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

[MsUnderstood]

Both the $190M and the $250M estimates were based on a prevalence of about 1M. . . .

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

@Medfeb Thanks. It appears I misunderstood the following sentence:

"Our plan calls for significantly ramping up research funding to equal the disease burden, which studies approximate at $190 to $250 million."

My interpretation was that the disease burden is $190 to $250 million -- not the request for ramped up funding. Am I the only one who might interpret the message incorrectly, and if not, should the letter be reworded? For example:

"Our plan calls for significantly ramping up research funding to between $190 and $250 million to better equal the disease burden."

 

[JenB]

Quick thing – we won't be posting the postal codes either! They are helpful for us (mainly in the US) in case we decide to collate signatures by congressional district or something. I will amend to clarify we aren't publishing postal codes. But First Name, Last Name, City, State/Region, Country, Affiliation and comment will all be submitted and public.

 

[JenB]

@Medfeb Thanks. It appears I misunderstood the following sentence:

"Our plan calls for significantly ramping up research funding to equal the disease burden, which studies approximate at $190 to $250 million."

My interpretation was that the disease burden is $190 to $250 million -- not the request for ramped up funding. Am I the only one who might interpret the message incorrectly, and if not, should the letter be reworded? For example:

"Our plan calls for significantly ramping up research funding to between $190 and $250 million to better equal the disease burden."

good point! changed to "commensurate to"

 

[JaimeS]

@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.

Good MORNING everyone!

It's done, now reads:

"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 and postal code, which will not be shared.)"

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.

Based off of Jason's prevalence (which I tend to go by), it's 1.3 million in the US today. Still, I think that the $250 million is a reasonable figure based off of Dimmock's paper. Thanks to those who added additional info above!

It's specific demands of specific people with a time frame and attempts to bring a unified mass movement behind it.

Thank you very much. Lots of people worked very hard to ensure the demands were specific and time-delimited.

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

Thank you, @Medfeb, exactly.

 

[Sasha]

Good MORNING everyone!

Morning!

It's done, now reads:

"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 and postal code, which will not be shared.)"

Thanks - but that still needs patients to notice that not all fields are marked as 'required' and implies that you need to give your postal code (and by implication, also your street address). I think it would be better to point out which fields are required and to make clear what will and won't be public.

Sorry to be picky - I just want to help make sure you get the maximum possible number of signatures, and without people posting their street addresses without having read the small print about them being public.

But this is an excellent action - congratulations to everyone who put it together. I wish it was clear what we in the UK should be asking for. It seems a lot less clear what levers we can pull, and how.

 

[Invisible Woman]

Another (or possibly additional) option would be to put the text (Required) in red coloured font. This will draw attention to the required fields and make it easier to see them and disregard the others.

 

[Aroa]

I already signed and shared on Facebook.

I noticed the title says ME and most people do not know what that is. May be it´s possible to write Myalgic Encephalomyelitis ?

 

[alktipping]

signed shared.

 

[JaimeS]

Thanks - but that still needs patients to notice that not all fields are marked as 'required' and implies that you need to give your postal code (and by implication, also your street address). I think it would be better to point out which fields are required and to make clear what will and won't be public.

I changed the color of what's required -- hopefully it's clear now without putting (required / not required) next to everything. For reasons of cognitive dysfunction color is more recognizable than ensuring everyone is catching the word 'not'.

Another (or possibly additional) option would be to put the text (Required) in red coloured font. This will draw attention to the required fields and make it easier to see them and disregard the others.

Whoa, great minds think alike, I guess.

 

[JaimeS]

I already signed and shared on Facebook.

I noticed the title says ME and most people do not know what that is. May be it´s possible to write Myalgic Encephalomyelitis ?

What title where?

 

[Aroa]

What title where?

The Facebook one

We are very familiar with the ME term but when you share it , unless people read the whole article they don't know what you are talking about

 

[Trish]

Signed. Thanks to those who set up the petition. Let's hope it has some effect.

 

[anniekim]

• To begin NIH-funded clinical trials of one or more drugs as treatments for ME within 1 ½ years

Have signed. Curious what drugs ME Action have in mind?

 

[Barry]

Signed.

 

[Forbin]

Based off of Jason's prevalence (which I tend to go by), it's 1.3 million in the US today.

Your right if you apply Jason's prevalence rate to the entire US population, but Jason only measured the prevalence in adults over 18. It could be the same for those under 18, but I don't know if anyone has made that estimate. Applying Jason's value to just the current US adult population you'd currently get 1.06 million cases.

The worldwide estimate of 17 million cases seems to come from applying Jason's value to the adult world population (over 18) between 2002-2004. The adult world population has grown since then, so currently it would be close to 21.6 million cases, and that, again, is just the adult cases. If you apply the same prevalence rate to the entire world population, you get close to 31 million cases.



[ Oh, and signed. ]

 

[JaimeS]

Your right if you apply Jason's prevalence rate to the entire US population, but Jason only measured the prevalence in adults over 18.

Good point!

 

[MSEsperanza]

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

Same here. + even skimmed the letter.

[ @Trish : both links you provided in "news in brief" link to the MEA-site, also the one supposed to link to the thread here -- noticed that when i used the forum search to find the forum folks' thoughts on the campaign.]

 

[Trish]

Same here. + even skimmed the letter.

[ @Trish : both links you provided in "news in brief" link to the MEA-site, also the one supposed to link to the thread here -- noticed that when i used the forum search to find the forum folks' thoughts on the campaign.]

Thanks for alerting me. I've corrected the link. Do feel free to message me any time when I make mistakes in the News in Brief.

 

[Forbin]

FWIW, I looked at the first names of about 650 sequential US signatures to the letter. The genders of the first names were:

FEMALE...79.19%
MALE......18.40%
UNISEX...02.41%

If you use just the male/female figures (likewise if you add the unisex names proportionally to those categories), you get:

FEMALE...81.14%
MALE......18.86%

It may not be all that scientific, but it's remarkably close to the 4:1 (80% female) ratio that is often cited.

[Of course, a possible problem with this is that not all the signers may be patients.]

 

[Alvin]

FWIW, I looked at the first names of about 650 sequential US signatures to the letter. The genders of the first names were:

FEMALE...79.19%
MALE......18.40%
UNISEX...02.41%

If you use just the male/female figures (likewise if you add the unisex names proportionally to those categories), you get:

FEMALE...81.14%
MALE......18.86%

It may not be all that scientific, but it's remarkably close to the 4:1 (80% female) ratio that is often cited.

[Of course, a possible problem with this is that not all the signers may be patients.]

Very interesting.
I am also amazed that you have the cognitive fortitude to get through that many names and segregate by gender, i wouldn't even attempt it