On Monday, January 27, 2014, David Tuller published, on Buzzfeed, a well-researched and factual article—”How “Chronic Fatigue Syndrome” Obscures A Serious Illness“—on ME/CFS and the government’s efforts to redefine the disease. As of right now, 78,331 people have viewed the article. Also, almost 8,000 people “liked” the article directly from the Buzzfeed site by using the Facebook like button.
Some time last night or this morning, the Facebook share button for this article was disabled by Facebook and Facebook blocked any direct sharing of the piece from the Buzzfeed site. The error message I (and others) received from Facebook when I tried to share the article to confirm the reports of the blocking said, “Your message couldn’t be sent because it includes content that other people on Facebook have reported as abusive.”
Facebook also deleted all postings of this article shared directly from the Buzzfeed website, which means that the many Facebook conversations about the piece are lost as well.
Everybody who will read the article will agree that is has no content that even comes close to being abusive. It is an entirely professional piece written by an acclaimed journalist, David Tuller, who has been writing for the New York Times and other reputable publications.
I am putting this out there because I am completely flabbergasted by how anybody could have found this article abusive and would have felt the need to shut it down. This is a slap in the face of the patient community and, frankly, it’s unacceptable to abuse Facebook policies in that manner.
Copying and pasting of the article’s URL on Facebook is still possible, but it is important to note that Buzzfeed pays close attention to the number of Facebook shares from its site (as opposed to copying and pasting of the URL, which Buzzfeed has no way of keeping track of) in its determination of whether to feature an article more prominently and also of whether to cover an issue again in the future, something that ME/CFS needs desperately. So, whoever is responsible for getting the article in essence censored by Facebook has done a tremendous disservice to the patient community. It makes one wonder about the person’s or persons’ agenda.
This is unacceptable on the part of Facebook. I wrote to them and complained. Abusive? Seriously? Why? Because there is controversy surrounding this? Would love to know who did this. Clearly there is an agenda here. Trying to silence people only goads them to speak louder and with more urgency.
Nothing abusive or offensive about Tuller’s factual article at all; very well written and informative. Clearly, (unless it is a ‘technical glitch’) this is MORE sabotage and monkey-business going on–and this needs to be EXPOSED!! Thank you, Jeannette.
It would be great to tweet and retweet this blog about it, and maybe post it to reddit, and create an even greater amount of attention to the article than it would have received if it hadn’t got removed from FB in the first place.
Ppl have been tweeting. Both David’s article and this blog. Let’s keep it going, folks!
PS: if you tweet, do so from the Buzzfeed site!
I have! It is an important and well written article which needs circulation!
FYI: Did you know Jeanette, that this blog is also reported as malware by Webroot SecureAnywhere?
Eddy, do you mean Buzzfeed in general or David’s article or my blog? Thanks!
Your blog, I’m looking why…
That’s not good. Let me know what you find out, Eddy. Thank you!
Virus Total shows 0/51 for malware,trojans or viruses.
2014-02-04 12:28:37 UTC
Webroot was a false positive.
That’s so strange… I also shared this article, have to check if it has been deleted from my feed. It must be some form of sabotage!
The blocking started before Cort joined the conversation, Wildaisy Fl. Not that I’m defending his position, you understand! 🙂
Hey, Jeanette, I have just come to the Tuller article, which is excellent. I managed to comment via FB thread, though have not yet tried to share article on my TL… I just wanted to say I am glad you are improving somewhat on Ampligen, it is a drug I would most certainly try if available in UK. I note your family lives in Menlo Park, I know the Bay Area from early-mid 90s, my brother was at Stanford then, and I spent considerable time living with him. I became friends with several Stanford med students back then and the awareness of actual ME was non-existent…I am Scottish and have been ill since 1982, diagnosed early 1984 with ME, post-Coxsackie, by consultant neurologist. I fictionalised the illness in my novel, The State of Me (published 2008). I have said a lot more about the CFS labelling on FB thread, so I won’t repeat here! Take good care, NASIM
I believe I own that book. It’s in one of the still unpacked boxes on the garage 😉
Ah, good to know you have the novel! I have now tried to share the Tuller article on FB, but no joy, what a bizarre state of affairs…
Comments on the recent NPR CFS article have been memory-holed as well. See posts #7 and #20 on the following PR thread. Post #7 was captured before deletion and post #20 was reposted on PR by its author. Another individual said their post was deleted as well. Who knows how many were lost. Who knows why National Public Radio is motivated to censor/delete comments which criticize national public policy?
Do we know that NPR deleted and censored the comments itself? I’m not very well informed on the working of web pages and comments. How can we tell?
