Worldwide Action: Sign #MEAction’s Letter to Francis Collins by May 16th

[Andy]

Our plan calls for significantly ramping up research funding to equal the disease burden, which studies approximate at $190 to $250 million. Our letter details specific mechanisms that the NIH must take within the next 12 months to reach our key goals:

• To validate one or more clinically viable ME biomarkers to increase diagnostic accuracy within 3 years;
• To begin NIH-funded clinical trials of one or more drugs as treatments for ME within 1 ½ years
• To secure FDA approval of at least one treatment for specific usage in ME within 3 to 5 years.

https://www.meaction.net/2018/05/11/letter-to-francis-collins/

 

[Sasha]

@Andy, would you like to add something to your title to show that this is a worldwide call for signatures, not just for US people?

And that there's a May 16 deadline?

 

[arewenearlythereyet]

Signed

 

[Binkie4]

Signed

 

[Andy]

@Andy, would you like to add something to your title to show that this is a worldwide call for signatures, not just for US people?

And that there's a May 16 deadline?

Done

 

[Sasha]

Privacy alert!

To sign your name, please fill out the form below. Anyone can sign – patient, caregiver, ally, researcher, clinician – in any country. (Note: any data entered may be public except for email addresses, which will not be shared.)

So if I put my name to this, my actual physical postal address will be made public,

Edit: Apparently you don't need to give all this info - only your name and country. Panic over! Sorry!

Let's pile on and sign!

 

[andypants]

Signed

 

[MeSci]

https://www.meaction.net/2018/05/11/letter-to-francis-collins/

What's an RFA?

 

[Andy]

Privacy alert!



So if I put my name to this, my actual physical postal address will be made public, as well as the fact that I'm a patient?

If so, I won't sign, I'm sorry to say, though others may be happy to have all these things known.

@JenB, @JaimeS, is this really the case?

This looks like a terrific action - I'm sorry not to be able to be more immediately supportive!

Only First Name, Last Name, and Country are required and may be public, Email Address is required but won't be made public, as per the information on the page. Anything else isn't required, so not sure why they put it in.

 

[Andy]

What's an RFA?

Request For Applications. So calling on researchers to send in applications for money to support research.

 

[Invisible Woman]

Privacy alert!



So if I put my name to this, my actual physical postal address will be made public, as well as the fact that I'm a patient?

If so, I won't sign, I'm sorry to say, though others may be happy to have all these things known.

@JenB, @JaimeS, is this really the case?

This looks like a terrific action - I'm sorry not to be able to be more immediately supportive!

You only need to fill in the fields with the word "Required" by them @Sasha . So you just need to give your first and last name, plus email address and the country you're from. All of the information may be public except for you email address.

So, if you give the minimum amount of info required then your firstname, lastname & the country you reside in may be viewable. Don't know if that helps.

Edited - crossed with Andy's post.

 

[MsUnderstood]

Would someone, perhaps @JaimeS , please explain to me how the disease burden of $190 to $250 million reported above relates to the estimated prevalence range of 800,000 to 2.5 million patients in the US. At the higher prevalence number, that’s only $100 per patient. Shouldn’t it be higher?

I did a quick search, and from a 2008 NIH report the direct and indirect economic costs of ME/CFS to society were estimated to be $17 to $24 billion (Jason, et al). Sorry, I can’t link the study on the device I use while still in bed.

 

[Sasha]

Only First Name, Last Name, and Country are required and may be public, Email Address is required but won't be made public, as per the information on the page. Anything else isn't required, so not sure why they put it in.

Oh! Thanks, Andy. I've amended my earlier posts.

@JenB, @JaimeS - what about making this more clear on the petition in case it scares other people off? If you can't get rid of the fields that aren't required, what about editing the instructions so that they read:

Anyone can sign – patient, caregiver, ally, researcher, clinician – in any country. To sign, please give your name, country and email address on the form below. Other information is not required and any data entered may be made public except for email addresses, which will not be shared.​

 

[MarcNotMark]

Signed

 

[MeSci]

OK, done it through the haze!

 

[Cinders66]

This is what I love about the USA advocacy, it's not just vague awareness raising and saying more needs to be done to end the injustice etc as AFME Have said for years. It's specific demands of specific people with a time frame and attempts to bring a unified mass movement behind it. It's real action which the establishment finds hard to brush off. It's a patient group wized up & saying we know this needs to be done and can be done, why aren't you and there's no wriggle room. In a years time questions will be asked, not just years passing with excuses and facades and tiny gestures to fill the gaps. We deserve nothing less than this ... bravo.

 

[arewenearlythereyet]

Oh but it’s so much better to be inside the pointless tent

 

[Medfeb]

What's an RFA?

Request For Applications. So calling on researchers to send in applications for money to support research.

RFAs come with committed money before researchers ever submit. - the center grants had $35M for 5 years committed when the funding opportunity was released. Most funding opportunities do not come with already set aside funding. RFAs are important to pull new researchers into the field

 

[Medfeb]

Would someone, perhaps @JaimeS , please explain to me how the disease burden of $190 to $250 million reported above relates to the estimated prevalence range of 800,000 to 2.5 million patients in the US. At the higher prevalence number, that’s only $100 per patient. Shouldn’t it be higher?

I did a quick search, and from a 2008 NIH report the direct and indirect economic costs of ME/CFS to society were estimated to be $17 to $24 billion (Jason, et al). Sorry, I can’t link the study on the device I use while still in bed.

Both the $190M and the $250M estimates were based on a prevalence of about 1M. The $190 figure also incorporates estimates of disease burden (premature mortality and morbidity) to derive an estimate of the DALY (Disease adjusted life years) used by the NIH in an analysis of disease burden versus NIH spend.
The IOM's 2.5M estimate used a reference for "CFS-like" illness so its scientific validity is less accepted and easier to question/harder to justify.

Even if we got just $190M, that would be huge in terms of the outcomes that we could drive.

 

[James Morris-Lent]

Sign something? Oh, all right. Now nobody can say I didn't do anything productive today!