Plea from Dr Bell to donate to the WPI

[Jessrose21]

I sent in my $10! I know that my mother, grandmother, aunt, father, and several friends will donate, as well. I'll update as soon as I know how much. This is sort of like the internet version of a telethon. Love to watch those numbers go up!

 

[jace]

I send $10 a month to the WPI too.

 

[gracenote]

I sent in $50.00 last week.

 

[Frickly]

Thank YOU!

Thank you Jessrose, Jace and Gracenote! :victory:

$3,072.00 Total In One Time Donations!
$280.00 Total In Recurring Monthly Donations!

These are only the numbers I could add up as some did not state how much they will be donating.
:victory::victory:​

 

[michal]

Hi
I just red all peoples reactions in this thread and it gave me a lot of motivation for the donation. I just gave throught WPI (I dont have facebook yet) web side 600 USD. At first, I didnt want to write it here but when I red throught this thread I got impression that maybe this information can give us a bit more optimisme in our fight. I was lucky I couldnt work for 2 years but now I recovered and I was able to start to work at home some hours a day. I will try to donate regulary, when I will earn some money - just I dont know now, if it will be each month.
Thank you to all people who donate to our case - especially thank to the people who cannot work, who have no money and live almost like a homeless and with this conditions they are still able to donate some money - you are the heroes.
Now, when the situation with funding for CFS research from public funds is still bad, it has to come from our side (from patients) to create the funding even when we dont have much money. we have to save our own lifes. hopefully the situation will change with the time and we will get more public funds for CFS research.
does someone have an information if it helps to WPI the donations from patients and if they are able to create more research programs or is their situation still so bad?

 

[Frickly]

Hi Michal

Thank you so much for your donation. I agree that we must do everything we can to help ourselves right now. I do hope it will change soon. With regard to your question, I think WPI must receive government funds. Otherwise, it will be a very long time before we find an answer. Patients cannot support this kind of research on our own. That being said, I beleive every penny we raise makes a difference and will keep things moving forward, however, slowly.

Take care,

 

[Frickly]

Thanks Michal!

$3,672.00 Total In One Time Donations!
$280.00 Total In Recurring Monthly Donations!

These are only the numbers I could add up as some did not state how much they will be donating.
:victory::victory:​

 

[Dolphin]

Hi
I just red all peoples reactions in this thread and it gave me a lot of motivation for the donation. I just gave throught WPI (I dont have facebook yet) web side 600 USD. At first, I didnt want to write it here but when I red throught this thread I got impression that maybe this information can give us a bit more optimisme in our fight. I was lucky I couldnt work for 2 years but now I recovered and I was able to start to work at home some hours a day. I will try to donate regulary, when I will earn some money - just I dont know now, if it will be each month.
Thank you to all people who donate to our case - especially thank to the people who cannot work, who have no money and live almost like a homeless and with this conditions they are still able to donate some money - you are the heroes.
Now, when the situation with funding for CFS research from public funds is still bad, it has to come from our side (from patients) to create the funding even when we dont have much money. we have to save our own lifes. hopefully the situation will change with the time and we will get more public funds for CFS research.
does someone have an information if it helps to WPI the donations from patients and if they are able to create more research programs or is their situation still so bad?

Thanks Michal - when one person gives, it helps us all.:Retro smile:

Probably most of the patients who donate monthly to the research fund in my country don't work (although sometimes their spouse works) - so often the money is coming from disability money, either insurance or State. Some people are in worse positions than others - for example, I live with my parents so it's not so bad. Saying that, it's frustrating the amount of people who either don't give at all or have only given very occasionally/once or twice.

We don't want progress, we want it asap so it'd be good if more people tried to support the cause by raising money in some way e.g. either donating or encouraging family/friends to donate or patients fundraising and/or encouraging family and friends to fundraise.

 

[usedtobeperkytina]

Has anyone questioned Bell as to the NIH lady's accusations that his letter is incorrect?

Tina

 

[Lesley]

Has anyone questioned Bell as to the NIH lady's accusations that his letter is incorrect?

