The #MEAction post (retitled after I calmed down to “#MEAction’s Support Needed On Bill to Increase NIH Funding”), has stirred up a lot. Boy, did it stir up a lot.
It was understandable; the post was, after all, composed in quite a state of heat. I considered H.R. 7057 the most important piece of legislation I’d seen in 15 years covering ME/CFS. Given the U.S.’s budget situation, next year the bill might even – if a worst case scenario prevailed – be critical for continuing federal funding of ME/CFS research.
It was not surprising, then, that Health Rising poured more into this action than we ever have. We created three blogs, produced a website-wide ad, did a small ad buy on Facebook, and I communicated with my House representative several times – plus there was the #MEAction blog. I was about as amped up about it as could be.
“We’ve Got You Now” – Historic Effort to Increase NIH Funding for ME/CFS Begins Amid Signs of Change
Still, in15 years of writing, though, I had never done a post like that. I had gone back and forth about publishing it. I was waking up early in the morning thinking about it. Finally, I just let it go, if only to move on.
A week or so after the post was published, I was able to reflect on it better.
While I consider the concerns I raised in the piece valid, my unease about it has only grown over time. Something was off. Over time, I realized I had made some real mistakes.
The biggest of which was that I did not go to Jen Brea and #MEAction directly with the post before it was published. Jen communicated to me her dismay that I had not attempted to directly contact her. I understand her dismay.
That is what friends would do. While I’ve rarely communicated with her, in the context of our work on ME/CFS, we are (or should be) friends and partners. In the heat of the moment, I forgot that, violated those ties – and I regret that. Instead of viewing her and #MEAction as the partners they could be, I started viewed them as something else. I try to see the possibility present in situations, but this time I failed. I began channeling the dark side, big time.
I was so amped about this situation that I got kicked out of a group!
I also allowed some things to get in the way of getting a hold of Jen and #MEAction that I shouldn’t have. For one, I had never forged any real connections with #MEAction. I had twice communicated my concerns to a senior staff member of #MEAction, but when my concerns about the support of H.R. 7057 were not addressed, I stopped there – and I shouldn’t have.
Unfortunately, I interpreted her responses as a brush off. The truth is I have no idea why my concerns weren’t addressed (she could have been too busy, ill, forgot, etc.), but I still allowed that interpretation to validate some dark thoughts circling my brain. I was driving a fast car into a very dark tunnel.
I worked myself into such a lather over this issue that I even got kicked out of a longstanding advocacy group I’d been in for being too intense! I hadn’t intended to say anything about this issue to the group, but once the floodgates opened, I exploded – and out of the group I was sent! That was a pretty good sign I needed to calm down and reach out more. I wasn’t in the mood for listening, though.
I failed to fully reach out.
So off I went with the #MEAction blog. Only later did I realize that I ended up doing exactly the same thing I’d accusing #MEAction of doing. I’d suggested they were not playing with Solve M.E. (something I didn’t, and don’t know, is true) and here I was not fully extending my hand to #MEAction.
Plus, if #MEAction wasn’t playing with Solve M.E., at least they were being quiet about it. Here I was putting out a hard-hitting blog on a website with a pretty wide readership without letting them see it and respond to it first. It was kind of mind-boggling.
It’s a lesson for me about getting so wrapped up in something that I fail to see or fully attempt to understand the other side. (A good lesson for advocacy, in general).
I have a commitment to support and lift up the whole community and I lost track of that commitment. The blog was divisive in ways it didn’t need to be. I apologized to Jen and Beth for not providing #MEAction a look at the blog beforehand, and I promised that will never happen again. I am committed to move forward in a way that gives all parties a say.
That doesn’t mean at times not asking hard questions – and not perhaps agreeing with the answers. Some people think we shouldn’t question our ME/CFS organizations, but every once in a blue moon, issues arise that should, I believe, be addressed. Everybody, after all, makes mistakes. I make mistakes (hence this apology). Organizations make mistakes. They are a part of life. We should not expect individuals or organizations to be perfect. The real mistake comes when we don’t recognize them and correct them.
I also want to apologize for accusing #MEAction of removing my Facebook post from their page. I regularly post Health Rising’s communications to Facebook pages, but #MEAction’s Facebook page appears to work a bit differently from the sites I usually post on. Visitors’ posts to #MEAction’s Facebook site get sent to another page, which is not visible from their front page. I had not encountered that before. When I asked an #MEAction staff member why the post was removed and didn’t get a reply, I assumed – there’s that dark side again – that my post had been intentionally removed. It had not been, and I apologize for accusing MEAction of doing that.
I hope we can move on and work together to build a brighter future for ME/CFS.
I also want to be clear that I do not request nor even want an explanation from #MEAction regarding the concerns I raised. Raising those concerns was enough. For me, the post is complete as it is, and my hope is that we can move on.
I also want to reiterate that the issues I raised in no way reflect on the many good works #MEAction is doing. My research for the post uncovered for me a creative organization working in multiple ways to support the ME/CFS community.
Shortly after the article was posted, I finally did reach out to Jen (a bit late!) and she reached back – in a remarkably graceful manner for such a difficult time. I want to thank her for her generosity and understanding during that call.
*That original blog made its point. In the interests of moving on, I’ve removed it from the Health Rising website.
This is a brave and thorough rethink of your process and it’s outcome. I have always admired your passion, and this confirms your integrity, which I never doubted.
Join the community of us human beings who e r r – we make mistakes.
We learn we grow we do better. You gave an excellent apology.You made amends. ?
When we become passionate about anything in our lives we create tunnel vision and that creates blind spots.
Passion moves us forward .it provides the energy that drives us and in that mist of that energy it’s important to breathe take time look at those blind spots.
And you did.
I am proud of you! ??
I applaud your honesty and grace Cort. Thank you for sharing this with us.
I did feel sad when I read the post you refer to as it seemed a little out of character for you. So I’m very pleased to see things have been sorted out with ME UK.
Keep up the good advocacy work!
One person asked me “what happened to the hopeful Cort?” (lol). I think it is possible to see the possibility in any situation – I was not doing that.
Working things out with #MEAction will take some time.
We all have off moments, you are allowed and they are expected. Presently there is so much going on in everyone’s world. Appreciate this post, shows the capability to balance.
