Phil's ME/CFS recovery story & call for more research funding

[@a_d_s5361]

This interview was the best recovery story I have watched purely because Phil totally gets it. I struggle with a lot of recovery stories out there because the patients and their stories don’t always resonate with my own personal journey, but this one was loud and clear. Thanks Liz and Phil for sharing this amazing and inspiring story. The best takeaway I got from this interview was to rest on my good days also. And real rest. Stop the push/crash cycles. I spent the first 4 years of my illness (I got sick after a flu vaccine suddenly in 2011 - I was always healthy before ME except for lifelong gut issues and IBS which I believe set the stage for me getting ME) working and pushing to the point where I needed to quit and apply for long term disability. I was then lucky enough when very ill to have a family member organize a way for me to receive Ampligen, which I was on for most of the last 5 years. While that drug helped me tremendously and I even got married 18 months ago it didn’t really prevent PEM crashes so while other things improved, I still declined in other areas due to extreme overexertion. So that’s why Phil’s main piece of advice on resting on good days and doing less in order to feel better was a huge reality check for me. And I plan on accepting my situation and implementing his advice regardless of what I miss out and who I disappoint. But also try and limit my fomo and feel good about myself after saying no and not feeling jealousy and envy of others who are enjoying what I’m missing out on. I missed 3 Radiohead concerts while I was sick and that was the hardest for me haha because they are my favourite band in the world. Phil’s fellow countrymen also from England. But I was lucky to see Thom Yorke perform in 2019 during a very good few months of health. But it didn’t last. Anyways I digress haha Thanks a lot for posting this interviews and thanks Phil for sharing your story and all the hard work you’re doing for our community. It is very much appreciated.

[@philmm64]

Thanks Adam, really glad you appreciate my story & opinions based on my own experiences. I do "totally get it", because, of course, I was totally "in it", for many years. If I'd never had it, it would be very different! I am happy to keep working in the ME/cfs sphere. More needs to be done, & the past 30 years' neglect needs to be overturned. Ampligen - wow I read about that in 1998, and it was super expensive I think. I never tried it. ...

[@jilllindfield2187]

Adam, Im in a dark place, 15 weeks after having my second Covid vaccine….it has totally bought me undone….I felt validated by you writing about your flu vax being the cause, thankyou

[@susienovis9289]

This interview is so inspiring! Well said, Phil. Everything you've said makes so much sense. Thanks! 💖

[@Wombat8003]

"Do less, feel better" is my new mantra! That was an awesome interview, thank you both.

[@HealwithLiz]

Yesss 🙌! Thanks Andrew.

[@lynnlasak4089]

Totally!!! Thanks for recognizing Mom’s!

[@helenlaurenson8974]

Brilliant. Thank you both

[@Lottie_La]

I live in Bristol, went to Millions Missing and volunteered at Action for ME. I loved hearing your story Phil! Thanks for sharing it. I had CBT at a chronic fatigue clinic and they got me to gradually increase walking but they were very strict that you walked the same amount every day no matter how you felt. I tried so hard and ended up after over a year consistently managing 18 minutes walking a day. I felt a bit worse overall with no good days so constant symptoms including general flu like body pain, headaches and fatigue and still got PEM. I could never get past 18 minutes of walking. They didn't make me feel like I had to keep increasing walking as more than 18 minutes just made me more ill. Some days I would feel much worse after walking and it was very painful to walk but I still did it so they saw that at progress. I met someone recently who went to the same clinic as me and actually did recover using graded exercise therapy. She had post exertional malaise as a symptom and was very ill. It makes me wonder why it works for a small minority of people and not for others. I agree that having subcategories of types of ME would help.

