NINDS Institute director, Dr. Walter Koroshetz, has made it clear that neither he nor the National Institutes of Health (NIH) are ready to take the immediate actions needed to address the crisis of myalgic encephalomyelitis (ME).
In response to #MEAction’s recent letter calling on the NIH to ACTION now for ME, Dr. Koroshetz responded with bureaucratic excuses and a “we’re already doing enough” attitude. In his Nov. 4th response, Dr. Koroshetz failed to adequately address any of the five critical actions we outlined in our letter. By continuing to ignore these critical impediments, the NIH is endangering the work they are already doing for ME/CFS research. It is an unacceptable response from Dr. Koroshetz!
Read our analysis of Dr. Koroshetz letter here. We break down his excuses by explaining the reality of the situation on-the-ground.
#MEAction will continue its #NotEnough4ME campaign to show Dr. Koroshetz and the NIH that people with ME deserve ACTION now after decades of neglect and stigma. But, we need YOUR help! We must show Dr. Koroshetz the power of our community!
JOIN US in calling on Dr. Koroshetz to take urgent ACTION for ME. We are launching a video campaign to tell Dr. Koroshetz that his plan is failing people with ME. We need you to add YOUR voice to the video campaign to put pressure on Dr. Koroshetz and the NIH.
Take Action! Join Our Virtual Response!
Take TWO steps to participate:
- Record a video of yourself (can be as short as 15 seconds) telling Dr. Koroshetz his plan is not enough, and his response to #MEAction is not sufficient.
- Post the video on social media and tag Dr. Koroshetz, NIH and #MEAction.
1. RECORD YOUR VIDEO MESSAGE
Sample script: (Personalize your video as much as you want, but if you don’t have the energy just use this text:
Dr. Koroshetz, the NIH is failing people with ME
We need you to take REAL action now!
Your response to #MEAction’s demands is NOT ENOUGH.
Here is an example video of how easy it can be.
You can also do something in your video to express your frustration with Dr. Koroshetz. Here are two types of options, but be as creative as you like!
Option #1: Express your frustration with the letter by doing something with it.
- Crumple or tear up letter, throw in trash
- Mark-up letter teacher-style: “F” w/ red pen
- Place all your pill bottles over the letter
- Flush torn-up letter down toilet
- Use letter to clean out a pet’s litterbox
- Make into a paper airplane and “crash” it
- Build a piñata (papier-(maché) representing the letter/plan and bash w/ bat til $ bills come out
Option #2: Visually show the cost of this disease on you, why Dr. Koroshetz response is “NOT ENOUGH!”
You can be as creative or simple as you like, but every video should include these elements:
Personal: Show your face | Say your name | Show your (or your loved one’s) dignity
Pressure: Demand action | Reject Dr. K’s non-response | Be forceful
Playful/Passionate: You can have fun / You can be upset / You can do both
2. POST ON SOCIAL MEDIA
Include our campaign message and hashtags when you post on social media so others will see & support us.
Dr. Koroshetz doesn’t get it! #pwME are #FightingForOurLives yet [INSERT NIH tag below] refuses to fund research to end the #MyalgicE health crisis. This is #NotEnough4ME & we won’t stop fighting until our demands are met! Sign/share @meactnet petition: http://bit.ly/2qI3Xk5
Insert the corresponding NIH tag based on the platform:
OPTIONAL: SEND TO #MEACTION
Email your video to [email protected] or upload it to this online folder, we may use it in a compilation video or something else.
20 thoughts on “NIH: Dr. Koroshetz Declines to Take Urgent Action for ME. Read His Response and Take Action!”
Send this for me.
My Dear Dr. Koroshetz,
Assuming it’s not taxpayer money, and it’s not lack of caring, tell me what the real problem is between you and the ME/CFS organization.
Are you kidding?
Many of us, if not most, are too poor to own a video camera, or if we did have one, have the energy to make a video let alone do anything with it after we’ve shot according to your directions.
And on top of all of this, you’re assuming that patients don’t have any brain fog so we wouldn’t have any trouble following your directions.
