Coffi Consumer Dialogue “Post-exertional malaise and setbacks in chronic fatigue conditions"

[@-essexgirl-]

My husband was sick with CFS Fibro and POTS for 23 years. Mind/body training helped him recover 11 years ago. He has not looked back and leads a full life. He was chronically ill and couldn't work and was under Kings College Hospital. I am so glad that this is being researched and spoken about more and more. Even though some people seem offended by the fact that the brain controls our health, it should not be disregarded as non scientific. Drug free solutions will always face barriers, for obvious reasons.

[@fionasstory6126]

This is incredible, thank you for sharing. Every story like this makes a difference, I think

[@jennygilmore6195]

Hi thank you. I was ill for 14 years following glandular fever and up until attending brain training thought my illness was caused by persistent viral infection, damaged mitochondria etc. i was transformed and would like techniques and understanding to be available to everyone.

[@fionasstory6126]

Brilliant to read this, thank you for sharing!

[@PaulGarner-bg9yc]

You are right. I thought the same and the thought itself is harmful. The evidence on changes in mitochondria in ME/CFS is weak and inconsistent, and this probably does reflect changes in them, but this is due probably to a combination of these central nervous system influences on the whole body, and reduced activity as a result of fatigue

[@GeorgieOldfieldSIRPA]

This was a really important discussion and hopefully providing hope for many people who may not yet understand that recovery is possible from conditions that have often persisted for many, many years. Congratulations to COFFI and all those involved for raising awareness.

[@kmcghie23]

Love this. Thanks for putting more of this kind of thinking out there!

[@laurabrown9726]

This was a great event and it absolutely resonated with me in terms of how I recovered from Long Covid. It was also so exciting to be ‘in the room’ with such big names in the field of mindbody medicine. Honestly - an absolute joy!Thank you!😊

[@Jeferson_k]

How long have you had long COVID?

[@peacehealing1882]

Just finished watching and I am stoked!!! Such a wonderful mix of people, great to get different views on the same thing. Since I understood that it's my (totally unconscious and unwanted) reaction to my symptoms (a conditioned response of my BRAIN) and not my symptoms that is important to focus on for healing, I have watched so many really good videos/explanations. So much good info out there already - but this is BY FAR the best, most concise, and best visually supported video I have watched so far!!! THANK YOU, thank you, thank you! So happy I have something like this now to share with others who are struggling. I truly believe this can and will help SO many people to experience what I am just started experiencing: that simply UNDERSTANDING (that the brain can truly generate so many different and severe symptoms) can already change SO much for the better. Just watched your recovery story, Fiona. Absolutely encouraging, THANK YOU for the courage to put yourself out there, I know what that entails, but I am sure it can help so many people. 🙏👌

[@anngrandchamp3599]

This was full of great and important conversations and comments. Thank you so much!

[@leahcalabro2787]

This makes 💯 % sense! I have 30+ year history of this. Such important information to get out into the me/cfs community. THANKYOU 👏 👏 👏

[@sophiesolomon4643]

Complete gamechanger in understanding chronic conditions. The brain is amazing.

[@DrDavePPDA]

Wonderful explanation of the latest science in this field. This is so important for people to hear so they can recognize there is real hope for full recovery. Well done by everyone on this program.

[@Jeferson_k]

Please, can you send me the articles proving these mechanisms in me/cfs?

[@domsa_]

This isn't the latest science. This is someone's idea of what PEM is. It's *literally* a hypothesis. Do you understand the difference?

[@kirstyroberts2944]

This is neither new nor science. It’s a rehash of the CBT and GET theories which have been shown to be very low quality evidence for ME and they were subsequently removed from the NICE guidelines as it harms many patients.

[@fionasstory6126]

​@@kirstyroberts2944 that is incorrect. There is some new neuroscience underpinning some of this. I can recommend books if needs be. There are also trials underway testing this stuff. They aren't on cbt and GET

[@CrushingDoubt]

@@domsa_ It may be a hypothesis, in that this hasn't yet been fully proven, but it's a very educated hypothesis, in that it fits with all of the science coming out about how dominant the brain is in so many symptoms. More study is required, but very promising ideas that also explain why those in the mind body field have had such success where others have often not.

[@lauranias5211]

Brilliant stuff, so grateful these newer ideas are out there and available to ordinary people. Thank you

[@SplendidlyBright]

This is so brilliant, thank you for sharing!

