Researchers haven’t explored the impact that emotional stressors or their opposite – uplifts – might be having on health in ME/CFS, but perhaps they should. The stressors associated with chronic fatigue syndrome (ME/CFS), after all, can be immense and more severe
With both of the stress response axes in the body dysregulated, is it any wonder that “hassles” or “uplifts” might have an effect in ME/CFS?
in ME/CFS than in diseases like heart failure, multiple sclerosis, or depression. Another study noted the high psychosocial burden that ME/CFS/FM patients face. A 2002 paper concluded that ME/CFS/FM was a more difficult disease to handle than rheumatoid arthritis or multiple sclerosis. People with ME/CFS had a higher frequency of hassles, higher emotional impact, and higher fatigue, pain, depression, and anxiety levels compared with MS/RA patients.
While this paper emanated from a CBT/GET practitioner, the conclusions made sense given what we know of the extreme impacts on functionality ME/CFS can produce. The three main “hassles” found in ME/CFS – dissatisfaction with oneself, insecurity, and a lack of social recognition – might naturally emerge from a disease characterized by low functioning.
All this, in a disease where unpredictability reins and where both of the major stress axes of the body (HPA axis, autonomic nervous system) are dysregulated and the fight/flight response is amped up. How could emotional stressors not have an impact?
The Study
The “Uplifts and hassles are related to worsening in chronic fatigue syndrome: A prospective study” 6-month study followed 128 adults – most in their 40s, who were mostly unemployed or on disability (67.9%), and most of whom had been ill with CFS for well over a decade. The Fatigue Severity Scale, the SF-36 functional scale, the Global Impression of Change, and the COMPASS autonomic symptom scale were used to assess symptoms. Fred Friedberg, a researcher with ME/CFS, led the study.
Hassles and uplifts were measured with, you guessed it, a Combined Hassles and Uplifts Scale (CHUS) which contains 53 factors. Hassles are defined as “irritants—things that annoy or bother you; that can make you upset or angry.” Uplifts are defined as “events that make you feel good; that can make you joyful, glad, or satisfied.”
The scale lists aspects of life ranging from children to health to sex to workload, job security, money, physical appearance, exercise, news events, political issues, neighbors, car maintenance, legal matters, entertainment, etc. Participants are asked to rate how much of a hassle or uplift an item was that day (1 – somewhat), 2 – quite a bit), to 3 – a great deal). The factors were then divided into social and non-social events and analyzed over the six-month period.
The Global Impression of Change scale was used to assess improvement or decline over time.
Results
Improvement over six months was associated with more uplifts while getting worse was associated with more hassles.
Over six months, 29% of the participants improved, 33% were unchanged, and 38% worsened. Perhaps because most people were too ill to engage in many of them, no trend was seen in the social events.
THE GIST
- Not only is functionality significantly more impaired in ME/CFS than in diseases like heart failure, multiple sclerosis, or depression but a 2002 paper concluded that ME/CFS/FM was a more difficult disease to handle than rheumatoid arthritis or multiple sclerosis. Add that to a disease characterized by a dysregulation of the two major stress axes in the body and you begin to wonder why either emotional events – either good or bad – might not have an effect.
- The “Uplifts and hassles are related to worsening in chronic fatigue syndrome A prospective study” 6-month study followed 128 adults – most in their 40s, who were mostly unemployed or on disability (67.9%), and most of whom had been ill with CFS for well over a decade to see if “hassles” or “uplifts” were associated with worse or better health.
- Hassles and uplifts were measured with, you guessed it, a Hassles and Uplifts Scale (CHUS) which contains 53 factors. Hassles are defined as “irritants—things that annoy or bother you; that can make you upset or angry.” Uplifts are defined as “events that make you feel good; that can make you joyful, glad, or satisfied.”
- Over six months, 29% of the participants improved, 33% were unchanged, and 38% worsened. The worsened group, though, experienced significantly more hassles while the improved group experienced significantly fewer hassles. With regard to uplifts, the worsened group showed a significant decrease in uplifts compared to the improved group.
- The authors suggested trying to find “pleasant, enjoyable, low-effort activities” that are often lacking in the lives of individuals with debilitating CFS. While the authors agreed that “it may be challenging for patients to thread the needle to eventual illness improvement via greater uplifts, fewer hassles, and other positive self-management activities”, they suggested making a list of 10 pleasant low-effort activities and trying to incorporate them several times a week.
- The results jived with an earlier study which found that having fewer uplifts was associated with either no improvement or worsening over time in ME/CFS. That study found – rather shockingly – that healthy pacing and limiting the push-crash cycle did not result in improvements over time – only having more uplifts did. The improvements were not spectacular – about a 15% improvement in fatigue – but every bit helps.
- The authors noted that a pilot study of HRV biofeedback in fibromyalgia resulted in clinically significant improvements in pain and functioning at 3 months, which suggested that smartphone apps that employ HRV biofeedback may be helpful. (Some of these include eSense Pulse, Tinké, EmWave2, MindMaster Bio 6, and Flow HRV.) Vagus nerve stimulation, meditation, breathing exercises, exercise in moderate amounts, uplifting experiences, etc. can all improve HRV.
- Lest anyone think that these results apply only to ME/CFS, other studies have found that uplifts and their opposite – hassles – can affect immune functioning even in healthy people. One study found that hassles were associated with greater inflammation and hypercoagulability – two potential issues in ME/CFS – in healthy people while uplifts were associated with decreased hypercoagulability.
- While the study’s results were modest – a 15% drop in fatigue – they did suggest that finding a way to have more uplifts can be helpful and that while pacing is clearly helpful, something more can be helpful.
- Note that this study wasn’t designed to increase uplifts – it was designed to monitor them. Intentionally including more uplifts could be more helpful. Indeed, we’ve seen that by using practices that seek to do so, such as Ashok Gupta’s Amygdala and Insular Retraining program, some people are able, through various mind/body means, to take enough stress off of their stress axes to get better or even, at times, recover.
