I found this in my drafts folder and have decided to publish it. Whitney Dafoe posted a rather annoying post on his Facebook page back in December 2020. I wasn’t aware that Whitney had said anything until I came across a post on the S4ME forum questioning why a link had been removed. The link in question was to Whitney’s comments on Facebook which can be found here. It starts with:
I feel ashamed. Not of any one individual out there but of the ME/CFS community as a whole for what some of us have done to Jen Brea. It is truly shameful and we should all feel this way. She has sacrificed so much, maybe more than any other ME/CFS patient in the history of this illness to spreading awarenes – making a feature award winning documentary film and starting and leading MEaction. She is also more recently trying to help figure out the newly discovered cranial issues that we now know can cause ME/CFS..
I am not sure why Whitney Dafoe is taking it upon himself to chastise the whole ‘ME/CFS Community’ for what ‘some’ of ‘us’ have done to Jen Brea. That seems like a harsh and unfair attack on the ‘community as a whole’. What exactly is the ME/CFS community? Does the ME/CFS ‘community’ include all those who have ME/CFS? In 2020, it was estimated that between 17 – 24 million people worldwide have ME/CFS. Is this the ‘community’ that Whitney Dafoe is referring to? To me, the very large number of people with ME/CFS worldwide is composed of micro-communities consisting of like-minded patients sharing similar thoughts, beliefs, feelings about the illness that has drawn them together in some manner.
Why is Whitney Dafoe lumping an extremely large number of people with ME/CFS together and chastising them for their behaviour? Why should patients with ME/CFS who have never criticized Jen Brea or don’t even know who Jen Brea is be admonished to feel ashamed of themselves? It is the people who have personally attacked Jen Brea that might want to reflect on their behaviour, nobody else. And for those who do know who Jen Brea is, they are entitled to have an opinion related to her film, her advocacy work and about her current beliefs as to the causation of ME/CFS whether these opinions are negative or positive. There should be a clear line drawn between a criticism of a person’s opinion as opposed to a personal attack on the person. I haven’t really ever seen any vicious attacks directed at Jen Brea, I have seen some undeserved rudeness but mostly I have seen people questioning her and at times I have seen Jen Brea push back as well.
I understand that Jen Brea has sacrificed a lot but I am sorry I think that those who have sacrificed the most are those who have lost their lives to ME/CFS (dying from the illness or by suicide), or those who are lying in darkened rooms 24 hours a day. There are so many patients we are unaware of because we simply don’t know that they exist. Jen Brea has sacrificed no more than many with ME/CFS and many have suffered and sacrificed much more than she ever has or ever will. Some live in poverty, she does not. Some are alone, she is not. She is one advocate of out many. Some have been so severely abused by the medical establishment they have taken their own lives. She has gotten what she wanted from the medical establishment.
In his FaceBook post, Whitney Dafoe states that we ‘now know’ that cranial issues can cause ME/CFS. Later in his post, he says:
Many of these same people who have attacked Jen seem to also “know” what causes ME/CFS and attack anyone with other ideas. I’ve got news for these people: YOU HAVE NO FUCKING CLUE. You are not an educated scientist; Even the world renowned scientists who are working on figuring out ME/CFS don’t know yet.
By using CAPS, he screams that people have no ‘fucking clue’ what causes ME/CFS because they are not an educated scientist. Is Jen Brea an educated scientist in the field of cranial nerves and related neurology? Is she a educated scientist in the field of ME/CFS. No to both. So on the one hand, Whitney Dafoe is stating that we now ‘know’ that cranial issues can ’cause’ ME/CFS and then states that even ‘world renowned scientists’ don’t yet ‘know’ what causes ME/CFS. Excuse my confusion but this makes no sense.
After chatising people in a totally confusing manner over ‘attacking’ Jen Brea, Whitney Dafoe moves on to people attacking Cort Johnson.
ME/CFS has a long, pathetic history of petty infighting and division over insignificant matters. Just a few years ago Cort Johnson was forced out of the forum Phoenix Rising he created and had to start a new website for his incredible journalism about ME/CFS. This has left Cort with a smaller audience and Phoenix Rising with a serious lack of content. I don’t care why this happened, I don’t even want to know. It’s just shameful and unacceptable for this kind of thing to be happening in a patient population that needs every bit of possible momentum and awareness to have a chance at a cure.
Whitney uses Cort’s history with Phoenix Rising as an example of ‘a long and pathetic history of infighting over insignificant matters’. If Cort leaving Phoenix Rising is so ‘insignificant’ why mention it at all?
Is Cort Johnson really producing ‘incredible journalism’. Once in a while he produces some good articles about the state of affairs in the world of ME/CFS. He also promotes useless alternative therapies which I am sure he, at times, gets money to promote. I won’t even mention the dodgy links he used to add to his articles on Phoenix Rising when writing about useless alternative therapies.
Whitney is right, he doesn’t know why Cort left Phoenix Rising and he should care, everybody should care. Since, I am privy to some of the details as I started volunteering during the time when he was leaving, I can certainly give some details. Cort was not forced out of Phoenix Rising. He agrees with this.
