"A Call to Action" by Annette Whittemore

[Frickly]

Posted yesterday on Annette's facebook page:

"A Call to Action"

"Dear Friends,

Since we published the XMRV study the WPI has been extremely busy establishing new collaborations and moving the work forward. This is truly a world changing event for the field of neuro immune diseases and patients who suffer from them.

First I want to thank you for all of your kind words of support and very generous donations. They give everyone at the WPI the added strength and motivation to continue full speed ahead. Secondly, let me explain some of the things we have doing to since the article was published. We have been working for you. We have been in Washington, DC explaining the significance of these findings to our representatives of the state of Nevada and our country. We have spoken to representitives of the institute's of health encouraging them to dedicate funding to XMRV research. Patient studies must be done outside of the NIH to bring answers that will end this cycle of disease.

We are overwhelmed but very excited about the possiblities this finding will bring for our loved ones. We were able to develop key relationships and collaborations in support of research of XMRV. We are confident that good science will ultimately lead to the answers. But we need you. We need every person suffering from this debilitating disorder to help by writing your congressmen and senators and asking for research funding for the WPI to continue its studies of XMRV in CFS and other neuro immune diseases. We must have funding to establish mechanisms of disease and treatments for patients. Clinical research centers must be created to establish effective treatment protocols as quickly as possible.

There's so much more to come. Thank you for all your love and support,
Annette"

 

[Adam]

Thanks Frickly. Reading that really gives me a gee-up. So much nonsense on here, at times, I imagine that I just woke from a bad dream.

 

[starryeyes]

I understand Adam, but think of this not as a bad dream but as an Action/Adventure Dream. :Retro smile:

Frickly, thanks so much for posting this. I'm not on FB so I really appreciate it.

I have written my awesome Congressman, Pete Stark and my Senators, Barbara Boxer and Diane Feinstein and I will again. I guess we're supposed to write them every so often.

It would be great if people here could post some of their letters to their reps so we can "steal" from each other. People here at PR write some of the best letters I've ever seen.

 

[Adam]

I understand Adam, but think of this not as a bad dream but as an Action/Adventure Dream. :Retro smile:

Frickly, thanks so much for posting this. I'm not on FB so I really appreciate it.

I have written my awesome Congressman, Pete Stark and my Senators, Barbara Boxer and Diane Feinstein and I will again. I guess we're supposed to write them every so often.

It would be great if people here could post some of their letters to their reps so we can "steal" from each other. People here at PR write some of the best letters I've ever seen.

OK. I can't resist it.

 

[Lynn]

My letter is below. I cobbled together words from the CAA and WPI and came up with this. It's not elegant but maybe it will help someone else. I used the CAA site http://www.capwiz.com/cfids/home/ to send the email to my Congressmen (use action #3).

Lynn


Letter to Congressman:

As one of your constituents, I am writing today to ask that you request research funding to continue studies by the Whittemore Peterson Institute (WPI) regarding XMRV’s role in chronic fatigue syndrome (CFS). Each year, CFS costs our economy $17-25 billion in medical expenses and lost productivity (Source: DePaul University).

I became disabled with CFS in 2000. It is an illness that has robbed me of my career and social relationships. I keep thinking that someone will find the cause but it’s been ten years and hope is getting harder to come by.

Last year, the Whittemore Peterson Institute (WPI) reported that they, the NCI, and the Cleveland Clinic had found XMRV, a new retrovirus, in 67% of patients with CFS. That finding for those with CFS is the first hopeful link to a future without illness.

The National Institutes of Health is involved in this research and is mobilizing its resources to better understand the role of XMRV in human disease, including CFS. But we need congress to dedicate resources to conduct studies outside of the NIH to bring answers that will end this cycle of disease. Good science will ultimately lead to the answers.

With the scientific momentum ignited by the XMRV research, now is the time to expand the government's efforts to understand CFS and for the millions who suffer worldwide. WPI requires funds to further investigate XMRV in patients with chronic fatigue syndrome (CFS). Please request the funding to help them find the answers to end this cycle of disease.

I will monitor your actions and hope I can count on your commitment to return people with CFS to healthier, more productive lives.

 

[Frickly]

Hey guys, I think the government is going to leave WPI high and dry. Without government funds it will be years before we get an answer, if ever. I am writing my letter now to the head of NIH and will send it to my congressmen senators. I do hope everyone will do the same. I am afraid they are taking WPI's discovery and using funds to do further research in xmrv and cancer and will shove us under the rug. I am pissed. Please, everyone start writing.

Thanks tloyd, that is a very good letter. Can I borrow parts?

 

[KnightofZERO]

Yes, writing letters is important. I have done so and will again. Still, letters alone make us one of a million gnats on the governments a$$. We need to add media attention in order to turn ourselves into a pitbull who can't be ignored. Just wish i knew how to do that in a way that won't backdire... S

I agree we will need to get the media involved for long term success. One of the difficulties is getting their attention and then educating them correctly with so much mis-information out there: such as probably many people don't know of the Royal Free Outbreak that led to the "coining" of Myalgic Encephalomyelitis and that the original CFS definition (Holmes 1988, not the much broader Fukuda 1994) was based on a typical M.E. epidemic though the CDC did a bad job on it.