The authors suggested trying to find “pleasant, enjoyable, low-effort activities” that are often lacking in the lives of individuals with debilitating CFS. The authors agreed that “it may be challenging for patients to thread the needle to eventual illness improvement via greater uplifts, fewer hassles, and other positive self-management activities”. They suggested, though, that patients make a list of 10 pleasant low-effort activities and then attempt to create a flexible schedule in which they participate in pleasant activities at least several times a week. They noted that 1/3 of their (often homebound) study participants were able to engage in enough uplifting activities and able to reduce the intensity of their hassles to consider themselves “improved.”
The results jived with an earlier study which found that having fewer uplifts was associated with either no improvement or worsening over time in ME/CFS. That study found – rather shockingly – that healthy pacing and limiting the push-crash cycle did not result in improvements over time – only having more uplifts did. The improvements were not spectacular – about a 15% improvement in fatigue – but every bit helps.
That people who improved also demonstrated increased heart rate variability (HRV) over time – suggesting that finding ways to improve HRV might be helpful. (The Oura ring, Garmin watch, and other wearables can measure HRV). Reduced HRV is associated with increased sympathetic nervous system activity; i.e. increased fight or flight and hypervigilance and reduced parasympathetic nervous system activity (rest and digest). (Note that even with the improvement, the ME/CFS participants’ HRV overall was far below that of healthy controls).
The authors noted that a pilot study of HRV biofeedback in fibromyalgia resulted in clinically significant improvements in pain and functioning at 3 months, which suggested that smartphone apps that employ HRV biofeedback may be helpful. (Some of these include eSense Pulse, Tinké, EmWave2, MindMaster Bio 6, and Flow HRV.) Vagus nerve stimulation, meditation, breathing exercises, exercise in moderate amounts, uplifting experiences, etc. can all improve HRV.
My HRV dropped dramatically for an unknown reason about a year ago but is now finally starting to inch up again. Long meditation sessions in the morning may be helping as I’ve seen my HRV significantly creep up during those sessions over time, as measured by an Oura ring.
The results suggested that two evidenced-based therapies called Behavioral Activation and Acceptance and Commitment Therapy might be helpful as well. In these therapies, participants identify the most rewarding or uplifting activities and ways of being and find ways to focus on them. Focusing on values (kindness, trustworthiness, acceptance, generosity, etc.) can reduce the significance of hassles.
Note that hassle and uplift studies tend to refer to the “perception” of hassles and uplifts. Our perception of an event is what turns it into more or less of a hassle or uplift. Finding ways to reduce the “hassle” intensity of an event ( i.e. “did I really need to get so upset”?) could be helpful as well.
Tara Brach’s RAIN technique and Dr. Judson Brewer’s Unwinding Anxiety program, which offers free weekly group sessions, are two techniques that come to mind.
Lest anyone think that these results apply only to ME/CFS, other studies have found that uplifts and their opposite – hassles – can affect immune functioning even in healthy people.
One study found that hassles were associated with greater inflammation and hypercoagulability – two potential issues in ME/CFS – in healthy people while uplifts were associated with decreased hypercoagulability. An almost 1,000-person study that found that interpersonal uplifts were the most helpful concluded that “daily positive events may serve a protective role against inflammation.”
Chronic interpersonal stress was not only associated with greater production of one of the major pro-inflammatory cytokines (IL-6) but with – and this may particularly apply to ME/CFS – the inability of the HPA axis to rein in inflammation (in rheumatoid arthritis (RA)).
Striking a bit closer to home, a fibromyalgia (FM) (and osteoarthritis and RA) study found that more negative events predicted more fatigue, whereas daily increases in positive events predicted less fatigue in all diseases.
No one is saying that maintaining a more positive mood is easy in diseases like ME/CFS/FM. One study, in fact, found that doing so required more work in system-wide diseases such as FM and RA than in more localized diseases like osteoarthritis.
Still, it can be done. In the “mindset” portion of Patrick Allard’s recovery story, he described engaging in “a sustained joyful schema” (i.e., experience daily events as uplifts rather than hassles; Friedberg et al. 2022), daily morning mantra on personal goals and values (performed in nature) and “an acceptance of uncertainty associated with living with ME/CFS and unshakable trust in my own resilience.” He also regularly watched Raelan Agle’s recovery story YouTube channel to get inspiration.
While the study’s results were modest – a 15% drop in fatigue – they did suggest that finding a way to have more uplifts can be helpful and that while pacing is clearly helpful, something more can be helpful.
Note that this study wasn’t designed to increase uplifts – it was designed to monitor them. Intentionally including more uplifts could be more helpful. Indeed, we’ve seen that by using practices that seek to do so, such as Ashok Gupta’s Amygdala and Insular Retraining program, some people are able, through various mind/body means, to take enough stress off of their stress axes to get better or even, at times, recover. (Gupta’s program recently did well in a long-COVID study. A blog on that is coming up.)
Fred Friedberg – the lead researcher in the study who has ME/CFS – has long explored how lifestyle choices can help or hinder ME/CFS. His 2010 book “Seven Proven Steps to Less Pain and More Energy” focuses on lifestyle balance.
Interesting! I’ve noticed how much easier it is to do something fun and exciting than to do something stressful and boring (like work) many many times over the years and always felt guilty about being able to do more fun things than things I ‘should’ do. Silly to feel guilty, I guess, but that’s living in a capitalist society for you! It will be much easier to focus on doing more of the fun things guilt free now that there’s research to back it up!
I’m going to do a conclusion to Donna Jackson Nakazawa’s book “The Last Best Cure”. She had a severe autoimmune disease which for a time left her partially paralyzed. After nothing really worked for her she turned to mind/body treatments and spent a year on them – and then had her immune tests redone. The results were interesting!
