Reprinted with the kind permission of Cort John and Health Rising
Whitney Dafoe’s painstaking and illuminating characterization of his descent into a severe illness, “Extremely Severe ME/CFS—A Personal Account,” was recently published in an edition of the Healthcare Journal that was devoted to severely ME/CFS patients.
Nobody to my knowledge has provided such a detailed account of what it’s like to be extremely ill with ME/CFS. It provides much room for thought and brought up some questions…Do stomach bugs tend to produce worse cases of ME/CFS? How about illnesses that are triggered in less developed countries? How are severe relapses generally triggered?
The First Hits
The first hit for Whitney Dafoe came in 2004 when he started experiencing a dysautonomia-like symptom – lightheadedness – which worsened after exercise when he was 21. Note that this problem occurred outside of an infection or other event. Something had slipped but no one knew what. Aside from that odd problem, he was apparently fine and was able to travel internationally.
While in India he had a “mild cold that never really took hold” for about 2 weeks but then came the first big hit – a mild case of diarrhea which nevertheless left him exhausted and with “severe ME/CFS.” Whether that was a sign of a propensity to an immune over-reaction or something else, the fact that some sort of mild stomach flu evoked such a dramatic reaction was probably a bad sign.
Some strange problems were adding up but there was no cause for alarm. Returning to the States after a bout with pneumonia, he recovered to about 80%. Traveling to Guatemala in search of a cure after another case of “mild” diarrhea, his stomach shut down (we will see that theme again), and again, he lost all energy. That unusual reaction to what appeared to be a relatively mild bug indicated something strange was going on.
His journey, thus far, is in keeping with what we see in many long-COVID and ME/CFS patients. One of the more interesting findings to come out of long COVID research to date is that there’s clearly need for some spectacular onset. Even the cold symptoms don’t need to be particularly strong. In fact, it appears that some people who didn’t experience any flu-like symptoms during the initial infection later came down with long COVID. That suggests that some people with ME/CFS who didn’t appear to have an infectious trigger may have had a hidden one.
A bit weaker and with his stomach still impaired, Whitney felt strong enough to hit the streets fundraising for an environmental organization but then tanked. This time it wasn’t a bug that triggered a relapse – Whitney simply overdid it – the first time this occurred. Interestingly the same symptoms he associated with the stomach bugs popped up. His body appeared to be producing them in response to exertion as well.
Now it got pretty serious. For 2 1/2 years, he was mostly housebound. (Whitney’s statement that he now had “moderate” ME/CFS underscores how off the charts ME/CFS patients functionally are compared to most other diseases. In how many diseases does being housebound constitute a moderate case?) After Whitney reluctantly moved back into his parents’ house, his ability to regulate his activities more, however, allowed him to improve a bit. Things were on a bit of an upswing.
The Big Hit
Then the autoimmune drug Rituximab (Rituxan) apparently threw his immune system into disarray, and he fell off the cliff.
After Rituximab, he was in a different situation entirely. Before Rituximab, he would overdo it, rest, and more or less return to baseline. After Rituximab, it was if once his reserves were used up – they were gone. Rest did not result in replenishment. If he overdid it, he would get worse and tend not to recover. This is where Whitney’s story probably diverges from many other people with ME/CFS.
He quickly developed new symptoms (pain in his leg muscles, unable to speak, hardly able to text, had difficulty tolerating small amounts of stimuli). He was still ambulatory, though, and was able to walk out to the yard or kitchen, and then later relied upon a wheelchair.
Whitney’s Rituximab downturn highlighted the powerful role the immune system is playing in his illness. While Rituximab is generally regarded as a powerful, but generally safe drug, it does deplete B-cells, and can induce low white blood cell and IgM/IgG levels, and probably many things we are unaware of.
Whitney’s Rituximab experience also points out how heterogeneous a group we are. While we now know that Rituximab is not a suitable treatment for ME/CFS, some people did get better on it.
About a quarter of the patients taking the drug in the phase III trial experienced a “serious adverse event” which required hospitalization, but because 19% of the placebo group also experienced a “serious adverse event,” the vast majority of which also required hospitalization, the drug didn’t appear to be causing significant problems. The authors concluded that “few (of the) serious adverse events had a suspected or probable relation to the study drug.”
While it’s frightening watching someone descend into the kind of hell that Whitney fell into, note that Whitney’s big crash was triggered by a bad reaction to a powerful autoimmune drug – something most people with ME/CFS/FM will never experience.
The Next Hits – An Emotional Event and Stomach Problems
Next, an emotional event sent him spiraling downward and he became bedridden – where he has been ever since.
