The next IOM meeting will be held on May 5th and 6th. A whooping one fourth of the meeting is open to the public’s listening in. No public participation is allowed, except for comments by a few, hand select people. But we can still make our opposition to the IOM “study” and our support for the CCC heard loud and clear during that meeting by participating in the Thunderclap campaign that will run on the morning of the first day of the next IOM meeting. It’s very easy. Below are step-by-step instructions.
What is Thunderclap?
Thunderclap is a crowd-speaking platform that amplifies messages by allowing large groups of people to share a single message together at the same time by pledging to Twitter and/or Facebook and/or Tumblr a message that will be broadcast at the exact same time in order to achieve maximum effect. It’s like an online flash mob. By using Thunderclap, our reach on social media will be far broader than it would be if we were simply posting on Twitter, Facebook and Tumblr without Thunderclap.
Thanks to Wendy Boutilier and Sally KeelaToo Burch for the graphic and to Fred Smith for allowing us to use her YouTube video. And thanks to everybody who has already participated and is promoting this effort. It’s very much appreciated.
Instructions
Go to the Thunderclap page here https://www.thunderclap.it/projects/10666-stop-the-iom-adopt-the-ccc
Click on “Support with Facebook.” If you are signed into Facebook, click on “Add my support.” (If you are not signed into Facebook, Thunderclap will ask you to do so as one of the required steps.) If you wish, you can personalize the message that will appear on your FB wall on May 5th under “Make it your own! Add a custom message” or you can just leave the message unedited, which is a good option for folks with cognitive impairment or healthy friends and relatives with busy lives or are not totally familiar with the issue.
The next window that opens requires you to agree to the Thunderclap app. Simply click “okay” if you are in fact ok with that.
If you want to get updates about this Thunderclap campaign (from me), you can then enter your email address. That will allow me to let you know of milestones we achieved. This is entirely optional. If you do not wish to receive updates, just click on “No thanks.” If you do want to sign up for updates about this particular Thunderclap campaign, I suggest you opt out of “Keep me updated on other news and developments from Thunderclap” simply by unchecking that box in order to keep your inbox clutter down.
The last step is to share with your Facebook friends that you supported the Thunderclap campaign. Promoting the campaign that way goes a long way in gaining additional supporters. Again, you can simply click on “Share” or customize your message. (This is a different message than the one that will go out on May 5th, which you can find towards the end of this post. The message in this step just lets people know about the upcoming Thunderclap on May 5th.)
If that was successful, the blue Facebook button will turn grey indicating that you no longer have the option of supporting this campaign using FB. This way, Thunderclap prevents people from cheating by supporting the cause more than once using the same platform, in this case Facebook.
Some people have reported that their support “didn’t take.” So, it’s a good idea–after refreshing the page–to scroll down on the Thunderclap page and check under “Recent Supporters.” If your name does not appear there, something went wrong and you should try again. Your name will get pushed down as others support the campaign, so it’s best to check right away after you completed the above steps.
If you have a Twitter account, please support the Thunderclap using Twitter AS WELL, i.e., even if you already supported via Facebook. Simply click on the Twitter button on the Thunderclap page under “Support With.” You can either just click on “Add my support” and leave the tweet that will go our on May 5th as is or customize it and then click on “Add my support.”
You then have to authorize the Thunderclap app.
Then “spread the word” on Twitter that you are participating in this Thunderclap by clicking on the “Tweet” button. You can customize the message that goes out to your followers to let them know about your participation or leave the tweet as is. Click “tweet” again in the window that opens and you are done. (This is a different message than the one that will go out on May 5th, which you can find towards the end of this post. The message in this step just lets people know about the upcoming Thunderclap on May 5th.)
And once more, you get the choice of receiving updates from the campaign and Thunderclap. Both are optional and I would recommend you un-check the button for Thunderclap developments. Please see above under “Facebook” for more info.
Then refresh the page and if all went well, the Twitter button will now be grey. You can confirm that your Twitter support “took” by checking if your name appears under “Recent Supporters.”
Note
If you used both Facebook and Twitter, your name should appear under “Recent Supporters” twice. Most people use a different profile picture for Facebook than for Twitter (avatar). This is a good way to tell which method of support might not have worked if there was a problem and try again.
Tumblr
I do not have a Tumblr account, so I can’t walk you through the steps for that. But I imagine it is similarly easy as Facebook and Twitter.