Firstly, me/cfs is a complex neurological condition, and doing a few nice things is a ludicrous treatment suggestion for many reasons, primarily if we had the energy to do enjoyable things we wouldn’t be sick with me/cfs.
Secondly, correlation does not equal causation. The improved group did more uplifting things BECAUSE they were improving and could do more nice things. It’s not what caused their improvement.
Thirdly, attempting to do more uplifting things, when uplifting things are beyond out energy envelope is a great way to induce PEM and potentially crash, which is actually guaranteed to make us worse, either temporarily or long term.
Fourthly, Cort, why are you giving air time to such junk science, purported by a CBT/GET practitioner no less?
Fifthly, studies like these are designed to support the psychological model that it’s all in our heads, and so if we’re not seeking uplifting experiences (that would actually be detrimental to our health) then we’re not trying hard enough to get better.
Finally, pacing may not have been associated with improvement, but it sure helps avoid PEM and crashing, which definitely make us worse.
I think I may start from a different place. Despite the fact that I’ve reported on many, many studies that show problems with energy production, brain, immune issues, etc. when it comes to treatments I don’t start from that body of facts. I start from what I’m hearing, and, although, I haven’t had the luck to recover using mind/body techniques there are many reports – both anecdotal as well as some study reports – that these things can help. You can come across numerous patient reports of how mind/body stuff helped people – some of them quite ill – to recover (Check out Raelen Agles You Tube channel).
Long ago, I had disturbing thought that what if I because of ideological reasons failed to report something that could have helped someone get better or even get well? Honestly, God forbid that ever happens! So, while I believe that for most of us the cure will take understanding the biology behind ME/CFS finding a cure for it I’m very agnostic about treatment.
While one study that was referred to in this blog was by a CBT/GET practitioner, the lead researcher of this study, Fred Friedberg has had ME/CFS for many years and has led the IACFS/ME for quite some time. ‘
I think it’s great that you report about all angles. I don’t understand why this extreme either/or mentality is so ingrained in our world and also in science. It leads understandably to a lot of fear in the me/cfs community that everything goes back to this disease being seen as psychosomatic. But this fear could indeed be detrimental to remission/recovery/improvements.
In people with diagnosable autoimmune diseases stress is a big trigger for most to cause flare ups. And using nervous system regulation and psychological hygiene is a big part for many to live a life with less symptoms but that doesn’t mean it’s all in their heads or biomedical treatments are not necessary. Same can be said for so many other diseases. So why should it not be true for Me/cfs.
Very well said, Jessi. Communication between mind and body impacts biology and function. This is a biological fact and it is happening in everyone all the time. As humans, we have the ability to influence that communication to effect changes in how our systems function. It is science and it does not suggest symptoms are psychological. The mindbody connection is a resource to be used to support the system’s healing abilities.
Mindbody therapies are so much more than mere positive thinking. That’s like saying math is about addition. Yes, positive thinking is involved but it is much more complex and nuanced than that. Many intelligent, informed, educated and experienced PWME use and find benefit from the techniques. Like everything else, not everyone’s system will respond. For those whose systems do respond, it can be a game changer for improved function and quality of life.
I agree completely with Jackie. Simon Wessely is applauding (is that man still alive?)
How could we come to this? It’s like a soldier shooting in his own foot. The awful
truth is that there has not been remarkable breaktroughs the last years.
Thank you. You’ve said what I’m too sick to say. This article is based on such hugely flawed conclusions I feel like I wasted energy I don’t have reading it. The correlation between adversity and ill health is old, old, old and has been cited as a precursor in so many diseases it’s common knowledge. No “study” needed.
Please, can somebody enlighten me—-how do I find Uplifts when I can’t get out of bed, have people around (they smell, thank you febreze), read much, eat…….
I am not disputing a mind/body connection. I believe it to be true. I do dispute the ability to find Uplift by the very ill. I’d love some uplifting experiences, I’m willing to start small but at this point in disease progression it’s impossible. 20 years ago I could have looked, I DID look and found some. But I cannot control the onslaught of time and circumstance. To suggest otherwise is insulting because I’ve been hearing it for so long, spent so much money and energy looking and only became poorer and sicker.
If this article helps a person who is still capable, that’s great. But it IS old news and as information such as this always does it will lead to Blame The Victim over and over rather than accessing more pertinent information with less built in bias. As a “study” it’s garbage. It is opinion trying to disguise itself as Science
This kind of mental training and discipline might be one of the only ways out of this — or at least slightly up from this — that we have currently. Practiced consistently and over time, it could rewire the neurology for a better functioning HPAA, and everything that goes along with that, immune, etc. Very interesting article, thank you Cort!
Thanks for this! It’s very interesting. I hope such approaches can help some people. Anything that can help one be happy, is good!
My experience over 24 years, is that creating happiness can be done. I started meditating 50 years ago; love it. And have found many other ways to bring peace and happiness into my life. Overall, I’d say it’s been a happy life. I’ve enjoyed it!
But the medical issues get worse and worse. Always fluctuations (months of better, months of worse); but overall, always a downward trend. New issues arise every year, as shown by testing.
It’s almost a reverse: when the medical gets worse, I get better at finding happiness. (I’m very lucky to have the temperament to do that. Always seeking better.)
Certainly, we’re all different. I’m all in favor of seeking happiness—that’s the way to live! But at this point, I believe that for longterm, lasting improvement, we need powerful ways to address all sides of us: medical, intellectual, and emotional/spiritual.
To actually heal us, takes all 3.
I think for many of us if not most of us – and I include myself in this – we’re going to need all three but your experience suggest – and this is how I think of this approach in general – why not give this stuff a try? If it works at the very least you get a better quality of life. 🙂
Good luck with finding the missing pieces!
Exactly! Work towards peace and happiness, and you’ll probably reap all kinds of good stuff. Thanks for your response.