Do Facebook just immediately block an article when it is reported as offensive without even checking if it could be construed that way? It’s unacceptable that someone reported this excellent article as offensive as it is but why do Facebook just accept this without checking If the article is indeed offensive which this article clearly isn’t? Surely more than one person had to report it as offensive for Facebook act? I am astounded this has happened.
We need to start a petition – perhaps with Buzzfeed – on Change.org to restore all postings and repostings of the article on FB and demand that our conversation be allowed to continue on the site. The article was not abusive, but factual, with supporting comments that might have have had an emotional tenor. How unusual is that?
My post was deleted from my personal page. It won’t let me repost. Never had that happen before. Would be interesting to know what happened.
When I tried to post a comment–it DIDN’T post (a couple of days ago) and Tuller’s article has also been removed from my personal page–this is a BIG campaign AGAINST us.
Yes. When I checked my facebook pages (I have two facebook accounts), My posts were also gone. Not only that, but I blogged about the article on wordpress. Even though I hit “publish”, it was not on my public blog! I tried to publish it three times to no avail. It was when I took off my tag “David Tuller” that I was finally able to publish it! Now isn’t that interesting?
I don’t see how blocking an excellent article about ME serves anyone who is a patient with this disease. And maybe roasting individual patients (no matter what one thinks of their politics,) in the comments section is a bad idea and doesn’t really serve anyone either.
I don’t think anyone was roasted. People were having civil discussions.
Hope Eddy will find out.
meanwhile let’s continue to share and disseminate it in all possible manners. As someone before said, these tactics will only come back as a boomerang to the person or institution involved. The law of cause and effect is irrevocable, our determination just increasing by such actions, isn’t it?
I’m finding that people are ridiculing Buzzfeed as a legitimate source for information. Someone on Facebook suggested this:
“When you choose to hide an article from your newsfeed on facebook, you get to select a radio button that indicates why you want to hide it. One of those buttons is “Because this is offensive to me”, and users have been selecting that for buzzfeed articles because facebook recently changed their feed algorithm so that those articles bubble to the top more often. It’s a kneejerk reaction to Buzzfeed articles.”
It’d be nice if this story were picked up by a traditionally respected news outlet.
Buzzfeed has a huge reach. I feel grateful to them for covering us.
But regardless of that, the censorship is what’s the issue here.
I agree with you, Jeannette :-). I’m just reporting on the responses my husband and I have been getting from some Facebook friends (none of whom are involved with or knowledgable about ME/CFS) on our posts about Facebook’s removal of the Tuller BuzzFeed article.
Does anyone know if there’s a way we can all individually alert Facebook to the fact that this article does not legitimately contain abusive content and that they should manually reinstate it?
Yes, I hear you. It’s good to get people’s take on what might be going on.
There is a way to complain, but I am not able to look it up right now. Since I got the error message, I was able to do it through the link provided.
If anybody knows, could you pls put instructions up here.
I complained using the “report a problem” button under the cog icon in the top right-hand corner. Technically that’s for bug reports but that was the option that was closest to accurate. Folks could attempt to share the link instead if there’s better a way to complain that shows up during that process. I hope many do as volume is oftentimes the key in situations in this.
This is odd, my ‘share’ of the article is off of my page…creepy!! Will cut and paste it.
It takes more than one person to block a post on facebook. It takes several people on each person’s wall. Probably the same friends of everyone. Except me, as I removed most of my friends. The only friends that I have as friends are the ones who refused to be bullied and I have not had anything blocked in the two years since my friends list has been cleaned out.
This reminds me of an incident a while back. There was a site on FB that was extremely offensive to ME patients. Many ppl complained to FB about it. FB replied basically saying that it wasn’t offensive enough to be shut down. It takes a lot for FB to censor content.
A while ago on Twitter there were posts put on Stephen Fry’s Twitter feed about ME and about Lyme- mysteriously many disappeared (and they were not deleted by those who posted them!)
I can confirm that; all 4 of my tweets on ME and Lyme, on Stephen Fry’s thread, disappeared and I had not deleted them. I saw that about 50 others had somehow disappeared too.
I can confirm this
you can pin the article from the buzzfeed site to pininterest…i just did that and it is still there so far
It seems to me that perhaps someone in the government, maybe connected with HHS or some entity related, that may be sabotaging all the efforts to support and promote the ME banner on FB. Serendipitycat mentioned the word, “sabotage.” Now Twitter? This is indeed scary. I have noticed that many of my postings on my FB page have disappeared (not deleted by me), and they were perfectly harmless. Last month, I received a posting from Kim Komando re posts disappearing from our FB pages. Here is the link: http://youtu.be/l9ZqXlHl65g FB is deleting individual posts in order to promote more advertising on FB. This may or may not be part of the reason for disappearing posts; however, since there was a “malware” notice, it may not be. Who knows? A big mystery. I hope somebody (who has more expertise on the internet than I do), will get to the bottom of this fiasco.
sunshinebright…..” u are so right on “……same thing for me…..& Yes..”Sabotage” ! …..to put it mildly. I so hope that this will give ” All ” a clue about how ‘deep & ruthless’ this so-called subject is about…………clue….( & I am tired of keeping my mouth shut …about the ‘ Real Story ‘ ) like ” Where DID, ‘ these biological ‘ bacteria & viruses came from ” ? ……….hum………??……” I’m Pissed and I’m NOT gonna Take IT any More “..( in/Peace 🙂
Have the WATERGATE reporters retired ??? This is BIG!!! AND it MUST BE EXPOSED to the CORE!!