[@almabarner4625]

wow thank you, that is excellent. I have done some research in the past on predictive processing accounts of the brain and I never connected it Long Covid or PEM in the way that Silje Endresen Reme does! Truly very interesting and illuminating! I also really like the discussion on how to overcome barriers that patients might have towards these approaches. This is something I struggle with too, also for ethical reasons, since we want people to recover. Next to sharing personal experiences/recovery stories, spreading the word and formulating the approach in a correct but also inviting way, I also think more randomized controlled trials or observational studies showing that these interventions do work would be extremely useful in addition for patients adhering to the biophysical model of the disease.

[@alastairmiller1460]

Really good, brilliantly presented and easy to understand. Many congratulations to all involved. This needs to be widely disseminated...

[@Conquerchronicillness]

This will blow the cover off so much harmful and mis-guided information being spread in the LC/ME/CFS communities! Thank you for pulling together such an amazing webinar full of important information for Recovery !

[@andreadenny4833]

So many comments disagreeing wth this approach have disappeared. To anyone with me/cfs reading this please be careful. Pacing yourself is still yhe best evidenced approach to ME. Anyone trying the theory outlined in this video please be careful. DO NOT PUSH THROUGH the fatigue believing that you can. This type of thinking led me to my current state of becoming severe and bedbound. This video is a new take on an old hypothesis which made many PWME much worse than they were.

[@CrushingDoubt]

I'm sorry to hear this kind of approach added to your already difficult struggles. Mind body ideas can be very powerful and helpful to some, but it is true that they need to be implemented in the right way for each person (and often with support) to work well. I agree that just pushing through won't work for some and can see how it could increase the symptoms if it raises fear. I have ideas on this and how it could still help you if you'd ever want to talk about them.

[@andreadenny4833]

@@CrushingDoubt I have no objection to people trying this approach but there really should be a warning on here for people. Although this video is not directly advocating pushing through symptoms, it's also not telling people not to push. Pushing beyond limits is very easy to do when you are actively telling yourself you'll be fine if you do an activity. I still give myself pep talks, visualise the outcome I want. It continues not to work for me. Maybe one day it will. I have been trying this for decades so I have a pretty good handle on the subject. Believe me , neither me or my brain have any fear of consequences. It's just kind of hard to keep telling your brain it's actually fine when the consequences actually hit you and you are semi unconscious.

[@CrushingDoubt]

@@andreadenny4833 I fully respect these viewpoints and of course you know best what you've tried and how well you understand it all. You've worked at it for long enough to know a huge amount, by the sounds of it. I often tell people that you can't just tell yourself you're safe or that things are good if you don't believe it. It doesn't work. But I often have ways of looking at things that help change actual belief. In my own journey, this was what worked. And it took hashing out some of the confusion or conflict of ideas I was seeing. The unconscious makes it all the trickier, but I have ideas about how to work with that, too. Anyways, you're not alone in the lack of success, increased symptoms, and frustration many encounter in trying these things. I consider it part of my job to explain what has stood in the way for so many to utilize the concepts well. Certainly not the fault of the sufferer. We need to do better with the information we give. Tricky stuff for all, though!

[@amie5418]

Great presentation, Thanks!! I am really interested in learning more about the science and information out about the difference between the threat and challenge response that Dr. Phil Parker spoke about. Do you know where I can find more information on this?

[@CrushingDoubt]

Fantastic discussion. For those who claim there is no science behind it, I would say it seems to be precisely the opposite. There are thousands upon thousands of studies showing that the brain controls every system in the body, as well as actual clinical success with mind body approaches for many chronic physical issues (whereas there isn't much track record for success without such treatment). More study is certainly required of the specific diagnoses, but mind body/neuroplastic treatments are quite new and must be studied. It goes against logic, in my mind, to think any one system -- such as whatever controls fatigue symptoms -- are any different than musculoskeletal ones, which have been proven to respond well to mind body treatment. Check out the Boulder Back Pain Study and consider why other bodily systems would be so different. It's very understandable to want proof, but those who object only on those grounds don't seem open to investigating and getting the proof.

[@PaulGarner-bg9yc]

Agree. These phenomena are well recognised in chronic pain. A trial in 2021 by Ashar and others showed very clearly that a "psychological treatment based on re-appraisal of primary chronic back as due to non-dangerous central nervous system processes" showed amazing reduction in pain relief which lasted.

