How can people recover from ME/CFS, Fibromyalgia, POTS, PVFS, MCS - WITHOUT a Cure?

[@VanWaffle]

After a long history of depression, anxiety, and complex PTSD, I believe I've experienced debilitating ME/CFS for the past 18 months, though it probably began decades ago. It has been hard to get recognition from doctors that it's more than a simple manifestation of poor mental health. When I began to recognize post-exertional malaise, I realized it wasn't all in my mind. Over the years I think some therapies for depression were counterproductive because they focused on behavioural activation, but it seemed like my body sometimes punished me for doing things I enjoyed. After a busy time I would always need to crash. Eventually it became more debilitating and persistent. More recently I've received some benefit from tools like mindfulness that acknowldege body sesnations, and radical acceptance focusing on not judging or fighting the feeling of fatigue. The stress not only affects thoughts and emotions, but also has a distinct effect on the nervous system. I look forward to learning more about neuroplasticity and recovery from ME/CFS.

[@CFSUnravelled1]

This podcast is about understanding more about neuroplasticity for recovery - hope it supports you: kzbin.info/www/bejne/qZXdl4yXh7eZm6s

[@ravenslair117]

Hi Dan!!! It’s so great how much you’ve done to educate people about CFS -ME. My doctor told me I only had a 5% chance of ever recovering. I was so demoralized. I was ill around the time you and Raelan were ill and there was little to no positive information. Now hearing all of the positive stories, it’s remarkable to see how many people recover. The medical establishment doesn’t do us any favors setting already hyper vigilant nervous systems into a tailspin by saying such things. I’m about 85-90% recovered and just started working with a doc on brain training. I’m very excited to see how it will hopefully help me gain the last part of my recovery. I can honestly say I don’t know if I could have done it without YOU, Toby M, and Raelan Agle. You are all wonderful people and I am so very grateful to have found you. 🙏🏻🙏🏻🙏🏻👍👍👍

[@CFSUnravelled1]

Thanks for your wonderful comment and congratulations on your recovery progress. Well, nobody tracks outcomes so I am very dubious about such statistics. Even where they select a decent size group, the question is what kind of intervention do these people have? With unfocussed intervention and treatments and an expectations of no result, maybe 5% sounds right. The question is what does the recovery rate look like for partial and full recoveries when people tailor their approach! Keep going, I hope to see you share your story of recovery one day soon.

[@ezza1236]

Finally good to see a positive comment I’m so sick of reading all these comments about people being sick for 10000 years, I wish those people could just shut up and stop commenting

[@lemuelwilliams1205]

​@@ezza1236 i agree.... they are discouraging the road ahead for those of us who havent spent years in the illness but have spent ah year or 2

[@lemuelwilliams1205]

Nobody wants to be stock like this for 20+ years and time that allows u to welcome your great grand in this illness

[@corinnestevens4705]

This is amazing info. As I am aging - I’m 72- I have been experiencing changes that I didn’t even realize are a part of my fibromyalgia. Especially the brain fog. When my physician at the time brought it up, I really wasn’t experiencing that. Boy am I now. So thank you so much for sharing this. I am subscribed, but was overwhelmed and couldn’t read or listen to another explanation. Your info is so easy for me to understand . I will be back. One more “ thanks Doc”.💜

[@ydnew60]

Thank you so much for the insight and clarity

[@CFSUnravelled1]

Glad it was helpful!

[@Kulaybalbahr]

Thank you for the information and stories you share! More vital than ever is spreading knowledge about chronic illnesses, especially now that others are developing it post-Covid. Another fantastic video!

