EDSociety: What You Need to Know

    Over the past few months, several Ehlers Danlos advocates have been discovering a multitude of concerning, disappointing, scary or just downright odd things about the EDSociety. We have had a ton of dialogue with them as both an org and with CEO/president Lara Bloom on Twitter and FB, but it has provided no clarity, only escalation. Instagram, however, has remained mostly unaware — completely in the dark. Thanks to the platform not being conducive to layered conversation or sharing links, screenshots, studies, tweets and more, IG stayed in a blissful bubble. That was never more evident than witnessing the support on both their recent “EDNF impostor website” statement and then their ABSURD stance contesting the latest research on hEDS’ prevalence - based on their “opinion” and how they “feel” (which, btw, who’s the “we” there? Lara? The board? The medical team? Who weighed in? [update: they added a list of members behind the statement since this post, but little else explaining the process behind it]). You deserve to know everything and WE deserve better.

    That said, it is really difficult to get you all up to speed when I can’t link countless tweets, angry responses, lies, cleverly-worded and extremely evasive answers to questions, screenshots of studies, and more. The amount of text is also SO long and inaccessible for an IG post. I decided to upload this to a separate blog page to be more legible; that link will be in my bio for a bit. I’ll do my best to consolidate this primer, but cannot urge you enough to go to Twitter yourself, look into threads by advocates Asher Wolf, Karrie Higgins, Allison Wallis, Liz, Linda_T, A. Warde, Oh TWIST!, myself and so, so many more.

To start, they promote, work with, follow and/or endorse a wide variety of extremely damaging folks/ideologies:

🔹Dr. Bulbena - endorsed by EDSociety - refers to EDS as an “anxiety-collagen disorder”, one of psychogenic origin. Yes, that means caused by our mental health. Yet, EDSociety’s own hEDS expert (Dr. Rodney Grahame) vehemently contests this and came forth sharing a variety of flaws with Bulbena’s conclusions. Grahame fought hardest against the “all in our heads” concept and here comes Bulbena, manipulating Grahame's research to push his own assertion of psychogenic origin, while also citing disproven CBT theorists and bastardizing all we knew about EDS with this anxiety phenotype mess. Guess who still relies on Bulbena’s research in their mental health toolbox sections, have him on their website, and pull on his take in all conversations about mental health and EDS? The EDSociety. Against their own expert's advisement. The timeline of events.

🔸Dr. Michael Holick. Long issue condensed: presented at a 2013 conference on Vitamin D, was later outed as a complete fraud on Vit D research and also went so far as to help parents accused of child abuse regain custody by diagnosing their kids w/ hEDS. EDSociety hasn’t worked w/ him since, but appeared to offer no public statements denouncing him, and his deceptive Vitamin D info remains on their site and FB page. When asked about this, they said they DID make a statement, and they did, but it’s buried very deep, vague, and as for the info slides? “They’ll get to it in a few months when they redo their site”. Holick is also conducting gene research for hEDS and despite his litany of ethics violations and prohibitions, the Society hasn’t issued any public warning against him by name to protect patients nor urged them to steer clear of his research.

🔹Dr. Clair Francomano — head chair of their MEDICAL AND SCIENTIFIC BOARD, famed EDS geneticist, and former Director of the EDSoc — is on the advisory board and distributor of Kyäni, which is an MLM/direct sales company that sells odd nutritional supplements. Kyäni has already received pyramid scheme complaint in California. Francomano references their products within presentations discussing her medical research and was also a presenter and advisor within a very frou frou “Integrative Healing” program for EDS, including fringe programs and retreats like “Wellapalooza”.