I hope you have remained well.
sometimes it’s good to ask the difficult questions, and not always be unwaveringly hopeful. unrealistic hopefulness can make us complacent and ME research and advocacy can’t survive our complacency
I too feel healing with MEaction will take time. they have lost my donations. not because of your post nor their mistake of not addressing the issue promptly, but because of the unforgivable way Terri Wilder had behaved after you published the post. towards you, toward me and towards a well-meaning mother of severely ill girl with ME
I know ME action is made up of many volunteers and some of them are great but I can’t in good conscience donate to organization that will let someone so rude, prejudiced and cruel represent us. we have bad rep as it is
Cort, I stand behind you and thank you. No apology needed. You too are in pain like the rest of us. you actually are effective, accomplish things, I can not even begin to imagine doing. All of us are hurt and angry for having lost our lives, lack of ability to do many things. Crashes that last turning us to a piece of meat, who breathe. Wanting to leave to let our families live without our burden.
The politrics surrounding ME are the worst I have ever seen (after a long career in ‘political’ aw and diplomacy/policy, with the UN, Foreign Office, at the Bar and in academia – including the LSE, a school of social sciences, with no natural science arm, and so ALL politics – despite worsening ME since 1983). ME sufferers and their carers must have objective minds despite all the past misunderstanding and neglect. They certainly cannot afford to keep mistrusting, suspecting and badmouthing others in the same struggle (even the controversial among those few scientists and clinicians who are prepared to help – however misguidedly at times).
That is really something. You have been in the thick of some of the most treacherous professions…
Cort, there is a group of researchers in Paris who have a different approach and it is important to air their presentation and point of view. the BMSystems a bio modeling et Scientifique on a good path to help patients recover or improve. they have been working on a global view with very limited funding. You may want to talk to them. they have been interviewed by business journal and have a presentation on youTube.
Manuel GEA
Co-founder & CEO
BMSYSTEMS
+33 6 83 06 12 72
email: manuel.gea@bmsystems.net
Join my networks
http://www.bmsystems.net/images/logo-linkedin.png
You do an incredible job. So there’s that. I am very appreciative of the work you do to inform and advise.
Thank you Cort for a well explained piece.
I think we all get ramped up thanks to ME/CFS, &/or FM. Once the brain goes “there” it’s like a bull dog in full attack mode. My brain then mouth start down a narrow tunnel and I have to remove myself immediately. Maybe it’s from too many years of fighting to be believed which still continues which spills over to other areas as well.
Bull dog in full attack mode – a great description… I was definitely there.
Off topic, but Cort have you heard about the post covid fatigue study? Interesting they didn’t find abnormalities in cytokines in those with post covid fatigue. Sound familiar? So what’s causing the fatigue in us and them? It just seems astonishing that it can’t be worked out… frustratingly the authors of that study recommended….exercise
I didn’t see that but how interesting! That points, I think, to the brain…Got to look in the brain – which they are not doing yet.
Hey Cort…Thanks for your accountability and humility!…Even though I don’t know the situation, it took guts to stand up and admit to your human shortcomings!..I wish more of us were like that…
….On another note, I agree with you that the brain needs to be looked into, especially if, when I went to see Dr. Clauw in a seminar back in 2015, he emphasized their research that the brain is amplifying signals to the nerves in FM patients, as well as producing a dopamine-like chemical (don’t remember the actual chemical – need to look for my notes!) that simulates opium to help fight off pain…In FM patients it is maxed out, so if any doctor prescribes opioids, the brain usually rejects it, as a fail-safe protection for overdose…Hence his resolve to stop the opium pain killer epidemic and the drive for cannabis-derived pain medication…Don’t quote me on this, as It was a few years ago, but that’s what I remember…
Awesome humble attitude! These are hard times all the way around in every realm of being and it’s easy for all of us to go down those dark tunnels without taking our flashlights! If you feel a need to hear you are forgiven well you ARE ! 🙂 I appreciate every bit of research and writing you do and this spirit of humbleness just makes me like you more !
Blessings Cort.
Cort, bravely done; let’s move on as leadership and member communities of all ME and post-viral disease orgs to up our efforts to persuade Congress to pass what is now bipartisan (Yay!) HR7057!
That would be Mr. Brian K. Fitzpatrick – Pennsylvania, District 1 116th (2019-Present) – I didn’t know that! Congratulations to whoever in that district enrolled Mr. Fitzpatrick in our cause. Mr. Fitzpatrick it looks like is quite interested in health issues.
https://www.congress.gov/member/brian-fitzpatrick/F000466?searchResultViewType=expanded
Cort, I appreciate the explanation! Having this disease has at times narrowed my focus and when my mind gets focused or thinks it’s focused on something, it is hard for me to back off and that goes for advocacy work and my personal life, the “Bull Dog” analogy fits me dead on at those times! You’ve been our Champ in covering this disease for a long time and have always been a true professional, based on what you’ve written, you had a hiccup. I know you well enough to know you were not questioning organizations out of meanness, your focus has always been the betterment of our community and I am very appreciative for all you do. Advocacy organizations are there for the patient population, being supported by those patients and they should be working together hand in hand to support patients and their loved ones. Keep doing what you do! Thanks
The most important thing is being able to recognize our mistakes, any of us, and make amends when possible. A very brave and thoughtful post. Also remember that irritability and sticking our foot in wrong is usually a message that we’ve been way overdoing. Rest more!
It takes guts to say, “I may have been wrong.”
Don’t apologize for your passion for our cause, but it is good of you to make sure.
Yes, I agree with you Alicia. It does take guts to admit an error in judgement, and it can be very easy to go overboard when we are passionate about a cause. I’d rather passion than indifference any day! Cort you have always went above and beyond for the ME/CFS community, and I appreciate what you do for us. Hopefully going forward MEAction and Health Rising will build a united and unstoppable front. Keep up all the good work you do for us. We appreciate you!
You work incredibly hard to keep us informed of research on ME/CFS, as do the other organizations.
I appreciate your continued thoughts and evaluations of your recent efforts. Almost all ME/CFS advocates are they themselves sick. So we need to give the benefit of the doubt to everyone, especially to ourselves.
I hope this article will restore any connections which might have been strained through unintended mistakes. I know and trust your intentions. We are always learning.
I hope awareness about ME/CFS will continue to grow through the efforts of incredibly determined and courageous advocates like you and everyone over at MEAction.