Next up, the switch from yogurt – an important source of nutrition for Whitney – to turkey patties was too much for his already very fragile stomach. Ironically, his stomach had slowly been getting better. Ironically, the problem again resulted when he made a switch to something he hoped would help. It made sense that eating a higher protein food might help, but the more difficult-to-digest food had a dramatically negative effect. Whitney noted that it was as if his stomach had PEM (protein–energy malnutrition).
With most of our energy going to simply keeping our bodies alive, and digestion taking up about ten percent of our energy usage, digesting food carries a high energy burden. It’s one of the most energy-intensive things we do – and it’s why small meals are preferred.
When Whitney switched from yogurt to turkey patties, he began taking in a food that required much more energy to break down.
Whether that was the issue, Whitney’s already fragile stomach broke down and he was able to eat less and less and less without extreme discomfort. Eventually, he had to stop eating at all and was put on a PICC line which fed him intravenously.
Whitney’s ME/CFS probably didn’t begin with stomach issues. The first warning signs showed up when exercise brought on light-headedness – but after that, stomach problems have featured in three significant relapses. They also seem to be present in quite a few severely ill people.
The Transition from Severe to Extremely Severe
Whitney was mostly bedbound, was unable to speak, and was on a PICC line when another incident tipped him over yet another ledge. Allowing the film crew from Unrest to film him when he had recently overdone it was the straw that broke the camel’s back.
After that, he could no longer write or even use his prewritten cards to communicate. In fact, he almost couldn’t communicate at all. Except to go to the hospital, he has not left his room nor spoken to another human being in seven years. He hasn’t eaten food or drunk liquids in six.
Unable to communicate, read, text, etc., Whitney had become almost completely isolated. Noting that negativity made things worse, he turned to mindfulness training. Mindfulness wasn’t an answer for his physical problems, but he said it was crucial in helping him get through the hell he was about to go through.
“I realized that if I could put a negative tint on everything, I could put a positive tint on everything too. I began practicing and training my mind to think more positively. It was not easy and took practice, but this eventually became integrated into how I saw and thought about things. It was crucial for what I wound up going through.”
It’s easy to see how the stress from engaging in negative thoughts could have such an effect. Stress triggers cytokine activity and inflammation, and potentially symptoms like pain and fatigue, in much the same way that infections do. It also activates our fight/flight (sympathetic nervous system) response, increases our heart rate, and mobilizes our energy stores for action.
Being stressed or upset is simply an energetically expensive state to be in – precisely the kind of state Whitney could not afford to be in. He did everything he could to avoid that.
The Mental Crash – A New Distinction
He entered a new phase with his “mental crashes” and linked – in what I think is a key insight – the mental crashes to his low energy state. At this point, he was so energy-depleted and weakened that, as noted before, simply having thoughts about something negative – or even sometimes anything at all – could have devastating effects.
“I was in a nightmarish situation where my mind started playing tricks on me, flashing subjects I could not tolerate thinking about into my mind at the worst times and causing mental crashes. I was completely lost in a corner of my mind trying to keep my brain activity to a minimum. It was horrific.”
He even became unable to tolerate mental stimuli like patterns on a shirt. He couldn’t do something “complex” like moving if his brain was attempting to also attend to something like a noise. This is a brain that was so depleted that it couldn’t handle more than one simple task at a time. Even one task took special mental effort (see below). I wonder if the medical profession has ever been acquainted with problems quite like these.
“I couldn’t tolerate any colors or patterns on them. I also became sensitive to text like logos or labels on things because it is impossible not to read text that you see; it is something we do instinctually at this age. Reading required more mental energy than I had and caused a mental crash. Due to crashing from the text I could read in my room, I wound up becoming sensitive to text I couldn’t read as well. Just knowing it was there was extremely stressful.”
One can see Whitney’s brain reaching out to attempt to decipher the words, leaving Whitney recoiling in pain. Note that that action – attempting to decipher the words or patterns on a shirt – was done below the level of consciousness. Most of the actions our brains have us take, occur, in fact, below the level of consciousness. They are more or less automatic.
The hot flush he experienced when stimulated too much suggested perhaps a mast cell or adrenaline / autonomic nervous system reaction when Whitney became overstimulated.
“The symptoms of this type of mental crash were usually a hot flush starting in the back of my head and moving down through my whole body, followed by an adrenaline release that temporarily made me a little better but was later followed by my mind getting much worse.”
It wasn’t just negative stimulation. Even good stimulation could overwhelm him.
“As I said, during this time, my brain was extremely sensitive to crashing from the tiniest extra interaction with caregivers, or even thinking about the wrong thing, or from thinking about something for too long. I put all my focus on being perfect and then, if nothing went wrong at night when my caregivers were gone for a long period of time, all night, I could think a little bit.”
Whitney noted how difficult it was to have someone in the room. It clearly would have been easier to have a dog in the room. There’s so much less to think about with a dog. There’s so much more packed into a human voice than, say, a dog’s bark. As Whitney pointed out, it’s the complicated connections that probably took up too much of his brain’s energy reserves that were the most problematic.
