So What are We Doing??? (boing, boing, bounce)

[George]

In light of the recent very well coordinated messages coming from the United Kingdom I was wondering if we as a patient community were interested in mounting a nice attack of our own and if so for what, doing what and to what ends?

I would personally like to send a reply directly to the Wellcome Trust stating that the research done by Hue et al and others does not negate XMRV as a human pathogen and that their current press release was in direct opposition to their stated mission (see below) and specifically ask them to retract the statement.

Wellcome Trust in its strategic plan 2010-2020[6], the Trust has identified five major challenges - each of which address fundamental problems that confront human and animal health:

* Maximising the health benefits of genetics and genomics

Covering a wide array of research into how genes affect health and disease, and work to ensure that this knowledge leads to new ways to diagnose, treat and prevent illness.

* Understanding the brain

Support for research to improve understanding of how the brain functions and to find improved approaches for treating brain and mental health disorders.

* Combating infectious disease

Finding new ways to prevent and treat the bacterial, viral and parasitic diseases that kill millions of people worldwide every year.

* Investigating development, ageing and chronic disease

Develop an integrated understanding of how the body develops, functions and ages, and of the factors that contribute to the onset and development of chronic disease.

* Connecting environment, nutrition and health

Global health is under serious threat from the interlinked issues of access to nutrition, food security and climate change. The aim is to foster a multidisciplinary approach to address these problems.

Not that I think they will but I love stuffing up mail boxes. (grins) It makes the Computer techs complain to the CEO's a lot. (big grins)

Second I would like to send a round of e-mails to the various journals asking why they are not publishing additional information in regards to XMRV/HGMV's in a timely manner. I would also like to include a CC to the heads of NIH, FDA, CDC and others regarding a more fair and balanced role in publishing information in a timely manner as well. While the government can't make the journals publish anything they don't want to publish, shining a light on the fact that there are many unpublished data in regards to XMRV/HGRV's may put the pressure on to bump those chocolate studies and publish XMRV information instead.

Third I think questioning Johnathan Stoyes overstepping his bounds as a questioner at the FDA panel meeting would be a good ideal. It's not that you can't have an invited speaker which he was but to have him interjecting during the questioning was out of place. Again shining a light and letting members of the FDA (not the panel but the people at the top) know that we see this behavior and question it could work in our favor.

I think also sending out links to all of the media outlets with a link to the XMRV Global action facebook page they have a very nice write up that questions the poor journalism or printing the the Wellcome Trust Press Release without checking facts. That would be a good ideal as well.

I know everybody is busy for the holidays but I think if we could get these four simple e-mail campaigns up and running with a nice template for folks to use we could at least let our voice be heard and let the people behind this nice blitz know that we are not cowed by all their hard work and bluster it would help us all feel more empowered. It would also show support for the scientist that are working so hard on our behalf.

So what do folks think???

 

[SOC]

Great ideas, George. You (or somebody) make the templates, I'll send the emails.

My ability to construct an intelligent and coherent communication is very erratic and seems to be the first thing to go if I'm the least bit tired. :headache:

 

[Stone]

I'm in, but like Sickofcfs, I'm in a similar slump with my ability to put thoughts on paper in a meaningful way at the moment, but I can certainly use a template or some such device and make it my own for sure. This sounds like a good plan, but I wish we could think of something new as well. What hasn't been done already? Hmmmm. I'll think on that a while. Meanwhile, I'm willing to go forward with these emails. Giddy up!

 

[George]

I'm going to try to come up with a well thought out letter or two tonight. I'll get e-mail addresses for the Wellcome trust people and put a list together for the various head of agencies. It might take a day or two so rest up and relax get your energy back. (grins)

 

[ukxmrv]

George, there are a few of us in London who could possibly turn up at the Wellcome building to present your letter if that would help. It's pretty central and prominant....

 

[George]

Wow, that's a really cool thought ukxmrv. I was just by the mecfsforums and they are writing a up a really nice scientific rebuttal. A lot of really good brains working on it. I think the plan is to send the rebuttal to the BMJ and to the Journal Retrovirolgy as commentary. IF and this is an IF right now they would be willing to let the larger patient community use their work with proper attribution we could do the following and have more impact for less work.