Thanks for everything you do, Cort!!!
Well intentioned and well written…nice work, Cort.
Cort, I don’t think you have anything to apologize for — and I think maybe the other parties do — so please don’t beat yourself up over this. This is America. We have a First Amendment and you are more entitled than most of us to express your strong opinions about anything affecting the ME/CFS universe, given your longstanding, committed, research based, sharing, and non-personally-grandstanding position.
Thank you for all you do Cort. You are the best!
“I also want to be clear that I do not request nor even want an explanation from #MEAction regarding the concerns I raised. Raising those concerns was enough. For me, the post is complete as it is, and my hope is that we can move on.”
Cort, your attempt to voice your concerns may have been executed imperfectly but nothing above indicates your underlying concern was unfounded or has been adequately addressed by MEAction.
I’m still looking for confirmation that MEAction is doing the following:
1. Wholly supporting our best chance in recent memory at legislation that supports new funding.
2. Collaborating effectively with other advocacy orgs rather than seeing them as competition.
3. Responsive to concerns raised by its community and backers.
I totally agree. I still haven’t seen a satisfactory explanation from ME Action regarding how they are supporting the proposed legislation.
Lmorgenstern@comcast.net
I wanted to second the comment.
I believe MEaction does owe us an answer to the questions you raised.
You have apologized for the tone and not informing them prior to publication; perhaps, to give them an opportunity for comment, as journalists often do— but we are all better served by raising these issues, now that you have humbly, and graciously written such an honest piece of public self scrutiny.
Cort, I have also reached out to Jenn, solicitously, requesting she listen to some Senior concerns. We feel disenfranchised from the ME movement, a cruel irony since we have been sick since longer than the leadership is old. I offered her an audience of several thousand ME Seniors on our Facebook group. It would not require a great deal of her time but would be very meaningful to our membership. Others have asked as well.
Jenn never responded. I could try again. I might. Just for formalities sake. But I am betting I will never get a response. I don’t think it is because she is ill. We were in a twitter thread about dissent in the Act Up movement. She recommended a documentary to me. I am a former documentary filmmaker, but I can no more watch a movie than I can read a book. Jenn was not too ill to respond, she was disinterested. It was not required.
I feel terrible when I act from a hothead place, and I acknowledge it happens more now with increased neurological symptoms. I know well this feeling of regret that comes in the wake of what feel like righteous anger.
But I sure wish you had come away from that gracious phone call from Jenn, not only with your own equanimity restored, but with some real answers to your legitimate, well founded, deeply shared concerns.
Your readers appreciate your watchful eye and your long standing efforts on all our behalf.
You can withdraw your sword, but do not need to self censor. I hope you will reconsider. The transparency you sought from our most public advocacy group is shared by many, many of us. I would not like to think that you were shamed for asking publicly what your public needs to know.
With gratitude,
I’m with Winston here. The issue may have been raised in a more diplomatic manner, and you have gone above & beyond to address that, but the issue remains.
I think it would be a service to ME Action to allow them to post a response here to explain their choices.
Unfortunately, even though I see other good things they are doing, I am now very hesitant to support them financially until I understand why they are making the choices they are around this issue.
You were right to raise it, and any personal regrets you might have do not change the fact that the community that financially supports ME Action deserves an answer.
I encourage you to not let your pendulum swing so far in the other direction that you avoid the issue altogether. Avoidance is a poor substitute for true closure. Let’s get an answer.
You’re our warrior Cort, wanting the best for our community 100%. Please don’t stop now.
With sincere gratitude & admiration!!
I believe the concerns in the first post were valid but were presented poorly. Obviously I very much hope that MEAction fully supports this legislation and other major advocacy events. They have the potential to play a really significant role in all our advocacy efforts. I hope all our organizations do this.
Cort,
I did not see the post about ME#Action and wish, very much, to know the contents other are mentioning, the valid concerns. You can skip the “presented poorly” part.
How can I access that content?
I totally agree with this too. Yes, maybe you should have contacted Jen Brea before publishing this, but I think ME Action should address your perfectly valid concerns. And they are not faultless for treating you the way they did when you, a prominent and important member of the ME/CFS community, called them with questions.
Hi Lulu,
We have addressed Cort’s concerns. We have a very long and productive conversation. We’ll be publishing more on H.R. 7057 in the coming weeks.
Best,
Jen
Hi Winston,
I just want to emphasize that we have *never* done this: “ Collaborating effectively with other advocacy orgs rather than seeing them as competition.” We work incredibly hard to partner with other organizations and have many, many, many times in the past. The spirit of our collaboration extends to organizations, individuals, everyone, really. We claim way less credit than we perhaps deserve and much of the good we do is entirely invisible.
I do we regret that the initial post made us seem competitive or petty. This could not be farther from the truth.
If you would like confirmation of these points, then I highly encourage you to engage with #MEAction. Attend our community meetings, find your local chapter or FB group, get involved.
I know that it is more important to be and do good than to seem good. We sometimes fail on the seeming good due to our *truly limited* communications capacity. We will work harder on the latter, as I know it is very important for ensuring that those outside of the organization and circle of volunteers understand what we are doing and why.
I have to say that our volunteers and staff are all running on fumes. Some are normal crashed. Some are COVID-compromised. And beyond that, this work requires more time, effort, and heartache than you or Cort or anyone could possibly imagine. It was a very emotional and painful blog post to read when everyone is working as hard as they can do their best for the community.
Note: the funding for the bill may or may not be new. We don’t know what the NIH will do if the bill passes. It is the furthest we’ve gotten since we started all this five years ago. And we have been supportive. The article we are co-writing with Solve ME/CFS will, I hope, clarify this.
Hi Jennifer,
I think you make a very relevant point when you say: …’as I know it is very important for ensuring that those outside of the organisation and circle of volunteers understand what we are all doing and why.’
I can only speak for myself. I live in an ME/CFS community of one. Absolutely no one acknowledges that I am truly unwell. I do however experience the ceaseless insinuations that I am exaggerating/fabricating my middle aged woman’s fanciful little notions of the worried well.
Mercifully I have found (online) life saving havens of sanity and information. I came across Dr Nancy Klimas on a random trawl on the internet. Up until then, I hadn’t considered my weirdness to actually be ‘a thing’.
