#MillionsMissing today, 12 May - post news, tweets, etc. here

I'm going to be especially vigilant at 2pm today and 2pm tomorrow (24 hr crash... 48 hr crash!) but apart from my legs aching, I seem to be okay. I'm really surprised -- felt a bit like I'd been flattened by a truck yesterday.

Don't want to jinx anything so I'll stop there.

Thank you, Sasha.

 

Amazing speech Jaime

 

In the past, we've put speeches up before. We could probably use some fresh volunteer help -- especially in the wake of #MillionsMissing -- to do so.

Thank you, Allele.

After my speech I said, "I hope someone will write up a transcript, and I hope that someone isn't me."

Thank you!

Thank you <3

Thank you, Andy!

 

I had the impression that Jen's speech was already written out and that she was just reading it (not Ron's, though!).

 

How about starting a new thread asking for volunteers to transcribe speeches?

 

You could be right, there. It makes sense to find out which ones ARE written down before we try and get people transcribing them! Stay tuned and maybe I'll be able to post what we're looking for here, if #MEAction agrees it's an important task.

 

Or that. But still, let's wait until we find out which ones were written down!

 

This was taken at a German top level football match yesterday.

German - http://www.gruppa-sued.de/wordpress/?p=2036
Translation - https://bit.ly/2wEbZwH

ETA: New translation link, as I messed the first one up.

 

(Norway) Rogalands Avis: Stor markering i Stavanger på ME-dagen Big event in Stavanger on the ME-day

Article is behind paywall but had several great pictures of shoes and speakers, good information about ME and the lack of care.
One of the speakers were a mother of a severe ME-patient. The family has had trouble with child welfare authorities. The main speaker, prof. Ola Saugstad says to the newspaper Rogalands avis:

- That the child welfare authorities repeatedly claims the parents are doing a bad job and threaten to take over the care is cruel. Often conflicts arise because the parents try to protect the children from unfortunate stresses, such as full time school. ME patients often lack adequate help in the municipalities, they become a forgotten group. What we need is to replace old misconceptions with knowledge. Simply information about and understanding of modern research results, says Saugstad to Rogalands Avis.
...
Often the patients are so bad that they get even worse by a hospital stay. I have been in the dilemma many times myself; Should the patient be admitted or not? Almost every time I've recommended it, I regret because the patient so often returns home in worse shape, Saugstad says.

- What can the solution be?

- The ideal will be small treatment centers adapted to the poorest patients. There can be a soothing treatment from qualified personnel. Such a solution will also give relatives relief, which is often needed.

(Photo by journalist Andreas Bechensten)

 

If you go to the youtube channel to view the video,

Code:

https://www.youtube.com/watch?v=yY8XJO2hCs0&sns=tw

a transcript is available below the video. Select the three grey dots below the video and above the Subscribe button, and choose Open Transcript.

Youtube adds subtitles automatically, but it sometimes takes time for them to appear.

I'll add the raw text in the spoiler below if you'd rather read it.

Spoiler: Jen text

hi Los Angeles I crashed very hard on Monday and I'm sitting up really just for this video but that's an improvement and I'm so sorry I couldn't be there today I really wanted to meet you guys but I I I just wanted to had some thoughts I wanted to share and so even though it's a little weird to do this by video I'm gonna read my speech and so here we go thank you to everyone who has come out to be seen even though it will cost you and to everyone who came out to support us we are in a fight for our lives and the only way we're going to win is if we do it together here in Los Angeles and in over 100 cities around the world we've achieved so much in the last few years raised so much awareness and I've told my story so many times but not today today it is time to move beyond awareness now comes the hard step-by-step brick by brick hand-to-hand work of taking action I wanted to talk first about taking action in Los Angeles by almost random luck three of the largest Emmy organizations in the world the open medicine foundation solve mecfs and Emmy action are all based in the LA area millions missing is not just a single day of global action it is a call to work together and organize in our local communities throughout the year so let's keep gathering let's keep coming together and see what we can do to turn Los Angeles into a city of excellence forget center of excellence a city of excellence when it comes to the diagnosis and treatment of this disease over the next several years let's go and talk to every nursing school every Medical School go to every hospital every public clinic and get new clinicians and researchers interested in this disease let's end the crisis of miss diagnosis and under diagnosis let's go and find the african-american people the Latino people the Asian people the indigenous people the Muslim people that are not a part of our online conversation that are not getting any care that are missing from our community let's fight for school accommodations and work accommodations and safe housing and disability benefits that we have already earned but so many of us are denied because of the stigma and the ignorance let's talk to every local politician visit all 18 la congressional home offices let's end the epidemic of homelessness and suicide we will need to do this because parity is not enough so many chronic illnesses that are funded that are no longer stigmatized we still don't understand their causes we still don't have effective treatments let alone cures if we are truly going to build a world where everyone with imee gets diagnosed has access to effective treatments we are going to need to set our sights even higher we are going to need to shake up medicine and science itself let's link arms with the women's movement the disability rights movement with all people with chronic illness fighting for cognition and access to care especially those with either download syndrome pots just as Hana mia endometriosis Mass Observation disorder multiple chemical sensitivity chronic Lyme disease fibromyalgia we know we are cousins or at least doppelgangers we don't yet know why but we have to find out we will liberate ourselves and build the world that we need for our disease but let's never forget the fundamentals that have shaped what people what people with a me have had to face the stigma of disability sexism and what is broken in the way that medicine diagnosis treats and listens to patients and now I want to talk to Washington Francis Collins you have the power to help end this crisis and return millions of people to their lives you said good science takes time I don't have time I am young now I am alive now and every day that you do nothing I am losing my life we have already lost so many people to suicide to neglect to the severus forms of this disease and we have already lost decades the time to act is now half-measures small steps tokens gestures these are the same as an action and we will not accept them we will accept only what we need and deserve massive investment and a plan a real plan for what you are going to do to help cure Emmie I so wished I could be there today and I hope I can be there next year thank you so much and I hope we can all get together again soon