[@Clit_eastwood]

I’m only 33 min in and I’m listening to Dr Kennedy right now. Maybe I’m misunderstanding but when I started getting sick I had no idea what was going on and continued weight lifting as I was training for powerlifting competitions. I kept thinking it was some illness that would pass or maybe menopause symptoms. Now just over a year and a half later I’m just barely starting to not be bed bound. But I have some permanent damage and constant pain now. But I can’t help but think it’s from me pushing myself with lifting that I got so sick and for so long. I still have another 30 minutes to listen. But I have always felt that is what caused me to get so sick? Curious what your thoughts are?

[@rachelwhitfield]

Hi. Great question. I wonder what your conclusion was when you watched the rest of the video as it seems very similar to my own experiences of running while getting sicker. I concluded that for me it was actually a stress response brought on by a number of factors and not really about the running but at the time, the running seemed the obvious thing to blame and my brain quickly linked this activity to symptoms. Ie a conditioned response created through expectation. This fits with Silje explanation and was the knowledge i used to recover

[@ezzyb728]

This is amazing, thanks so so much 💖

[@rachelwhitfield]

We thank viewers for their mostly constructive comments. We are now closing the dialogue on KZbin. We hope you will all come to the next seminar in 2025

[@TheSnowLeopard]

The scientific basis for the claims is lacking. Predictive coding occurs in the brain where real time prediction is needed - namely proprioception (including eye-tracking) and speech perception. The brain does not use predictive coding to predict pain or fatigue signals and we know this through nerve blocking experiments. For example, central fatigue is primarily due to reduced motor cortex excitability due to type III/IV muscle afferent feedback. Blocking those afferents during fatiguing exercise in humans blocks the effect on central fatigue and also impairs ventilatory responses to exercise, showing that there is no such predictive coding that compensates for the lack of afferent signal. Saying that predictive coding is relevant in fatigue symptoms is saying that these patients have inherently different neural architecture to other humans, something which requires evidence (of this predictive coding).

[@TheSnowLeopard]

Claims of predictive coding as an explanation can only really apply to systems where there is actual predictive coding - it is plausible as an explanation for psychogenic tremor for example, but it is not scientific to use predictive coding as a catch-all explanation and especially for symptoms related to mind-body systems where no one has actually demonstrated any predictive coding.

[@TheSnowLeopard]

One of the hosts mentioned a hammer on illusory rubber hand causing pain, but this is a myth. In this effect, people flinch when the rubber hand is hit, but they do not feel pain.

[@CrushingDoubt]

Genuinely curious: Why would the brain use predictive coding to predict only a small number of things? Doesn't it make more sense that it would try to predict anything and everything it experiences (especially if it is related to safety)?

[@CrushingDoubt]

@@TheSnowLeopard The rubber hand study states that subjects reported feeling actual pain, by the way. I would provide the link, but KZbin erases such comments.

[@blahblah6766]

A lot of good information here, but I would like to make an important point regarding the proposed cause of PEM being due to association/expectation/attribution. Louise made a good point that people might think that "it's just my brain, I can push through", but we know that that will just make things worse. I disagree with the idea that excessive exercise or overdoing it will only cause PEM due to expectation and attribution: I think that doesn't properly explain the type of PEM that occurs 24--48 hours later, which I don't think can be entirely put down to a false attribution. If you look at what happens to healthy people when they really overdo things over a long period of time, don't get enough sleep, have an infection, etc., we do actually see a less severe version of what happens to ME/CFS patients in PEM: increasing fatigue, possibly anxiety and depression, increasing dysfunction in the autonomic nervous system (upregulated sympathetic and downregulated parasympathetic activation), impaired immunity, suppressed HPA axis, etc. I see PEM (and ME/CFS itself) as an extreme version of this "chronic overdoing it" that happens to healthy people. There seems to be some mechanism in the brain which regulates the overall stress response, shutting things down when there is long-term excessive stress. In my view, expectation/association/attribution lead more to immediate symptoms (rather than PEM). In the video Rachel describes both: PEM after 36 hours, and also immediate symptoms after 10 minutes of running, starting with anxiety. I think expectation/association/attribution will lead more to these immediate symptoms, rather than PEM (although it could potentially increase future PEM by increasing mental stress and worry). That's not to say that these immediate symptoms are any less important, or less central to ME/CFS. I think they are an important aspect of the illness, and it was a mistake for patient advocacy groups to focus exclusively on PEM as if it somehow makes the illness "physical" or "real". My view is that ME/CFS and PEM are caused by overdoing things too much for a long time, and the brain eventually ratchets things down so that lower and lower amounts of activity/exertion/stress cause these symptoms. Recovery involves addressing every aspect of this, including reducing/removing stressors, resting, removing worry about the illness itself, and then gradually increasing activities slowly when able to while bearing in mind expectation/threats, etc. and replacing stressful activities with ones that bring joy, which was mentioned in the video, and was critical to my own recovery. Another quick point is that anxiety can sometimes be a symptom itself, rather than due to worry about an activity, so it may not be possible to address it directly. Some examples from my own experience include: feeling anxiety for no reason after very poor sleep, or feeling lightheaded/anxious when trying to do normal activities during a crash. I suspect that this is either due to some neurological aspect (messed up neurotransmitters, mild neuroinflammation, etc.), or due to ANS dysfunction (excessive sympathetic nervous activation).