With this information, more trawling brought me to Dan Neuffer and then somehow – I can’t remember how – to Unrest, the OMF, Solve ME and Health Rising.
I haven’t quite got to MEAction, not because you’re not interesting, it’s just that I can barely keep up with the others and life.
So, I suppose what I would say in the context of this blog and these comments, is that, for me, the message from ME/CFS organisations needs to be very clear and easy to find.
Cort was asked to provide a gist of each blog because some people were understandably unable to take in all the information and so it was lost to them.
I don’t think the support each organisation gives to the other online, needs to be complicated. Just one sentence would do. However the visible absence of collaboration may be noticed.
I live in Ireland, so it may seem strange that I have become involved in this discussion. However, as I receive zero assistance in connection with what I strongly suspect is ME/CFS – from the medical profession here (apart from an overt leaning towards the neurotic female approach) I have to sort myself out with a bit of DIY healthcare.
So I watch the OMF Symposium’s, Solve M.E.’s webinars, read Cort’s blogs, listen to Dr Nancy Klimas and have recently participated in some Bateman Horne Center support groups. These are all in the US. In Ireland we’re too influenced by the UK’s NICE guidelines (which are now being revised).
What keeps me going is: doing the best I can to survive each day, work towards continued improvement, caring for my son, my dog, my home care clients and hopefully seeing a real and positive change in the attitude and treatment of neglected and often misdiagnosed people in Ireland and around the world.
People like you, Jennifer, are very important by your very presence or a perceived absence.
Like you say in a comment below, you have a strategy. It may be really useful to know who’s doing what, where and why? Really simply…?! 🙂
You may not want an explanation but I would like one. Perhaps you could let Jen do a guest post about the issue since she is the executive director and on the board. I don’t know that it can be put behind us since the original question was a legitimate question about why this is being completely ignored by them. Perhaps they just think their approach to the NIH will work better than this legislation? They supported a ME/CFS funding bill last year. Why not this year?
https://www.meaction.net/2019/06/06/action-alert-support-a-funding-increase-for-me-cfs/
Cort dear, please don’t be too hard on yourself. I have been in that dark place many times with the frustration of having this wretched illness for 32 years. When it hit I was 51 years of age – a yoga instructor, therapist, Grandma with all the trimmings!…..and married to the love of my life…..life was full of vitality and laughter. Now half of my married life has been (64 years) confined to the house and wheelchair. The dark places do loom and I do lash out and then I apologize as you did. All will be forgiven and life does go on. Your website is the only one I read and I’ve been amazed that you have supported us with such fortitude. I agree with Pris – please take time to rest more. Love to everyone…………..Diane
Thanks Pris and thanks everyone for their nice comments. While I approached this in a rather divisive way it also re-introduced me to the possibility of all of us working together – and what that means. Of course I have to start with myself and knock down whatever barriers I’ve imposed to having that happen.
Certainly, there is no more powerful force than a group of committed people.
–
Like you say in your caption above – I hope we can move on and work together to build a brighter future for ME/CFS
Well – a brighter future for ourselves not for the illness!
Like I said on my post to the original blog – you have always worked hard to see both sides and be fair. We all make mistakes and your integrity can not be doubted. I think the hardest part of ME/CFS is that so much of the advocacy work is done in “the shadows” since most of us cannot travel and do things in person. Connections only through phone or email tend to be more precarious. Hopefully everyone on both sides understand that the bottom line is effecting change and that we are all necessary towards that end whether we are on the front lines, just contributing money or somewhere in between. Transparency and communication are vital.
You continue to impress me with your self-awareness and honesty. Thank you.
Cort, you are wonderful. It is great to see honest apology in this world of politics. If only more people would have your courage and integrity. Thank you for this wonderful website. Linda
Everyone has roles to play and one of yours is honest, insightful and balanced reporting. Bravo to self-reflection and humility; but I don’t see the need to have made an apology. Keep on keepin’ on, Cort.
I think it was an error on your part, Cort, to take down the blog under discussion.
I’m sure you’re not alone. I just think its easier for us all to move forward in the future without that thing getting in the way. I’ll be quite honest – personally it removes a stressor for me, as well. I hadn’t thought of removing it – and someone suggested it – and it just clicked for me. I’m actually quite relieved to let it go.
I don’t know how the piece would have gone if I had approached #MEAction first but I’m sure it would have been more skillfully done; i.e. done in a way that aroused less negative feelings and incited more of a feeling of let’s work together.
Cort have you seen this study by Naviaux, Prusty et al. Very interesting / potentially exciting
https://www.immunohorizons.org/content/4/4/201
I have always appreciated your passion along with your impeccable composition. Nothing wrong with what I read, but, seems others, not so much. Always trust your first gut feeling.
I didn’t read that particular blog. But I recall thinking how very unusual the emotive title was compared to the usual.
And I guess it shows how passionate you are about your advocacy for our illness.
And also, I believe, that in challenging situations, where our values themselves may be threatened, our Limbic system does not serve us at all well. Whether we are right or not, my amygdala Certainly gets hijacked and gets to elevate the level of emotions attached to something. Leaving me with often being right, but not necessarily acting in the way I would like to… not to blame our illness. But I think it’s a fact, and we must be compassionate with ourselves because of that.
Bless you for all you do Cort
So well said Steve. It leads to a kind of righteousness which has its effectiveness but also produces a lot of other problems…such as not particularly skillful action. You can see this in advocacy at times.
That’s what I thought when I saw this too Steve. Everyone’s being effected by the chaos and negativity in the US even if you avoid it as much as possible. People are just stressed and on edge and it’s difficult to be calm and patient. I know I certainly am not doing as well as I would hope either. Compassion for everyone including ourselves is key to getting through this together.
We all make errors in judgment, especially when passionate about helping people who are suffering. You had the guts to admit how things you stated came across & that should applauded. He who is without sin, throw the first stone, that can be found in the words of God. Your heart was in the right place, so now please forgive yourself & don’t spend anymore time feeling bad. And, those who were offended, please let it go & move on.
You do a phenomenal job, Cort, and this was no exception. Your feelings might have been dark but your intentions, never, and they have clearly been the driving force. Although I believe it served a purpose I don’t have a problem with your taking down the post, for the reason you explained. Blessings.