Keep Sharing
Please keep sharing this Thunderclap campaign between now and May 5th. If everybody tries to get at least three additional people to sign up and those people, in turn, try to get at least 3 people involved, we can make a real splash during the IOM meeting. Send emails to friends or family members that you know are supportive. Share on Facebook and Twitter frequently. This is a very easy way for healthy folks to help our cause. The Thunderclap website explains the reason for our opposition to the IOM “study” and our support of the CCC.
What happens on May 5th?
At 9am on May 5th, the morning of the first day of the next IOM meeting, the following message will be shared on your Facebook wall and/or your Twitter feed:
“Stop IOM non-experts from defining #MECFS! Adopt CCC per experts! Stop org COI. #StopIOM #AdoptCCC #HHS http://thndr.it/1i99XF3”
Question?
Please do not hesitate to contact me with questions you might have regarding this campaign or if you run into trouble with the Thunderclap website. It’s easier than it looks, but brain fog can play tricks on us sometimes. I am very happy to help.
Thoughts About M.E. 
Thanks Jeannette. Those detailed instructions will help alot of people.
Thanks for these clear instructions Jeanette.
Reblogged this on Short Blogs for the Distracted……… and commented:
Please get involved and help us x
Thanks, Chris!!!
Cheers and ROARING THUNDER to the THUNDERCLAP !!! Here we goooo!!!! Thanks for outlining with all the instructions, Jeannette 🙂
Dear Jeannette, Pardon my confused brain…. is this Thunderclap so that everyone who is signed in can hear the entirety of the 2-day meeting??? I’m just not understanding what the purpose is and I read it several times but admit I’m not up on computer “stuff”. Wonder who the couple of handpicked patients are to be? Wishing I were one of them….. Oh, and PS…. I just listened to a CFIDS youtube video with Univ. of the Pacific who do the “bicycle testing”. Pitiful but they said that simply the energy involved in taking a shower EXCEEDS our aerobic threshold. Sitting in the shower conserves 25%. My goal is getting CFS/ME taught in our medical schools and designating a specialty. No other “hidden” agendas. FYI. Thanks Much.Marcie Myersslosouljourn@live.com
Date: Wed, 16 Apr 2014 18:56:21 +0000 To: slosouljourn@live.com
Hi Marcie, no need to apologize. It just goes to show the cognitive struggles we experience.
This Thunderclap is a way to get a message out by many people (those who sign up before May 5th) all at the same time.
And no, we will not be allowed to watch the entire 2-day meeting. 3/4 of that meeting will be held in secret.
I assume that we will hear from three patients or caregivers given the time set aside. 30 minutes for each.
I want to do this as I think this is how social media should be used, as an online flash mob. I love it. However, my brain fog is impaired right now — am dealing with an apartment crisis, spent a long time cleaning out kitchen cabinets and my legs/knees caved in. This somehow affected my cognition as this disease is weird as we all know.
If/when my brain fog lifts, I will do this and try to get friends and relatives to do the same.
Thanks for doing this. (Oh would that we could do a real flash mob, my dream, and get the brass band that often joins in them!)
Technically, the video was created by myself to promote http://meadvocacy.org and explain M.E. patients’ current situation with the HHS. Anne Keith gave permission to use her protest video clip in the video, and provided feedback on the content, but didn’t create or post the video. However, I’m glad that you have shared the video for the Thunderclap – that’s what it’s for – M.E advocacy. I encourage advocates to use M.E. Advocacy.org for their campaigns.
I apologize, Fed. I was not aware of that. I asked Anne for permission to use the video and she gave it. I will amend the post to reflect your ownership. Thanks for letting me know! And thanks for creating such a powerful video!
Hi Jeanette: I was hoping you could “dumb down” this thunderclap movement for me.
Above, you mentioned:
“This Thunderclap is a way to get a message out by many people (those who sign up before May 5th) all at the same time.”
I would like to understand what the purpose is of this movement. Specifically:
1.What are the goals of this action?
2. Is this considered a disruptive action to the proceedings that could be perceived by the government as harassment; and/or does it violate any laws?
3. What is the exact message of this thunderclap movement?
I have other questions, yet these are a start.
Respectfully,
Julia Hugo Rachel
Hi Julia,
1. The goal is to communicate to HHS and the IOM that many patients are opposed to the IOM “study” and that want the CCC adopted immediately instead. The government completely ignored the experts and hijacked the CFSAC recommendation to have the potentially most complex disease of our times re-defined by non-experts. There are serious legal issues surrounding this contract and it is obvious that the government’s goal is to prevent a good definition (the CCC) from being adopted in order to continue to sweep this disease under the rug. The IOM “study” is ludicrous and many patient continue to oppose this effort. They do not want to cooperate with the IOM by answering their questions because participating means legitimizing an illegitimate process. We have been vocal all along and will continue to do so to achieve a termination of the contract. This Thunderclap is just one of our courses of action.