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“Having someone in the room, especially, puts me over my limit. The combination of thinking at the same time is extremely overwhelming. I have to meditate on a couple simple ideas or memories, and if my mind strays, even for a moment, it can be devastating.
The stimuli, whether it is a sound, a sight, smell, or touch, could connect my mind to something and it was this connection that often pushed my mind over its limit. The sound of people talking, for example, was too much human connection for me to tolerate. Interestingly, it was much easier to tolerate hearing people I didn’t know, like neighbors, talking. This is because it caused much less thought because I didn’t know the people.”
This is a key insight that appears to lead back to a brain activation pattern, which in turn, seems to lead back to an energy production problem. This is why ME/CFS seems more a disease of insufficiency than anything else. When Whitney’s brain was overwhelmed, he would recede … and exist in a kind of limbo state. In the dead of night when everything had gone right and he was utterly calm and at rest, though, his brain had the “energy” to work properly, and he could think.
“I let my mind wander. I usually thought about making things. I have a whole business plan for multiple restaurants, buying and fixing this local natural food store, and lots more. I also thought about art projects in-depth, of course. I lived for that time of daydreaming at night and somehow made a sort of life out of it.”
Whitney’s greater difficulties during the day when more stimuli were present made sense given what we know of ME/CFS/FM. People with ME/CFS/FM have to exert more energy and use more sections of their brains to process outside stimuli. They also have trouble shutting off attention to innocuous outside stimuli – hence Whitney’s need to use ear and eye protection to remove all possible stimuli.
While Whitney is at the very end of the spectrum functionally, his experiences make sense with what we know about this disease.
Visualization Helps – Thinking Does Not
Thinking about moving didn’t work, but at times visualization did.
“If I thought about any movement too much, it became extremely difficult to do because anything intentional was difficult or impossible. I used various methods over time. One was to visualize the movement I was going to make over and over until suddenly my mind released the necessary adrenaline and I could tell that I could do it safely, and then I could pick it up with no problem but had to follow my pre-visualized movement.”
It was as if visualization temporarily cleared a path in his brain to take safe action. When we move, our brain, without our knowing it, actually plans out our movements ahead of time.
Visualizing the movement may have helped that process – smoothing things out so that he could take very small moves without causing problems. (At this point, Whitney’s system could be discombobulated by having to make small moves in bed.) Athletes know that thinking only gets in the way of excelling in their sport. The goal is to be mentally clear and let the movement happen naturally.
That highlights the fact that thinking about a movement is very different from actually moving. Thinking about that possibly perilous action may have brought up all the pain, etc. that was possibly associated with it, causing Whitney’s brain to put a chokehold on movement. Whatever was going on, visualizing, on the other hand, was a dramatically different way of approaching the movement problem.
Note that while energy problems were there, something other than a strict energy problem was also in play. The energy to do the action was there if it was visualized beforehand.
“Crash Memories” Make Things Worse
“If I crash or get hurt from something, my mind gets what I think is a form of physically induced PTSD caused by my stress or fight/flight response being turned up as high as they could go. When I crashed from something, I developed a stress response to it and became sensitized to it, so I had to be very careful not to crash from the few things that I was able to do or think about. These ‘crash memories’ slowly built up over time.”
Our brains have a kind of shorthand trick they do. Instead of meeting a situation newly, they take a situation, relate it to a similar situation that happened in the past and then pump in thoughts, feelings, attitudes, and actions associated with that situation. This is a completely automatic response that goes on underneath the level of consciousness.
Consider what happens, though, when virtually every situation evokes danger. Everything evokes a stress response, which then eats up more energy reserves, produces more pain and fatigue, and creates a crash. Perhaps it causes the “crash memories” (to) slowly build up over time.” Trying to push through this further reactivates the stress response – causing the “crash memories” to build up even more – and producing further debilitation.
Visualization helped Whitney bypass those crash memories to some degree, but it was two central nervous system acting drugs that had the biggest impact.
The Ativan/Abilify Effect
“The Klonopin and Ativan I later took helped me reset these Crash Memories, so they didn’t build up. I’m now able to crash from something and let it go and do it again (with the same energy limitations as before, but no added stress or limitations).”
Whereas Whitney’s brain was stuck before in a kind of defensive, PTSD-like state, it was now able to calm down a bit.
Both Whitney and his parents dreaded him having to go to the hospital but taking Ativan (lorazepam) changed that.
“Going to the hospital, especially for the first time, was incredible. I had no idea Ativan was going to have such a profound effect on me. I was preparing to get way worse and have a terrible time and crash horribly. Instead, I improved and was calm and got to enjoy things like seeing the sky for the first time in 6 years: all the sights of the real world out the window of the ambulance.”