I’ve always thought in reading your blog Cort that you have a high EQ as well as IQ. It’s not easy what you do with readers who are ill, tired, frustrated and you always handle things so well when attacked or folks disagree. Please don’t give this another thought – you’re great and we so appreciate you.
EQ was sorely tested this time 🙂
Thanks
I agree wholeheartedly with Betsy’s comment, Cort. I have struggled to work out what that ‘special something’ is you display when dealing with comments and challenging attitudes.
High EQ (Emotional Quotient – not something often referred to, hence my struggle to pinpoint) describes it exactly.
Thanks Betsy! And thanks Cort!
I thought that the concerns you raised were valid, and was disappointed to discover that ME Action has done so little to support the legislation…it seems inexcusable, really.
Yep and I thought the same before Cort raised it, so he wasn’t the only one concerned.
We have and are doing a lot at the state level. Our joint article with Solve ME/CFS will highlight this. Many of our long-time volunteers have rallied behind this effort. To have mobilized the way that we have done in the past would have undermined our NIH work. Yes, we are very good at mobilizing the community, but I don’t think anyone understand how much work that takes, especially when communicating across two organizations, where every single word needs to be agreed upon.
We are doing the best given the circumstances we are in and just have a different focus. Solve ME/CFS has a huge email list and social following (equal to or larger than ours) and their own way to reach the people who need to be reached. So many people from our organization have been involved behind the scenes in supporting this legislation. We’ve also been told it is going to be a long haul. We’ve told Solve ME/CFS that we are ready to support the legislation in whatever way a) they need and b) we are able.
However, I understand how it looks from afar. Honestly, we are so head down, busy everyday just doing the work, that we often don’t think enough about how things look from the outside. That’s part of my job—to make sure we not only are good and do good, but seem good—but I have been on semi-leave since March due to COVID-19, and I am the organization’s de facto communications lead.
Very understandable.
I think no one is questioning the hard work of MEaction peeps. Everyone who’s ever been involved in real activism, gets the toll it takes. It’s under recognised & under valued work bc it’s often done ‘behind the scenes’ & done by patients themselves. It can eat pwme alive. Been there done that.
I suppose the “doubt & questions” regarding support of the bill, stems from a fairly easy question:
why did MEaction not send out e-mails & a ‘help HR….!’ tweet to make the importance & URGENCY known to their members & followers?
Not everyone follows all advocacy. So people that are not in the Solve database but mostly/only follow MEaction tweets & Jen Brea tweets would have immediately known & would try & do whatever they could to contribute.
I get that things can go wrong, or things get ‘lost’ in the midst of other work. Or advocates are too ill.
But this bill seems to be of major importance.
Major, like nothing else before, as I understood from Cort’s blog.
I applaud Cort for his explaining and apologising. He should have reached out a bit more, go the extra mile to get in contact with you after getting 0 response from your co-worker. He should have sent the article to you first so you were aware & prepared & got your chance to explain.
But, when an “executive member” doesn’t respond adequately (twice) to valid questions about a major advocacy issue?
When the only person to get an answer from is you?
Cort could not have known this.
We all “know” Cort. All. Fan or no fan. We know his name & we know HR. We know he writes ME & CFS & Fibro etc related articles.
For many many years.
So when he asks clear & direct questions twice about such an important issue, at least a light bulb should go on.
‘We’ll get back to you on this Cort. Wait a bit. I’m going to discuss it with Jen’ for example.
Things would have been written differently then.
He was very passionate about this subject & got the brush off. From a major advocacy movement.
Which resulted in a (too?) harsh tone and a somewhat surprising ‘out of style’ article.
A lot of us will recognise this kind of reaction both in personal lives as in advocacy … adrenaline instead of energy … something triggers us too much for too long … so we react “out of character”. Which is not at all easy to deal with afterwards (probably the reason he deleted the original article).
But despite the “out of tone” article, Cort made efforts. Communication efforts. Not enough in his opinion. Perhaps that’s true. Don’t know.
The good part?
Everyone makes mistakes. And there’s sth to learn from mistakes.
A lot of MEaction people felt hurt you say. I’m sorry about that. Hard work for a huge community & then reading the article. It must have been rough & tough.
But I don’t think Cort should be the only one to take a look at his actions (or non-actions) and say ‘mea culpa’.
Good about the joined solve & MEaction statement/post … being planned.
Valid questions remain.
– why not alert MEaction members & followers immediately abt the bill with the sense of urgency it deserved?
– why the brush-off when asked about it? An executive member should be able to answer questions as well informed as you. Or at least refer matters to you when they don’t have an answer.
This was too important to dismiss.
That’s what I don’t get.
The combination ‘Cort’ & ‘the bill’ should have raised a sense of priority. But it didn’t.
To end with a positive note: “never too old to learn” & this issue does not question the commitment of MEaction & volunteers or staff.
In no way MEaction was portrayed badly imo.
Cort was genuinely wondering how this HR bill could not be (or didn’t seem to be) on the priority list.
And it seems that apart from Cort others asked themselves the same question.
It’s not a bad thing when people question advocacy groups now & then. It comes with the territory.
Stressful I know. You feel like ‘I’m doing soooo much (for them too) & they question our efforts?’.
You can dismiss it all or you could try to look at it objectively.
You’re trying to do that Jen. Look at it objectively. When you say you should communicate more about advocacy efforts.
But the main Q should be: how was it possible this got brushed off?
(Which is an organisational matter).
The past is the past – the future looms before us – let’s make best of it.
Elisa,
Excellent comment. Thank you.
Please don’t beat yourself up Cort. We need you to keep attending to your blog. It has been a great source of comfort to me in so many ways. You are only human after all! Always grateful for your hard work and commitment. Thanks a million.
I too agree with Winston!
I am so totally grateful for the work u do Cort, you are the 1 that I turn to for me/cfs updates and info and making sense of it. I’m in your court. Across the board, you have been awesome
I believe the introspection you engaged in will end up being a case of extending yourself, Cort, beyond your comfort zone.
That the tumble of feelings and questions that built up and burst forth are now going to be an impetus that adds a new depth to your discussions and interactions with others.
That it somehow might deepen your purpose and resolve as an advocate.
You have shown to yourself what you were before leaving below the surface.