2. For obvious reasons, I cannot give legal advice here or elsewhere on my blog (and there is no attorney-client relationship created on this blog), but what laws could possibly be violated by a peaceful, civil show of opposition? I hope it will be disruptive in the sense that it will make the IOM think about how ridiculous the whole thing is. Remember the dozens or hundreds of emails that were sent daily last year in support of Amppligen. I sent them myself, so I am not critical of that effort. But if you want to talk about disruptive, that was most likely much more so than the Thunderclap while at the same time being a lot less effective because the messages just went to spam folder after the first couple of days. This Thunderclap is going to reach tens of thousand of people, maybe more.
3. The exact message, as the tweet that will go out said, is that we want the IOM contract to be terminated and the CCC adopted.
Hope that helps,
Jeannette
Thanks for explaining Thunderclap.
This is an excellent use of social media.
Actions
IOM MECFS Study
4/18/14
To: slosouljourn@live.com
Marcie,
Thank you for your email and your interest in the study. Below are the answers to your questions. Some of the answers overlap, so I didn’t address them line by line.
Here is a link to information on the study. http://www8.nationalacademies.org/cp/projectview.aspx?key=49592
It contains the full task of the committee, a list of all committee members and their bios (“committee members” link on right side of the page), and meeting dates with agendas (links on right side of the page). We are expecting the study to be completed in the Spring of 2015. The meetings section will be updated as the study progresses, so you can keep checking back.
For the upcoming meeting, several patients are presenting to the committee about their challenges of interacting with the health care system. Here is the tentative meeting agenda that includes the other presenters.
http://www8.nationalacademies.org/cp/meetingview.aspx?MeetingID=7259&MeetingNo=3
As far as who will be in attendance, the presenters are listed on the agenda; however, our meetings are open to the public. The goal of the committee meeting, as well as with public meetings for any IOM committee, is to gather information for the study and solicit input from individuals who have been directly involved in, or who have special knowledge of, the subject under consideration. More information on the IOM and National Research Council study process is here http://www.nas.edu/studyprocess/index.html#st3
Anyone can decide to attend the meeting or watch via webcast. If you would like to attend the meeting in person, you may register here: http://www.surveygizmo.com/s3/1608315/BSP-Diagnostic-Criteria-for-MECFS-Committee-Meeting-3-5-5-14. Please note that there will be no opportunities for public comment at the committee meeting. The committee is interested in hearing the public’s opinion on the following questions, so if you wish, you may submit your feedback to mecfsopensession@nas.edu.
1) In your opinion, what are the most important issues that healthcare providers should be educated about when it comes to diagnosis of ME/CFS?
2) What are your thoughts on the current terminology used to describe this disease: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? If you could suggest new terminology, what would you suggest and why?
Throughout the study, and for any IOM study, the public can submit materials that they think are relevant to the committee’s task. The materials can be submitted to mecfs@nas.edu or delivered in person during a public committee meeting.
The study is sponsored by the Department of Health and Human Services and the Social Security Administration. How they choose to use the resulting report, whether it is to develop a teaching curriculum, is at their discretion.
I hope you find this information useful.
Best Regards,
IOM Staff for the Committee on Diagnostic Criteria for ME/CFS
DEAR JEANNETTE,
THE IOM COMMITTEE IS CHOCK FULL OF EXPERTS. SEE THE ATTACHED LETTER ABOVE. I’M NOT SURE WHAT YOU ARE OPPOSING BUT BASED ON MY FINDINGS I’M COMPLETELY COMFORTABLE WITH THE LIST OF COMMITTEE MEMBERS AND THE GOAL. I THOUGHT I’D SEND YOU THE ABOVE LETTER SO YOU COULD CHECK IT OUT FOR YOURSELF. I’D ALREADY TOLD YOU THAT I DID SEND A LETTER FOR THEIR MAY 5-6 MEETING AND CAN ALSO SEE HOW IF THE ROOM WERE FULL OF PATIENTS EACH WANTING TO BE HEARD THAT THIS COMMITTEE OF EXPERTS WOULD GET NOTHING ACCOMPLISHED. MARCIE MYERS. SLOSOULJOURN@LIVE.COM
Marcie, I’ve written about the irregularities surrounding the IOM “study” for months. I doubt it’s helpful if I repeated “what [I am] opposing,” but I must say I am surprised that anybody would be “completely [!] comfortable” given the multitude of problems with the process, although everybody should certainly form their own opinion. In fact, I don’t think that even the pro-IOM camp is entirely comfortable. So, this is a new perspective that you provide.