There’s lots of “uplift” info out there. To me, this pamphlet is concise (51 pages); sensible; and presents several different ways to approach it, so that you can see what resonates with you.
Just in case it’s helpful.
Harvard Medical School, “Positive Psychology.”
https://www.health.harvard.edu/mind-and-mood/positive-psychology-harnessing-the-power-of-happiness-mindfulness-and-inner-strength
Thanks Fannie, I’m at a bit of a loss on how to add more uplift with this disease.
Yeah, Chris. It’s just plain hard. I’m sorry that you’re at that point; and hope that your body can get some positive juices flowing. In case it helps, here’s some thoughts.
Just let those down feelings sit there. Don’t try to combat or suppress them. Instead, try adding tiny bits of positives.
Each day: 5 minutes of deep breathing or guided meditation or looking out the window. Or a quick chat with a friend. Or 8 reps of reclining exercise, like foot circles/points, or bicep curls. Or one small serving of a favorite food. A song, a dance while your food’s in the microwave. Something easy and light, to help you physically, intellectually, or emotional/spiritually.
Avoid thinking about whether this is affecting you. Just keep going. Make it a blind habit.
After a while, whenever it feels right, add either more time, or a second positive activity. Easy and light.
The goal is to slowly slowly build up positive habits. While avoiding thinking about whether it’s helpful or not; or what’s happening with the negatives. Think about your favorite traits of yourself, and activities to draw them out. Think about enriching your life in physical, intellectual, and emotional/spiritual ways.
If the negatives feel overwhelming, just let them sit. “Meh” is my favorite word. Continue to build positive habits.
And know that as with other skills (like playing sports, or a musical instrument), the more you practice, the better the rewards. You’ll start getting more bang for the buck. The positivity gets easier, and more effective.
Good luck! I hope this can give you some help. We never know what our bodies can do.
– Some blogs back, I put together a list of tips from own experience for keeping mental balancewith ME/CFS in the comments. If you like, you can have a look here: https://www.healthrising.org/blog/2022/06/28/getting-run-down-by-me-cfs-a-memoir-summer-reading-i/, search for comment on July 2, 2022 at 8:54 am. Haha, I should have a look again myself :-).
– A German politician with ME/CFS has made a Youtube video on the topic: https://www.youtube.com/watch?v=Qt2sjqiH43Y It is in German but you could try watching with English subtitles (switch Youtube subtitles on, then click on Youtube settings wheel symbol to select automatic translation of subtitles to English).
Hmmm. This study has a tautological feel to it. I just took the “Hassles and Uplifts” assessment. It is, basically, an assessment that measures whether or not you have a positive outlook on life. I have an upbeat outlook, and of course, I found all kinds of things from my day “uplifting,” while I only flagged the really big problems as “hassles.”
Now, in truth, I have a lot of stressful things going on in my life (disabling ME/CFS, another autoimmune illness, facing hip surgery in 2 weeks, serious family difficulties including husband’s sudden job loss). And the “uplifts” are just small things, but I appreciate them a lot. So I scored well on the assessment, despite the fact that an objective observer would probably say that my life is full of hassles and lacking in uplifts. I think I’m lucky to have been blessed with a positive temperament, and I’ve also worked to cultivate that attitude while seriously ill.
A study that basically tests whether a person is upbeat or not, and essentially reinforces one’s existing attitudes — whether positive or negative — daily for 6 months, by asking daily for an accounting of all the hassles and uplifts, and then looks at results that are 100% subjective is really not looking at the consequences of hassles and uplifts. It’s simply measuring and reinforcing positive or negative outlooks. And, of course, a positive outlook is a bonus. As if that has anything whatsoever to do with ME/CFS.
I sincerely wish people would stop throwing money at foolishness like this.
Good to see Raelan being mentioned as a tool for recovery. Her videos and book certainly helped me to see that recovery is possible and it was big help to get a broad overview of methods others have used.
Came across this on Twitter, as I said before this blog is going down hill promoting pseudo scientific stuff for the past few months. Two big conferences happened, Invest in Me in London and the Conference in Berlin. Yet no post about them. Perhaps Mr. Cort is getting a new allergy, an allergy to hard biomedical science. Perhaps he does not know the damage he is doing. Many of us have given the link of this blog to our caregivers, and when they see that it requires just a bit of positive attitude to get better, they withdraw care and neglect and harm us.
Do you Mr. Cort have the balls to go to Mr. Whitney Dafoe and say to his face that uplifts are associated with improvements in ME? Do you have the courage to go to those who are severely ill, staying in darkened rooms with ear plugs and say it to them?
What next, a blog post on Lightning Process? On why CBT and GET are misunderstood? Those shrinks anyway recently published an article defending them, will you write a blog post supporting them?
If these pseudo scientific articles and sketchy recovery stories are indeed legitimate, then there is no need for you to write about proper biomedical research anymore. You have contacts with Nancy Klimas and Avindra Nath right, tell them they are wasting their times doing biomedical research. Show them this wonderful article, and also the wonderful recovery stories that you have published.
Virtually everytime I do a mind/body blog I get a comment that the website is going to hell in a handbasket. Actually, there’s as much stuff as ever on the biology – just check out the blogs (plasmalogens, Metrodora, Pridgen’s antiviral protocol, gut and the immune system) – and an interview with Nancy Klimas is finally in the works (fingers crossed). We actually do VERY few blogs on mind/body stuff.
Too many recovery stories, though, using mind/body techniques have cropped up. There’s really no ignoring them!
Actually, Health Rising is a little bit out of step on this. We will have more mind/body recovery stories for sure but most of our recent ones have been “biological” in nature – vaccines, rapamycin, hydration, alternative health, spinal patches.
If the stress response is impaired though – if it’s reacting to every little thing – which in my experience it is – then why shouldn’t these techniques help take the load off for some?