Perhaps having an “another thing i want fixed” private journal so that you can give voice to your feelings, tho not necessarily so public— and then, recognizing that you have validated to yourself what you are feeling, be able to then look at what you want to do, and how.
i am glad i did not miss your blog, nor this ‘response’ blog.
i am in agreement with your choice to remove the earlier blog.
It was an example to me of the negative track we can get on, but how a mature individual can avoid derailing the train.
Kudos
A journal sounds good. Thanks for the idea.
I for one am so thankful for your passion Cort. If it wasn’t for all the hard work you have undertaken to produce up-to-the-minute information regarding ME/FMS I would have no knowledge as my doctor isn’t interested but I feel I can trust you and your research. I have to be honest here though, yes, maybe you were a bit hot headed with the blog post but you did reach out and didn’t receive any reply, they still haven’t answered anything that you addressed and still seem to be by-passing the whole thing. I won’t be donating anymore to any of them except to the OMF and yourself (monthly). Don’t beat yourself up for this, we have all done it, but hopefully because of this we will get answers as to why the other ME charities don’t seem to be shouting from the rooftops and backing the legislation for funding as it is totally baffling me, this is the biggest chance you will all get! The darker side of me thinks that if ME/CFS gets the funding it needs, their charities will become defunct and surplus to requirements.
Sharon, when Cort reached out, he did receive a reply. Two, in fact. The issue was that he was not satisfied with the reply. If I had been aware of what was happen, I would have gotten on the phone, but I did not. I do think part of my colleague’s reluctance to reply had to do with the email list the Cort got kicked off in the heat of his passion and emotion, and the number of our volunteers who were quite upset about that. I think everyone was just trying to figure out how to get their arms around the situation.
I am sorry we have lost your trust and your support. I can’t argue with donating to OMF—they are a wonderful organization. I do hope we can work to regain that trust.
I fail to see why you should apologize. You are right to call out MEAction for failing to take action on HR 7057. Instead of accepting responsibility and making this part of their platform they canceled you out and failed to explain why they aren’t doing anything. A true journalist presses and we are all on the same team but we need to pressure everyone to unite over legislation.
Jenn, I don’t know how many others feel as I do but there are two issues that caused me to lose trust in ME Action. One is its association with BLM (Black Lives Matter) and the other is its lack of financial transparency that began shortly after(?) receiving a large donation, or since late 2018(?). Please correct me if I am wrong about the time when disclosures ended. Can you please explain the connection between ME Action and BLM (Black Lives Matter)? And did the financials of ME Action come up in your latest discussions with Cort? In any case, are you able to update us on that or explain why financial disclosures ended at that time?
Just to be clarify the timing.
On July 18th I asked why ME Action wasn’t pushing the action as hard as possible. Laurie replied 11 days later.
I replied stating that MEAction’s lack of action was disappointing and saying that my expectation was that MEAction would be all over this, etc.
Five days later that issue in the group occurred and all hell broke loose. 🙂
Cort, reading all these wonderful comments, you must realize how much you are respected, admired and loved.
Where would our community be without you all these years?
God bless you, Cort.
Here, here.
Nah no need to apologise, ME Action Failed big time! They failed to answer your questions so too bad. That’s their fault. I stopped donating them money prior to your first post because I already was suspecting the same thing from ME inAction. I’ll sooner give my money to Solve ME/CFS and the OMF instead.
I know ME Action do good work, but they utterly failed on that bill. So that’s not your fault.
Anyway you’ve apologised once now. So I hopefully don’t see you apologising again. Once is enough.
It’s now ME Action’s time to prove they are focused in the right areaS.
Brendan, there were some major inaccuracies in the original post. Cort has done a brave and wonderful thing here in being so honest. But please trust that his account is true and so is mine. We had a wonderful conversation and I’m eager to move forward with a better understanding on both sides.
We absolutely think focusing on the NIH is crucial. There will be an avalanche of long COVID funding––to the tune of $100s of millions––with our without legislation. Guaranteeing that we don’t lose our ME/CFS-specific funding and that *maybe* we get some more is so, so important. But so, too, is making sure that the NIH intramural research and all longitudinal studies on Long COVID are designed in ways that involve our voice and will lead to real answers for both long COVID and ME/CFS—that is important.
The work of both our organizations is very, very important. Based on my experience of past years, both us and Solve ME/CFS are being *even more effective* in our respective areas because we can really focus. The decision we made here was strategic and designed help us have the greatest impact possible.
If you think both NIH and Congress work are important, support us both! We need the help the love and there is *so much* work to be done to ensure we can properly meet this moment.
If you think Congress is the most or more important, then yes, put your focus there. We all must fight for what we believe is right.
Ok good points, fair enough. I’ll reassess my viewpoint
Thinly you for responding
Thanks Jen.
We had an excellent conversation and I appreciate Jen’s generosity during that difficult time.
However this statement ” Based on my experience of past years, both us and Solve ME/CFS are being *even more effective* in our respective areas because we can really focus. The decision we made here was strategic and designed help us have the greatest impact possible.” left me with waking up again upset and frustrated. I have spent the morning trying to get it out of my head but it will not happen.
One reason I did not press MEAction on why they provided so little support for HR 7057 is that I could think of a good reason. I did not want a reason. I just wanted to move on. But a reason has now been provided – MEAction’s decision not to fully support HR 7057 was part of calculated strategic approach.
Here’s how I saw a strategic approach going.
Early on MEAction jumps on board the HR 7057 effort – using emails, tweets and Facebook posts that basically replicate what Solve ME had posted – to publicly rally its members to support the bill. During those posts it reminds its supporters that it has some impactful reports on the NIH coming up – thus generating interest in them.
When the reports are done MEAction uses them to support the advocacy action. By being more well informed the advocates are more passionate, more articulate and more effective. By tying its reports to the advocacy action – MEAction wins as more and more people read and appreciate its work.
The work that both MEAction and SolveME are doing is supported – and so is the advocacy action – the ME/CFS community, MEAction and SolveME all win.
I hope you can see how the dark thoughts started swirling. I had explicitly communicated my concerns twice to Laurie. I had described MEAction’s inaction as baffling, as disappointing, etc. I had asked for specifics. I had asked MEAction to act with the same urgency with this bill as it has asked the NIH to do with ME/CFS.
MEAction had a golden opportunity to tie it’s NIH work with an action to reform the NIH. It would have been so easy to do so. Even after being pressed to do so – it didn’t.
