I’m going public with an incident that exposes the dirty underbelly of the ME/CFS community. It’s not the first time I’ve been personally targeted, and surely won’t be the last. But bullying and defamation directed at me, or any other ME/CFS advocate, affects all of us and our collective chances of success. I call bullshit, and it’s time for it to stop.
The inciting incident is the release by NIH of emails I sent them about P2P. Unlike most other advocates who write to NIH, my personal information was not redacted (I’m dealing with that another way, more to come). One of my emails was seized upon by a few fellow advocates, and was used to make false accusations against my integrity and the integrity of my work.
The original email was this one, sent to Dr. Susan Maier on March 21, 2013:
Thank you for this information. I published a blog post about the Workshop today: http://occupyme.net/?p=873
If you happen to find any errors in what I wrote, please do let me know. I think it is critical that advocates have accurate information from the very start in order to prevent some of the misunderstandings that have plagued other meetings and initiatives.
I sent Dr. Maier that email as a courtesy after publishing my first post on P2P, because I had cited an email from her as one of the sources for the article. I’ve done this with other people I’ve interviewed, and had journalists extend the same courtesy to me. The reason I emailed Dr. Maier after publishing the post was to ensure that my work was independent of any outside influences. I gladly make corrections and updates to my posts after publication. However, I did not receive a response from Dr. Maier.
But this innocuous email became grist for the defamation mill earlier this month. Here are the choicest tidbits:
JSpotila sends blogpost to SMaier of NIH for approval
No, I offered to make corrections if she found errors. That is a very different request.
The stakeholder solicitor in action! If you think about it, they are paying her, they paid for her expenses to travel and they are covering all expenses according to that FOIA!
This is a lie. I have never taken a dime from NIH.
They are even helping her with her blog posts to make sure she is correct and probably no spelling errors, grammar , etc the stuff the rest of us patients do when we write anything because of what those MRI’s show!
This is a lie. I taught legal writing before I got sick, and I use spellcheck.
Her blog is a farce and she is still in the business of recruiting patients by giving the impression she is on their side.
This is a lie. I am on the side of patients. That’s the only reason this blog exists.
Isn’t this interesting. Instead of writing her message to J Spotila, S Maier sent her email to herself and then sent a blind copy of J Spotila.
This is a lie. I did not receive a reply from Dr. Maier, bcc or otherwise.
These lies are bullying and defamation. They attack the integrity of my work on P2P and my personal integrity. So why am I exposing it here? Why not just sue for defamation and be done with it?
Because this behavior has a huge negative impact on all of our advocacy efforts, regardless of our positions on the issues.
First, slander not only bullies the target but it intimidates other people. I have had many patients tell me that they are not involved in advocacy, or have pulled out, because of the bullying, harassment, and negative behavior. We saw this in the witch hunt conducted by XMRV believers, and then the witch hunt conducted by XMRV unbelievers as that science unraveled. We saw it in the IOM protest controversy last year. The effect of this behavior is to frighten and intimidate advocates into not speaking, and we all lose as a result. How many voices have been preemptively silenced by this fear? How many patients think: it’s not worth it, I’m too sick? There are so few of us to begin with, and this kind of behavior reduces our numbers. That hurts all of us.
Second, this kind of behavior confirms the stereotype that we are all crazy. Remember the allegation that there is an “armed wing of the ME brigade“? Remember the alleged death threats against Dr. Myra McClure? There are people at NIH, in the press, and in the research community who think we are all nuts. The leap from “let me know if I made errors” to “she’s on the NIH payroll and you can’t believe a word she says” is Grand Canyon-huge. You cannot read anything that I have written about P2P and think that I support what NIH is doing. So if a person is predisposed to think we are crazy, and then witnesses baseless slander from one advocate against another, that person is likely to draw the conclusion that we’re ALL crazy.
Third, infighting weakens us. I’m not talking about disagreements over strategy or approach. I’m talking about the fracturing of a community along battle lines that have no basis in fact. Who’s the real enemy here? Me, with my advocating against P2P and its approach for a year? Or NIH, for its insistence that this disease is basically just fatigue and easily defined by take-your-pick-definitions? Throwing stones at me does nothing to fight NIH. In fact, it makes it easier for NIH to win.
I am always willing to discuss the merits of my work. I am easily reachable through this blog. If you have a concern or question about something I have said, you could just ask me. It’s not hard. But I guess it’s easier and more fun to disparage my character and my work. Maybe it feels easier to shoot arrows at a fellow advocate instead of at the real target.
I will say what others are afraid to: This is bullshit. This hurts all of us. This has to stop.
Jennie.
Thank you for the courage to call this out for what it is – a destructive, inward redirection of scarce community energy that hurts us all. We can not afford it.
The worse my symptoms get, the more likely I am to lash out at the closest available target. It’s hard to realize this and curtail it before I hurt someone. (Like being hypoxic, and because you’re impaired, failing to realize that you’re short of oxygen.) It’s an undeniable feature of this illness, at least for me, and the germ of truth that gets us grossly overgeneralized as squirrel-sized nutbags. Add to that, our government sometimes gives us legitimate reasons to be paranoid. No excuse, but PERFECT conditions for infighting. Tell you what, if you’re sitting around obsessing on who the government mole is, I confess, it’s me. I have the perfect resume for it, so it MUST be me. So please vilify me, haters, and adjust your tinfoil hats every time I pass you by. Never mind that the government response to us is so disjointedly bad, that no coherent conspiracy could ever have devised it.