 

Thanks, Luther, that's clever - it wouldn't take much to make it readable. I'll do that now.

 

Phenomenal speech @JaimeS I’m so sorry for your loss.

 

Brilliant!

 

I hope it's OK with @JenB that I'm posting this - happy to remove it and/or have it transferred to somewhere that #MEA would prefer (@JaimeS). I still think that Jen was reading from a transcript, though, and my guesses at her punctuation will of course be less accurate than her original.

Once again, blown away by this!

I've left it out of quote marks for easy reading:

Hi, Los Angeles! I crashed very hard on Monday and I'm sitting up really just for this video, but that's an improvement. And I'm so sorry I couldn't be there today. I really wanted to meet you guys but I just wanted to... had some thoughts I wanted to share, and so even though it's a little weird to do this by video, I'm gonna read my speech and so here we go.

Thank you to everyone who has come out to be seen, even though it will cost you, and to everyone who came out to support us. We are in a fight for our lives, and the only way we're going to win is if we do it together.

Here in Los Angeles and in over 100 cities around the world, we've achieved so much in the last few years, raised so much awareness, and I've told my story so many times. But not today.

Today it is time to move beyond awareness. Now comes the hard, step-by-step, brick-by-brick, hand-to-hand work of taking action.

I wanted to talk first about taking action in Los Angeles. By almost random luck, three of the largest ME organizations in the world - the Open Medicine Foundation, Solve ME/CFS and #MEAction - are all based in the LA area. #MillionsMissing is not just a single day of global action. It is a call to work together and organize in our local communities throughout the year.

So let's keep gathering, let's keep coming together and see what we can do to turn Los Angeles into a city of excellence - forget center of excellence - a city of excellence when it comes to the diagnosis and treatment of this disease.

Over the next several years let's go and talk to every nursing school, every medical school, go to every hospital every public clinic, and get new clinicians and researchers interested in this disease. Let's end the crisis of misdiagnosis and underdiagnosis. Let's go and find the African-American people, the Latino people, the Asian people, the indigenous people, the Muslim people that are not a part of our online conversation, that are not getting any care, that are missing from our community.

Let's fight for school accommodations and work accommodations and safe housing and the disability benefits that we have already earned but so many of us are denied because of the stigma and the ignorance. Let's talk to every local politician, visit all 18 LA congressional home offices.

Let's end the epidemic of homelessness and suicide. We will need to do this because parity is not enough. So many chronic illnesses that are funded, that are no longer stigmatized, we still don't understand their causes. We still don't have effective treatments, let alone cures.

If we are truly going to build a world where everyone with ME gets diagnosed, has access to effective treatments, we are going to need to set our sights even higher. We are going to need to shake up medicine and science itself.

Let's link arms with the women's movement, the disability rights movement, with all people with chronic illness fighting for recognition and access to care, especially those with Ehler's Danlos syndrome, POTS, dysautonomia, endometriosis, [inaudible] disorder, multiple chemical sensitivity, chronic Lyme disease, fibromyalgia.

We know we are cousins, or at least doppelgangers. We don't yet know why, but we have to find out.

We will liberate ourselves and build the world that we need for our disease. But let's never forget the fundamentals that have shaped what people what people with ME have had to face: the stigma of disability, sexism, and what is broken in the way that medicine diagnoses, treats, and listens to patients.

And now I want to talk to Washington. Francis Collins, you have the power to help end this crisis and return millions of people to their lives.

You said good science takes time. I don't have time. I am young now, I am alive now, and every day that you do nothing, I am losing my life. We have already lost so many people to suicide, to neglect, to the severest forms of this disease, and we have already lost decades.

The time to act is now. Half-measures, small steps, tokens, gestures: these are the same as inaction, and we will not accept them. We will accept only what we need and deserve: massive investment and a plan. A real plan for what you are going to do to help cure ME.

I so wished I could be there today, and I hope I can be there next year. Thank you so much and I hope we can all get together again soon.​

 

Photos are being collected by MEAction here - https://meaction.smugmug.com/MillionsMissing-2018/

 

I'd be happy to transcribe yours if no one's already on it.