Then in the NIH discussion Ben, who is clearly very capable and very knowledgeable – was directly asked about doing Congressional actions – providing him to the opportunity to ask support the group (about 80 people) to support the action – and didn’t.
Meanwhile MEAction was very actively posting about the Americans For Disabilities Act while almost completely ignoring HR 7057.
Instead of a strategic approach I see missed opportunities.
One inaccuracy has been pointed out – the Facebook post issue which I corrected on the blog – and added a correction on this post.
I believe feedback and robust challenge, are crucial elements of healthy relationships/organisations.
I am naturally a serial avoider of confrontations but what I am seeing is: you Cort and Jennifer, doing your best to struggle with these really important issues, that have the potential to impact the future of ME/CFS funding, research opportunities etc
I don’t think there’s anything wrong in engaging in dialogue.
Re: Cort’s comment: Cort Johnson on August 23, 2020 at 8:14 pm
Cort, thank you for writing your comment. In all the back and forth that has happened subsequent to your first post on this, that core issue has never been successfully examined or addressed, in my opinion. I’m glad you’ve commented here.
While I can understand and sympathise with your decision to delete your original post, I don’t agree with having done that. Parly because there were *very many* valid (and important) issues raised by your post & heartfelt reader comments (especially including this issue you’ve commented on above), that are being lost or overlooked in the focus on ‘how’ you wrote your post, rather than ‘what’ you wrote. The efforts you’d made in response were more than adequate recompense, and a wonderful example of how that should be done – which is rarely seen in this day and age.
Removing the original post and comments doesn’t allow newer readers to have an informed view of this, and in fact waters down your actions which corrected it.
While I understand your dismay and remorse for coming across too negatively and not escalating to Jenn, and can appreciate your fervent wish to correct behaviour your conscience was bothering you about, removing your post hides the fact that the reason you took such steps in the first place (even if mistaken or misguided) WAS BECAUSE YOUR CONSCIENCE WAS BOTHERING YOU THERE TOO, and you couldn’t resolve the discrepancy, despite repeated efforts to do so. Based on the many reader comments on both articles, THIS IS STILL TRUE FOR MANY OF YOUR READERS TODAY.
The steps you took in correction were more than adequate to make amends, in my opinion. You:
1) diplomatically removed reader comments you felt were too inflammatory and would detract from the issue at hand;
2) renamed the post, removing any inflammatory language;
3) took responsibility for your own actions: you said where you had erred and took steps to correct that AND make amends
4) you went out of your way to compliment and support Jenn and MEAction.
5) You wrote a follow-up post which repeated all the above.
All are credit to you.
Given that I’ve seen nothing similar coming from Jenn or MEAction – especially in light of the serious accusations at least one of their senior people publicly levelled against you – and their focus on your ‘tone’ rather than adequately addressing the issue at hand, I’m not convinced this issue has, in fact, been moved forward in any substantive way.
In my opinion, the issues raised in your first post still hold water and are unresolved. I’m very sorry writing about them came at such a cost to you personally, I thank you for raising them and bringing much needed attention.
I’m with Anne on this… integrity and transparency unites people which will ultimately lead to the best possible outcome.. our greatest leaders are passionate yet humble, they make sure they are well informed and approachable. They make their motives known and own their actions. You Cort possess all of these attributes in spades. your selfless passion, intelligence, integrity, objectivity and communication style, has done more to help me personally and perhaps even the wider ME/CFS community as whole, than any other person or organization. I therefore Place my trust in you and your judgement. I hope you will do the same. Our brains may get caught up in ‘fight or flight’ mode Occasionally but trust your gut (for want of a better term) your instincts will be on point.
Let this one slide off your back. We love you Cort!
I always believed Cort was superhuman with his endless informative outputs and updates. All very well done. So perhaps this event has put a little tear in his cape……but….there’s no grounding needed…
Up, up and away Cort!
Takes courage to admit making a mistake. You’ve done a whole lot better than the US Gov this year. We’ve all gotten overly amped up about something, especially as negatively charged as the US is right now. You’re only human. You’ve apologized and made amends so forgive yourself and move on. You’ve provided such a fantastic service to so many people over the years I hope you know how much we respect you!
I do respect that even though Jen regained much (all?) of her health, she chose to remain an advocate for the multitudes that have no ability to “go to battle.” I’m sure it would have been easier to resume a full life and never want to think again about the horrors of this illness. So thank you, Jen.
And thank you, Cort. My admiration for your character and passion has only grown.
Thanks
Cort and Jen, I wanted to take the opportunity to thank you both for your passion and tireless support of our illness, even though ill (or having been ill) yourselves. Cort, your readers know this was uncharacteristic of you. You’re only human and yes, when one is ill, you can sometimes make mistakes (or even when not ill). I think back to my working career (30 years with CFS in the workplace, mostly competitive corporate jobs) and how much terror I would experience almost daily about making mistakes, or saying or doing something I would regret due to my brain fog and daily physical torment. Jen, you’ve been through so much and although cured, keep trying to help us all. Was so pleased to hear you gained so much health back. God bless you both and realize how much we all appreciate you.
Hi Cort, my response to your original blog and this update is to get my card out of my wallet and send you a donation!
I am so very grateful for ALL the work you do.
Cheers from Australia.
Thanks Gail! All the way from Australia.
Sometimes the emotional overload gets us all. Adrenaline is our enemy. Be well,
I would be surprised if there is anyone who has been doing advocacy work in this realm for a while who has not really regretted something that was said or done later on. So you are in good company.
I’m glad to see the situation with ME Action have been resolved, in any event. They’re a good organization.
For sure….
I am happy to read that ME Action is on the same page with Cort and Solve ME/CFS as to getting as much useful funding as possible now, and signing up more Representatives in Congress to aid in the struggle for funds for research on treatment and on cause.
Time will tell Sarah. Hopefully so.
Cort, I always read your blogs as they are informative, promote interesting discussion sharing knowledge and aim to be supportive. That you have felt the need to apologise (for something which I think needed saying) is indicative of your courage and honesty and will not hinder but enhance your wonderful work. I trust something good will come out of this to make you feel better.
I did not see the original post but I read this one and like the character I see in you. I, personally, see the value in pushing for research funding, but my every day concerns are surviving a pandemic and enjoying my health. I work very hard to be functional, no small feat with CFS and fibromyalgia.