Just one comment, according to the government itself, the panel is made up of a majority of non-ME/CFS experts and not “chock full of [ME/CFS] experts,” but maybe you do not think it is essential that only professionals intimately familiar with this complex disease be involved.
In any event, I would love to hear you rebut my arguments one by one. I find abstract discussions such as this one a lot less helpful.
PS: Many patients have a very hard time reading all caps. So, I am asking, as matter of courtesy to fellow patients, that this be taken into account by everybody for comments on my blog. Thanks!
Fifty of the world’s renowned ME/CFS Experts and Researchers oppose the IOM contract and ask for the adoption of the CCC–they have sent letters to the Secretary off the HHS outlining their opposition. That, in an of itself, is a loud testament to the colossal problems with the ‘set up’ HHS IOM contract and the further problems and harm this will deal to the ME/CFS patients/community.
Life has been busy with dealing with other family health crisis–so, just today got out my ‘blurb’ to my peeps with a plea to help with the THUNDERCLAP–I am not active on FB–but they are–and are only too willing to help in spreading the word. If I was ‘iffy’ about sending to someone–I sent it anyway–nothing to lose!!
Jeannette, the format of information for this THUNDERCLAP and the video clip–excellent layout and explanation of ‘the situation’ we are fighting for our very lives !!
Here we gooooo—let’s give an earth-shattering thunderous roar with THUNDERCLAP!!
Supported and shared!
Additional red flags??
The IOM webpage for Committee meeting 1 states, “As with any information sent to inform the committee, all written comments will be placed in a Public Access File in compliance with Section 15 of the Federal Advisory Committee Act… All written comments will be included in the Public Access File created for the study, and should not include any personal medical information.” *
The IOM webpage for Committee meeting 3 states, “As with any information sent to inform the committee, all written comments will be placed in a Public Access File in compliance with Section 15 of the Federal Advisory Committee Act… All written comments will be included in the Public Access File created for the study.”**
*http://iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome/2014-JAN-27.aspx
**http://iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome/2014-MAY-05.aspx
Please note that the above quotes differ according to the phrase “…and should not include any personal medical information.” Did the use of this phrase (this stipulation) violate FACA?
Additionally, IOM (automatic – automated?) email responses to submitted information first stated, “As with any information sent to inform the committee, it will be placed in our Public Access File in compliance with Section 15 of the Federal Advisory Committee Act.” –
But have since been changed to, “As with any substantive information sent to inform the committee, your comments will be placed in our Public Access File in compliance with Section 15 of the Federal Advisory Committee Act.”
Does the above change (from “any information” to “any substantive information”) violate FACA?
How does IOM define “substantive information”? Who determines what is / is not substantive information? Who authorized this change and why?
Ah, yes, another ‘reasoned’ move in this game of ‘check’ and ‘mate.’ A method to the(ir) madness!
Good eye on that, Ren.
Comments in opposition to the IOM contract, i.e. not ‘substantive,’ will not make the grade for ‘Public Access File’–ohhh, perhaps a few will be allowed/let in to make it look ‘right.’ Any comments that do make the grade for the Public Access File–will be hand-picked comments. Now what is that all about? A method to the(ir) madness!
This smells like more of the set-up and BIAS with the pre-determined outcome for defining ME/CFS as coming from the HHS, CDC, NIH — filtering down and contracted to the IOM.
As we know–Public Access File–in this instance with the IOM contract to define ME/CFS–equals, not as one would expect, i.e. an immediate link with ‘access’ to the information at the click of a mouse–but, conversely, the ‘public access’ is only gained by ordering and paying money for a cd that houses/holds ‘said’ information. Just how ‘accessible’ and ‘public’ is that?
A method to the(ir) madness!