Joe, this is not about Jennie’s post, since others are far better at both reading and commenting than I am capable of doing anymore. Your first two sentences really struck me, since I have found myself doing that, sometimes, which is not like me. My symptoms are SO much worse than they were even a year ago (I’ve had it for almost 3 decades). I’m glad (well, not glad) that it’s not just me. Thank you.
Jennie: thank you so much for writing this topic blog! I rely on you and a few others for accurate information and explanations in what is going on bc I don’t have the ability to to comprehend and write in a timely manner that HHS gives us. You do an amazing or shall I say above amazing job. The example of an email that was pulled for FOIA/ I see nothing wrong in what u did..it was courtesy. patients need to stick together and respect each other. All your blogs are dedicated to supporting patient against the wrong doings of the gov’t in a factual basis! Keep up the good work! At the same time, pls make sure your health is a priority! We need you!
Jenny,
Thank you! The deformation is very destructive and hurtful. I’m sorry you were the target. There have been false allegations directed at me personally and towards PANDORA Org. We were accused of being paid by NIH – not true. We have never taken a penny from any government agency.
We were accused of secretly planning with the NIH in the creation of the IOM definition study – not true. I was at the IOM the day the community found out about the IOM being tasked. I was there attending a workshop for medical university deans trying to get ME into curriculum. I didn’t know about the ME task until I turned my phone back on and had 20 messages. Instead of attending the workshop the next day I sought out someone to ask questions about the ME IOM study. It would have been silly not to ask questions, especially if I was there in person.
The bullying fragments and weakens our community. I’m with you – it’s bull crap and it must stop.
Thank you, Jennie.
Well done Jennie.
Thanks for this post and I am sorry you are receiving horrible comments from our community.
Your voice matters a lot and i bet governments read every bit of what you write.
Each one of our voice matters.
Jennie,
I wish that people would realize that it’s stupid to bite the hand that feeds you. The work you are doing on our behalf is invaluable! I, for one, appreciate it very, very much. Thank you.
Dear Jennie
Im fairly new to all this and I live on the other side of the pond to you (Ireland). My young son aged 14 has ME now for over two years and it has incomprehensibly changed his life completely and utterly. I am forever grateful for people like you – strong, brave advocates who will not give up and who will expose the dreadful, psychotic, evil, reckless, damaging behaviour of some people within the medical community towards those with ME. I’m only in the ha’penny stakes when it comes to knowledge about the appalling treatment of people with ME worldwide and the even more disgusting treatment of those who dare to question their status quo. My boy has lost over two years of his life and its people like you that give me hope that he can some day begin to recover or, at the very least, he wont have to continuously justify why he feels so ill every time he has to see another doctor. Thank you
This is a very powerful post. Its right on point of why it is so difficult to advance environmental public health policy. People some times don’t realize how their gossip and backstabbing helps to shoot their own messengers; and that they are harming themselves and countless others via causing their message to become subject to doubt by decision makers.
I’m new to this blog. It took me one minute of reading to grasp that your goal is to change public health policy so that mainstream physicians are trained how to recognize, diagnose and treat CFS. I come to this subject via the mold issue. I’ve been a victim of “advocates for the sick”. In that community, too, the gossip caused the scientific fraud that it is proven mycotoxins in water damaged buildings can never reach a level to harm, to continue for now years in policy and in courts.
Those who I set out to help, aided to promote that I was a malicious liar when exposing fraud involving the federal government and the courts. Watch your back!
People who cast doubt that you are telling the truth of what occurred with the committee findings or any other subject, leave you vulnerable to horrific attack while aiding to discredit your words. Their gossip opens the door for those who naysay that CFS public health policy must change with the aid of the federal government, to be able to go after you for exposing fraud.
The gossiping ninnies will ruin your life and that of your family for trying to help them and many others — while causing flawed public health policies to remain status quo.
Speaking from the voice of experience, I would strongly suggest in the future that you name names of gossiping ninnies to nip the reckless acts in the bud, before it does irreparable harm to you, your family and to the advancement of public health policy.
oh no, this is absolutely awful! 🙁 i had no idea this was going on, am a bit shocked to hear about it, to be honest. i’m so so sorry you’re having to go through this on top of everything else, what a nightmare…
and yes, this hurts all of us. this must stop.
please let us know if there’s anything we can do to help.
heaps of warm hugs for courage, patience and strength <3
Indeed the infighting must stop! Mine is a small voice, I am bedfast/housebound and too ill to be an effective advocate, many with ME/CFS are in my position. We must rely on those of you who do have the energy and the brain function and the knowledge to advocate for us. I am appalled that ANY person with this horrible disease would attack another person who shares this same disease or attack one who is healthy but understands our illness and tries to help us! There is NO excuse for such behavior! Period! I cannot state that strongly enough! It is disgusting! It is disturbing! We either stand together and treat each other with the utmost respect or we will find ourselves on the receiving end of that same disrespect flung right back at us by those who would label us as crazy.
Thank you, Jenny. I am so grateful for everything you do.
I agree. The bullying, slander, and ganging up has got to stop. The number one reason I can think of is…. some of the best and brightest advocates are not getting any younger! I’m 35 and younger than most,so it gets me thinking,…. Who’s going to carry the torch when these guys are gone?