This is a disaster. Whoever thought this up clearly doesn’t have ME/CFS. Or if they do, they’re wealthy and have plenty of family support.
I’m sorry you feel that way. I have ME and I worked really hard to make it as simple as possible for people to participate. I am profoundly grateful for the family support I do have, and I certainly recognize not everyone has that.
We recognized that doing a video action would be harder, and less people would participate, than doing a picture or something else, but we thought it was worthwhile to encourage videos to get more attention by the amount of effort it required.
You are encouraged to participate in the #NotEnough4ME campaign and make your voice heard even if you can’t record a video or do certain aspects of this action. You can share other people’s videos on social media and you can also help by signing and sharing this petition: http://bit.ly/2qI3Xk5
If you’d like to do more but need some help you can email [email protected] and one of our volunteers can see if we can assist you. Most of us have ME ourselves and are doing the best we can under our own constraints, but wherever we can we want to be there for each other. This is about collective action and solidarity. Many people with severe ME will never be able to participate in these actions but we are determined to do what we can to fight on for them and everyone else.
#MEAction Campaigns Director
I fell like she does, and I understand your points, too. This is ME/CFS. This is our shared reality. Some of us just don’t have any help, or the strength to compensate.
I’m in the same boat as you – pitiful lack of support, resources & cognition. I’m frustrated too in that I’d like to advocate for myself and others, but scrounging up the energy to fidget with my ancient laptop’s internal camera program, trying to get my brain to craft a concise message, and actually completing the task seems insurmountable. (“Urgent” action is no longer in my activist vocabulary!:-)
But I am also thankful there are some on the ME “spectrum” who are functional enough think up creative actions such as this, and still have the ability and means to participate in and carry out attention-getting, sustained campaign ideas of any kind within their abilities (which is how social movements – like the AIDS crisis, for example – finally get the recognition they deserve). We may not always agree on the methods, but doing nothing is no longer an option. We do what we can, when we can. So I’m grateful to have more ‘able’ people in the ME community – they’re fighting for all of us.
So, this “urgent” action may or may not be something I personally can participate in, but there will no doubt be something more doable along the way that maybe you or I can handle. I was an activist and advocate for other stuff all my life before I was taken down by ME 23 years ago, and for a while even with ME. So you can bet I’m frustrated not having the means or brain-body energy to do advocacy any more, or in a way that is commonplace these days. I can’t afford it on many levels, but I sure am glad there are those who can!
WOW Kelly!!! Who ever said you needed a video camera? Let me guess, you are probably writing this comment from your phone or laptop which HAS A CAMERA! The directions for making this SIMPLE video are extremely easy… State your name and print out one page of his letter and rip it up. Yes all of us have brain fog but that’s what a pen and piece of paper are for, write down the directions and follow them by reading what you wrote on the paper. The thought of you saying this is a DUMB IDEA is crazy, and yes the people that did think up this AWESOME IDEA do have ME/CFS or a family member does. I’m not sure what thinking up an idea has to do with being wealthy or having family support because that literally makes no sense! Be happy that we even have MEAction and people that go beyond the extra mile to try and get us funding for research! If we didn’t have MEAction we would be in a world of trouble with no paddle! You shouldn’t be so negative towards something so positive that could possibly get us the recognition and funding we so DESPERATELY NEED FOR DECADES NOW!
I guess you don’t understand the depth of the brain fog some of us have. Let me share an example:
I’ve been drinking coffee every morning for some 50 years, yet when ME/CFS brain fog takes over, I can’t follow through on the very simple process of:
1. filling a cup with water
2. microwaving it
3. adding instant coffee before the water has cooled down and must be microwaved again (and again, and again)
4. adding sugar
5. adding milk
6. actually drinking it.
It can take until 3:00 or 4:00 in the afternoon, before I’ve finally connected those dots and almost finished drinking the first morning cup of coffee, no matter how hard I try.