Please compare the following with Ess’ observations that IOM demands payment for censored public comment, which IOM distributes through what was even five years ago considered near-relic/obsolete means: (http://www.businessinsider.com/21-things-that-became-obsolete-this-decade-2009-12?op=1):
On this National Academies webpage*, the National Academic Press (NAP) boasts that its catalog of over 4000 books are available online free of charge, with the mission “to disseminate the institutions’ content as widely as possible…NAP began offering free content online in 1994… ‘it is now financially viable to put this content out to the entire world for free.. to make a positive impact by more effectively sharing our knowledge and analyses’… this [free PDFs] …will enhance dissemination of PDF reports from about 700,000 downloads per year to more than 3 million by 2013…”
*http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=06022011
Additionally, a Google search of “IOM social media” yields a broken IOM-social-media-info link (www.iom.int ?) which states, “At IOM, social media is used to get visibility for our work by reaching the widest possible audience…”
And a functioning IOM social-media webpage** boasts that IOM uses a variety of social media “to inform…our many stakeholders… Our goal is to share ideas and information with as many individuals as possible…”
**http://www.iom.edu/About-IOM/Social-Media.aspx
The IOM Facebook page, however, seems to have only one reference to ME/CFS – the Jan 27 committee meeting, announced on Jan 27. Why no advance notice or save-the-date as with other events? And the IOM Google page*** which, while packed full, seems to have no mention of ME/CFS — and thus no public comment on ME/CFS?
***https://plus.google.com/116227259322807236760/posts
(And because it can probably never be said enough – thank you to Jeannette (and to all) who are fighting against the abuse of individuals with ME/CFS.)
And thank you, Ren! Nicely done again with the research on the IOM social media information about ME/CFS–hidden, obscured, broken, deleted, ‘cherry picked,’ — and then if you can find the ‘Public Access’–you can go to the trouble of ordering the censored comments and pay for the cd–and then that can be posted in the snail mail to you. How hard they are working at this de-struct—each and every step of the way. A twisted mindset–a very ‘sick’ political organization/s.
Just what don’t they want the public to know?? Just WHAT truths about ME/CFS are they hiding?? The truths are coming out!!! And these are rhetorical questions.
Come on–let’s get to the truth and make this right! YOU more than owe it to us–and all those along with us that are being ‘plagued’ with ME/CFS as we speak!
Gladiators in pj’s . . . 🙂 (top upper right) Yes, we are! Love it!!!
Thank you to Jeannette and everyone else with your information.
I will go to Thunderclap and join in the loud, indignant responses to the IOM.
Just another word on all capital letters, in email etiquette, it’s a no-no. It is
considered “yelling,” so, too, it would seem in blogs.
It’s so great that people are signing on for THUNDERCLAP!! As people are well intentioned and may just put things aside to attend to ‘later’–I’ve just sent out reminder ‘pleas’ to my peeps saying–If this works for you–I’d really appreciate your support in signing up to THUNDERCLAP. This is something that would be very helpful to us–my family and me–and to the greater ME/CFS community at large. It is very difficult for people to put campaigns like this together as they are so very sick with ME/CFS themselves!!
I also just said to a close relative–in this regard–can you imagine being as sick as you are with cancer–having to go out and advocate for treatment to get you better? That is where we persons with ME/CFS find ourselves–and this close relative with cancer is more functional than I am — and has treatment available to bring his health back to wellness with the ability to live a full and active life.
The sooner people sign on–the more social media reach we have. Please sign up for THUNDERCLAP before May 5th so that our THUNDEROUS ROAR may be heard. Grazie!
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Hello Jeannette,
Pardon my brain fog too. I just went on thunderclap and hit facebook support. Then I also posted the link on My facebook page and asked folks to go to link and press fabebook support. mostly no one know what I’m going through but I also personally messaged about 60 friends and family, asking them to hit support on facebook thunderclap. I am a newly diagnosed patient/person who had Fibromyalgia for over8 years. Been in an acute phase of ME since having 3 viruses in a row.
QUESTION: Are all the people who supported on my behalf going to get messages or videos? I really wouldn’t want that. Again please pardon my lack of concentration. I tried to read thae whole explanation several times.
Thank You
Sarika
i am really sorry that ME has gotten a hold of you. as if having fibromyalgia is not enough 😦
thank you so much! i really appreciate your efforts! personal messages really work best when asking for this kind of support.
when ppl sign up, they can opt out of receiving messages from me and Thunderclap. I would recommend that latter in any event. I will only send one more message and it will be to thank people for their support and let them know what the final tally is.
Jeanette, thanks for your fabulous amount of work and support for ME! I just did the Facebook thunderclap with comments but am not sure it actually made it to any of my friends’ newsfeeds.
I’d like to suggest that you make the graphic, or another one bold and simple to symbolize our plight as a profile pic for FB, twitter, whatever. Remember the vivid gay marriage rights one? Let’s do that!!!
Awesome work with THUNDERCLAP, Jeannette!! Congratulations on this accomplishment!! Thank you so very much for setting up this platform for us to participate in to have our voices heard.