Great message from Annette-- if only the rest of us had her energy! But we can all do our part, small or large, to make sure that in twenty years from now (just using twenty years since the Defreitas Study was twenty years ago) there are no longer any people suffering and dying from this illness!

:Retro smile:

 

[Lynn]

Thanks tloyd, that is a very good letter. Can I borrow parts?

Thanks Frickly. Please feel to borrow as you like. As I said earlier most of it is from the Annette's "Call to Action" and the CAA letter to congress found on the site http://www.capwiz.com/cfids/home/

I don't have much energy to be creative these days. I think the key to this letter writing campaign is to make it easy for us. The CAA website does that. I've never written a letter to my Congressmen in my life. Now I have done it twice in one week since it is so easy to use that website! All you have to do is put in your zip code and your information. They even have a letter that you can use. You can also write your own letter (or copy and paste mine). Then you just push send it sends out multiple emails at once to the President and the representatives from your area.

I don't know how long they have had this up, but kudos to CAA for doing it. If we could just get the entire membership of Phoenix Rising to write one letter, it will make a difference. And I may be wrong (because believe me, I am not very politcally saavy), but I don't think it matters that we all send the same letter. So don't worry about the words.

Please let's do everything we can to keep this rearch going.

Lynn

 

[citybug]

Another thread has been started about how to get clinical trials of meds for XMRV going. Coffin and other scientists have said that is how you prove causality but showing the meds work. And see Rrrr's interview with Coffin thread.
On WPI's facebook page several people were wishing for a lie-in demonstration. I think we could have one. Even if it were a few people it would get attention. If CFSAC is going to be at XMRV conference could be at same time.
Everything ties to getting more funding for XMRV research in CFS, TREATMENT, not counting more people, testing the healthy population....then a few years later looking at CFS.

 

[citybug]

Here is what I inserted into the CAA forms when I wrote. ( I was getting mad.) All the reps have heard for 20 years that CFS needs more funding. I think we have to spell out what needs to be done for XMRV right now. Even the CFSAC meeting had not one word about drug trials.

In my opinion NIH actions on XMRV are totally inadequate for the
compassionate treatment of CFS/ME sufferers. Working on tests for the
blood bank is a good thing, but it is NOT treatment for CFS. It will
soon be a year since XMRV in CFS was announced in Science. There has been
no new funding since October. We need big patient studies underway. How
can the current small staff at WPI do all the work on XMRV in CFS? They
are also finding XMRV in up to 30% of FM, GWS, Lyme, Autism disorders, and
atypical MS as well as NCI's Prostate Cancer results. There has to be
more grant money now. Some patients are already starting AZT on their
own. Many more will be. We need specialized nursing homes built for 25%
of CFS sufferers, or you can fund research on this breakthrough. Now is
the time to act. Approximately 25% of patients are bedbound or housebound.
More was done in the '50's for polio. Look at the CFS budget on the NIH
website. It is hard to find anything with less money.

We need a champion high up who is very familiar with all these issues and
the health ramifications of retroviruses. The patients already know what
they are. This has been a national health emergency for 25 years.

I have been sick for 20 years. The first ten years I waited for research
while the CDC lied to Congress. I'm on the verge of not being able to
take care of myself. I was researching nursing homes (none are safe for
CFS) when this virus was found. On the internet I can see there are many
young people who have it. Please do something. Don't wait some more. It
is criminal negligence.

We also need Centers of Excellence for treatment and research for ME/CFS.
I saw Sec. Sebellius on CSPAN talking about money in the budget for new
clinics for those without health care. We certainly qualify. Whittemore
Peterson Institute (opening to patients in the fall) and the proposed New
Jersey Center for Neuro-Immune Disorders should be the first.

 

[jspotila]

Thanks Frickly. Please feel to borrow as you like. As I said earlier most of it is from the Annette's "Call to Action" and the CAA letter to congress found on the site http://www.capwiz.com/cfids/home/

I don't have much energy to be creative these days. I think the key to this letter writing campaign is to make it easy for us. The CAA website does that. I've never written a letter to my Congressmen in my life. Now I have done it twice in one week since it is so easy to use that website! All you have to do is put in your zip code and your information. They even have a letter that you can use. You can also write your own letter (or copy and paste mine). Then you just push send it sends out multiple emails at once to the President and the representatives from your area.

I don't know how long they have had this up, but kudos to CAA for doing it. If we could just get the entire membership of Phoenix Rising to write one letter, it will make a difference. And I may be wrong (because believe me, I am not very politcally saavy), but I don't think it matters that we all send the same letter. So don't worry about the words.

Please let's do everything we can to keep this rearch going.

Lynn

The Association put up the current action alerts on Monday and Tuesday as part of this year's Virtual Lobby Day. The Capwiz system has been in use for a number of years to give everyone an opportunity to participate, even if they could not travel to the in-person Lobby Days in the past.

The letters will be available for several weeks so PLEASE take a moment when you feel up to it and send an email to your Congressional and agency representatives, everybody!