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

Countrygirl

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ME on death certificate



Hello bully beef,

My friend who died of ME was the local vicar, who had been ill for 20 years following a severe infection. Our local GPs were notorious for their hostility to anyone who had such a diagnosis and they told all of us - including the vicar - that it was all in our heads. It was very tough because they refused to sanction sickness benefits, although we were too ill to work. Same old story. However, my friend, after being ill for about 17 years, had surgery for another condition and, afterwards, the surgeon told him that what he discovered during the procedure convinced him of the reality of M.E :confused: All I know is that it concerned the state of the muscles. Sorry to sound so vague, but I don't think my friend was quite sure of the details.

Although he recovered from the surgery, his M.E. worsened and he became bed-ridden and was nursed by his wife. Sadly, she had an accident which resulted in her being admitted to hospital. The GPs were still dismissive of the illness, so refused to sanction any care for him whilst his wife was in hospital. As a result, he had no food or drink for something like a week or so. He just wasted away, and died a little while after his wife came out of hospital.

After the GP came to certify death, the wife telephoned me with news that neither she nor I could believe: the non-believing GP said that ME was the cause of death and wrote it on the death certificate!!!!! It was extraordinary. We felt that it was a big breakthrough, but we were wrong. His partners made him toe the party line again, and he reverted to being dismissive of his M.E. patients. :( I guess he regreted seeing the light for a brief five minutes.

I know that others have had M.E. registered as the cause of death since then because I keep reading that it is for the first time. Not so.
 

Frickly

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fresh eyes and gracenote

I also like the simple mission statement and have changed the wording of the positions. Remember, the positions can only have 150 characters. Once I get the page up then we can expand on the mission statement and the positions. We can also talk more about the illness' that may be impacted by the XMRV retrovirus and provide links to other websites. The following is what we have so far:


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 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 2 Preliminary studies show that XMRV is associated with many poorly-understood illnesses. Further research, testing, and treatment is urgently needed.

Position 3 Effective advocacy is needed and by bringing these groups together we can accomplish this goal. There is strength in numbers...

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 that demands swift and decisive redress for the decades of medical neglect.
 
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@ Islandfinn

Islandfinn...I do understand the concern re the source the info at the link I posted. However, Drs Klimas, Peterson, and Lerner, amongst others, helped to author that paper. I am not too concerned. ;)
 

Frickly

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OK, re-ordered the positions. Let me know what you think...

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 that demands swift and decisive redress for the decades of medical neglect.
 
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I'm starting to fade, but here are some ideas to chew on:

I also like the simple mission statement and have changed the wording of the positions. Remember, the positions can only have 150 characters. Once I get the page up then we can expand on the mission statement and the positions. We can also talk more about the illness' that may be impacted by the XMRV retrovirus and provide links to other websites. The following is what we have so far:


Name: XMRV Global Action xmrvglobalaction.org

Mission: Our mission is to create a global advocacy network for diseases associated with the retrovirus XMRV.
Agreed -would it be too breezy to have Mission: To create a global action network for............

Position 1 XMRV is likely in the blood supply. This potential contamination is a worldwide public-safety issue that must be given the highest possible priority.
Nice, strong, effective - tells everyone why they should care - it could happen to them

Position 2 Preliminary studies show that XMRV is associated with many poorly-understood illnesses. Further research, testing, and treatment is urgently needed.
What about adding a bullet list of the other diseases between the 2 sentences. I think it has an impact. I feel we should stay away from negative language about some mistaken old perceptions and just show positive current thought. Also, what comes 1st is most powerful.

Also, some of the second sentence is covered in #4. Maybe here focus on research and testing and in #4 focus on treatment and care?

eg

XMRV has been associated with the following diseases (could we add 'for which no cure exists) in preliminary studies:
  • ME/CFS
  • Prostate Cancer
  • Fibromyaliga
etc
Further research and testing is urgently needed.

Position 3 Effective advocacy is needed and by bringing these groups together we can accomplish this goal. There is strength in numbers...
Maybe one of our media/PR people can come up with something more slogany like "THere is strength in numbers. Together we can find the cures"

Position 4 There is a critical need for accelerated availability of XMRV testing, research and care.
see notes in #2. Maybe something like, Preparation for xmrv associated diseases treatment and care must begin now.