🔸Francomano has also been a part of some very circumspect research projects including the CINK study - which the EDSoc also promoted heavily and has so many problems I cannot delineate them all. The CINK study was all about “energy lines”, “corrective integrated neuro kinetics”, likely biofeedfack, breathing, and some other very poorly outlined ideas of what it was and how it works. Patients trialing the CINK method shared enthusiastically online (via an Inspire thread and more) that they were doing so at the lead of a completely boundary-less practitioner named “Linda”, who’d provide this pro bono service for weeks at a time, become “like an aunt” to patients, and be available all hours of the day. When asking patients what the therapy even was or included, no one could say, would just call it “magic”, life-changing, or say they 'couldn’t possibly explain it, it’s just completely changed their life and CINK is everything'. Only promotion, zero information, conducted under a very unhealthy patient/doctor relationship.

🔹The CINK study dissolved, without any communication from EDSoc beyond “that was an EDNF project”. But the now-EDSociety insists that “all that funding was placed in an account and won’t be touched until they restart a new 'very similar' study". When asked where that money goes, how its  use is decided on, or even how much it was, answers either stopped, were evasive or just referred to past statements that didn’t answer questions. In short, the money (a $500 EDSoc grant - likely just for one year) goes wherever Francomano goes.

🔶That brings us to the HEDGE Study:

Explorations into privacy concerns about that have been shocking and also non-forthcoming. Your DNA may be given to third parties for additional research and commercial use, and one of those definitely includes Face2Gene. Face2Gene uses facial recognition AI to potentially recognize rare genetic illnesses. As of now, vEDS is the only condition with any known facial characteristics, and even in vEDS patients MANY do not have them. The disclosure that all participants could have their facial data sent there isn’t made clear, so patients can’t decide if they want to contribute to eugenics-based research. Then, the cloud-sharing of that data Face2Gene receives, amongst tons of doctors and more, is even more loose.

🔹There are several other problems with the HEDGE and many patients are pulling out. [See updates at end of post.] Also, of course, Francomano is lead on this research.

Onto other things—

🔸The EDSoc used to be the EDNF. They evidently disbanded and rebranded as the EDSoc (as strongly insisted by Lara, 'it was not a merger'), yet they still filed their taxes as the EDNF and the 501c3 title is held by them. When asked about this confusion, who is who etc (since the EDNF site is still up, posing as the EDS org, was the leader of the CINK study, annnd was selling cannabis products to vulnerable patients), Lara and the EDSoc’s answers got extremely bizarre, evasive, and legally convenient. Clear as mud. They insist they are not the EDNF and that’s not them, but would immediately stop responding in regards to their tax filings, 501c3 status, and their current/future involvement in CINK.

Then, even though the EDNF page had been running for a very long time promoting products and inaccurate info, it wasn’t until these questions were being asked for days that Lara eventually said someone else took over the site, was posing as them, and then alleged to have contacted the FBI. It should not have taken a deep exploration by patients, and days of conversation w/ the CEO and org as a whole, to prompt both action and a public statement for a months-old issue. Their statement also made it sound to those not on Twitter like they were being proactive, discovered this independently, were on top of it, and doing the community a service -- not alerted to and almost pressured to do something about it by patients. There is currently an FOIA request to verify a report to the FBI.

🔹That said, on EDSoc’s own page they too promote and receive kickbacks from CBD and essential oil products. That is a problem in and of itself, but no wonder people couldn’t tell that the EDNF “impostor site”, who was doing the exact same thing, wasn’t them or still afilliated. It’s not as if the EDSociety was above doing that.

🔸Questions and concerns about ALL of these things and more often got heated, and whenever they could no longer give a diplomatic PR response, they’d insist that patients email them privately. Whenever the person would rebut with “no, let’s keep this public” to avoid secrecy, gaslighting or an imbalance of power, they would immediately stop responding and never return to the discussion.

🔹There are a few other concerns with sponsorships, like Acer, who sponsored several conferences but whose vEDS med was rejected by the FDA. EDSoc made a statement about their decision, but didn’t disclose that they accepted money from Acer. Then, on Twitter, claimed it was statement made by the “International Consortium”, not the Society, so totally disconnected from whom Acer supported. That is 100% false and their statement is literally titled “Consensus statement from The Ehlers-Danlos Society and professional members of the vEDS community”. The society’s name is right there. The International Consortium is also an arm of EDSoc.