[@rickdent3999]

Thank you for saving our lives 🙏💞 It's the triggers for my nerves

[@XtraSparklesPls]

This makes so much sense. It is such a pity and a commentary on our microwave way of life that you need to make a video explaining there is no one size fits all easy fix. Where are we that we expect this? Exactly where doctors want us. If we are prepared to LISTEN to our OWN bodies (and minds) and study ourselves we can apply wisdom from others who have gone before us and FIND OUR OWN WAY. I am currently 2/3 of the way through CFS unravelled book and have to admit I was frustrated in the first 1/3-1/2 wondering when you'd just TELL US ALREADY! But now, I see. I understand that there is gentle work to be done to make my way back out of this labyrinth I have found myself in. Thank you Dan for your hard work helping people through your content, courses, books and resources. I appreciate the hard work and effort you put in. It is obvious that you are passionate about the well-being of us PEC's. Thank you again and God bless.💝

[@CFSUnravelled1]

It's not just remembering how those 7 years of illness felt, but the frustration of seeing others suffer. Glad you feel supported by all this.

[@pebbles8908]

Thank you. 42yrs old female 2 yrs chronic fatigued from ptsd stress and over exercising. feeling “partially” recovered but still have triggers. Appreciate finding this channel

[@CFSUnravelled1]

Glad you have made progress. It's really important you address the PTSD with the RIGHT type of therapy in parallel to your efforts to recover from CFS.

[@ronhartwick6036]

Thank you, Dan. Your observations seem quite responsible and sane. My hope for some recovery may flourish again.

[@servideus]

Thank you so much for your insightful videos! I truly appreciate them. I've had CFS for 7 years, which began after a colon infection. It was only three years ago that I discovered certain foods were triggering my symptoms. By avoiding these foods, I've seen a significant improvement in my well-being and stability. Additionally, I've found that certain types of puer tea have been beneficial for me. I've now reached a point where I can work, though my energy levels aren't yet back to normal. I'm hopeful that your videos will guide me towards a full recovery.

[@CFSUnravelled1]

Great to hear about your progress. Regaining health is a journey - the key is to work on multiple fronts and focus on nervous system normalisation. Glad the channel is supporting you with your recovery.

[@tinyshepherdess7710]

Very new to the whole ME/CFS community. I have not been to a doctor about my symptoms because from what I gather reading/listening to countless articles/podcasts/studies/lectures on the subject, there isn't much that traditional western medicine can do and there is often dismissal and stigma involved. SO I am searching for answers elsewhere. I came down with a severe norovirus infection about 8 months ago and it is since then that ME/CFS symptoms have steadily appeared. Prior to the soul-crushing fatigue I experienced following that illness, ME/CFS wasn't even on my radar. I am recognizing the triggers as time goes on, and how they affect me. Hoping to learn more and head this thing off at the pass before it takes over my life.

[@meredithchildress8001]

I do like the video as it makes a lot of sense! I'm feeling desperate to find answers and hearing the information in this video gives me hope! Thank you!

[@keithjohnson1060]

I have just discovered your videos, thank you so much. I've been suffering for about 40 years from what has now been diagnosed as fibromyalgia. Before the diagnosis I dared to ask my doctor whether I could have CFS. He looked at me over the top of his glasses and said "My dear woman (he is the same age as my children!) There is no such thing. It is the product of the imagination of neurotic middle-aged women who want an excuse to give up work" and that was the end of my treatment. Thank God such ignorance is mostly a thing of the past

[@CFSUnravelled1]

Oh wow - that's so ignorant and offensive - sorry to hear that. Hope the recovery stories are supporting you.

[@veronical3135]

Wow, such an ignorant and immature individual. I expected that 50 years ago but in this day and age with so much information, he definitely does not like homework. And insulting you on top of that. His behaviour is unacceptable. Hope he'll grow out of it.

[@EC-yd9yv]

Pain free you is a good channel also.. very helpful 🙏✨

[@susanfisher6939]

I do not remember if I heard this from you or not but I have heard that if “you remove the cause of the illness, you will not have the illness”. After my first flare and I healed, I did not realize that it could come back. Even after the second flare up. But as you get older, less of a trigger can cause a flare and by my third flare, I finally got it. I also discovered your program and did your video course and read your book. The difficult part is my mind wants to do more than my body allows at times, or when I try to “keep up” with my husband or friends. I listen to my body now and it is difficult because I have to say no a lot.