Take the rebuttal they send to the journals and dumb it down just a bit turning it into a Press Release with a nice splashy head line like "Bloody Brits at UCL LIE Like Dogs" (grin) just joking (maybe) then get the folks over at the ME/CFS Worldwide Patient Alience to put together another full page ad to go with the press release then what the patient community would have to do would be to put up the cash to run the ad. (I would like to nominate the Chicago tribune for this round of ad awareness, Big evil grins)

If we work it between now and say January 5th for the donations, and target having the ad ready to go to press by the 10th then we should see it in print by the 15th when scientist are back at labs and colleges from the holidays.

It's a thought, I've ask over at the other forums if they would be amendable to the ideal. So we will see what happens next. Having read what you said about the Wellcome building in the UK makes me wonder if we might collect enough money to have the ad run in the UK. Do you think any of the papers would print it if we put the money together??????

 

[ukxmrv]

I'm not sure George about the papers. Not had that experience. We have the SMC who do a good job of controlling what our papers print on ME/CFS and that means little complimentary stuff gets through. Their advertising wing would probably not have been targetted and we could be something through under their radar!

At the moment I'm pretty dead but happy to save up my energy and mount a protest outside their building when the time comes.

 

[Esther12]

I'm slightly drawn to inaction with XMRV at this point. Research is continuing, and we're hopefully moving closer towards finding out what's going on.

While the Wellcome study was dishonestly promoted, they might still be right that XMRV is just a contaminant, and not a possible factor in CFS. If we promote a big campaign attacking them, and it then turns out that they were right all along, we'd have made ourselves look worse and them look better. The WPI and Mikovits have also made some pretty bold claims about their work to the media, and we could look like we're not campaigning against misleading scientific claims, but rather science which we do not like.

I think that the way the Wellcome trust study was reported should be remembered, and it's a useful debating point for those who want to dismiss XMRV on the basis of some of the looser talk that's come from the WPI, but I don't think it's worth targeting with any real action at this point.

All imo of course.

 

[Sam Carter]

I'm slightly drawn to inaction with XMRV at this point. Research is continuing, and we're hopefully moving closer towards finding out what's going on.

While the Wellcome study was dishonestly promoted, they might still be right that XMRV is just a contaminant, and not a possible factor in CFS. If we promote a big campaign attacking them, and it then turns out that they were right all along, we'd have made ourselves look worse and them look better. The WPI and Mikovits have also made some pretty bold claims about their work to the media, and we could look like we're not campaigning against misleading scientific claims, but rather science which we do not like.

I think that the way the Wellcome trust study was reported should be remembered, and it's a useful debating point for those who want to dismiss XMRV on the basis of some of the looser talk that's come from the WPI, but I don't think it's worth targeting with any real action at this point.

All imo of course.

I agree with this. We don't have a validated test for XMRV and until one is developed the association between XMRV and any disease remains unproven.

It troubles me that VIPdx continue to offer two XMRV tests whose reliability is unknown -- do they ever produce false positives, for example? They must, but you wouldn't know that from reading the FAQ page.

 

[ukxmrv]

Whether XMRV does prove to be right or wrong for ME, I'm not happy with the way that the Wellcome Truth and Dr Towers in particular have acted.

We need good research on ME in the UK and this is too good an opportunity to remind the Scientists that we still need this. I'm happy to be organised in actions around how they acted as we can get some good points across. If they are going to go to this length to "disprove" XMRV, let them put their money and energy into finding the cause of ME.

Prof Towers spoke out as if he wanted to "save" ME patients from the dangers of antiviral drugs, yet Prof Towers and his colleagues didn't help "protect" me from graded exercise and CBT. The hypocrisy stinks.

In the UK funding suddenly appeared for Wessely, McClure etc whilst scientists who do want funding to find the cause of ME are turned down. This is a good opportunity to try and get some publicity for proper research.

 

[glenp]

TY

Thank God for all of you

I am not up to doing much (brain usage) there may be many more like me that could help if it was SIMPLE. Feel free to add me to any. Maybe those that can send the letters to us with instructions (CC) With CC it might not be as much work for those that can? IDK the answer. Back awhile when we were sending a CC to a member here- that seemed to work I am also having puter probs - I got a new one and had too many probs getting it up and going so had to take it back. Maybe when I get a new puter up and going it will be easier too as I can't save anything on this netbook. I bet there are more like me- and embarassed to say they can't do it

God bless you all