When I first discovered co-cure and started networking online a few years ago, I was so excited to find the folks who were really making a difference in activism for ME. I really looked up to everyone and considered you my mentors. But as I got more involved, I started being afraid that since I’m new and not up to date regarding which person or group is currently blackballed … I stayed quiet. I felt like I better not write a letter or a blog or start a petition or do anything, because I would likely get some aspect wrong and come under fire. And I know my limits. I don’t have the energy for that.
Right now, this in fighting is rapidly turning away people who would like to lend a hand. So there’s two options. The most outspoken bullies can continue to do the majority of the work themselves, and few people outside your little cabal will care or be capable of keeping up with who’s on your shit list…
Or you can grow up and stop spending shameful amounts of energy on gossip, and actually start attracting a wide base of new patients to advocacy. There are 1 million patients with ME in the US alone. Do you ever wonder why more aren’t signing petitions and joining activism groups and pages on Facebook? At most I’ve seen a few thousand subscribers. We are failing miserably at using the _one_ real asset we have, our huge numbers. We could raise money for that PR campaign overnight if we spent half as much time networking and attracting new patients to the cause as we do putting others down.
The new advocates can’t keep up with who to hate this week, and keep up with all the complicated research jargon and politics. We can choose what is most important to teach them.
This is EXACTLY what I have heard from others. New advocates feel like they’re jumping into a shark tank, and one wrong move is like blood in the water. We can’t allow this climate to continue.
Part of the reason I feel strongly about this is that I used to run an advocacy group years ago, and I learned a lot through trial and error. I made a lot of mistakes. I did not spread the work equitably, so I ended up doing the majority of the work, getting the majority of the praise, and ultimately getting the majority of the criticism when things weren’t working. I learned that you have to spread the work out and be more trusting of the people who care about the cause, even if maybe they don’t know as much of the details or aren’t as invested. They are willing to work, so put them to work! There are at thousands, if not hundreds of thousands of patients who would be willing to go to work for us, if we could organize some kind of leadership that was worth following. Right now, there’s nobody to really follow that is seriously recruiting, that is actually offering opportunities that are attractive to would be patient activists.
I’m an idea person. I am not much for physical anything. But I have a ton of ideas that I have tried to bring up in various groups of projects we could be organizing, but I felt like people would rather gossip than talk about the logistics.
One idea, that I think could save us, is to target a campaign at getting established feminist groups interested in helping with the physical work we just can’t do for ourselves. If we can convince those established feminist websites, magazines, and FB groups that ME is their issue too, You could get literally millions of women interested in this. They are the most likely non-disabled people to take up our cause, imho. And I have seen them in action spreading information with lightning speed, doing demonstrations, attracting celebrities and politicians to take up the cause. They have social networks and lots of young college age women looking to volunteer for a good cause with boots on the ground. I think it is a matter of letting them know that “hysteria” as we knew it in 1880 is alive in the medical world today, and it is especially clear in the treatment of ME patients. Feminist groups could make all our articles go viral in a heartbeat, could help legitimize that the public (especially women) are in danger of getting sick if ME is not funded and treated. They could make signs and show up in person at demonstrations and say “We don’t want to wake up sick with ME tomorrow, so FIX THIS.”
Anyway, I digress. I am homebound and mostly bedbound and can barely keep up with email… but I have ideas. I bet thousands of other potential advocates have ideas too and are just afraid to stick their necks out. Let’s change that.
I’ve so thought the same thing about reaching out to feminist groups. While reproductive rights are indeed under serious threat, it’s not the only women’s health issue in which women are not getting the health care we desperately need and deserve. I had a crazy idea last year about trying to contact the women in an article I read in Elle that was something like “the most powerful women in America you don’t know” and trying through wit or heart strings to get them interested in ME/CFS. But I find my ideas these days pile up like the clothes in my “to mend” box(es). The years go by and the pile gets bigger while I continue to delude myself that I’m going to get to that one of these days. 😉 At any rate, I’d love to chat with you more about this if you’re interested (and have the energy!). I believe my email is on my blog. Admittedly, I’m not always a great correspondent (for reason I suspect you’ll well appreciate). But it might be nice to find a way to compare ideas. 🙂
Very well stated, Heidi!
Thank you. I feel I have some experience, ideas, and passion for organizing activism campaigns, but my activity level is so low I can barely keep up with letter writing campaigns. Though I feel strongly that if I am going to talk about how things should be different, I better also be willing to “be the change you want to see” and someday if I am able to regain my health at least partially I would love to be more involved. Meantime, at very least I try not to criticize those who are doing the work, even when I disagree with them, because at least they are out there in the trenches, while I’m laying here watching Netflix! 😀
Jennie, this is just appalling–and totally crazy. I have been very impressed by the care you take to keep your facts straight (you have corrected me a few times, and I appreciated it–it does us no good to circulate errors, even if seemingly benign ones!) and by your avoidance of personal attacks. My impression is that you have done your very best (and a very good best it is) to keep the discussion going in a clear and directed manner, with the result that many people will talk to you who might be leery of talking to some hotheads.
You have been doing a terrific job of trying to help us, and it is just frightening that you are being attacked in this way. I hope it does not hurt you personally too much–you have full support and appreciation from all of us here.
Best wishes, Chris
Jennie, you are simply, wonderfully amazing.
Thanks so much for all that you are doing – and thanks for exposing this crap.
xoxo!
First of all, I think you do great work. And, from what I read, you are very highly thought of in the CFS community. I’m so very sorry that you have had to deal with people being so irrationally calous and cruel.