Just this morning I just came across this on a Facebook site. Notice she focused on “retraining her stress response” and that she was bad enough at one point not to be to listen to music, walk, or stand anyone else being in the room.
https://www.facebook.com/groups/650139118792993
The stress response is broken in ME/CFS. It is not possible to retrain this system if it is broken i.e. due to inflamation. I know this from experience. That doesn’t mean that meditation etc.. can be helpfull in the long run. I know some people too who claimed they were feeling better by this aproach and when they were positive. They all had a burn out not ME/CFS. It’s all more nuanced. I also agree it is pseudoscience when you only reported positive experiences of people who claimed tot have ME/CFS and feel now better.
Okay, this story is just nonsense. Doing less does not make our energy envelope smaller. Doing less allows it to expand. I spent the first 7 years of my illness learning this lesson, 5 of those years predominantly bed-bound (3 years entirely bed-bound). Whatever this FB person has, it isn’t ME/CFS. Why should we assume that everyone with a mystery condition has our illness? Those of us with true exertion intolerance, experienced over years and years, know that there’s no simple brain-retraining secret. In fact, every time I started to trust my body that it was getting better, I was blind-sided by a big crash (because I cheerfully overdid and accidentally triggered a setback). It was learning NOT to trust my body’s signals that has allowed me to return to part-time work and a decent (if still limited) life. Please please please stop with this nonsense.
Hi Pavaman, I was also surprised when Cort did not do a blog on the Komaroff/Lipkin study comparing ME/CFS and Long Covid.
ME/CFS and Long COVID share similar symptoms and biological abnormalities
https://www.frontiersin.org/articles/10.3389/fmed.2023.1187163/full
I may have referred to it – I hope I did (lol) but I didn’t cover it because I don’t generally cover broad overviews of topics because a) to be perfectly honest they’re a slog to write about – you basically just repeat what the paper said – and b) while they’re helpful as overviews they don’t really add anything new and it’s the new stuff gets my juices flowing 🙂 I do tend to use them as references, though.
That is unfortunate since this information is, I think, critical.
Most symptoms in the two illnesses are similar, although decreased smell and taste, rash and hair loss are frequent in Long COVID but only rarely reported by people with ME/CFS, and painful lymph nodes, chemical sensitivities and tinnitus are frequent in ME/CFS but rarely reported in Long COVID.
The same authors are busily working on a paper on etiology of Long Covid and ME/CFS
“Do you have the courage to go to those who are severely ill, staying in darkened rooms with ear plugs and say it to them?”
I’m afraid that, among its numerous other alleged health benefits, the power of positive thinking additionally has the ability to supplant courage, Pavaman.
I’m also afraid that your post may have only survived moderation for the purpose of being neatly rebutted.
– “Uplifts” or positive excitement routinely crash me (like an uplifting visit from best friend). In my experience, any kind of arousal (negative or positive) can mask energy limits and lead to an activity rush resulting in a crash.
– Like in ADHD, I function better with things that interest me – can get into spontaneous concentration tunnels with them when otherwise concentration hardly possibly (possibly due to some dopamine rush resulting from higher interest), but these leave me drained and often crash me.
– However, anything that calms down (not excites or activates) the nervous system, reduces the energy load on the system by reducing stress levels or leads to “quiet contentment” helps (like for example: reducing stress by working on more acceptance of one’s situation, by not comparing yourself to anyone not even to your low standards, etc.).
So I would not think the study to be differentiated enough. The crux with ME/CFS is that positive things can crash you just the same. All my major crashes of the last years with permanent deterioration came from giving the psyche the uplift it wanted, at the cost of the body. Due to the energy impairment in ME/CFS, mind (wanting activity and contact) and body (wanting rest) routinely have opposite and contradictory needs in my experience.
I meant “not even to your own low standards”.
I’m very similar. Positive “uplifts” can cause me to crash. I don’t understand what’s going on within my body that this happens, but it does happen. With pacing – I think I even need to “pace” the occurrence of uplifts to make sure I don’t crash as a result. I hope I’m making sense.
Yes you are 🙂 As for what happens in the body, I believe that positive excitement, similarly to negative excitement, releases stimulating neurotransmitters (like dopamine or adrenaline) that increase short-term functionality similar to what a stimulant drug would do. It probably also creates a state of high activity of the sympathetic nervous system. But because metabolic exertion intolerance exists elsewhere in the body too, that functionality rush created by those stimulating neurotransmitters will not be sustainable and cause a crash. I think it is similar to when we push ourselves over energy limits (probably by mobilising lots of self-motivatory neurotransmitters) leading to a crash.
(That trick could be used if something really needs to get done – for example do a positively excitory phone call, then continue on the resulting excitory high to also manage doing the dishes – but in my experience the risk of overexertion/crashing is very high when doing so. It is what often makes me crash again on the first day of feeling better, overdoing it on an “activity flow” fueled by the good feeling of having regained some functionality right until the tipping point into the crash.)
Also the feelgood effect of those positive excitement neurotransmitters can (like adrenaline) mask perception of energy limits, and in particularly dopamine can create a tunnel focus on the matter of interest thereby hampering perception of overexertion warnings the body might give at the same time. And possibly, simply the production of these neurotransmitters might cost the body energy. I could also speculate that the autonomous nervous system being less adaptable to excitement could play some role, too.
Which one would you say it is for you?
But in my case I feel it is not the feeling of joy that crashes me, but rather the activity connected to joy.
I have also observed similar effects with supplements, for example a short-term release type of magnesia gave me a short-term boost of functionality which also crashed me. So apparently there are several pathways of “driving functional output” in the body, not all of which are sustainable in ME/CFS.
13 years cfs, 7 severe.
Strongly agree uplifts relieve overall severity. A 15% boost enables me to shower.
hope we ALL get real relief soon.
THANK YOU CORT!!! You provide the best compendium of information on our disease and you’re APPRECIATED.
