Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

Sasha

Fine, thank you
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This is astonishing - I don't even recall this being launched!

https://www.change.org/p/increase-funding-so-we-can-find-a-cure

Mary Gelpi said:
I am only 31, and yet, everyday things like taking a bath exhaust me. This is because I am one of millions of people worldwide who suffer from Myalgic Encephalomyelitis (ME/CFS), a complex, multisystemic illness that causes pain and disabling symptoms, specifically severe weakness and crippling fatigue.

Before I became sick, I was able to travel in college, fall in love, enjoy SEC football and graduate. Now, just a trip to the grocery store can land me in bed for days. I take 25 pills a day just to manage the pain and symptoms of the illness.

I have lost my life as I knew it. Those of us in the ME/CFS community are used to not being taken seriously. There are no FDA approved treatments or cures for the disease on the horizon, which is the result of a lack of funding for research.

In the 2016 federal budget, only $5.4 million was allocated to the Center for Disease Control (CDC) to research the disease.

More than double that amount was spent on male-pattern baldness. We can do better. Please stand with me and the millions suffering with ME/CFS in demanding that the NIH increase the allocated funding for the research of this disease.

In the last year, the NIH has announced that they planned to dramatically increase funding for ME/CFS. Annually in the past, they have given around $5 million in research grants--far from enough. This is a positive step, but we've been promised things before and let down time and again.

I am respectfully asking the NIH to officially fulfill the promises they have made regarding ME/CFS, and to drastically up the funding allocated for research so we can finally find a cure, and at least possible treatment options in the meantime.

For now, so many sick people have no where to turn to manage their illness. Many doctors are ill-informed, and often patients have to become their own doctors. I started this petition because people suffering from ME/CFS just want our lives back, and that will only happen with an effective treatment and eventual cure.

With your signature, we can hold the NIH and congress accountable for taking our illness seriously and honoring our request to increase the CDC’s research budget to $100 million for ME/CFS funding.

#WeCanDoBetter Let's do it now.

Letter to
Director of NIH Francis Collins
Secretary of Health and Human Services Sylvia Burwell

This petition is on behalf of the 3 million extremely sick people in our country who are desperate for research, treatments, and a cure regarding ME/CFS and their associated illnesses.

We are asking that the funding allocated toward the research of this devastating disease be increased to $100 million annually in order to fund studies, find effective treatments and hopefully, ultimately, a cure for this "Invisible Disease."

I know you're the right people who can step in and make this change happen.

Together we can improve millions of lives and cease their suffering by offering a real shot at a cure and at least some honesty and validity in the meantime.

I truly thank you for your time, and I know your job isn't easy.

But this disease has spent decades in the wrong hands and been handled as though it didn't exist.

The time to come together and change all of that is now, and I look forward to what we can achieve in the near future. Thank you again.​
 

taniaaust1

Senior Member
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this petition needs only something like another 130 people to sign it before they have the total they are after before its sent, so really think about signing it if you havent done so. (I had missed this one too).
 

Jennifer J

Senior Member
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Does anyone know what they really do with our street address? They want my street address and full name. I don't mind full name, but street address I'm not comfortable giving this to any website. I tried to read the privacy and other click on, but couldn't read through it all. I'm concerned because as it is my street address keeps coming up on the internet and I have to keep trying to get it taken off. Thank you.
 

medfeb

Senior Member
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This petition was launched just 4 weeks ago. On Sunday morning, it had 10K signatures and by Sunday night, it had 16K or so. Remarkable. Not sure what made it take off except I saw someone on twitter with many followers endorse it.

@Jennifer J - I don't blame you about your address. If it requires an address, maybe just put in a dummy address. If you could include at least your state, that would allow the petitioner to show legislative leaders for the different states that their constituents are interested.

Mary Gelpi, the petitioner, changed the last line to match the letter so it now says NIH, instead of CDC.
With your signature, we can hold the NIH and congress accountable for taking our illness seriously and honoring our request to increase the NIH’s research budget to $100 million for ME/CFS funding.
 

dannybex

Senior Member
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Seattle
This petition was launched just 4 weeks ago. On Sunday morning, it had 10K signatures and by Sunday night, it had 16K or so. Remarkable. Not sure what made it take off except I saw someone on twitter with many followers endorse it.
It's all over Facebook. When one signs it, as many of us have, then one has the option to post it to Facebook, or twitter, etc., to ask others to sign as well and help spread the word.
 

*GG*

senior member
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Concord, NH
Does anyone know what they really do with our street address? They want my street address and full name. I don't mind full name, but street address I'm not comfortable giving this to any website. I tried to read the privacy and other click on, but couldn't read through it all. I'm concerned because as it is my street address keeps coming up on the internet and I have to keep trying to get it taken off. Thank you.
How about just giving them the Post Office address or some other place? Former work address? etc..

GG
 

Sasha

Fine, thank you
Messages
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34,217
Location
UK
this petition needs only something like another 130 people to sign it before they have the total they are after before its sent, so really think about signing it if you havent done so. (I had missed this one too).
A lot of these petitions have an ever-receding goal - it adjusts upwards as soon as it reaches the next 1,000 or whatever.
 

dannybex

Senior Member
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Does anyone know what happens with this petition ? Who does it get presented to and is there any significance placed on the no. of signatories ?
The reason I ask is because it seems that congress are the main players in determining funding, if so they are the ones that should be targeted.
In small print below the main copy it says it'll be delivered to Francis Collins (head of NIH) and Sylvia Burell, the Secretary of Health and Human Services. I agree it should be sent to Congress, but not sure how that is done (to each member?) via these 'change.org'-type online petitions.

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