Ess…..” I don’t know….maybe they have all died from me/cfs…by now ” ?…(sorry, no disrespect guys ) hillary johnson agreed w/ me some time ago….can we say ” Civil Action Law suit ” ? (u did not hear this jeannette….not to over whelm u…more 🙂 x
AMEN…..Ess !! ….” It MUST be Exposed….to the CORE ….if not for our self’s…AT LEAST for ‘Our’ Children ” ………..Does it START w/ FB ??
yes they’ve retired from investigative journalism
Never before have so many people woken up to the possibilty that bacterial infections (stealth pathogens) are involved in a wide range of neurological diseases. The viruses are in the mix too, but it seems that the main causes of chronic infection and debility are the l-forms and spores of certain vector-borne bacteria, especially borrelia. Could it be that those at the very top of the public health system are not ready to admit this, even though they must have been aware of how widespread the incidence was since the early 1990s.
ps I copy-pasted the link to my timeline a couple of days ago and that post has been removed. You say un your article that it’s still possible to share that way, but it doesn’t seem to be.
Ugh. I had no idea. That’s a whole new twist.
Did you know that you can leave a feedback “thumbs up vote” for the article on the page itself? There is a line of ranking buttons from <3, OMG through to EW, and a broken heart at the bottom of the article and just above the comments areas. As I write this there are only 69 ❤ 's, 17 WIN, 1 FAIL and 1 EW. By adding our votes of support via those buttons maybe we can let BuzzFeed know just how valuable we feel the article is.
Thanks for letting us know! I didn’t see that.
Hi everyone, it took a while, but I finally found a method to appeal to Facebook. Use the following link to fill out Facebook’s “Blocked from Adding Content” form: https://www.facebook.com/help/contact/244560538958131
On the form, I provided the link to David Tuller’s article and then I submitted the following appeal:
Someone has unjustifiably reported this article as abusive. It is not. It is the opposite. It is a public service to bring awareness and help for a suffering group of people – those of us with ME/CFS.
Your community standards regarding hate speech say, “While we encourage you to challenge ideas, institutions, events, and practices, we do not permit individuals or groups to attack others based on their race, ethnicity, national origin, religion, sex, gender, sexual orientation, disability or medical condition.”
Not only does this article satisfy and uphold your own community standards, but ironically, the person(s) who reported this article as abusive are the ones who have violated your community standards and are practicing hate speech/action by succeeding in silencing the voices of people with a disabling medical condition.
This is censorship, and it is unacceptable.
Our (people with ME/CFS) ability to be seen or heard is inherently difficult due to our illness that keeps us hidden away, suffering silently in dark rooms. Facebook’s decision to block this article only silences us further.
Please restore the sharing of this important article. Many people’s lives and well-being depend on it.
This is awesome!!!! Thank you so much. Everybody who has the energy, please follow these instructions. And please make a note of when you did this. Better yet, take a screen shot. Thanks, everybody!
Good idea about the screen shot, Jeannette. I did this and saved it on my computer by copying the screen shot into a Word file. The screen shot shows the time and date it was sent in the bottom corner.
Facebook makes it very easy to report something as abusive, but not so easy for someone to appeal it. Whoever is reporting the article with the motivation to silence us is cowardly and probably knows how difficult it is to get reinstated by Facebook. It’s a hit and run job.
May I share your sample letter on FB for those who are to sick to write something themselves? Happy to give you credit!!!
Yes, I should have said that in my original post. My letter is meant as a form letter that anyone can use as a starting point for their own, or copy it word for word.
But, hopefully we won’t need it anymore. That is great news that Facebook is allowing us to share the article again. And a special thank you to whoever tried to shut down our awareness campaign. You have only fired us up even more.
Good work! Thank you. 🙂
I know that people can object to something on FB, but does anyone know if only one person can cause something like this to happen or does it have to be a certain number of people?
Jeannette-as the owner of this blog you need to contact WordPress and find out what is going on with your blog being defined as Malware.
i know. and i will. just a bit maxed out right now.
PS-I just clicked on your link to the article 3 times and it came up and then went blank. Is anyone else having this issue?