For you, perhaps, the same would read: Heat water in a cup, add coffee/milk/sugar, and drink. Done. It’s no longer so easy for brain foggers. And, as you read this, you might imagine this was my only priority of the day. It wasn’t. Staying alive requires more, and doing it solo, without anyone to advocate or assist, requires even more.
It is EXTREMELY SIMPLE, all you need to do is use your phone to record the video or if you have a laptop use the camera on it. The video you make only needs to be 15 second long or more your choice. Here are the guidelines to make it easier for you.
1. Say your name
2. Rip up the letter & say “this is not enough”
3. Demand action
Then once you’re done you can either email it to MEAction or you can click on where it says “online folder” and upload it there.
If you don’t want to make one a friend can for you OR don’t make one at all and go check out other peoples videos and you can SHARE those… when sharing use the hashtags they recommend, my favorite is #NotEnough4ME
Wow, Jackie, I’m embarrassed FOR you. I’m not sure I’ve ever read a post so completely out of touch about how ‘easy’ things are for severely disabled ME/CFS patients than the two you’ve posted here.
Let me guess. You probably wrote your comments from your comfy upper-middle class or even middle class home that you share with your parents or your husband, of course after you’ve gotten back from your overpriced appointment at Stanford. Next, you assumed everyone has a computer or a cell phone with a camera, or I guess I should say, WITH A CAMERA, not to mention a printer to print off the letter you think will be so effective.
NEWSFLASH: Many of us live on SSI disability payments that average about $750/month with $115 for food stamps. Have you tried living on that Jackie? Have you tried getting decent nutrition on $3.50/day?
Please tell us how we can get a phone with a video camera — AND pay rent AND buy food, let alone afford any supplements, or even PAPER — or a stamp to mail it in — on that kind of ‘income’.
My medicaid phone has a camera on it that takes photos that look like charcoal drawings, that is IF you can get them off of the phone. These are the only phones available for medicaid patients, they have no bells and whistles unless one has the money to pay for those extras.
You’re certainly entitled to your ‘crazy’ opinion, but the very fact that quite a few people have written their letter to the NIH shows not only how difficult your ‘easy’ option is, it also is a testament to the brain fog that comes with this illness that patients thought they should write their letter here in the comments section.
And lastly, please don’t put words in other’s mouths. Nowhere did I say I did not appreciate MEAction or their efforts. I’m indebted to the work of Jen Brea and Ben and others on the team. They’ve done more for us than anyone in the history of this illness. I just said I thought this specific idea was a ‘disaster’, and showed a lack of understanding toward those who are sicker and lack the financial ability to participate, and I still believe that.
And even if we had the money, I still disagree that this will be effective. When this is done, the NIH will have videos of patients who claim they’re too sick to do anything — but here they are writing letters, then filming themselves tearing them up, flushing them down a toilet — and the NIH just MIGHT say, “Hmmm, they can write, they can follow directions, they can film themselves…are they really sick? Or do they just think they are? If they can do all this, why can’t they at least get a part time job?”
In my opinion, the better option was to sign the petition and add some personal comments. That’s what I and others did, when we had access to a computer. Since I’m living in section 8 housing and am housebound, I posted my original comment the last time I had access — and the “energy” — in the building next door, and am posting this reply to your insulting and patronizing comment TWO WEEKS later — because this was the next time I had the energy and access.
Now my batteries are back down close to zero, but I hope you’ll tell us how we can do this easy project with no funds — let alone no energy — to do it. Please Jackie, tell us again how ‘EXTREMELY SIMPLE’ it is to do…
Dear Dr. Koroshetz,
You have a responsibility to all Americans with this awful disease. Our son has been bedridden for 5 years. If you personally knew anyone who has had their lives stolen by this disease you would be jumping though hoops for funding. These people (our son is 33) could be in the American workforce. Imagine the worst flu you ever had times it by 20 and this is how our son feels every day!!!
Do SOMETHING AND DO IT IMMEDIATELY!!!!! Please I am begging!!!!!