[@siljereme]

Thank you for your comment! I largely agree with you. My proposed mechanisms were not intended to be exhaustive, and other mechanisms and processes, including stress, could certainly play a significant role. The dysregulation of bodily systems, particularly the autonomic nervous system driven by contextual stressors, is indeed a key factor in explaining the symptoms from my perspective. Addressing this by removing unhelpful stressors and incorporating value-based activities that induce positive affect is both beneficial and often necessary. This approach aligns with how I work with patients. However, I believe that the various delays observed in the PEM response, which can range from a few hours to several weeks after the suggested causal activity (and even prior to the activity), can only be credibly explained by expectancies/attributions within an already stressed and dysregulated system.

[@bethwood2960]

Interesting explanation but no scientific support.

[@andreadenny4833]

This presentation completely confuses me. As a bedbound severe me/cfs patient I do not recognise the experiences of the people on the video. I have no fear or anxiety whatsoever over experiencing symptoms, or suffering from pem. I am a positive person. From the very beginning of experiencing symptoms I have been of the mindset that this illness is a blip, a rut on the road and that I would recover. Every day I wake up thinking, let's try again today, I'm sure this will let up eventually. I take joy every day in the little things, yet all I hear from neuro/psycological advocates like yourselves is that fear hold me back and is causing the illness. The very things you are advising to do, I did religiously for years and still do to some extent. And yet I have still deteriorated. There are research projects coming out ll the time which are finding physical markers for me/cfs. So I am puzzled as to why this narrative is still being pressed. Please can you provide real scientific evidence that back up these claims please.

[@fionasstory6126]

I could have written this just a few years ago. I would have said I was positive and had no fear of my symptoms. But this is a misunderstanding of what the seminar is explaining. I left a comment below explaining. The symptoms are themselves a sign your brain feels under threat in some way (and then they can stick around thanks to neural pathways developing). So you can feel as if you are positive but underneath that, your brain is trying to protect you. I recommended two books you could read. Are you able to read books with how severe you are?

[@seanm.collins9888]

​@@fionasstory6126what if you just had already been cured naturally and you just dared to do more now after you listened to the cure app?

[@fionasstory6126]

​@seanm.collins9888 good question but that isn't what happened. When you start this work the symptoms come and go as you do the exercises. It's a process that you start to get better at and to have more control over. It's not just a case that the symptoms are gone one day. Having been well for 6 years I have also now seen so many others recover using the same tools.

[@CrushingDoubt]

@@seanm.collins9888 Seems like an unlikely coincidence and fairly easy to test.

[@andreadenny4833]

​@fionasstory6126 hi Fiona. No unfortunately I could not read a whole book. Upon looking there is no data or research on whether the approach actually works for me/cfs. No facts at all. Only anecdotal evidence. However I don't think I am misunderstanding the principles. It's the neuroplasticity theory. I have researched this recently.i am very aware of the theory behind this approach. I honestly spent years on this approach before it was a thing. I knew nothing about me/cfs and did virtually everything explained in this video instinctively. I tried everything I could think of with a cool headed positive approach. I pushed too hard believing I could get better. I am really happy that for a few people the approach on the video has helped. Unfortunately this theory can hurt more than it helps if people think they can push through the fatigue . Try too hard to fix ME with positive thoughts and trying to make their brains believe they are OK. And yet there is no warning on this video to tell people of the consequences that do happen if you push your body more than it can handle. I am now bedbound and severe due to the very approach you are promoting. Please do not delete this post as many others have been. Although i believe you are doing this with best intentions, there should also be a warning to people to be very careful how to approach this theory There is so much evidence that ignoring symptoms and trying to push through the illness, can be absolutely devastating to MECFS patients.