It seems to take a second or two to load–then the article comes up–just tried it again now.
BUT–later in trying to POST it to FACEBOOK–does NOT allow that!!
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I was able to click on the recommended link and it now posted on my timeline
Someone got the correct message through
still not working for me 😦
2/2/14, 5:29 pm Pacific: Both “sharing” and “liking” on Facebook directly from Buzzfeed is working again.
I just got back home from D.C. this weekend and I have been trying to rest up from all the activity last week. Shocked to read about the release of Dr. Montoya’s video that he had asked people not to publish and now checking your blog tonight and I see this next debacle. I swear the story around this illness seems more like a scene from the “Twilight Zone” than anything you would expect to see in real life. If you get more information to back up the “alleged” censorship of this article and/or your blog let me know and I may have some contacts in D.C. who would be very interested into looking into this further.
10:20 PST. I shared from Buzzfeed to my Timeline and it worked. So far. Thank you for you blog and this information !
I was unable to e-mail the article via BuzzFeed to my list of contacts. An error message was received when I pressed send. My detailed message to friends and family, along with my long list of e-mail addresses, disappeared from the screen and the only message that remained behind was the BuzzFeed generated error message.
(Attempt to e-mail Dave Tuller’s article (“How “Chronic Fatigue Syndrome” Obscures A Serious Illness”) via BuzzFeed’s e-mail link on 2/3/2014 at 1:45 a.m. P.S.T. resulted in an error message appearing on my computer screen stating there was a problem with e-mailing this article. I have contacted BuzzFeed directly about this problem, but I thought it might be helpful for you and Dave to also have this information.)
I read that article and really couldn’t see anything in it that would merit it being censored like it is being on Facebook. How strange!
Can’t undersdtand why my post has not gone through at about 12.30 pm
here it is: Never before have so many people woken up to the possibility that bacterial infections (stealth pathogens) are involved in a wide range of neurological diseases. The viruses are in the mix too, but it seems that the main causes of chronic infection and debility are the l-forms and spores of certain vector-borne bacteria, especially borrelia. Could it be that those at the very top of the public health system are not ready to admit this, even though they must have been aware of how widespread the incidence was since the early 1990s.
Wellllllllll—‘politics’ has done and is doing its best to keep all these HORRID GLOBAL HEALTH secrets from becoming PUBLIC. HOWEVER, science is catching up–and it IS the RESPONSIBLE thing to do–to tell the TRUTH–and allow the REAL SCIENCE to get to the AUTHENTIC answers PRONTO–and FIX this health NIGHTMARE. And the WIDESPREAD incidence in the 1990s–we are now 30 years later–AND that incidence CONTINUES TO SPREAD — and spread GLOBALLY. Numbers that are given–are NOT taking into account NEW and spreading numbers!! Science and politics are a BAD mix!! HONESTY and INTEGRITY are essential. If this HORRID disease cycle isn’t STOPPED NOW–it is going to hurt, harm, and devastate so many more lives for years to come 😦 😦 😦
Perhaps the (neurological) diseases of MS, Parkinson’s, ME/CFS, Spinal Cerebellar Degeneration, Autism, Alzheimer’s, GWI, Lyme, etc. are all in the same pot–and present as one or the other in terms of the idividual . . . just a little speculation.
My original post of the article is back up! Anybody else’s?
WHY the FACEBOOK SHUTDOWN??
It would seem that the frank and factually informative interview of Jeannette Burmeister by David Tuller is NOT in keeping with the ‘hush-hush’ ‘keep this ME/CFS disease in the closet’ and label it ‘nutsville’ ploys of those that want it/us to remain hidden and QUIET—for this article is quite obviously NOT abusive. Quite the contrary–the article is informative and educational–describes the REAL story of ME/CFS affecting real lives.
Perhaps it is a little too threatening to have this REAL information about ME/CFS prancing out there and and being shared so widely PUBLIC–gaining public attention and educating the public–to have such a REAL picture of a REAL person and her family and what HORRIFIC DEVASTATION this REAL biological disease of ME/CFS causes.
Thank you again, Jeannette and David Tuller for going public with a MOST important TRUE story about ME/CFS.
I shared the article a few days ago and it disappeared from my newsfeed. I was just able to share again a few minutes ago. I hope it will stay on my feed this time! It is unacceptable that FB would take action to remove this excellent article!
HOTMAIL e-account — temporarily blocked due to ‘Microsoft noticing some unusual activity.’ Sooo, I hadn’t checked my hotmail account for a few days–and this msg. greeted me this evening as I was about to send an e-mail–and it was BLOCKED. The ‘unusual activity’ referred to is ALL in regard to ME/CFS reTWEETS and FB repostings. And the beat goes on . . .