Position 5 There is a need for a coherent message and effective PR strategy that demands swift and decisive redress for the decades of medical neglect.
Again, my personal tendency is to avoid references to a negative past. I think it can redirect interest and weaken focus.

Maybe: THere is a need for a coherent message and effective PR strategy for all groups and individuals who have any of the xmrv associated diseases.
 
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oops - my misunderstanding:eek: ODWC. I misread it and thought you had said the quote was from the mefmaction's site, and not from the Canadian Expert Consensus Document - or actually the Overview, itself (which I champion at every opportunity as you will come to see). I didn't check out the link itself.

Islandfinn...I do understand the concern re the source the info at the link I posted. However, Drs Klimas, Peterson, and Lerner, amongst others, helped to author that paper. I am not too concerned. ;)
 

fresh_eyes

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Again, my personal tendency is to avoid references to a negative past. I think it can redirect interest and weaken focus.
Hm, thinking about it more, I think IF may be right again. The negative past is such a can of worms. (And we probably won't get much buy-in on how badly we've been treated until *after* the research is done.)

Maybe: Now is the time for people concerned with these diseases to unite to pressure governments and agencies solve them. ?
 

Frickly

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I'm starting to fade, but here are some ideas to chew on:



Agreed -would it be too breezy to have Mission: To create a global action network for............


I'm leaning more towards our current statement but am more than willing to change it if others agree. What do you think guys?

Nice, strong, effective - tells everyone why they should care - it could happen to them



What about adding a bullet list of the other diseases between the 2 sentences. I think it has an impact. I feel we should stay away from negative language about some mistaken old perceptions and just show positive current thought. Also, what comes 1st is most powerful.

I would love to add a bullet list but remember, only 150 characters. I think it will be very important to highlight these illness' that are potentially impacted by XMRV and we will definitly do that.

Also, some of the second sentence is covered in #4. Maybe here focus on research and testing and in #4 focus on treatment and care?

My husband noticed this and corrected it. Let me know if I need to look at it again.
eg

XMRV has been associated with the following diseases (could we add 'for which no cure exists) in preliminary studies:
  • ME/CFS
  • Prostate Cancer
  • Fibromyaliga
etc
Further research and testing is urgently needed.

Yes, good idea. I am trying not to get overwhelmed so I think we can get the logo and I will put up the page with the mission and positions. Then we can decide where we want the info on the associated diseases, ect. Forgive me but I get overwhelmed easily and am trying to take this one step at a time. I also think talking alot about our mission and positions and making sure we are all in agreement on this will help us with the rest of the facebook page and website.


Maybe one of our media/PR people can come up with something more slogany like "THere is strength in numbers. Together we can find the cures"

Any help here guys?

see notes in #2. Maybe something like, Preparation for xmrv associated diseases treatment and care must begin now.

Are you saying change the position 2 to the above? Sorry, I'm tired.

Again, my personal tendency is to avoid references to a negative past. I think it can redirect interest and weaken focus.

Maybe: THere is a need for a coherent message and effective PR strategy for all groups and individuals who have any of the xmrv associated diseases.
I made a note of this on my word document and we can come back to it tomorrow and get opinions. I'm tired and can't think any more.

Thanks for all the feedback. I think it is coming together nicely.
 
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Islandfinn.. It's OK. I could have been more precise about what I was posting. Obviously, the researchers think the conditions mentioned can be associated. But until further research and testing is done, who knows to what extent. For example, ppl with Mitral Valve Prolaspe don't always have symptoms... I think about 40% do, if I remember correctly. Could it be XMRV that triggers those symptoms? Time will tell.

I know nothing about doing a Facebook page, but thought I contribute what I could.

And, yes, I would agree with "very nicely". :)
 

Martlet

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Sadly, she had an accident which resulted in her being admitted to hospital. The GPs were still dismissive of the illness, so refused to sanction any care for him whilst his wife was in hospital. As a result, he had no food or drink for something like a week or so. He just wasted away, and died a little while after his wife came out of hospital.
I read this story - and recounted it to my husband - with tears streaming down my face. That poor, poor man. And then to write ME on the death certificate!