🔷Other big concerns:

🔸Christina Bloom — Lara Bloom’s partner — held a very disturbing group at a 2018 seminar. Working as a professional musician (not a music therapist as far as anyone can tell) to “help kids compose a song about life with EDS”. The lyrics were incredibly advanced, dark, and told these kids very disturbing messages about this life. Including lines like “We aren’t strong, it’s hard to hold on” “My old life that was easy seems so far gone” “Skin and bones is all you see” “Fire in my head, just want to go to bed .. my mind is going blank now” “The pain’s so bad you can’t get through” “Believe me please believe me” and more cries of pain and misery. Children roughly aged 7-11 memorized and sang this on stage. It was recorded and put on YouTube and exploited children’s “pain” for donations and pity. These children did not construct this song alone and were instead fed extremely damaging messages about their disability - which is only in its infancy for them and will only get much harder. As far as we know, Christina does not have EDS [update: according to Lara, she has HSD, a diagnosis they created], nor any qualifications to lead such a vulnerable, emotionally heavy or developmentally formative group with young children. The song and lyrics remain on their website, FB page and YT channel where people cry over these children’s suffering. They were forced to sing these words that were projected onto them.

🔹They have promoted and touted Lena Dunham’s advocacy heavily. Lena is a self-admitted sexual abuser, who fetishized hypermobility publicly (claiming it’s why she “was good at sex”), and also openly stated she used to feign illness for attention. All extremely toxic messages. Since Jameela and Sia are the shiny new celebrities w/ EDS, some of Lena’s contributions have died down.

[Update: On November 7, a few hours after this post began circulating, the EDSociety made this IG post, and this Twitter post, supporting Lena Dunham again after a long lapse in doing so. The image, Lena's comments and the linked article were a week old, but they chose to show their support right then, after we know they saw the post. Many noticed and immediately felt it this was a targeted attack and direct response to this; retaliation for my speaking and doubling down on their support of her. Patients who were unaware of this post, however, were just agasp in seeing this awful person getting attention, sympathy and well wishes from the Society once again and made their concerns known. Comments quickly started to be deleted by the Society, then they edited the caption to an obtuse response to so much pain, and the turned off all comments entirely and took all feedback with it. They effectively silenced patients' concerns, many of them survivors of abuse themselves. They stated it was bullying or harassment and lectured about conduct, but failed to recognize how harassing, traumatizing and damaging it is for patients to see a SELF-ADMITTED CHILD ABUSER being used as a face for their condition and being given focused attention, sympathy and support from the Society all for a flare. This issue continued to get worse in the following weeks in DMs with Lara or emails to the Society. See end of post for links.]

🔸They gave Jameela Jamil the Patient Advocacy Award before she’d ever done any public advocacy. By that point she had only said she had the condition and talked about a few of her personal symptoms. She’d not done any real awareness-raising nor patient advocacy yet. They snubbed ALL of the tireless, unpaid, severely disabled patient advocates who have given their all to the org for years. It’s possible a donation to the org was made.

🔹On that note, they’ve also frequently reused images of popular EDSers on posts that have nothing to do with them and also fail to tag them. They’d exploit their faces for likes, attaching it to things they didn’t say nor approve, and then not even credit nor tag them so that others COULD find their personal advocacy. They were left to tag themselves in the comments and sit with how gross it felt to have their likeness used in ways they DIDN’T consent to. Approving use of their face in one context is not consent to indiscriminate use.

[Update, since posting, I received a few messages of EDSers who had their photos (some they never even gave to them for use at all), attached to promotional materials - conferences, webinars, events, etc - without ever being asked. One I have seen even included children. Some of the events also had some troubling or ableist names and sat even more wrong to have their faces attached after already being exploited to market to folks.]