[@danutachea7537]

Thank you very much for this easy to understand and informative video.

[@MarcBraun-tb3vu]

My chronic fatigue was triggered by being served infested or contaminated food during an industrial installation job in Mexico for 6 weeks. I went there a healthy, energetic hard working technician and returned with a really disturbed gut, dark brown urin, aching kidneys and tiredness, slumping leggs and feet while walking. From that point on everything went down hill. I developed a hiatal hernia with gas constantly rising from my stomach into my nose and lungs. My spinal ligaments weakened and now my neck and back vertebrae are frequently shifting, affecting my nerves and spinal canal. I am mostly bed ridden. I feel like I have a very bad flue every day, or like being poisoned. My muscle, joint. and ligament cells seem to not be getting what they need, or are not being repaired properly. I can’t deal with being like this. It’s like suddenly paralyzing the fastest sprinter on the planet from neck down at the peak of his achievements and asking him to accept that and live like that. I think he couldn’t live with that. If this doesn’t get better for me soon I will have to consider exiting life early because I cannot take it anymore. 😓😞

[@CFSUnravelled1]

Sorry to hear that - it sure is tough and I get how you feel - make sure you seek out help from a professional if you ever consider self-harm. The thing to focus on is that recovery is possible - hopefully you took that from the video !? So focus on understanding more about what you can do and if full recovery is too much of a stretch for now, simply focus on partial recovery. AS we get a bit better, we can often do more to help ourselves and we can build momentum - it's amazing what can happen over time as we make many small gains. So sorry for all your difficulties - hope you feel a little better soon. Sending you some hugs mate -

[@ukdaynes]

I suffer from MCS, and while I appreciate your video and hope it helps many, I have to ask: Would reprogramming a canary not to react to toxic gases, or a firewall to ignore threats, truly protect us, or just silence essential warnings of danger? I pose this question because nearly all the ingredients in perfumes and household cleaning products that trigger my sensitivities are, in fact, toxic. I could argue that others aren't sensitive enough; we should rid our lives of these toxins.

[@kristiekylmala7829]

Thank you for the information And the stories.

[@dianafields6475]

Is it like allergies? If you avoid the food or whatever that triggers a reaction, you aren't cured or recovered, but feel better? A few of my triggers are some foods, exercise, large meals, grocery shopping, doctors appointments etc, some medications. And then sometimes I have no clue what triggered a crash.

[@godloves9163]

Exactly, I have sensitivity to all foods basically. Even the basics after a while bothers me. So what can we do?

[@CFSUnravelled1]

Working with a naturopath that specialises in these things to tailor your diet can help. However, in my experience the key to resolving these things is to recover from the illness as a whole, rather then addressing the symptoms!

[@michellejones8561]

What you are daying makes compete sense, only everything is a trigger for me, the cold the heat the light, smells, sounds, lack of sleep, everything is unbearable,, i was perfectly healthy until 4years ago,;since then ive constantly suffered, i did enjoy this video + get what youre ssying, 👍

[@ArrKayLondon]

There's not cures but there are recovery programmes. Cures come from the outside, recovery comes from within. Entirely different things. With a cure it's the Dr's responsibility to give you something to heal you. With a recovery programme you're the director.

[@Rabbi0383]

Sadly all true. 💯

[@juliaa3vb732]

Great explanation and food for thought. Thank you!

[@CFSUnravelled1]

I feel this is such a central and important concept that most people get stuck on.

[@B3l0v3d05]

Does your program have a trauma resolution/informed approach?

[@CFSUnravelled1]

No, the program is not trauma focussed, although it touches on importance to seek resolution to this in parallel to recovery.

[@anonymoushuman8344]

Anyone else out there have the experience of their CFS (not covid-19 related) seeming to be transmissible through close contact? I can't be sure about this, but there have been several instances in my life of people with whom I've cohabited or spent a lot of time in close quarters with coming down with chronic fatigue and/or severe depression soon after close contact with me. I can't help wondering if whatever causes my CFS is contagious, and I surely wouldn't wish it on anyone. But I know this worry is likely to be dismissed by the same medical professionals who have always chalked up my chronic tiredness depression and stress. My experience with this predates the covid-19 pandemic by over 30 years. Treating the depression and anxiety has always helped some, but it doesn't address my constant tiredness and tendency to be easily exhausted when I exert myself.

