulfilling, and academically enriching environment for breakthrough science.

Later, I'll try to look for resources on good position(ing) statements, and know some orgs also have vision statements, so maybe them as well.

 

[Frickly]

Thanks,

I edited my last post to revise the positions using some of Parvo's info on the first post.

 

[gracenote]

use of words

This is really spectacular. My two cents . . .

I think using words like "To advocate . . .", "To provide . . .", is much stronger than "We believe . . ." for stating our mission and positions.

 

[fresh_eyes]

a few thoughts

I wonder if we should move the names of the diseases out of the Mission and into the first Position? I'd like it if the mission was really easy to take in. Also it might be important to provide just a little more info in case people are totally unfamiliar with the research? A la:

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, including ... Further research, testing, and treatment is urgently needed.

Another position idea:

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

ETA I agree with gracenote re: phrasing, getting away from the word "believe".

Rock on, advocates!