I am very opinionated about research since I run an organization that sponsors national research on birth defects. We have track record of success with a tiny budget and sheer grit. It is not enough just to throw money at a problem. Some years ago, one of our senators from Florida held hearings on the billions going into cancer research with no great progress on the “why” cancer happens or the “how” of treatment. Cancer remains the second leading cause of death in the U.S. In my view, research should be funded in triplicate at three different institutions using identical protocols. This would do away with the “more study is needed” you will see at the end of every published study. If three studies don’t provide an answer, then it should be time to move on to another idea. Of all the studies for ME/CFS that are most critical, finding a cause(s) is the most important. Cause defines treatment. I believe that the new patient registry will provide insights on cause for a much lower cost than many traditional studies. I would encourage everyone to participate.
Based here in England, with the constant challenges of GET and CBT being foistered on us all – ME, CFS, PVS, PFS, post-parasite fatigue, etc, as well as the very confusing situation for the Covid Long-haulers who are variously told they should and shouldn’t follow ME/CFS et al related treatments (GET & CBT), I am just wondering how much the various ME groups – Cort, Jen, SolveME/CFS, as well as here in England, ME Association, et al are actually working with the new Covid Long-Hauler activist and medical research organisations to co-ordinate?
From what I’m seeing lots of medical and psychological ‘new’ research money seems to be being made available for the Covid Long-hauler phenomena, but many, if not most, seem fixated on the ‘novel’ aspect of the corona virus and ignoring the deep pre-existing research and treatment programmes of, for example, Ron Davis, the Australians at Griffith Uni, and so many others looking at genetics, mitochondria, deep blood issues, brain inflammation, etc, etc.
Are the Covid long-haulers seeing the ME research and advocacy groups as a poisoned chalice or are we just holding on to their coat-tails? Paul Garner (Prof at Liverpool Hospital for Tropical Medicine) has gained much profile as a long-hauler and sees the link, but institutionally?
Unity and the kind of rapprochement that Cort and Jen have engaged in and the influence of their profiles would suggest that combining forces would be something they could instigate well and not just in the US – combining initiative with the ME Association, Optimum Health, and others in the UK, and Emerge in Australia would enable huge influence with the WHO and could be a great way of putting the BPS numpties to bed so that we ME folk and the long-haulers might not suffer yet more harm, but actually get some effective treatment!
Well done on all you’re doing!
Great questions. I have not found making inroads to the long hauler community easy. I think SolveME and MEAction have gotten further. Just how they think of ME/CFS is a great question. There is nothing more powerful than a group of committed people.
Hi Trevor,
Wish I’d written that, I think it’s really good!
Hi Cort,
I second all the nice comments about you.
Also, I know you want to put this behind you, but are you open to posting about the Solve ME joint article that Jen mentioned? I’m afraid I’ll forget and miss that article if you don’t.
I forgot to add that no matter how this issue turns out, you and Jen have one thing in common: you’ve both been irreplaceable in my ME journey.
Thanks David. I absolutely will highlight that 🙂
ME/CFS reporting and advocacy is a very challenging field. It becomes harder when having a strong personal and emotional investment by have had or still having this disease. It becomes even harder to fight this struggle when still having this disease. For sure there are easier lives to be lived!
When something goes wrong and is outed publicaly and irrevocably, it takes a great man to equally publicaly and irrevocably offer his appologies and state how and where he was wrong. It takes an equally great woman to kindly accept those appologies and so quickly rebuild bridges.
Thanks Cort and Jen! We need you and owe you!
(If only the Pace Trial authors and publishers would have that courage, or the many thousands of doctors and paramedics that realized by now they might have been wrong but haven’t got as much courage as thousands who already did change their mind… …oh well, a man has to dream big sometimes doesn’t he?)
Cort, you shouldn’t have apologized. Your first article wasn’t harsh at all. It was balanced and fair and raised an important point. I had the same thoughts. Up to $60 million for CFS and no one’s talking about it?!?
I don’t know what the timescale is with HR 7057 but the way I see it, until the final whistle blows, there’s still an opportunity to get behind the Bill.
I’ve worked in many very volatile, highly sensitive situations with other people and things can potentially become fairly fraught.
I think one way of moving forward, is to find positive, constructive common ground to focus on, try and zip it (however difficult that may be!) when absolutely necessary and find some safe outlet to express all the pent up fury (often quite legitimate).
Currently I have a fantastic supervisor, and I can ring her up and say ‘I don’t want you to do anything about this, I just want to let off steam.’ I then have a cup of tea…
These are situations where generally people care and of course everyone, including me, thinks they’re right!!
One thing that does strike me about this discussion, is that there appear to be many informed and motivated people around. I don’t think it’s too late to harness that energy…
Hi Cort,
Long time no speak. ? Hope you are doing well, overall, my friend!
I did catch the original article, and have obviously read the follow-up above, too.
One thing that strikes me, is that maybe this incident (all other details aside) indicates the need for some kind of quick signaling between all of the ME/CFS advocacy groups. Some sort of a “bat signal” that could indicate that something bigger than all of your individual (somewhat discrete) concerns and priorities has suddenly shown itself on the horizon. After all, no one could have predicted this pandemic, or that layered within this tragic, confusing, complex time, might also lie the first real “organic” opportunity for the advancement of ME/CFS research and understanding.
I think your sense of urgency was real, and your sense of dismay at watching it pass, was accurately and acutely felt. After all, you (in many ways) represent an entire community of ill and neglected people, and you know that. That’s a lot of responsibility and pressure to carry, and, to watch such an opportunity not get met, inevitably causes a tear in a committed soul like yours. (With many unpredictable side effects.) And each organization that has formed to do the same, in any way, also carries some version of that same pressure, as well as the most central shared goal to help support and advance our community, in some way.
You may not always agree on all of the details around advocacy (that’s completely consistent with the complexity of life and reality), but I’ll bet you would all (especially now) agree that there are some opportunities that are going to come up, and sometimes quite fast, that you want to be sure to seize upon together.
My best suggestion: A ME/CFS Bat Signal! ?☀️ Or, a little red phone (something to that dramatic and effective effect) in all of the central headquarters of each member of a United Nations type ME/CFS cooperative (with one representative from each organization) to hammer out the approach (attack!) to shared goals/opportunities.
❤️