Secondly, the infighting in the CFS community is truly ridiculous and destructive to the image of those of us with the disease, and reinforces stereotypes of us. I would love it if people would stop it. But I don’t know that they would stop it even if a cause and treatment suddenly gave us legitimacy. From my experience, it’s just the nature of people. It’s just that it is particularly damaging in our community.
Unfortunately, any time you do any sort of advocacy work, you are going to hear a ton of criticism, much of it irrational, and there’s no convincing people of the truth when they want to believe something else to preserve their own view of how the world works. When you advocate for a topic about which people have so, so much emotional connection with, and such searing trauma from, you’re going to have reactions on steriods, and I’m so sorry that you’ve been on the receiving end of those! Add to that people who are not thinking clearly, and it just exacerbates everything.
I used to be in politics and public policy, and we used to say, “When you stand on the front lines, they’re going to shoot at you.” And we also used to say, “If they’re shooting at you, it means you’re doing something right.” My brother was a legislative director for a congressman, and he told me that they knew that the correspondence they received was only from the 10% of their consituents, and only from those who had strong opinions, and mostly critical — and that the majority of people either were generally in favor of the policies or didn’t care.
Believe it or not, people I know who are advocates in communities for other diseases hear the same irrational criticisms (“you’re in the pocket of Pharma, the docs, etc.) and have the same attacks against them. It hurts so much to have people tell you that you that you’re something that you’re telling them you’re not (just like having a chronic illness that people don’t believe is real). It just seems to be how people deal with being out of control.
That doesn’t make it any easier, of course, for you, and I am very sorry for that. It should not have to be that way, and I would love to just stand up and tell those people to behave and be supportive and kind and work together!
I wish that we could call to stop to all the backstabbing. But I think all we can do is to have good people keep going with a spirit of cooperation, and to have those of us who are not so confrontational and angry be the largest presence at meetings of governmental bodies and researchers and the media, etc.
Bless you, Jennie.
Thanks for all that background Tammy 🙂
Jennie, I very much appreciate the work of you, Jeannette Burmeister, Liz Willow, Jerrold Spinhirne, Rivka Solomon, Danny Ze-dog, No Poster Girl, and our many other advocates. Thank you.
I agree Rebecca. And it seems to me that the unfounded speculations and bullying I run across are bad for everyone involved.
Jenny commiserations on being the current target, unfortunately this type of thing is not new, certainly in the UK various patient orgs and their spokespersons have endured this kind of garbage for years. And of course Cort has frequently been the subject of similar attacks.
In the realms of patient advocacy this crazy sectarianism seems to be unique to ME, and it certainly does have a profound chilling effect. It’s very difficult to understand the motivation because it is so obviously self defeating in terms of being taken seriously by researchers or government, but perhaps that’s the point –for some inexplicable reason there are patients who want to stay on the outside, and therefore attack anyone they deem to be a collaborator.
There is a fantastic irony though – if one were to adopt the conspiracy driven perspective of those who have attacked Jenny, then by implication the attack would be seen as designed to impede ME/CFS advocacy, and therefore the attackers must themselves be agents of the HHS/NIH/CDC/ WPI/APA collective of anti ME forces.
The only consolation in all this is that there has been a gradual coalescing of the least sociable ‘advocates’ around a single website, in the end it’ll just be a matter of leaving them to their own ordure while those who are open minded and of goodwill reject the extremist position .
Well said. I couldn’t agree more.
Russ
Jennie,
I greatly admire, appreciate, and respect your integrity, intelligence, straightforwardness, courtesy, and willingness to use all you have to help the ME community by researching and reporting on the issues before us. What more could one want or expect? We do not take you for granted and are most grateful for you being there for us and for you being you. Please know you are loved. I hope you and your family have a happy Thanksgiving in spite of all that has happened. As part of my Thanksgiving prayer, I will be giving thanks for you and all you have done for us.
Thank you for your courage, Jennie. I know well what it’s like to be vilified unfairly. We in the ME/CFS community will and should disagree on issues. But personal attacks weaken all of us. Kudos to you, Carol
That is remarkable that the government released your emails without redacting your personal information. You must be making a difference.
I wouldn’t have found it problematic if you had sent the story to them to ask if anything was inaccurate even before it ran.
Thank you for your P2P work.
Thank you Jennie for this awesome Blog. I rely on your blogs for accurate info because I don’t have the ability to read and comprehend all the info that comes from the gov’t in a timely fashion they need. Keep up your stellar work!
As a patient community, we need to respect each even if we have different opinions. It’s my belief, the gov’t will not take the patient community seriously if they see “in-fighting” amongst the patient community.
I can’t thank you enough for all you do!
Glad you published this. This is a sickening side of ME/CFS “advocacy” which believes that any engagement at all with the feds or whoever constitutes some sort of treason. It proposes that Susan Maier or Myra McClure or whomever is the devil.
This one is more crazy than most though. To think that Jennie – who has been unrelenting critical of the P2P process – and who throws her darts with great aim – would ask Susan Maier or anyone else for permission – is ludicrous. It shows some people are willing – without doing any research – without doing any background checks – to shred someone’s reputation. That’s is more than a little mental….as Jennie notes.
“Second, this kind of behavior confirms the stereotype that we are all crazy. Remember the allegation that there is an “armed wing of the ME brigade“? Remember the alleged death threats against Dr. Myra McClure? There are people at NIH, in the press, and in the research community who think we are all nuts. “
Gossiping and infighting are not unique to the ME/CFS community. Its a societal phenomenon that often occurs in issues involving government misdeeds that are harmful to the public.