Tina

Dr. Bell's latest Lyndonville News it out, and he comments on it:

I have heard third hand that someone at the CFSAC meeting did not like the letter I wrote asking persons to contribute $10 each to the WPI. I agree, it is not the way science works. It is absurd to think that a few $10 bills will change anything. It is also a little embarrassing. Oh well.

The whole newsletter is worth reading. It's here: http://www.davidsbell.com/LynNewsV7N1.htm

 

[gracenote]

I like Dr. Bell's next paragraph:

There have been over 5,000 scientific papers written on ME/CFS. Huge amounts of money have been spent on psychological studies, behavioral therapy studies. Even trying to define the illness has been impossible, but the money goes there as well. It may be time to put some research effort into good virology. But here is the letter I wrote. And I have sent in my $10 check.

 

[Dolphin]

Dr. Bell's latest Lyndonville News it out, and he comments on it:



The whole newsletter is worth reading. It's here: http://www.davidsbell.com/LynNewsV7N1.htm

Mine cuts out after:

To my friends with ME/CFS,

I would like to put out a personal appeal for funds to be sent to the Whittemore-Peterson Institute (WPI) in order to speed up the progress of the current research. Here is my reading of a very complex situation.

Medical authorities, educational institutions, governmental agencies, and most practicing physicians have disrespected and minimized CFS in just about every way possible, from creating an insulting name for the illness to advising extreme caution in treatment, except cognitive behavioral treatments.

If I convert it to plain text I see it.

I told them but it might be useful for other people to tell them also.

Bye,

Tom

 

[lululowry]

I donated $50. $10 for me - and $10 for my husband and each of my kids.

 

[rebecca1995]

Frickly, put me down for a $10 per month recurring donation--in honor of Dr. Bell!

:victory::victory::victory::Retro smile::victory::victory::victory::Retro smile::victory::victory::victory:​

 

[Frickly]

Thank You lululowry and Rebecca!

$3,722.00 Total In One Time Donations!
$290.00 Total In Recurring Monthly Donations!

These are only the numbers I could add up as some did not state how much they will be donating.
:victory::victory:​

 

[usedtobeperkytina]

Yes, I saw that. Ms. NIH did not complain at the request for funding. She complained that Bell stated: "as I understand it, no federal grants or funding has been forthcoming," which she said is inaccurate.

Tina

 

[citybug]

I think ms NIH was talking about the one grant which was given in Sept before the Science article. Which is $320,000 a year for 5 years and covers specific things (immune system?). You can see it on the NIH list of grants. I found it very upsetting-- more wait and see, expecting xmrv to go away. Bell was saying we haven't heard of anything more coming out from CDC or NIH.
I want to write to her and other members about all wpi is doing. Can anyone help me with list? I want the NIH to start focusing on treatment for CFS and WPI is the only place in the world doing the work. Unless Arup group is working on treatment? I'm sure they need funding too.
I've heard so far WPI is
Developing antibody and western blot testing for xmrv
identifying and gene sequencing 6 strains
testing lyme, fibromyalgia, gws, atypical ms, autism patients
working with blood bank committee
providing samples and primers? to CDC, blood bank studies, pharmaceutical, and other studies
studying post transfusion cfs patients
developing testing for levels of virus present
developing drug studies for treatment of xmrv
looking at families with multiple xmrv-related illnesses
testing more cfs patients with multiple xmrv tests
with 7 people in the picture of their lab.

 

[citybug]

besides looking at the virus in China
fielding patient, practitioner and virologist questions

shouldn't the CDC or NIH being doing some of this?

 

[usedtobeperkytina]

good point, Kdp, maybe Bell was talking about investing in XmRV research at WPI after the Science article, whereas she was referring to funding to WpI in general.

But I don't think this is correct: "WPI is the only place in the world doing the work."

Many others are researching CFS and treatments for XMRV.

Tina

 

[citybug]

But I don't think this is correct: "WPI is the only place in the world doing the work."

Many others are researching CFS and treatments for XMRV.

Tina

I know there are a lot of researchers looking at XMRV in cancer cells that might apply, but who else looks at XMRV in CFS patients? (besides the failed studies). The study of drugs would be directly related. Which studies do you mean?