There’s a lot to unpack about this. On one hand, I think results like this might incorrectly support the image of ME/CFS as a psychological disease, where not improving can be blamed on a patient’s mindset. On the other hand, I do think that there’s some merit to the idea, because in order to remain mentally healthy despite a bad illness like ME/CFS, people need to have enough uplifts in their lives (regardless of whether these uplifts help us improve). There’s so much focus on productivity on our current society, that doing relaxing or uplifting activities instead of more productive activities is frowned upon. I think it would be good for patients if doing relaxing or uplifting activities with the small amount of energy that we have would be seen as a normal and sensible thing, instead of being guilted or shamed for not spending that energy on something ‘productive’ like household tasks or work. When these research results are used like that, something good might still come out of this.
That said, I don’t think the study as described here can distinguish the causality between uplifts and improvement. For all we know the people who worsened in the study reduced their uplifting activities out of necessity, instead of the lack of uplifts leading to a worsening of their condition. As a consequence, I would be really careful when interpreting the results of this study.
Right it was an association – not a trial which added uplifts to one group of participants and didn’t others. I think the trend, though, is in the direction that adding uplifts helps. Ashok Gupta’s recent long COVID study, for instance, found that these types of things can help and really, why should something that reduces stress not potentially help in a difficult to handle condition with stress response problems?
It’s not as if the people in the study got well. Their heart rate variability was still well below norms. They simply reported that they felt improved and overall the groups fatigue was 15% better. Nothing earthshattering – simply some improvement.
Very interesting thoughts on this blog. Recently been focussed on trying (and failing) for results/productivity, not seeking joy. With Bell 35, in the household so many practical needs are not met that a focus on productivity results also from situation of not being able to adress even the most pressing issues. But your comment makes me reflect also the ingrained societal perspective. Have I adopted a belief of “I must be afraid of being joyful with chronic illness” due to the mood-oriented assessment procedures of health & pension schemes, over worries if neighbours will comprehend the illness etc.? Just remembered a talk with a friend in a similar situation about this. I”ll take away the idea of allowing myself to seek joy more often rather than productivity in spite of a precarious situation. Feels…frivolous? 🙂 If I can do it? Don’t know yet.
Wow, is this ever true. Unbelievably we react to negative and positive so strongly it surprises me.
Yes, I think if you look at the obverse – how do hassles affect us? At least for me it’s amazing how much even really little things can bother me. In fact, that’s one of my big questions – how do I get so thrown off by the little things.
I guess I don’t hold much hope out for cognitive approaches helping much, especially if brain inflammation is a consistent problem with PEMs. It far overrides any possible psychological effects. However it would be good to enjoy the life that I am left with more. So I’ll look into the happiness lab link.
I recently had one glorious day of renewed energy combined with an overnight change from oppressive to wonderful weather. I simply could not sit still, went for a walk “downtown” and chatted with friends I had not seen in a while. The day was perfect, and since I had started a new supplement, I thought it was the beginning of overall improvement. It was not. It was just a brief reprieve followed by a crash back to ME normal.
I guess if I could experience uplifts without spending all my energy enjoying them, maybe I’d see the benefits. But when you are house and almost bed bound most of the time, a brief burst of energy is awfully hard to resist. At least I didn’t spend it all on catching up with house and yard work.
“At least I didn’t spend it all on catching up with house and yard work.”
The key, I think, is finding ways to experience uplifts without expending more energy than is available perhaps like finding appreciation in things in our immediate area? I’m at my uncle’s right now – and his simple backyard garden is pretty darn nice. I had never really noticed it before. It’s just a little uplift…
A perfect example of the MBSR concept adopted from Buddhist teachings of “Beginner’s Thoughts.” Cort, what caused your sudden appreciation? An “uplift” was just sitting there waiting for you and you couldn’t see it. How do you take this one experience and now create HABIT?
Perhaps the study of “Habit Formation” (e.g. Charles Duhigg’s book) should be mandatory reading for p/w/ME/CFS.
I agree completely. Just as I have to manage my physical exertions I also have to manage my emotional exertions, avoiding hassles to the best of my ability and counter them with uplifts. The hassles and uplifts have at least as much effect on my energy level as does physical exertion and rest. Heart rate variability does seem to be important as well. I have a Garmin watch which tracks HRV. For the last few years I’ve been in the 48 to 54 range average. About 3 months ago I got a vagus nerve stimulator that I use throughout the day (Hoolest VeRelief) and my HRV has consistently increased to 67 to 72 average. It hasn’t been a cure-all but has helped me to handle stress better and to fall asleep more quickly when I wake up at night. The watch is also helping me to realize the negative effect that eating sugar, being too active in the evenings and stress have on my HRV. Maybe these things aren’t the cure but why not do what we can to improve quality of life while we are waiting for the cure.
It is nice for researchers to acknowledge the mental struggles we face living with CFS. Sometimes I think there is such a push to say that CFS isn’t a psychological illness ( I know it’s not!), that our mental struggles are then not acknowledged at all.
I know that if I’m feeling depressed I can crash. Sometimes if I’ve been in a crash,getting out of the house and going shopping can help. On the other hand, sometimes I go out, enjoy myself, and then crash. My mental health suffers from the shock of realizing how big and busy the world is compared to my small life, and it makes me really depressed. So the day out backfires, both mentally and physically.
I do try every now and then to push to do an activity that can be done while still on the couch. But I don’t have the energy to do activities daily. I’m too tired. So the question is: do I push myself and try the activity regardless of how I feel and possibly crash, or do nothing and feel depressed and not crash. 🤷♀️
I know how annoying it is when people dish out advices when you are struggling to sit up day in and day out. But someone telling you to do more of what makes you feel better and less of what makes you feel worse is probably the least annoying as far as an advice go.
It’s been a life saver for me to get fresh air every other day in the first 8 years when I was in moderate/servere end of the the spectrum. Then I’ve been doing awe-inspiring road trips for the last 6 years, and now I’m 99% recovered. (My latest at https://youtu.be/C6N1EpAR0_w). The recovery could’ve been a coincidence, of course. But dopamine has been known to downregulate microglias and therefore temper down neuroinflammation.