See Margaret Hefferman TED Talk on the “Dangers of Willful Blindness”
http://www.ted.com/talks/margaret_heffernan_the_dangers_of_willful_blindness?language=en
Whoever authored and circulated that egregiously flawed email (casting doubt on the exposing of fraud in gov’t committee recommendations) should issue a public apology immediately. They should take steps to assure that anyone who was sent the misinformation is made aware that the statements are in error. If not, I for one would like to know who did this, so I know whose words to question closely in the future.
Anyone can make a mistake. The damage occurs when one becomes aware of their mistake, but refuses to take steps to correct it.
It needed to be said and you say things so very much better than I do. Well done Jennie.
I don’t know what is happening in that place or what that person hopes to achieve by such actions. I tend now to visit for entertainment. Sad isn’t it? Oh sometimes there’s an interesting comment or two but I would be surprised if many now regard it is as a serious platform. It’s like the National Enquirer. Unfortunately I have withdrawn from the bigger public forum as well. I like to debate. I like to debate the news and the research – when I can – but there’s so much crap about and I don’t like wading through it even on a good day. Much better things to do.
But don’t you let the bastards get you down. Our community would be much worse off without you. So hang in there do.
Russ
Jennie, just one more voice to tell you how much your very hard work and very accurate reporting are appreciated. Maybe you can take away from this nasty episode how many people are so very grateful to you and how worthwhile that work is, instead of how small, mean, and jealous some people can be.
However, if it continues, please go public on who is saying such things!
And, I also think it was deliberate, with a good sense of what would ensue (attacks on you) that your name was not redacted. Worth finding out who did that!
Billie
I no longer get involved in any type of advocacy to do with ME/CFS. Not that I’ve been personally attacked, I just saw the really ugly side of ME/CFS advocacy when the whole XMRV thing was going around. It all got too nasty. It’s enough dealing with this illness without having to deal with the nastiness that comes from some so called advocates. You have more guts than I do.
Paul,
What do you mean “I just saw the really ugly side of ME/CFS advocacy when the whole XMRV thing was going around”? WAS? The mean-spirited gossip for exposing fraud and the fallout of it is still occurring.
I have a very dear friend. I don’t know her from the mold issue or the CFS issue. I know her from the whistleblower issue. I know her from her life and career being ruined for exposing scientific fraud over CFS with the use of NIH funds.
I know her from the aspect of many “advocates” being utterly gleeful when they broke into her house, stole her personal computers and research and hauled her off to jail — without taking the time to understand that it was in retaliation to discredit her, destroy the evidence, ruin her career and scare her into silence; all under the color of law.
Today, my friend’s aggressor is in jail for his illegal campaign contributions to Senator Harry Ried. Yet, it seems no one has once said they were sorry for what their gossip has helped to do to my friend’s life or her husband’s, forever. As of today, she can’t even read this blog as she is permanently enjoined from going on blog sites. Nice, eh?
Point being: Sometimes its not about being right or wrong on the proof of causation and proper treatment of CFS. Sometimes its about standing up for your fellowman who gave it all to help you. If you don’t stand up for those who are willing to directly and effectively speak to big government; soon there will be no one left to effectively speak to them for you. The risk becomes known as too great when people see those who do speak directly to gov’t — thrown under the bus by those they sought to help.
Silence can also be deadly while aiding discrediting rumors to fly.
Someone needs to issue an apology ASAP for the misinterpretation of Jennie’s actions. We don’t need any other effective speaker left vulnerable to be retaliated against for exposing fraud.
Thanks Jennie, and sorry to hear about this nonsense. Unfortunately there are a small (relatively speaking) number of people in the community who say this crap and cause great damage to the way all patients are perceived. Maybe we need a name and shame list somewhere neutral in order to disassociate these trolls from our community when stuff happens like this to people like you.
It is not the first time I have read people defaming people involved in ME/CFS activities, and it is usually the same few people doing it. It is right to call people out on it.
Fortunately, these trolls do not truly reflect our community as a whole and many many people are supportive of you and the work you do. Myself included. It is important to show support to victims when trolling occurs. Thank you.
Amen Jennie! I am fed up with this constant trashing of advocates and organizations in our community. They don’t even bother to call or contact to get the facts. Sorry this is happening to you. Thank you for all your work on this issue! Such a colossal waste of energy, time and resources.
I’m so sorry. All you can do is shine a light on the behavior and keep shining a light on it until the behavior stops. Glad you are calling them out. You do great work and I admire you for it deeply.
Thank you for this. I have had ME/CFS for 15 years – from the beginning I have been astounded at the infighting. I have to admit that I have stopped following most advocacy sites because I can’t keep track of which ones are sane. I use your blog as a guide – if you recommend or approve (a site, action, petition, etc.), it must be OK.
What *is* an effective response by those of us in the ME/CFS community?? Just ignoring doesn’t work (witness #Gamergate). Engaging lends energy to them.
Thank you! for continuing your advocacy in the face of these kind of attacks, and for being an impassioned voice of sanity.
Yes, ignoring doesn’t work! I’ve been there, tried that. But engaging lends them energy, in a way. I don’t have all the answers on what to do. But one lesson from Gamergate is that speaking out and shining a light on despicable behavior does have an impact. Exposing things for what they are makes people realize how out of control things have gotten.
I’ve been asked here and on Facebook (and in private conversations) if I would name names. I gave that a lot of thought. On the one hand, I can understand people wanting to know so they can avoid the instigators or evaluate their other comments in light of this. But ultimately I decided that I wanted this to be about the bigger issues.