🔸Until last May, awareness for anything beyond hEDS was basically non-existent. They were heavily criticized for never talking about, nor educating on, ANY of the other 13 types and leaving those patients behind. They recently tried to change that but have done so in a particularly bizarre way. In a pretty aggressive and nonsensical exchange that postured as advocating hard for the rarer types (for once), Lara falsely insisted we were causing those types harm by saying hEDS isn’t rare. That's boldly untrue, and I plan to do an entire post on this extremely damaging and unverified stance on “not rare”. But the moral superiority of "looking out for the other types" when you hadn't made them a priority or even given them a nod or mention for years was quite honestly arrogant, out of line and exposed holes in the understanding of pt experience or what having a truly rare condition is like. Many of us are also incorrectly labeled hEDS anyway bc of THEIR odd criteria and inaccessibility of genetic testing, so many of the other types are likely not as rare either.

The entire “rare” topic, their control over EDS criteria, and their ambiguous, damaging and not-really-medically sound distinction between hEDS and HSD are all really important and layered, but I’ll get to that tomorrow.  [Turns out Lara herself is not hEDS, but rare herself, links below.] 

***UPDATE: Since the publication of this post, many new issues have surfaced. Countless, honestly. There are so many that, because I cannot update this into perpetuity, I have compiled most all updates into a Highlight on my IG (to keep things accessible for Instagram, but also to limit harassment to me since that has been a major concern since posting). You will find all updates moving forward there. This includes but is not limited to: an extremely vitriolic and abusive email sent to a concerned patient, straight lying about prior knowledge of Lena's memoir/abuse to another, Lara not having hEDS type (and potentially knowing about that for awhile based on articles citing her involvement in TNCX research), as well as an ABUNDANCE of ableist interviews and recommendations/ideals that could genuinely kill patients if followed (including interviews that shame folks with visible signs of their disability, saying they've succumbed to their illness bc it's easier -- all despite Lara personally admitting to throwing herself into a brick wall, slashing her face, and ending up in hospital for 2 weeks out of her own desperation to "make the the invisible visible" and receive external attention).

There have also been many many serious concerns added to the original HEDGE problems (they can all be found summarized in great detail in the Highlight I linked earlier). A great deal of those issues stemmed from the longest, non-sensical, withholding exchange on Twitter. I was called crazy and my advocacy on this issue 'madness' by Lara in supporters' DMs. More $1mil anonymous donations have come in and questions about their involvement (based on past issues) remain. Concerns about nepotism, as an organization run with so many family members leading the way, have arisen. And lastly for this article, but hardly the last of new concerns, more research into how the 2017 criteria even came to be (with some criteria not backed by research as being a hEDS marker), the entirely arbitrary label of HSD (which doesn't even exist in the UK and makes using data to research anything pre-2017 an impossibility now), as well as their unfounded and harmful stance on rarity rage on.

Unfortunately, I cannot update this forever. I only included about 65% of the overall concerns globally. As always, research on your own, ask questions, come by them honestly, steer away from bandwagoning, and do not just follow my lead without truly understanding the issues yourself. Be fully informed and know your feelings are your own. I elaborate on this idea as well as my intentions for doing this at all in my follow-up post to this (prompted by my integrity being called into question by fans and the Society themselves), being called a hater, cyberbully and conspiracy theorist.  Back to the original article:




There are honestly pages upon pages of more issues, but they are just too hard to summarize and IG is not the forum to address them. But this is a good primer - each one alone is dense and complicated. PLEASE look further, ask questions, go to Twitter for more information, and read the tweets and discussions from THEIR mouth. Don’t take it from me, you need to evaluate this with your own mind and heart. While I’ll do a separate post on the “rare” issue, it’s evident their interest is in maintaining funding, not in improving patient care, and now that you’ve at least gotten the background into everything else it will contextualize that argument.

Please follow all advocates mentioned. Without all of us working together this wouldn’t be possible.