[@annsan1722]

Hi Dan, vielen Dank für den weiteren hilfreichen Denkanstoß von Dir! Niemand möchte gerne eine unheilbare Erkrankung haben und natürlich wünschte auch ich mir im ersten Moment, dass wieder alles so wie früher wird. Aber war das wirklich gesund? Sagt mir mein Körper nicht vielmehr per Stoppschild, dass mein Geist über viele Jahre Dinge ignoriert hat, die er besser wahrgenommen und damit dann gearbeitet hätte? Ein Zurück kann demnach ja nur ein Rückschritt sein mit dann vielleicht noch ganz anderen Folgen. Mal davon abgesehen, dass das Leben selbst eine immer tödlich verlaufende Geschichte ist und damit gewissermaßen eine unheilbare Erkrankung 😁. Aber das verdrängen wir in unserer westlichen Kultur ja überwiegend sehr erfolgreich. Möglicherweise liegt hierin ja auch mit ein Grund, warum sich die institutionelle Medizin so schwer mit chronischen Erkrankungen tut, gefühlt heißt das ja ständig eigene Grenzen akzeptieren müssen und es besteht die Gefahr, dass man noch auf viel Tieferes stößt, das macht einfach Angst. Wenn ich diese Grenzen aber bei mir akzeptieren lerne und mein Leben entsprechend gestalte, tut sich plötzlich wieder die Möglichkeit auf, auch in schwierigen Momenten noch jede Menge Schönheit zu entdecken. Und dann sieht mein Körper-Geist-System sogar manchmal wieder Wege, diese Grenzen etwas auszuweiten. Ich habe seit 15 Jahren ME/CFS, 13 Jahre mild ohne es zu wissen (und immer schön durchgekämpft). Zum Glück bin ich nach meiner Verschlimmerung Anfang 23 bald auf solche Informationen wie von Dir gestoßen, so dass mir vermutlich einige Umwege erspart geblieben sind. Und mit dieser Hilfe habe ich es von 23 Std bettgebunden und kaum mental aktivierbar immerhin wieder auf Homeoffice in Teilzeit gebracht, wobei es immer wieder eine Gratwanderung ist und ich aufpassen muss, nicht in alte Muster zu verfallen. Danke für Deine tolle Unterstützung dabei!!!

[@ConcettaSpiteri]

I've run support groups for over 35 yrs. I've never known of a cure

[@CFSUnravelled1]

That's because there are no cures. However, people do make full recoveries. If you look at the recovery interviews on this channel or search the net, you will find lots and lots of recovery stories! The key is understanding how and why they recovered, even though they used different approaches!

[@MelissaBurtonx]

Thank you for this

[@flame-on-3]

I have been diagnosed with cancer, I have told the doctor about your program and that you have proved that mind over matter works. He is so closed minded. He says I must stay on the chemotherapy, I'm sick of all this negativity if anything is going to cure my cancer, it's being around positive people not chemotherapy.

[@PeachBoiASMR]

Dude stay on the chemotherapy. The reason why people recover from this is because cfs is caused by the mind. Cancer is completely different

[@Chipncrem]

(I thought u were saying “anus”.) Joking aside yr English is perfect and your suggestions more so. I’m really going to try this. It’s so embarrassing not to be able to keep up, especially since it’s “invisible” to others. 🙏 so much.

[@CFSUnravelled1]

hehe - yes, I have been cursed with that for over a decade now, still struggling to say A........N.........S. Hope the recovery snippets and interviews are supporting you to get your health back.

[@kirstenschweikert7181]

Thank you 😊

[@VickiFrederick-s8c]

No flare Jo’s as I has as a young adult ,everything is continious now

[@maryr7593]

Can you pls refer me to the academic research papers you referred to in an interview from several years ago?