It’s not about a feud between me and a couple people. That misses the point. This infighting and sniping hurts every single one of us, even if you don’t know it is happening. And the only way to fix it is for more people to speak out, for more people to say this can’t go on. And if I can make even one person feel a little safer about taking part in advocacy, that would make all of this worthwhile.
“I have had many patients tell me that they are not involved in advocacy, or have pulled out, because of the bullying, harassment, and negative behavior.”
Yup, you can count me among them. Mostly, I found it amusing seeing the vitriol that some “advocates” would spew against anyone who dared question the party line. It was like watching a bad soap opera…it was so over the top, it circled around to funny. Nevertheless, I don’t post to xxxxxx at all anymore, and even on Facebook, I’m very hesitant to do more than Like someone’s post, especially if it’s an ME/CFS group page rather than a friend.
I even had one advocate try to “out” me by linking my online name and my real name, like that was some grand, sinister revelation (there’s a name for doing that, which I came across the other day, but it’s eluding me now). While Googling my real name won’t get you very far, since there are two popular actors with variants of that name, as well as several other notables, if you’re trying to go the other direction, it’ll take you all of about 10 seconds to find one of numerous sites on which both are published or my online name links to my Facebook account, which shows my real name. Oh, you found it? Gosh, I’m so impressed and alarmed by your ability to type my user name into Google…not!
Like others have mentioned, I do find myself a bit more snappish since I got ill, which I attribute mostly to the lack of almost any social contact whatsoever, but no matter how snappish you get, there’s a line, and people like this have blown right through it and then some.
This is why I like your blog, actually. You’re straight to the point, give people the facts they need, and don’t allow users to snipe at each other. (And yes, I know this first hand! lol)
-Edited to remove reference to specific website.
Looks like I am no longer welcome in that place by the owner. Hey-ho. If people don’t know who we are talking about by now then it isn’t hard to fathom.
I don’t know what the answer is Jennie. I think that the lack of activity on that platform and distinct lack of comments each day is ample evidence that it doesn’t have the clout or indeed credibility the owner might think it does.
Perhaps by criticising anyone and everyone it was hoped traffic would improve, or maybe the defence would be that oft-cited crap about ‘freedom of speech’ but it doesn’t excuse what happened here.
Anyway, onwards and upwards. I hope that whatever is happening in the background is resolved and maybe after a break and a rest you decide to continue.
If you didn’t then I for one would understand. Life does move on outside of advocacy.
Russ
Gosh, this is awful. That is not what you need or deserve after doing all of the investigative and advocacy work that you have done. Plus, explaining the intricacies of the committees’ founding and recommendations, etc. What you explain is invaluable to us, as is what you do.
I wish I could just say, “Don’t let the turkeys get you down!” Actually, you shouldn’t. They aren’t worth it. And what is their contribution to ME/CFS advocacy anyway? Or is it just criticism, which is not helpful to our cause.
We can disagree over tactics. We do, and right here on this blog, too. But disagreeing isn’t the same thing as bullying and defamation. It’s honest disagreement but without disrespect or vilification. I think we need all the help and tactics we can get.
If people just criticize and get angry, who is that helping? Certainly not those of us who suffer with this disease.
I think your tone is the emails you sent was diplomatic and tactful. It is often the tone we have to use with medical providers, insurance companies, governmental agencies we have to deal with, even where we strongly disagree. It’s a tone lawyers in a civil liberties organization where I worked eons ago use with opposing counsel even where they’re locked in a strong dispute. It’s just a bone. It doesn’t weaken the arguments or the principles one has.
This is a big battle we’re waging to find out the truth. I wonder if some people who support HHS, NIH actions aren’t behind the criticism.
We need to all be advocating even if we disagree on tactics. This is like an investigation where we’re all trying to find out the truth and insist on our rights to research funding and treatment, as well as disability and insurance coverage.
The back-biting should end and we should all try to keep the pressure on the government and push for science to win out over government inaction or worse.
So first let me say how pleased I am with the discussion we’ve been having. I was gearing up for liberal use of the Moderation Hammer, but I haven’t needed it. Every comment that people have submitted (except spam, obviously) has been approved.
Second, I am really glad Joe raised the point about snappishness. I struggle mightily with this myself. And the worse I feel physically, the more likely I am to be a terrible angry bitch to the people around me, and if there is no one around I am nasty to myself. I understand that people are hurting and angry and sick. That’s why I haven’t complained publicly about bullying, etc most of the time. I’ve cut people a lot of slack because I understand the tendency (and need) to lash out.
This case was different. I didn’t address some of the personal sniping, like who I might be friends with or the fact that I served on a Board of Directors three years ago. People have always gossiped about me that way, like Cort noted in his blog. Whatever. Some people will just be nasty.
But the quotes I address in this post are something very different. They accuse me of taking money from NIH and of asking NIH to approve my blog posts. That’s not just “mean girls” gossip. That’s an accusation that undermines the integrity of my work. The timing of it (from earlier this month) is also interesting, with the P2P meeting fast approaching. NA commented above about how a conspiracy theorist might make much of the fact that this attack on one of the biggest critics of P2P actually helps NIH. I don’t think these particular people are trying to help NIH at all, but they may not be thinking through the consequences of their actions.
