It's Time to "Act Up for ME Funding" - Demonstration in Washington DC

[Nielk]

It’s Time to “Act Up for ME Funding”

What: A marching demonstration to let Congress know, “We Want Real Funding for ME Now!”
Where: Washington DC
When: Week of April 27th during HHS/NIH Budget hearings for 2016.
How: Make a donation and/or provide us a photo and bio to represent you!

Donations matched! Deadline: Friday April 24th, 11:59 p.m. EDT

http://www.meadvocacy.org/it_s_time_to_act_up_for_me_funding

 

[Ember]

Thanks for this great generosity:

“To help keep our costs for this demonstration down, the travel expenses for this demonstration have been donated by one of our MEAdvocacy.org members, who will be leading this demonstration.”

 

[Denise]

I absolutely agree that significant funding increases are necessary for biomedical research on ME.

I am troubled by this MEAdvocacy post stating that the org has "the heart and soul of ME patients". This sounds as though all patients with ME are in agreement with MEAdvocacy.

The post also says "The demonstrators "danced in the rain" on the lawn of the Capitol."
That they did so is very troubling to me. I don't know many patients with ME who can do more than occasionally waggle their fingers to imitate a dance. It is all many patients can do to stand up, let alone dance. Having "patient stand-ins" dance does NOTHING to convey the disability or severity of ME.






As a side question - is the money that is being raised still being used for the pr firm?
How did MEAdvocacy find out that people were inspired to learn more about ME and the need for funding?

 

[caledonia]

As a side question - is the money that is being raised still being used for the pr firm?

This demonstration is being organized without the PR firm.

 

[Denise]

This demonstration is being organized without the PR firm.

Thanks for the response.
Have ties to the PR firm been severed?
If so, why?
If not, what work is the PR firm doing?

 

[Nielk]

I am troubled by this MEAdvocacy post stating that the org has "the heart and soul of ME patients". This sounds as though all patients with ME are in agreement with MEAdvocacy.

MEadvocacy cares about all ME patients even those who might not agree with some of our policies.

The post also says "The demonstrators "danced in the rain" on the lawn of the Capitol."
That they did so is very troubling to me. I don't know many patients with ME who can do more than occasionally waggle their fingers to imitate a dance. It is all many patients can do to stand up, let alone dance. Having "patient stand-ins" dance does NOTHING to convey the disability or severity of ME.

It is clear to all that the protesters are stand ins for the patients who are too ill to be there in person. They each wear a large picture of the patients who is being represented. If they are marching or "dancing" it is to attract attention to the cause and it does not misrepresent the disease.

How did MEAdvocacy find out that people were inspired to learn more about ME and the need for funding?

Because people stopped and asked questions of them and they were able to convey awareness for the disease.

 

[caledonia]

Thanks for the response.
Have ties to the PR firm been severed?
If so, why?
If not, what work is the PR firm doing?

They are wrapping up the patient interviews with the media project which uses up the rest of the money earmarked for the PR firm. There are no further projects with the PR firm after that, as people stopped donating for the PR firm.

 

[Denise]

They are wrapping up the patient interviews with the media project which uses up the rest of the money earmarked for the PR firm. There are no further projects with the PR firm after that, as people stopped donating for the PR firm.

I appreciate the answer.

 

[Nielk]

 

[Nielk]

http://theargusreport.com/students-to-march-to-white-house-in-support-of-me-patients/

Students to March to White House in Support Of ME Patients - by Penny Swift

ME sufferers and students carrying photographs of bed-bound ME patients will march to the White House tomorrow (April 28) in a bid to raise awareness of the disease and urge the US Department of Health and Human Services (HHS) to take urgent action.

The march dubbed Boots on the Ground in DC has been organized by MEAdvocacy.org, a small voluntary grassroots organization with a mission to raise awareness for people suffering from myalgic encephalomyelitis (ME).

“We have raised funds and organized this demonstration in DC to raise awareness about the illness and to urge the HHS to properly address this severe group of patients,” MEAdvocacy volunteer, Colleen Steckel told The Argus Report this morning. She said they were also asking the NIH to increase its funding of the disease to US$250 million per annum to bring it up to par with other similarly burdened diseases.

more here.

 

[Nielk]

 

[Nielk]

 

[Nielk]

See compilation of pictures and videos of the April 28th DC demonstration.
http://www.meadvocacy.org/me_patients_visible_at_the_capitol_pictures_and_videos

“I don't need a cloak to become invisible.”― J.K. Rowling, Harry Potter and the Sorcerer's Stone

ME patients don’t need a cloak to become invisible either. The devastation of this disease is not only the physical misery, it is the loneliness, the inability to be part of society. To compound this agony, the disease is so well “hidden” that many people are disbelieving of it. Family and friends want us to just snap out of it. Doctors want to give us antidepressants. HHS wants to trivialize the name and marginalize the criteria so that they can continue with their lack of funding and flawed research, thinking that no one will care.

Many advocates and patients, including MEadvocacy.org are saying NO MORE!

see more.