[@Shannon_Robbie]

Do you think recovery is possible for those of us who can't take time off work? This is my concern.

[@CFSUnravelled1]

I have seen many people recover whilst working. The key is to make adjustments to reduce the pressure where possible - such as reducing hours, breaking up the hours, changing the roles/responsibilities and changing HOW you engage with work.

[@SandraGranade]

Thank you, Dan, for this video. I'm working on meditation and clearing my headspace so as to not react to everything around me. One of my triggers is food, and my body reacts to all foods except meat so I have only been able to eat meat for the last eight or so years. Do you know of anyone else who might have this problem and how they address it? Thank you!

[@CFSUnravelled1]

Yes many people have this kind of thing, which is why there is this move towards a carnivore diet for people with autoimmune issues. In my experience, the key is to recover from the syndrome as a whole. As the immune function normalises and gut function normalises, people can start to introduce foods again over time. Working with a physician or naturopath experienced in this can be helpful to pick the right foods to start that slow transition.

[@JoyMorgan-xt3jb]

How are those of us with significant cognitive dysfunction to do these detailed analysis and treatment of ourselves?

[@CFSUnravelled1]

It sure makes it tough. The key is slowly educating yourself to understand how you are triggered, create a healing environment and build up an action plan of treatments and brain-training. It doesn't need to be perfect, just enough to make recovery progress. As you feel better, it gets easier to do more.

[@maxraabe5745]

Hallo Dan, great i've found you just now •• i'll practice your sure helpfull advices, i'll start immediatly😅 and yes, nobody told me this

[@CFSUnravelled1]

Great to hear - hope the recovery interviews and other resources support you in your recovery. Check out the book to get a deeper understanding if you like.

[@kirstensuhr7094]

Hi from Germany!! I don't understand it right i think 🙈what does that mean for me?? I sm bedridden caused by lyme because i can't treat. Cant handle wny treatments....what does that mean for me?

[@CFSUnravelled1]

It means that we have to work on doing things that makes us feel better, through physical treatments and lifestyle choices. Rather then being cured from some singular treatment, recovery from chronic illness is often about climbing a ladder of well-being.

[@edzkieverdidaromero671]

Is sharp pain in the rib cage also a symptoms of fibromyalgia?

[@motogoon2]

Yep sure is, I get a lot of stabbing pain in the ribs during flare ups.

[@johndrocket]

Thank you:

[@lemuelwilliams1205]

Price of your program please... and also unpaid or uninfulenced evidence that it actually works... i want to join

[@Ceretrea]

I have difficulty avoiding triggers because I have a number of chronic illnesses that seem to work against each other. Does this mean recovery is out of reach for me?

[@CFSUnravelled1]

I am not sure if anyone can answer that definitively. What I would say is that we don't need to have 'zero triggers' or some kind of perfect environment. However, if we don't progress with a recovery approach, then addressing more triggers can help get momentum and progress again. The key is start with a recovery approach to be able to assess this question more accurately.

[@Ceretrea]

@@CFSUnravelled1 Thank you

[@tamarapalmeirat4486]

✨

[@maryr7593]

I must be the only one who hears the word 'anus' when you say ANS. I wish I didnt hear THAT word because it diverts my attentiom and I try to figure out what word has to do with the video. Perhaps putting a very small pause btw the letters when you say them could help with this issue. Then again it's probably just me.

[@CFSUnravelled1]

Nope, sadly not. I m u s t s p e a k m o r e s l o w l y

[@VickiFrederick-s8c]

35 years. Pretty much bedridden. Generalized pain and extremely weak

[@ValerieFulmer]

It says my email is blocked.

[@CFSUnravelled1]

please try again

[@Turnerman17]

Sellin

[@lindakelley2676]

Theres no cure and I dont see people in " recovery" either.

[@CFSUnravelled1]

Have a look at recovery interviews! When I started my channel there were no such stories on the internet, now there are hundreds for you to look at - see the link in the description for some on my channel.