You know, if we were really mentally ill, we'd be given better care than we get now!
 

Lily

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Just reiterating some of Dr. Klimas's talk .....

anything in here that you can use?

I know New Zealand has a terrific group, the ANZMES group. Excellent groups in England and Ireland; ME Trust and others. Barcelona has a fabulous group. There are a lot of different places where one can put their donation dollars and make a big difference. And it would be a really good year to make that your plan.


Slide The Importance of Advocacy
No better time than now to let your government (know) that 20 years of trivializing this devastating illness has stopped and it is payback time.
Demand clinical trials
Demand serious research funding, set aside dollars big enough to deal with an illness that has hurt 1 million Americans
Demand private disability companies retract the mental illness decisions and payback your lost income


In addition to fund raising, now is an awful good moment for you advocates. This is a good time and you are all advocates for your own illness. No better time than now because you have a passionate story. Youve spent 20 years with an illness thats been basically blown off (Audience 30!). A Long time. So, you know you are standing in a position where people should feel a little embarrassed, you know a lot embarrassed, a whole lot embarrassed. Your government should feel like they have a true obligation.
 

parvofighter

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Website domain registered: www.XMRVGlobalAction.org

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
 

parvofighter

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Other international:

It's happening... :)Take a look at http://diagnosesupport.com/main/content/blogsection/24/174/ A great website, and they also have:
A list of national efforts and translations ... & reposted publications per language:
  • Dansk / Danish
  • Deutsch / German
  • Espaol / Spanish
  • Franais / French
  • Italiana / Italian
  • Nederlands / Dutch
Also see the following on Facebook: XMRV campagne voor CVS,ME,FM,MS,Autisme,Etc. in Nederland & Belgi http://www.facebook.com/pages/XMRV-...n-Nederland-Belgie/216692830498?v=wall&ref=nf . I'm assuming this means XMRV Campaign for CFS, ME, FM, MS, Autism, etc. in the Netherlands and Belgium.

Could someone connect with these folks and give them our link? We can help each other make this XMRV action a global wave. Strength in numbers.:D
 

bullybeef

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Hello bully beef,

My friend who died of ME was the local vicar, who had been ill for 20 years following a severe infection. Our local GPs were notorious for their hostility to anyone who had such a diagnosis and they told all of us - including the vicar - that it was all in our heads. It was very tough because they refused to sanction sickness benefits, although we were too ill to work. Same old story. However, my friend, after being ill for about 17 years, had surgery for another condition and, afterwards, the surgeon told him that what he discovered during the procedure convinced him of the reality of M.E :confused: All I know is that it concerned the state of the muscles. Sorry to sound so vague, but I don't think my friend was quite sure of the details.

Although he recovered from the surgery, his M.E. worsened and he became bed-ridden and was nursed by his wife. Sadly, she had an accident which resulted in her being admitted to hospital. The GPs were still dismissive of the illness, so refused to sanction any care for him whilst his wife was in hospital. As a result, he had no food or drink for something like a week or so. He just wasted away, and died a little while after his wife came out of hospital.

After the GP came to certify death, the wife telephoned me with news that neither she nor I could believe: the non-believing GP said that ME was the cause of death and wrote it on the death certificate!!!!! It was extraordinary. We felt that it was a big breakthrough, but we were wrong. His partners made him toe the party line again, and he reverted to being dismissive of his M.E. patients. :( I guess he regreted seeing the light for a brief five minutes.

I know that others have had M.E. registered as the cause of death since then because I keep reading that it is for the first time. Not so.
Thanks for recounting that CG. Absolutely tragic. If the common man knew that ME can be so destructive, there wouldn't be such a stigma.

I would like to think once XMRV is proved to be the cause or effect, then the floodgates will open.

It a shame these people whom have passed and won't see this ME/CFS revolution.

Hey, there's a good name: THE ME/CFS XMRV REVOLUTION.