Call to Action from Annette Whittemore

[_Kim_]

From the WPI Facebook page:

President's Message to WPI fans

Today (11/12/2009) at 9:04pm

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. The recent conference at the Cleveland Clinic of 75 Scientists included Dr. Mikovits,Dr. Vincent Lombardi and many others who understand the role of retoviruses in human disease. They 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

--
Annette Whittemore
Founder and President
Whittemore Peterson Institute
for Neuro Immune Disease
6600 N Wingfield Pkwy
Sparks, NV 89436
775-348-2335 Phone
775-348-2350 Fax
annette.whittemore@wpinstitute.org

 

[kolowesi]

letter to Congress

Does anyone know if it makes more of an impression to send a written letter, a fax, an email, or a phone call?

In the past I've sent emails about the blood supply (when I thought HHV-6a was the problem). I got form letters back and was placed on the email list of one senator and my local representative. It didn't feel like it got through!

I'm thinking of a short description of WPI, a short description of XMRV and the plea for funds.

Anyone have ideas? Thanks,

Kelly

PS I think we need to bombard them. I challenge all the Texans

 

[srmny]

I don't know the answer. I have always heard that snail mail carries more weight but, then again, if it is an organized movement phone calls and faxes work best. I am thinking a fax then mailed to the congressmen and senators? Maybe someone else has a more informed answer. I think now would also be a good day to make a donation if you have not yet done so. I know I have not yet donated so I think I will do that first with a thank you to Annette Whittemore.

Susan

 

[DSan]

I vote for the all-out approach as well. I borrowed the format (and some of the wording) from a posted letter on WPI’s Facebook under Annette’s "call for action post". The poster intends to send the letter to congressional reps and anyone else that might be able to help. I think that’s a great idea. I adapted the posted letter to my own CFS history and experience.

Here’s what I have so far:

Dear X,

I am suffering from a debilitating disorder known as Chronic Fatigue Syndrome and am writing to anyone who will listen, and might be in a position to help. I am asking for research funding for the Whittemore Peterson Institute
(WPI ) to continue its studies of the retrovirus (XMRV) recently found in patients with CFS and other neuro-immune diseases, and already linked to cancer. WPI needs funding to establish mechanisms of disease and treatments for patients like me. Beyond that, clinical research centers need to be created to expand this critical work. Over a million very ill Americans need your help.

Those of us who have been suffering from this CFS have been misunderstood or shunned by most in the medical community. The XMRV link to CFS has brought seriously needed attention to this debilitating disease. Please follow this link to see how very communicable and serious this retrovirus is. There are only 3 known human retro viruses, the best known is HIV.

http://wpinstitute.org/xmrv/xmrv_qa.html

I have been very ill for 19, going on 20 years. I am unable to work and can sustain only limited activity due to worsening of my symptoms from any type of mental and physical stressors, and extreme sensitivities to many commonly used chemicals in scented consumer products. These are hard, unrelenting boundaries set by CFS. Simply put, my body’s abilities have shut down to where I cannot focus well enough to do anything that requires sustained concentration, and I do not have enough energy to push through activity requiring physical exertion or stamina. Chemicals that I am sensitive to will affect me within seconds of exposure. I have brief windows of time where I can do things (like write this letter), but, as a rule, the simple things I do are too much for me and I will pay for doing them with a worsening of symptoms for many hours or days after. This push, then crash-with-worsening-symptoms pattern is my life.

A long time ago, I was a computer analyst with a bright future. I had plenty of energy (mental and physical) and was fully engaged in a life filled with opportunity. Since getting sick in 1991, I’ve had to put my life on indefinite hold. I will likely never return to computer programming, but I would like to be a writer. I discovered that I had some writing ability in year ten of my chronic illness. But, time is running out for me. It has taken me ten more years to write half a novel. I can only manage taking care of myself and doing what is absolutely necessary to help maintain a household.

As sick as I am, I am far from the worst that the devastation from this illness can bring. The first few years of CFS left me bedridden; as many with this illness are, today, even after 20+ years of being sick.

In a very short time, the WPI has provided what decades of effort at the CDC has not. A window of opportunity has opened for CFS and perhaps many other diseases. The XMRV discovery cannot be ignored. PLEASE check the nation’s blood supply and fund the development of research centers that will lead to viable treatment options for CFS patients. I, and so many others like me, need to have hope!

Thank you very much for your consideration and compassion to all suffering from this serious disease and for those who might be spared from it in the future.

Please contact and help these people in any way you can ;
Whittemore Peterson Institutefor Neuro Immune Disease
6600 N Wingfield Pkwy
Sparks, NV 89436
775-348-2335 Phone
775-348-2350 Faxannette.whittemore@wpinstitute.org

I think it’s important to keep all letter’s to one page.

Comments on how this can be improved are welcome as I am quite fogged, today.

DSan

 

[Katie]

I'd suggest that people make letters more personalised to their representative. For example, if they've done some good work or spoken out on an issue you care about then congratulate them, let them know that you appreciate their work so far and connect with the person. Doubley good if you find that they are an advocate for a disease, they might be more inclined to be interested in the medical science world. Showing an interest in them and their work goes along way towards creating a productive dialogue.

Always finished with 'I look forward to your reply' or 'I hope to hear from you soon'. This isn't biligerant, it just lets them know that you would like a return letter.

Hope that helps.

 

[Cort]

Snail mail takes a long time to get through, phone calls work well in e-mail is by far the least impactful method. I asked Dr. Peterson if money was flowing into the WPI after the XMRV publication he said no! Except for donations - which can only go so far with medical research - money (ie federal funding) was not rushing into the institute. We need to help.

I wish Annette had put this into some sort of context; is there a bill she wants passed? A line item in a budget appropriation? What do our representatives need to do in order to support the WPI? Unless there's something specific to tie the request to I wonder how they will act on it ???

 

[Robin]

Snail mail takes a long time to get through, phone calls work well in e-mail is by far the least impactful method. I asked Dr. Peterson if money was flowing into the WPI after the XMRV publication he said no! Except for donations - which can only go so far with medical research - money (ie federal funding) was not rushing into the institute. We need to help.

I wish Annette had put this into some sort of context; is there a bill she wants passed? A line item in a budget appropriation? What do our representatives need to do in order to support the WPI? Unless there's something specific to tie the request to I wonder how they will act on it ???

I was wondering that too -- I mean, we can ask Congress to give money to federal health agencies for CFS, but, don't private organizations need to get grants and such?

I guess you can ask for pork. Remember that million dollar "overhead projector" that was such a huge issue in the last election that turned out to be equipment for the planetarium in Chicago? Maybe the Congresspeople and Senators from NV can slip in money for the WPI in various bills. It's done all the time...

 

[DSan]

Quote from WPI President

From the WPI Facebook page:
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.

We need specifics on who they spoke to so that we can reinforce their efforts. Perhaps some clarification on that will be forthcoming from WPI.

DSan

 

[Recovery Soon]

Does anyone know if it makes more of an impression to send a written letter, a fax, an email, or a phone call?

In the past I've sent emails about the blood supply (when I thought HHV-6a was the problem). I got form letters back and was placed on the email list of one senator and my local representative. It didn't feel like it got through!

I'm thinking of a short description of WPI, a short description of XMRV and the plea for funds.

Anyone have ideas? Thanks,

Kelly

PS I think we need to bombard them. I challenge all the Texans

I heard Chris Matthews (Hard Ball) saying just a few days that the most sure fire way of getting any kind of political action accomplished by is by sending letters to Congressmen. That's the best way, and I think EVERYONE should do it- Send copies to your Rep, Senators, Obama and Biden.