You know, your comment about the road trips reminded me of a state of being that I find good with ME/CFS, namely a state of “drifting” completely at your own leisure between activity and rest, without any external expectations. (If energy permits.)
Not only is it very satisfying to be able to fulfil your needs and impulses when you have them, but also it reduces stress because there will be no collision of low energy with external requirements by other people. I imagine this could be found in a road trip too…
We have a figure of speech for this in Germany: “Alles kann, gar nichts muss” (meaning “all possibility, no pressure”). Thank you for reminding me of this. I was pressuring myself a lot these days at low functionality, maybe I can seek out this state of being more.
An article from National Geographic
https://www.nationalgeographic.com/science/article/can-this-19th-century-health-practice-help-with-long-covid
which suggests attitudes toward recovery in the time of tuberculosis were healthier than our attitudes today.
A cultural allowance to be sick for an extended period of time would allow people with long term illness to see the events in their lives through a different lens. This alone could not only create more “uplifts,” but could make previous “hassles” into uplifts. (e.g. “I have to go to the doctor” vs. “I get to go to the doctor.”)
Perhaps the sanitarium model could be applied to ME/CFS with tremendous success.
Oh yes, there was a time when people were prescribed a “Liegekur” (rest cure) And I think there’s a whole Agatha Christie novel based on the premise of a guy being prescribed a prolonged uneventful recovery time in a small village.
If they put me into a rehab for weeks or months that had quiet premises, no perfume, provided me with food and room service, with optional socialising, mental health support etc. but no pressure, I am certain I could improve significantly.
Thank you Cort for another great blog! For those that are interested, there is another very relevant article by Diana Kwon published in Feb 2023 in Nature entitled “Your brain could be controlling how sick you get – and how you recover”. There is a lot of promising scientific research trying to pin down how mental states can influence immune responses.
Here is an “uplift” for everyone:
https://www.science.org/content/article/protein-disrupts-cells-energy-centers-may-be-culprit-chronic-fatigue-syndrome
“…researchers have identified a protein that’s present at unusually high levels in the muscles of people with ME/CFS and that disrupts cells’ ability to generate energy. The findings, reported today in the Proceedings of the National Academy of Sciences, could point to new therapeutics for this condition and for illnesses that share similar characteristics, such as Long Covid.”
Long covid, ME/CFS and the disaster that was the RECOVER initiative:
https://erictopol.substack.com/p/long-covid-mitochondria-the-big-miss
Noticing the uplifts is essential for a anyone to have a more meaningful life. I think with CFS/ME, we have to re-learn what is an uplift because we can no longer “DO” what we used to to make them for ourselves. We must notice, and often we are too low to notice anything. We know we all have the hassles, and what may not stop or crush another person may send one with CFS/ME into a months-long crash. Such as, being exposed to mold or some chemical to which we are sensitive–or cigarette smoke or a stressor such loss of a caregiver or provider. So if this helps a person with CFS/ME look more for the uplifts, that’s good I think. Feeling our lives have some value or enjoyment is essential to survival. But we all know having a good attitude or faith or whatever may not be an answer for the suffering we experience. It’s a burden if others decide what we must experience in order to “be better.”
Nothing like blaming the patient for their problems. They used to do that with cancer patients. Now its back
Every suggestion of any mind/body approach that helps -and mind/body approaches are used in many illnesses – this response comes back – the patient is being blamed. I don’t know what to do with that except to note that that is not the intention of the study, and that it was created by a researcher who has had ME/CFS for many years – who wants to help.
As the blog noted studies have shown that ME/CFS is one of the most debilitating and difficult diseases to have. Add that to the fact that any chronic illness greatly increases the risk of depression and you’re in a real difficult situation – a situation that none of us are prepared to handle.
Maybe you could see this ana opportunity that you want to either try out or not?
Please note that it was not as if the study said anyone was cured – the study just found that people who had more uplifts tended to improve and had a bit less fatigue. To me that actually fits just fine with the idea of chronic illness which has problems in both stress axes.
Sorry my comment upset you. Having been a Psychiatric social worker and Buddhist for 50 yrs, I just don’t agree. Uplifts are good but not a cure for CFS.
I have learned to look at physiology not just psychology.
Thank you but where, Barbara, did anyone say anything about a cure? You might ask how you came to add something to the discussion that wasn’t there? The study was about improvement and with regards to improvement – a fairly minor but still helpful 15% reduction in fatigue yet here we are talking about a cure (???). We all want a cure but this wasn’t about that.
And why the distinction between psychology and physiology? The blog noted that studies have found that even healthy people who experience more hassles have increased markers of inflammation.
As a practicing Buddhist you might like to know that a recent metareview on several dozen studies on meditation and fatigue found
“indicate that meditation-based interventions alleviate pathological fatigue”
https://pubmed.ncbi.nlm.nih.gov/37358949/
This is not to say, of course, that they remove it but there is the possibility of some alleviation.
This is an important article, Cort. Staunch believers in biological fixes only are missing out on an aspect of health that could potentially make them feel a little better, even if it is as low as 15%. Every little bit indeed helps.
The mind-body connection is absolutely real. Watch or read about the documentary “Heal” on Amazon Prime and be motivated to try, as best you can, to incorporate small joys into your life. I’ve been bedridden for the past 6 years, and I’ve alI also been very severe. Of course the better you feel, the more you’re able to engage in these uplifts, but what if not engaging in them is making your symptoms worse, even minimally?
Texting or messaging online, if one is able, with hopeful, supportive, compassionate people, such as other ME/CFS folks who aren’t mired in anger and negativity (which I know can affect us all, as this disease is incredibly difficult), for example, is one great way to boost your mental health and most certainly can be considered an uplift. At the same time, I realize not everyone has the opportunity to connect with others in this way.