I don’t spend a lot of time on this blog complaining about how hard I’m working or the impact on my health, but I’ll drop the wall a little bit now. I have worked my ass off on P2P this year. When I published my post on the P2P Working Group meeting in January, I thought that would be it. I had warned the advocacy community and others would step up to lead, but almost no one did. And as I got more and more documents through FOIA, and learned more about the systematic evidence review, I became more and more concerned. In addition to the work you have seen on this blog, I have spent a great deal of energy behind the scenes trying to convince advocates and groups to work together against the P2P and trying to map out a strategy.
And all this effort has laid waste to my personal life. 2014 was challenging for me already, but making P2P a priority? The effect has not been pretty. I haven’t spent time with my friends. I leave the house for medical appointments, and that’s about it. I haven’t done things to take care of myself physically, emotionally, or spiritually because I have needed that capacity for the P2P work. My life has narrowed down to a series of transactions: FOIA fights, blog posts, advocacy letters, IV saline, doctor visits, caregiving for family members.
To have people make false statements about my integrity is to dismiss that sacrifice. I’ve seen other people go through the same thing. There are many public figures in ME/CFS, including people I disagree with, who have had their hard work dumped on by people making stupid, nasty accusations with no basis in fact.
Let’s disagree about the strategy or the approach or the priorities or the issues. Tell me I’m wrong about P2P and that everything will be fine. Or tell me I’m wrong about P2P and it will be horrific and should be boycotted. Talk about the issues, man.
But accuse me of lying to the advocacy community? Accuse me of taking money from NIH and seeking NIH’s approval of my blog posts, and then turning around and saying something completely different on this blog? No. The gloves come off. That’s too far.
It is the persistence and diligence of Jennie and others like her to uncover all the injustices done to patients with ME/CFS over many decades that advances us ALL in the forward direction. Without her sacrifice, intelligence, legal and board of director experience, AND her thorough approach we would NOT have knowledge about much of what has taken place at the government level. This patient community should be grateful for her dedication and should be thanking her rather than vomiting their craziness in her direction. I’ve said it before but I’ll repeat myself, if you have the energy to slander an honest, hard working advocate then you ought to instead consider focusing that energy to help the rest of us do the real work, and if you can’t/won’t do that then keep your negativity to yourself.
Thank you, Claudia! I appreciate your support and hard work so much.
I appreciate the fact that you have the ability to go behind the scenes to bring information concerning the duplicit acts of the P2P. I suspected all along that the P2P was an end around in case the IOM definition was favorable to the ME/CFS community. It is sad that another forum (xxxx) had to attack you in this manner. But this is typical behavior of this forum for many years.
-Edited to remove link to specific website.
Jennie, two things- 1. You’re the f&%@$% bomb and 2. The nutters are going to nut. Please just keep doing what you’re doing and don’t worry about wasters. It’s like arguing with the psychobabblers, there’s just no point.
-Edited to remove my favorite expletive. Sorry, John.
This is appalling! I’m so sorry, Jennie.
I agree with everything you say in your post. People are naive in the extreme if they think they can attack advocates in this way without attacking advocacy itself. And they’re hurting not just themselves but you and me and every other patient.
Reckless, stupid, shameful.
Incidentally, my first-glance test of whether someone is telling the truth when they’re attacking someone is: are they hiding behind a pseudonym or are they willing to put their own reputation behind their claim?
It’s a testament to the human spirit that any of us survive as well as we do:
“Relationships of power, politics, policies, practices and social relations were revealed to play an important role in the experience of ME/CFS. Trauma appeared to occur across every facet of the participants’ lives, particularly in dealings with the medical profession, insurance companies, educators, employment, family, friends and the media.”
“ME/CFS affects women at six times the rate of men… Moreover, women exhibit more severe fatigue, worse physical functioning, more bodily pain, poorer emotional functioning and significantly greater impairment of work activities…”
The UN Convention on the Rights of Persons with Disabilities furthermore recognizes that “women and girls with disabilities are often at greater risk, both within and outside the home of violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation” and “women and girls with disabilities are subject to multiple discrimination…”
http://www.iacfsme.org/DesktopModules/DigitalDownload/2014Syllabus25.pdf
http://www.meao.ca/files/Academic_Clinical_Perspectives.pdf
http://www.un.org/disabilities/convention/conventionfull.shtml
Let’s please focus our collective strength on documenting the misdeeds of federal employees, failed research, and failed policy. Hugs Jennie (and to all who are hurting).
Advocacy is not a hobby for me or for many others.
For us it is an (unpaid) job that takes all our resources and then some.
There are advocates who (like Jennie, Jeannette, and Mary Dimmock, among others) work on the front lines and there are others who tend to work in the background. We all work hard.
While I am grateful for everyone’s work, my heart is heavy for all the advocates whose work has damaged their own (already lousy) health.
I don’t know any advocates who truly have energy to spare to demean, defame, bully, lie, etc about others. I do not know of any actual improvements for us that have have come about as a result of these sorts of things.
To those who engage in these sorts of things – STOP the infighting and berating of others.
Unless you have a different illness that doesn’t deprive of you energy the way ours does, there isn’t energy to spare for infighting, defaming, etc.
Spreading misinformation and perpetuating divisiveness only serves to divert attention from things like P2P, when in fact we need to be keenly focused on P2P.
Diverting attention from things like P2P, condemns us to more of the decades-long government policies that have kept us from accurate diagnosis, treatment, etc.
We need to use our resources to make things better for all of us.
We need to speak out about inappropriate government projects (such as P2P) and policies using facts to back us up.