[@themupsmuppet]

It's great that changing their mindset works for some ppl (I believe Fiona's story, Rachel was only sick for a few months however so I take that with a grain of salt) but there seems to be no insight into degrees, variations and subtypes of ME here. That makes it dangerous to those that are going to push through while thinking joyeus thoughts.

[@merriweather79]

Can you explain where they talk about pushing thru while thinking joyous thoughts ? Or is that the implication you are taking from this? Thanks

[@themupsmuppet]

​@@merriweather79 Sure; 30:30: you're supposed to calm your brain with positive things so it stops giving supposedly wrong signals. Then the former short-covid patient says she could incrementally increase activity. This is CBT/GET but instead of blaming the patient for their wrong thinking the blame is put on the brain so the patient becomes an innocent bystander. So I get why this is popular in some circles and might even work for some (but the mito & immune problems need to be minimal IMHO) but it'll bring harm to others. You can't say someone's ok when you don't know what's actually wrong.

[@merriweather79]

@@themupsmuppetFirstly, Rachel didn’t have short Covid . Is there even such a thing as? She had Long Covid . She got better sooner than some do either because she used the techniques or it was pure luck. Those trying to disprove the hypothesis will of course say it was just luck because some others do recover naturally ( tho we don’t exactly know what they did just because they didn’t do an official programme ) I choose to believe Rachel recovered because of the work she did because it tallies with what I’ve seen and experienced for over 3 decades but I can’t prove it scientifically As for the comments about soothing the stress response and reassuring ourselves that we are safe , that’s not pushing through or just having joyous thoughts but it often gets misinterpreted as that and I know there are some evangelical about recovery who don’t help matters It’s not a simple magic fix I can assure you It’s also not quite the same as CBT/GET tho I understand you and others might feel it is There is so much more to it and the recovery groups have some great discussions to explore this I love the fact that it could be my brain because I’ve been able to work on affecting it. I don’t take any of it as blame I myself have been lucky enough to explore this with a neuroscientist Re the immune system and mitochondria , Dr Monty Lymans recent book - The immune Mind looks at the two way communication between brain and immune system As for this approach causing harm I agree it can if not fully understood and there are some rogue coaches out there sadly but also some brilliant coaches, drs and researchers There was also a recent article exploring the role of the brain in mitochondrial health - published in Nature I think I keep an open mind and keep learning as I slowly recover

[@merriweather79]

@@themupsmuppetNo I haven’t been working on recovery for 3 decades and not recovered

[@-essexgirl-]

My husband was sick with CFS Fibro and POTS for 23 years. Mind/body training helped him recover 11 years ago.

[@andreadenny4833]

I believe in the brain body connection, in that stress depression etc can have ab effect in physical health. However everything in this presentation is rehashing old information. There is nothing new as one lady on the presentation kept reiterating. This is the same theory that our own beliefs are causing our illness. This us exactly the same thinking that the PACE trial was based on. The PACE study and it's findings gave been completely debunked and widely criticised as having no basis in scientific fact I would be very interested in links/papers of any of the new research, trials, findings please so i can look for myself. To me it is not ethical to be try8ng to spread awareness of this sort without providing proof that this actually works for LC AND ME/Cfs patients. In fact from my own research most trials research coming out in the last few years have been finding physical differences/markers the the bodies of me patients. Traits in the blood, brain, cellular differences that are different from normal controls. Which us why the nice guidelines were changed and GET abd psycological methods were abandoned as a treatment. Please can you link any recent scientific proof that you have that backs up these claims please and thankyou.

[@fionasstory6126]

This really isn't about your beliefs causing your illness. It is about brains evolving to create symptoms to protect us at times of stress. You might want to look at two books - The Inflamed Feeling and The Immune Mind. They both go into some of science in more detail and are really interesting reads

[@seanm.collins9888]

This is no different from what Ramsey, Richardson and Dowsett advocated for many years. Complete rest in the acute phase and ramp up activity ss you get better. No mind body bullshit.

[@stuwarp6684]

Massively offensive.

[@-essexgirl-]

Why?