Bottom line is, do what you can to help your psychology, and if you can’t, forgive yourself and surrender. Stress does a number on our physiology and we ME/CFS folks already deal with enough physical stress in the form of disease. The last thing we need is self-imposed mental stress.
Does this mean one has to be zen 24/7? No. Far from it. For some of us, it’s just not possible given our extreme physical suffering. But sabotaging one’s own mental health really has no upside.
What do you mean with the mind? your thoughts and feelings? Where is the mind located in the brain?
It is not known if the mind has a specific location in the brain, but yes, it comes from the brain. Also yes, your thoughts and emotions. But rather than driving yourself crazy trying to do that, maybe just try and create more positive experiences, whatever is within your limits, and stop yourself from engaging in negative experiences, such as debating someone about the suspected etiology of Me/CFS, or about which politician is worse, you get the idea. Maybe if one does this as a habit they can have some improvement over the long run. Plus, when we are feeling best in the mind, that’s when creativity is at its best. Maybe one of us patients will solve this disease in a sudden burst of creative genius. Not likely, but one can wish.
It’s hard though. When we’re symptomatic and feeling like shit, immediately comes the rushing negative thoughts, for most people at least.
So, you do your best. Baby steps.
Yes, If I’m still enough – which is pretty rare – I can notice little slumps in energy and trace them back to negative thoughts. The problem I believe is not that we’re having more negative thoughts – although of course we are – anyone with a chronic illness is prone to that – but that our stress response systems are messed up that they impact us more than when we were healthy.
At that point the easiest thing to do for me is to use an EST practice and say “Thanks for sharing” and let them go. Actually, letting things go again and again and again is a Buddhist practice as well.
Where do thoughts come from? The subconscious? Where do feelings come from? Hormones and neurotransmitters? Medicines can be used for uplifts and positive feelings. It doesn’t make any difference to the chance of recovery.
In addition, the environment does not leave you alone to be positive. Your partner, children and family don’t understand it. you have to earn money and work. You have no influence on that. In your theory, you should have the luxury of being able to be zen with all your problems.
If your toe is broken, you won’t get up on it either. Avoiding negative thoughts or activities makes it easier for your toe to heal. But it must be able to heal.
Thank you Cort. Comments are fun. Never did it before. Im old enough to remember the book Anatomy of an Illness by Norman Cousins
Ha! Me too – that was back in the day for sure – and what a splash that book made. 🙂
Warning! A fast-spreading new subvariant of the coronavirus that causes Covid-19 — nicknamed “Eris” by health watchers but formally known as EG.5 — recently became the most prevalent strain in the country.
Last week, my husband and I attended a national conference in Orlando with delegations from all over the country. Both my husband and I came down with Covid and most of the Florida delegates now have Covid as well. One has been sent to the hospital.
Don’t believe it when the CDC says the symptoms are mild. This is the sickest we have ever been.
Are you not vaccinated?
As far as I know, everyone who has gotten sick was vaccinated. I am hearing that more and more people from the conference who have Covid.
Fatigue has always felt like the wrong word to me. This article ( https://www.sciencealert.com/surprise-discovery-about-dopamine-may-help-explain-parkinsons ) describing dopamine subtypes and their effects on neurons “accelerator-specific dopamine neurons could be creating an imbalance in the brain … Left only with neurons that govern deceleration, the brain might be forcing muscles to come to a stop.” seems to more accurately describe the fatigue and fog. If some CFS symptoms arise via dopamine disruption it could account for the differences we experience with uplifts/hassles.
Set aside the judgement. If something helps, even if just a bit, why not?
This is what uplift looks like: Physicians and other providers who listen, understand ME/CFS, are familiar with the research, and know how to best help. Disability benefits that don’t involve an exhausting fight. The NIH funding robust research studies into ME/CFS in an ongoing way. Media posts and articles written by people who are informed about the research and the ME/CFS experience. A public with broad awareness of the reality of ME/CFS. Social and family support that is knowledgeable, appropriate and compassionate because the media and medical personnel are painting an accurate picture of ME/CFS.
Individual efforts at uplift are important and not to be dismissed, but true uplift happens within an informed, supportive community.
Nicely said! 🙂
Dear cort, as a researcher, i first would like to thank you for daring to put this paper at the site. have read through all the comments and fully understand that, mostly due to fact that many wrongly judge mecfs as !being between the ears’ (it is indeed a disease of low energy), body and mind interact with and influence with each other (simply think of the Pavlov effect). The study described is indeed an observation study. It would be great if such a study could be combined with looking at biological parameters.
Thanks so much Peter! 🙂
ME/CFS is not simply a low energy disease. It is many times more complex. There are several systems that do not function properly. You cannot control this disease simply with your thoughts. Of course if you can save energy if you try not to worry mentally and meditate. This has been known for centuries from Buddhism. Just like with cancer and other diseases, you cannot meditate your cancer away. The psychological chapter is now closed. It’s an insult. Find the true cause and solution for ME/CFS. Like a diabetic gets his insulin.
Instead of closing the chapter, I think a better approach is trying to figure out how and why – given what we know of MECFS – these approaches work for some people.
To my mind it’s not hard – take pressure off of two broken stress response systems – both of which are major immune regulators – and see what happens.
having CFS for at least 20 years, i identify with much in this blog. Lately, i have tried pacing quite a bit and have found that it does help. Although i find that my CFS is getting worse as time goes on. I do follow the research. I keep hoping and praying for an answer. Thank you for all your work………..
What is an “uplift”? I’d assume it to be something positive, but from this article is sounds negative.
Sounds like I haven’t caught up with the recent ME/CFS jargon,
If anyone can elucidate, I’d appreciate it.
It’s basically any positive experience – a beautiful experience, great piece of music, nice conversation, happy thoughts – things like that. Not a bad idea, anyway, to accumulate them! 🙂