Dear Dr. Koroshetz,
You’ve been able to pursue your career goals energetically. Will you take just a few moments to imagine how your career would have been derailed if you faced profound fatigue, ongoing pain, and cognitive fogginess every day for years and years? If you have a son or daughter or nieces or nephews, imagine how their hopes and dreams would be dashed if ME/ CFS suddenly took over their bodies.
Those of us who have had careers and see our children unable to begin theirs because ME/CFS has robbed them of the ability to do so are desperate for your leadership. NIH is failing the victims of ME/CFS and their families. Are you really living up to the Hippocratic oath you took many years ago? Every time NIH drags its feet it’s doing irreparable harm. Isn’t it time to raise hopes and find a cure?
You are not doing enough to solve M.E./C.F.S. I have had 24 years of my life taken away by this illness.
Solving this illness is going to take lots of money for research.
Our community has been neglected for decades. It is disgusting!
This illness is going to need more funding than AIDS / HIV had.
Get moving! Your neglect is an embarrassment to your organisation.
Enuf already!!! It’s not enough.
Maybe the real reason is he doesn’t need to do good for M.E sufferers because he don’t know anyone who is suffering from this crippling disease
Me is a real illness, it is debilitating, degrading and steals the person’s life. Please listen to the ME community, we are fed up being told it is not real, IT IS. You wouldn’t be so dismissive if it was you or a member of your family.
Dear Dr. Koroshetz,
I’ve spent more than half my life disabled by ME—almost all of it housebound or bedridden and being medically abused by doctors who lacked knowledge and training. I completely lost my 20s and 30s to it despite being enthusiastically prepared to contribute to society in a variety of ways. I cannot afford to wait longer for the NIH to begin to make ME a priority. It is a snub to our personhood that it did not happen long ago. Have mercy on us, and if nothing else, respect the numbers in terms of the cost that this disease burden places on society. This is worth fixing!
I wish I could just scream at the world how sick and tired I am of being so sick and tired! My medical career fulfilled a childhood dream, cost an extra decade and a half to break through several bias-built glass ceilings, and just when I should have been earning enough to pay back huge student loans and look forward to a future of financial security, it all came crashing down with a disease that humiliated me in front of my peers, because doctors don’t “believe in” ME/CFS, and even a doctor who claims to have it must be “lazy or crazy.” As if those glass ceiling biases weren’t enough, now this! And now, this for almost as long as it took to jump through all those extra hoops to finally fulfill my dream, only to have it ripped from my life, along with any sense of purpose, usefulness, value, or self esteem.
This is ME/CFS. This is what it does. And this is one measly case of a tax-paying citizen whose taxes, alone, could have supported a major research project, had I been able to keep working — as an orthopaedic surgeon.
NINDS does not even list ME as a neurological disorder, even though encephalopathy is in the name. Between the inaccurate designation, the paucity of grant money and their other stupid idea of creating “research centers,” it is clear that they view this as a psychosomatic disorder.
Dr. Marcie Zinn
Hi, me again,
You must remember that most people use heuristics (extremely simplified thinking) when asked to do or support something that they have failed to examine the evidence for. Unfortunately, they never attempt to look at the evidence. THIS is a combination of the Cognitive-Behavioral model and the Freudian model, so this guy staunchly believes that we are simply “reinforced” by all of the attention, meds, offers of help, etc. and that we have many unconscious drives in operation (like, we are just mad at our 4th cousin 10 generations back, or something equally stupid). He is forgetting how PUNISHING it is to live this way–to give up even a semblance of a life, to starve, to hear over and over that “you don’t LOOK sick,” not to mention the insults, inability to get medical care (any care).
I have a word for people who are trained to give up heuristics but fail to accomplish that goal, but cannot write it here. It is probably the same designation you have.
BTW, I need to publish my data before commenting on it, but for now, PLEASE do NOT ENGAGE IN ANY TYPE OF EXERCISE UNLESS YOU JUDGE THAT YOU CAN BE OK THE NEXT DAY & AFTER. You probably know this, but this is my 2-cents worth today. I hope everyone even considering GET reads this.
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