We need to show that we will hold NIH accountable for the outcome of the P2P report.
There’s a lot of work to do and we need to do it NOW.
Thank you Jennie for having a moderation policy that allows for varied views.
And thank you for all that you do.
When I first read this blog, I felt really bad that someone like you, Jennie has been hurt like this. It is never okay to defame someone with the spreading of lies but, it hurts even more when it happens to someone who works so hard for our community and who focuses on getting the facts straight.
I wasn’t sure at first if talking about this in such a public venue was a good idea. I was worried about how it will look to the “outside world”? After much thought though, I have come to realize that it was the right thing to do. I know that for me, personally, it has caused insight and inner thinking. Sometimes we get carried away with trying to have our voices heard and forget about who might get hurt by it.
It is true, like others have pointed out, that these types of conflicts probably occur in all type of group settings. As ME patients, this is compounded by the fact that the stakes are so high for us. In addition, and maybe more importantly, there is a great divide in the community based on the fact that we have such a broad diagnostic criteria. We have patients who suffer from severe ME and others who have a mild case of chronic fatigue that is most likely a temporary, functional ailment.
Until, these two become officially separated; we will continue to have strong debates because the one group does not feel that the other represents the same disease. The government agencies are the ones who have perpetuated and aggravated this issue by their refusal to accept criteria like the CCC and/or ICC and their insistence in stressing the misapplied psychological aspects of it.
It is important to point out when we feel that we have been misrepresented, misunderstood, neglected and denied due respect. It is all right to have different views and disagree on tactics, but personal attacks based on lies are never alright.
Great comment, Gabby.
Its clear from the history of ME and CFS that what has happened to ME is not about the science of the disease. Its about politics and vested interests driving their own agendas. And as a result, ME patients have been dismissed, neglected and even abused by the very people who are supposed to help them. It’s not surprising that HHS’ policies toward this disease has sown anger and suspicion toward HHS among patients and their caregivers.
All of us, regardless of how we focus our advocacy, are just trying to bring some scientific sanity and fairness to HHS’ misguided public policy toward this disease. In my experience, we all share the same high level goals. But naturally, we have different tactics for how we achieve that based on our own experiences, expertise and available energy and resources. Personally, I think that all of those tactics are needed.
But as everyone has said, personal attacks directed at community members are sucking dry precious advocate energy and having a chilling effect on those – both sick and healthy – who might be interested in helping. This is especially problematic when those personal attacks are as unwarranted and as irrational as these were against you.
But people who trade in such accusations don’t care about the facts even to the extreme of deleting the comments and accounts of those who disagree or try to refute such allegations. We can all refuse to engage in such tactics but unfortunately, it is a reality that we will probably have to deal with until HHS – the real target of our advocacy – fixes its broken policies.
Jennie, first, those of us who follow your blog know how erroneous these statements are. I too ask those mentioned in my blogs for clarification. Having short-term memory loss, I want to make sure the information is correct. This does NOT mean someone else writes the blog in question, and I surely hope my followers know I don’t get one red penny for what I do other than royalties from our books (And no, medically related books seldom make the best sellers list. They are a labor of love). And for those advocates who do receive funds for their non-profit work, I can only say, they don’t get enough! As advocates, we should work together, but people such as this have their own agenda and desire recognition at someone else’s expense. In defaming you, she/he defames herself/himself.
I choose to believe that in every adversity is opportunity, and what an opportunity this is.
In addition to these three items, which you mention:
First, slander not only bullies the target but it intimidates other people.
Second, this kind of behavior confirms the stereotype that we are all crazy.
Third, infighting weakens us.
I think this kind of infighting has a huge impact on money, in two different ways. First, and most importantly, it makes it almost impossible for random companies to support ME/CFS research. As a counter example, consider the disease type-1 diabetes. They do huge fundraisers each year. They get a lot of money from companies you would expect (drug stores and pharma, for example), but they also have big sponsors like Ford (the car company) and Marshals (the clothing retailer). Those guys put big money into type-1 diabetes research, but have no real connection to the disease. Why do they do it? To get good will. Everyone connected to type-1 research knows they give money. And those companies can tell people “we give money to type-1 research, see how good we are?” Those companies have one requirement: that the cause be non-controversially good. Any sign of back biting, controversy, infighting, and they will go elsewhere. (Because all they really want is good will.)
A second way this infighting effects money, is political money. The bottom line is that government fund research for two reasons. Either because they “should” based on their charter, or because a politician says they must. The first type results in whatever money ME/CFS is currently getting (pennies, really). ME/CFS does not get any of the second type of funding, political funding (which is sometimes called “pork,” “gravy,” or “special allocations”) or something like that. Why not? Because, again, the one thing a politician must have in order to push something like that, is unadulterated support. There are people who hate spending money on anything, so if a politician is going to spend money on something, they must get support in response. But if there is infighting or controversy about how the money is being spent, then they will move to some disease were the supporters will support them.
I was really shocked a few months ago, when someone tried to get support for a few million dollar “special allocation” for ME/CFS. There were people arguing that it was bad bad idea, because they didn’t know exactly where the money would be going, or the people who were allocating it were government and so evil, or other seriously silly reasons. If that had been type-1 diabetes, there would have been universal support for it, because even the people who were not getting the gravy in that bill understand and support the idea that for scientific research, all funding is good funding; gravy is good. But in ME/CFS, if their scared cow is not guaranteed up front of getting fed, then it devolves into back-biting and conspiracy theory, and no one gets fed.
GKGK