Something is bothering me and I want to share it.
As those with chronic illnesses who read this will no doubt be aware, the Whittemore Petersen Institute (WPI) is shortlisted for a Chase Community Giving charity award. That award will be based on how many votes the WPI secures via Facebook and the amount can be up to HALF A MILLION DOLLARS.
Let's go back a step though. In becoming part of the online community of people with ME or CFS or whatever we define it as, I see active communities running into the thousands in terms of numbers of members. One desire seems to unite us - a desire for robust biomedical research to determine why we are sick and how we can be effectively treated/cured.
I'm sure you know where I'm headed with this post. Along comes a financial institution who is prepared to give up to HALF A MILLION DOLLARS to fund this research. And all we have to do is click a few buttons on Facebook and vote.
So here's what bothers me. The first round saw the WPI collect a decent enough number of votes but a tiny amount when you consider how many people are active on Facebook and have a vested interest in ME/CFS and in helping find a cure. The second round started today and we are struggling to stay in the Top 10. We are being beaten by a marching band!
So here's what bothers me. The first round saw the WPI collect a decent enough number of votes but a tiny amount when you consider how many people are active on Facebook and have a vested interest in ME/CFS and in helping find a cure. The second round started today and we are struggling to stay in the Top 10. We are being beaten by a marching band!
It's all well and good us trying to gain votes from our friends etc but, really, votes purely from that online community I keep mentioning should see us storm this contest and bank HALF A MILLION DOLLARS.
I know I'm preaching and I know we are all sick but really there can be no second chance for something like this. We will regret it for years if we do not squeeze every cent out of this charity award. HALF A MILLION DOLLARS (last time, promise).
Anyone who reads this, the message is simple. Vote. Please. This isn't X Factor or American Idol and this isn't some lame popularity contest. This is the potential for people to get their lives back.
Full instructions below. Oh, and please don't let the 'unsecure connection' warning put you off. Nobody is going to steal your identity during the 2 minutes you use a Facebook app to vote.
Thank you.
STEP-BY-STEP Instructions:
1. From your Facebook page, go to Chase Community Giving:
http://www.facebook.com/ChaseCommunityGiving .
2. "Like" Chase Community Giving by clicking on the "Like" button.
3. Now search for Whittemore Peterson Institute for Neuro-Immune Disease.
4. Cast your vote for WPI by clicking the "Vote Now!" button.
CHASE COMMUNITY GIVING: BIG IDEA
The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) was created to answer a critical need for discovery and medical treatments for those with serious illnesses that impact the body and the brain. These often debilitating and life-long diseases, including M.E., CFS, fibromyalgia, post Lyme disease, GWI and autism, have too few medical solutions. WPI continues to make significant strides through the work of their innovative research program. Translating novel research into effective patient treatments for millions around the world will begin with the opening of their 10,000 sq. ft. medical facility. Here they will engage in revealing clinical trials and provide onsite care to those who are unable to afford care. The WPI require funding for initial expenses and to establish a patient fund. WPI’s commitment to discovery has already inspired much hope worldwide. Now it is time to put hope into action by offering meaningful patient care to these underserved populations.
1. From your Facebook page, go to Chase Community Giving:
http://www.facebook.com/Ch
2. "Like" Chase Community Giving by clicking on the "Like" button.
3. Now search for Whittemore Peterson Institute for Neuro-Immune Disease.
4. Cast your vote for WPI by clicking the "Vote Now!" button.
CHASE COMMUNITY GIVING: BIG IDEA
The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) was created to answer a critical need for discovery and medical treatments for those with serious illnesses that impact the body and the brain. These often debilitating and life-long diseases, including M.E., CFS, fibromyalgia, post Lyme disease, GWI and autism, have too few medical solutions. WPI continues to make significant strides through the work of their innovative research program. Translating novel research into effective patient treatments for millions around the world will begin with the opening of their 10,000 sq. ft. medical facility. Here they will engage in revealing clinical trials and provide onsite care to those who are unable to afford care. The WPI require funding for initial expenses and to establish a patient fund. WPI’s commitment to discovery has already inspired much hope worldwide. Now it is time to put hope into action by offering meaningful patient care to these underserved populations.
The reason is because some of us are doing exactly as directed but the vote will not process. I wrote to Chase twice during the last round informing them that some people were having problems but got no reply.
ReplyDeleteAs an experiment I tried voting for another cause but that would not take the vote either.
So bloody frustrating. I will try on my hubbys laptop when he gets home from his trip, but I know it is not just me.
I agree the app is glitchy. I had the same problems with Chrome and had to switch to Firefox to get my vote registered. Then again, someone else just said they had to switch from Firefox to Internet Explorer.
ReplyDeleteI've had no trouble voting - and have been spreading the word via FB and Twitter as fast as I'm able. Feel frustrated by the lack of response too!
ReplyDeleteThanks Nicky :) I'm just so excited by what this money could do for us. The fact we could have a functioning treatment clinic set up by the WPI as a result of winning this competition is massive. I'm conscious people are ill and doing the best they can and I hate harrassing people to do stuff but I worry we might miss a golden opportunity we regret for years to come.