I am not going to go into any great detail but Cort decided to turn Phoenix Rising into a non-profit organization which means he had to have a non-profit Board overseeing the non-profit. This meant he would no longer control what happened at Phoenix Rising nor use the donated funds for whatever he pleased. Cort didn’t like the fact that the Board wasn’t going to pay him what he wanted for his articles. Basically, Cort had always used donations to pay for his bills and he lost control of that by making the website into a non-profit. The Board offered Cort a fair amount for articles and he declined. The Board also discovered some really questionable activity by Cort which their lawyer said not to advertise at the time. The Board was going to make an announcement that he was leaving but Cort went behind their back and made his own announcement without telling them. Cort also stated in 2017 in post on Phoenix Rising:
Except for a few people nobody knew why we split — we keep the reasons to ourselves and we both have continued to do that; i.e., I never posed a danger to PR.
As I said, the reason why the Board did not say anything why Cort ‘left’ PR is because at the time PR’s lawyer told them not to do so. Cort is extremely lucky that they weren’t allowed to say some of the stuff he did because if they had, I doubt he would be held in such high regard by some and I doubt some of the organizations who now support him would now do so. The only thing I am going to say was it was related to ‘donations’. I have seen time after time where Cort plays the victim in his demise on Phoenix Rising, scapegoating the Board, making it look like he was ‘forced’ out at times. He lied about why he was on moderation for five years, he gloated that his forum got the most traffic ever due to the people repeatedly denigrating myself and J. Edwards. Cort said the following about me when I resigned:
I highly doubt that the Board told Kina of their plans with the expectation that she would splat them over PR giving her own negative slant first. I believe that was an unethical thing to do – the mark of an angry person – not someone committed, at least at that moment, to well-being of PR or the Forums. It guaranteed that the discussion would not ensue in the kind of moderate, more reflective tone that I think most of us aspire to.
What a hypocrite. He posted on Phoenix Rising that he was leaving after he agreed to let the Board make an announcement. He didn’t tell them he was going to do so. He also started a website at the time which doesn’t exist anymore that had the purpose of slagging off the Board with lies. The Board did not tell me of their plans. Mark was well-aware I was planning to resign and he didn’t try to stop me. I was committed to Phoenix Rising which is why I was so hurt and upset at not being included in writing the new policies. I believed that the new proposals were going to hurt Phoenix Rising. Yes, you dumb arse, Cort, I was angry and it was justified. Cort Johnson isn’t a nice or an honest man.
Whitney goes on to say:
What keeps happening to exemplary people in this community like Cort Johnson and Jen Brea cannot continue. They are our leaders, or voice, our hope. If you want to help, then think about what is actually good for ME/CFS and put your energy into that instead of harming our progress for the sake of your ego or emotional needs.
I am sorry but Cort Johnson and Jen Brea are not our leaders, our voice, or our hope. Please don’t have the temerity to speak for all people with ME/CFS in the world.
Isn’t all the work done by various researchers around the world our hope? How is Cort Johnson our hope? In short, he is a blogger and really he doesn’t add much to the ‘community’ except blogs. Jen Brea is not our leader, our voice, or our hope either. She made a film about ME/CFS and my only criticism is that she made it more about herself rather than ME/CFS itself. She is a person who believes something anecdotal from her own experience. A leader does not insist that she is right, especially with no scientific formal training/education in what she asserts. She asserts much of the information on S4ME related to cervical issues is wrong. It’s incredibly easy to say that if you don’t have a good grasp on the science itself. Is it not possible that her cervical issues cause ME/CFS-like symptoms rather than causing ME/CFS itself? Research is needed, not just assertions based on anecdotes. As a result of her beliefs, patients are getting dangerous surgeries on their necks by really questionable doctors. It is wrong that anybody makes any assertions ‘that cranial issues can cause ME/CFS’ at this point and it is no wonder that people get upset at such an assertion especially made by a more prominent advocate.
Whitney went on to say in his FaceBook post:
Stop the self righteous, arrogant bickering, fighting, personal attacks and divisive tactics.
Then, Mr Dafoe, please follow your own advice and stop posting missives on Facebook that are both a personal attack on the ‘community’ and designed to divide. He then says:
Please. Think before you act. Treat fellow ME/CFS patients with respect. Stay open minded. Don’t engage in actions that divide us and denigrate our leaders.
Yes, Whitney, do think before you act. When you tell people to treat ME/CFS patients with respect, I would suggest that you don’t yell at people in sweary CAPS. Staying ‘open-minded’ is entertaining the knowledge that people should be able to criticize the words and ideas of others if they don’t believe in them and they might be harmful to the ‘community’. I don’t find Whitney’s post to be open-minded at all.
Let’s come together and work together for the common goal of ending ME/CFS. I know you are all alone and desperate. But I promise you significant progress is being made. Let’s all contribute to that progress rather than hinder it.
I wonder how Whitney believes coming together is going to end ME/CFS. We can all stand together and sing ‘kum ba ya’ but that isn’t going to solve ME/CFS when scientists can’t do it. Having conversations about what people believe related to anything ME/CFS is not going to hinder progress.
Judging by Whitney having tons of comments commending his words and making all sorts of rude and derisive comments about ‘these people’, it appears he is doing exactly what he is telling people not to. Dividing!
Let’s be real. A few people with ME/CFS criticized Jen Brea. If they personally attacked her, then they should be held accountable for that, not everybody.
Well, that’s all I have to say about that.
The Phoenix has Fallen 