 

I forgot to add, but http://www.diycaptions.com/ has ways of cleaning up the youtube captions, like removing timestamps to get you a better raw text to work from.

 

Absolutely! It's meant to apply to everyone, everywhere, but I specifically spoke to LA because that is where I was supposed to be, and because it is symbolic of the vision that the next few years is going to be all about distributed, local organizing for coordinated national and global impact. That's the vision for #MEAction 2.0, and we're going to work as hard as we can to support local organizers to carry it out everywhere.

It was an AWESOME crowd. And I think they might win points for the best chanting ever:

I also think we really, really need to get away from numbers and press coverage as the primary outcome. It's about the work we put in, the organizing. Everything else will come. There were probably 20 people at the NYC protest and 70 this year. So that's an amazing factor of growth! This is their second year (London's third). Considering that two years and a few days ago, there were zero protests and zero people *anywhere* (aside from a few protests/pickets of maybe ten people max every few years in DC, San Francisco, or NYC) what happened yesterday was extraordinary. Let's not get too used to the new status quo too quickly that we don't fully appreciate how incredible this is, recognize the work that it took to get here, and the work that we are going to need to keep doing in order to continue to grow.

Also, remember that a lot of people at London came from outside London. The US is a much bigger country with cities spread out all over the place. The two closest major cities are Boston (3 1/2 hours) and Philadelphia (2+ hours) away. People in NJ or Connecticut held actions in their own, small towns.

Lastly, our email list and social media following has always had a stronger UK base relative to population. I think it's because without an NHS, there is not the same kind of standardization of diagnosis. Patients with our presentation here are diagnosed with CFS, chronic Lyme, EDS, fibromyalgia, POTS, dysautonomia, Chronic EBV, MCS, mold illness, etc. and come to identify with those communities rather than our movement. It the UK, the majority of these folks will just get diagnosed with ME. It means the community in the UK is more unitary while here it is more fragmented, by both diagnosis and geography.

 

JaimeS' speech:

Hi everyone, my name is Jaime, I was managing editor at MEAction for about a year, I worked at Stanford for about a year, and now I’m back at MEAction. You may know me on Phoenix Rising as JaimeS.

I’m actually not going to talk about myself today. I’m going to talk about the strong, incredible, phenomenal women in my family. In the early 1990s my mother was diagnosed with Post Viral Syndrome, Post Epstein-Barr Syndrome. That was back when they said that it was the province of bored white housewives, and that it should be called “Yuppie Flu”. I watched her go through incredible trials and stigma. She came close to death. She went through liver failure. She was taller than me, and at her lightest she weighed 85 pounds because she had become intolerant to every food that you can imagine; and still, people looked at my mother and they said, “You’re probably fine. I don’t think that you can be sick”.

Me and my sisters grew up in that environment. When my oldest sister was diagnosed with chronic fatigue syndrome when she hit her thirties, she didn’t tell anyone. She saw the way that people had dismissed her condition, had thought of her as a weak-willed woman. When I think about that, a fire starts in my gut, travels up my throat, and I hope that you can hear it today. My sister didn’t tell me she was diagnosed with CFS, until I hit my thirties and I was diagnosed too. My diagnosis path might have been a lot faster if the NIH and the CDC had acknowledged ME as a real disease, worthy of treatment, worthy of study, acknowledging that we as human beings are worth just as much as somebody with a diagnosis of cancer or MS or chronic kidney failure. Instead we were dismissed. When I was diagnosed was when she finally told me that she had been as well.

This is the first time I’ve said this in public so this is hard: my oldest sister died at 42. Nowhere on her chart, much less on her death certificate, will it ever say that ME contributed to her disease, or her death. She passed away post-surgically due to what her doctors called an intense overreaction of her immune system, as though she had been going into septic shock. But there was no infection to be found—it was due to her dysregulated immune function.

She leaves behind two sisters, two children, and a loving husband. I cannot help but think that if the NIH and the CDC had viewed the condition that I have, that my mother has, that my sister had, as a disease that was worthy of addressing, worthy of funding, worthy of treatment, if we had not been dismissed and discounted as though we were less than human, my sister might be alive today.

When my sister learned that I had joined MEAction and started doing science writing, she said she was prouder of me than she had ever been. There is a hole in my life because she is gone. She unconditionally supported me, she unconditionally supported this cause once she knew that all of my will and heart and love were behind it. I will always remember her, and I will always fight to ensure that we all get not special treatment, but the same treatment that other chronic disabling diseases get.

I made a poster for today. I just want to point out that our incidence is high in this disease, our quality of life is lower than in the diseases I just mentioned, and our funding is at $8 per patient per year as of 2017.

I want to also say how proud I am of our community, how proud I am of our solidarity, and how proud I am of all of you who are fighting, not just in person, but from home. I know who you are, I see you, and I think you are some of the bravest people I have ever known. Thank you.

[Applause]

 

Really impressed by the NYC demonstration. The repetition was great, involved everyone there. Just watching round the world from my bed. So sad for all but research, funding....what does ME need?