ReplyDeleteYou can post on any yahoo groups to which you belong, and craig's list as well. I have sent mass emails (blind copy) to lots and lots of lists I have for other parts of my life, plus I have faxed the flyer made by catch on the mecfs forum. There are many, many things we can each do to generate as many votes as possible.
ReplyDeleteIf people have problems, they could post them on the WPI Facebook page - people there should be able to come up with various suggestions (we did last time) e.g. try with a different browser.
ReplyDeleteI think more people should be voting for the CFIDS Association of America who have funded a lot of good research.
ReplyDeleteIf people go to the trouble of voting for the WPI, it won't take much more effort to also vote for the CAA.
Barry I am going to re post your blog entry on mine if thats ok. I had planned on doing a post for this today anyway but you have said it better than i ever could ... I will credit you of course :-)
ReplyDeleteI truly admire your passion Barry, but respectfully disagree that the WPI efforts will lead to anything that will help us.
ReplyDeleteUnfortunately they picked a researcher who admitted she knew nothing about ME/CFS, and put her in charge -- a huge mistake considering this is a multifactorial illness.
Plus, she withheld critical information about the Science study from Dr. Peterson (who knows a lot about ME/CFS) which led him to resign. A YEAR later, and they still don't have a new medical director. That says a lot.
Hi Johnny,
ReplyDeleteThank you for taking the time to comment. I confess, I don't have a complete grasp of all of the politics behind the WPI - it's difficult enough keeping up with finding my own treatment plan.
However, I think my simple take on this competition is that, of the 100 charities who are eligible for receiving up to $500,000, the WPI are more likely to make a difference for M.E. patients than a marching band or botanical garden.
Whether that $500,000 is 'well spent' or not is a debate for another day. I'd much rather they had the money so we could then have that debate.
Hi Barry
ReplyDeleteI have ME and will not be voting for the WPI. I would have up till the beginning of this year but since then i feel the science has progressed to the point that the xmrv connection isn't looking credible anymore (i'm no scientist).
The doubt started when i read the Towers paper and the study by Singh killed off any hope for me. Only the other day they published xmrv sequences which shows little genetic diversity which is consistent with contamination(and it looks like they cherry picked their best results to get the most diversity).
Also i am worried about the conflict of interest in selling a test to ME patients at hundreds of dollars for a connection that only they seem to be able to make. Then i heard Mikovits was trying to link xmrv with numerous other conditions including autism. Where is the science behind that? It strikes me they are trying to get sick people to part with money on a hunch that there is some involvement.
The WPI filled me with hope for over a year and have raised awareness about the seriousness of ME but i feel unable to vote for them. I can't speak for others but it is possible some others have similar concerns and will not vote for them either. I'm sorry if i'm wrong about all this.
I'm voting for the CAA, even though i am not 100% behind the leadership i feel like the money could be used wisely.
Best regards
Neal
Hi Neal,
ReplyDeleteI appreciate your honesty, thank you.
Deciding who best can help us is tricky, isn't it? It is a very difficult terrain to negotiate.
Personally, I still have some faith and hope in the WPI and I'd rather see them make a mess of using 500K donated by a financial institution than the millions that governments are spending on 'research' that only concludes we are mostly malingerers in need of some mind-control and positive thinking.
I do agree with you about XMRV testing. Again it's something we have to make a personal judgement call on but I've never been comfortable with people spending money on a test that is still not bulletproof and then, even if they get a 'positive' result, finding they are struggling to treat the virus.
I'm all for the CAA getting some money too. I share your concerns about the leadership (although I have to say Kim McCleary actually impressed me for once, during the CFSAC testimonies) but it would be remiss of us to forget they have done some important work on research in the past.
We are all ill but we all think differently and I think we have to be mindful of that. Only recently have I changed my mind on the importance of proper classifications and the need to separate different sub-sets of 'CFS' patients so we know we are dealing with people who have broadly the same illness. I was also quite uninterested in the 'name change' movement until I began to appreciate how much harm was being done to our cause by accepting the CFS moniker (especially here in the UK - I know it's slightly different in the US).
So, I guess what I'm saying is, I respect the fact that there are reasons people will not vote for WPI, despite my passionate appeal. I think my aim was to stir up some discussion and hopefully it has done that. The blog stats suggest the post is being read widely.
Thanks again for setting out your concerns. It's good to hear different perspectives.
Perhaps the reason not everyone is voting for the WPI is that it is too heavily associated with the XMRV inquiry to the exclusion of all other lines, such as enterovirus which has a very long association with ME? I voted for the WPI (at the fourth or fifth time of asking -- it didn't work the first few times) as I'm unaware of any other contender with an ME interest, but surely the community should not focus all its hopes on one virus which may turn out to be a secondary infection and is linked with prostate cancer among other things. (Is there an increased incidence of prostate cancer in older, male ME sufferers?) Some have suggested that, if XMRV turns out not to be the cause of ME (or at least of all ME) then the WPI will move onto other things, but it would be useful to know what other things they are researching right now.
ReplyDelete