Lorazepam (Ativan) is a benzodiazepine used to reduce anxiety and calm the brain down. Interestingly, instead of dulling the brain or hammering it into submission, it stimulates the inhibitory pathways of the brain. Ativan triggers the expression of the brain chemical GABA, which then inhibits the excitatory brain chemical glutamate. In 2013, Marco proposed that glutamate toxicity played a role in ME/CFS.
Unfortunately, Ativan can only be used for a short time, but it can work wonders when used – as Whitney did – to get through difficult situations. Klonopin is another GABA-enhancing benzodiazepine that many people with ME/CFS/FM have found helpful. (It can result in dependency and cause withdrawal problems.)
rTMS is another potential therapy (which is being studied in conjunction with Ativan) which inhibits brain activity by exciting (in a different way) the inhibitory circuits in the motor cortex. The Solve M.E. Initiative is funding an ME/CFS pilot rTMS trial.
Problems with underperforming inhibitory pathways in the brain seem to be a problem in these diseases. In fibromyalgia, the pain inhibiting circuits have difficulty reining in the pain-producing circuits. In ME/CFS and FM, the inhibitory arm of the autonomic nervous system – the vagus nerve (parasympathetic nervous system) – is not controlling the sympathetic nervous system. The prefrontal cortex may not be correctly damping down fight/flight messages coming from the limbic system in ME/CFS and FM.
Abilify had an even more dramatic effect than Ativan. In 2019, Whitney started off very slowly and ramped up from .25mg to 2.0mg over about six months. A month or two later, it began having an effect.
“Abilify seemed to be changing something at a deeper level. I had more energy and could slowly tolerate more things that used to cause me stress. For the last 6–7 months, I have continued to improve, tolerating more and more things that used to make me crash from stress and over-stimulation.”
It was a matter of degree. Whitney is still bedbound, is still on a feeding tube, and isn’t talking to people, but he can stand in the shower, produce a piece like this, etc., and tolerate so much more.
Tracing Abilify’s specific effects in Whitney is impossible given that: a) it affects so many different receptors (5-HT1A, 5-HT2A, 5-HT2B, 5-HT2C, and 5-HT7, dopamine D2 and D3, adrenergic α1a, and histamine H1 receptors); and b) we have a general lack of knowledge about how drugs like this affect the brain; i.e. (“How its unique intracellular signaling effects impact clinical symptoms is not known”).
It’s interesting, though, given the focus on mast cells, that Abilify came out of a search for better antihistamines. It’s also believed to rebalance the dopaminergic system. Plus, recent rodent studies suggest that Abilify may also have some interesting energetic impacts and may “impact insulin, energy sensing, and inflammatory pathways” in the hypothalamus. If Abilify is impacting neuroinflammation, hopefully more effective “Abilifys” are on the horizon as efforts to find more effective neuroinflammation busters have ramped up in several central nervous system diseases.
Vyvanse (Lisdexamfetamine) is a different kind of drug – a stimulant – which induces the release of dopamine and norepinephrine, which paradoxically have calming effects on people with ADHD (attention deficit hyperactivity disorder) and worked well in one ME/CFS study.
Whitney has a long way to go, but he’s come far from being just strong enough to bear witness to what he called his “state of non-existence.” So, what is his story telling us?
I believe it’s suggesting that in some cases ME/CFS may be laying down its tracks long before it reaches up and throttles a person’s functionality. His story is certainly drawing attention to the role the stomach may play in the severely ill. It’s demonstrating that the size of the initial trigger doesn’t necessarily bear any resemblance to the ferocity of the illness that may be unleashed later.
It’s suggesting that the immune system probably plays a core role, that an activated stress response can make things worse, that visualizing may be able, at least to some extent, help with movement, that ME/CFS seems to be a condition of insufficient energy production and probably some really bad wiring.
Most astonishingly and encouragingly of all, it indicates that Whitney, immobile, masked and earmuffed, fed by a PICC line and hardly able to communicate, was waiting there all the time to re-emerge when the conditions were right. Whitney is still not talking or walking, but he is indubitably there and thinking clearly, and as Stephen Hawking did, finding ways to communicate
His story is also demonstrating how much we don’t know. Why did Whitney respond so poorly to Rituximab when others did not? Why, when Whitney was at his worst, did Ativan and Abilify work? And when they did work – why didn’t they work even better than they did? What other central nervous system-acting drugs might help?
My guess is that researchers and doctors will be able to mine Whitney’s inside story of having extremely severe ME/CFS for quite some time to better understand and ultimately treat this puzzling disease.
About the Author: ProHealth is pleased to share information from Cort Johnson. Cort has had myalgic encephalomyelitis /chronic fatigue syndrome for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.