[@HealwithLiz]

Hi Charlotte, thanks for your thoughtful comment! Ugh... it doesn't sound like you got great advice. As you describe it, it sounds like 18 minutes was beyond your baseline. I'm also surprised (but not surprised sadly) that they never had you adjust that amount no matter the circumstance, when there are many things that can influence one's ability to recover from structured physical activity. Like the amount of chores you did that day, your stress levels, how your gut is doing that day, if you exerted with a mental task, if you catch a bug, and just having a tough day symptoms wise. I do think there could be different groups that respond to different things - and I also think people's own bodies can respond to different things at different stages. I also wonder if your friend had a better coach (even if it was the same program) OR if she perhaps took it a lot easier (isn't it frustrating how this is the one illness if you try to give it your 100% it can backfire). I'm saying this because I have heard GET recovery stories (though not many), but when I went into the details it was similar to pacing to me in many ways, with them pulling back in many other parts of their life, and going very easy, incorporating rest, and only doing 50-75 of baseline if needed, and only increasing when it felt easy. I appreciate what Phil says about being able to walk 20 percent more is useless if it causes you to feel worse. Sending you my support, and again thanks for weighing in!

[@philmm64]

HI Charlotte, ah did we meet? I was at 2018 & 2019 MM, played guitar at both! :-) I was part of AfME too but that's coming to a natural end now I've moved up to Scotland a few months ago. Your exp of CBT is just the sort of thing that needs stopping, and removing from NICE guidelines etc. Whilst a small (6% quoted somewhere?) of patients *do* improve with GET , personally I think it's better to listen to your body and not push on , the therapists (As i say in the interview) are often goal-driven so want to see you do more EVEN THOUGH you have "no good days" as a result. I just think that can't work; success should be measured by heathiness, not walking-further "achievements". I hope you're able to pace now ..... & good luck.

[@drhomeslice3124]

Thank you Phil, I don't normally watch recovery stories because I often find them unrealistic and hard to relate to, but I found your story and viewpoint helpful. I don't know whether I will ever recover (been 11 years now) but I will try to take on board what you said about how you applied the concept of resting & pacing. I still struggle with push-crash cycles because I very much want to live, I still have a tendency to do more than I am able. Choosing *not* to use up all of my energy is the hardest thing I've ever had to do, and I have done some difficult things in my life! Still learning how to live with this illness, even after many years. Mine started like yours - the worst ever sore throat one day and never been well since. I'm really glad you are doing so much better and able to enjoy your life now, you deserve it.

[@philmm64]

Thank you for the lovely message ! I know you well from Twitter & am glad you found my interview helpful & relateable. I still avoid viruses avidly - they are TOO dangerous...

[@UnstoppableJosh]

Great interview!

[@nomorel7884]

We all struggle with keeping still on the good days. I totally sympathize with you. It's my most difficult challenge. And keeping the mind still too

[@ezza1236]

Why don’t you watch recovery videos, Look at all the people that recover and if they can they so can you.

[@ezza1236]

Why don’t you watch recovery videos, Look at all the people that recover and if they can they so can you.

[@williamnethercott4364]

This is excellent! Sensible and realistic, plus it acknowledges that not everybody is so lucky.

[@philmm64]

Cheers William. I've had some crashes the past 2 years, since video filmed, sadly; but I'm still lucky in that resting does sort me out - takes months these days tho, whereas in c.2005-7 it would be two weeks max.....

[@Julie-wc2gc]

Wow! Thats the first recoverystory I truly do believe! It was also very well and kind said. Enjoy your life to the fullest Phil! You deserve it SO MUCH!

[@iancookson8034]

One of the most balanced and empathic discussions of ME/CFS I've heard and not trying to claim that his path will work for everyone. We were fortunate that we have resisted any advice to gradually improve our sons activity levels and have insisted he tell us what he is capable of doing. Really interesting point about having some complete rest time, away from ALL stimulation. Thanks for sharing.

[@HealwithLiz]

Thanks Ian, and glad to know your son has good support. Yeah, Phil's insights on reducing mental stimulation were something I wish I heard earlier in my journey. It isn't always easy to forgo screen activity and quiet ones thoughts... but time and again I see how impactful this can be (and it certainly was for myself).

[@philmm64]

Thanks Ian, very glad it helped & that you can listen to your son's wishes. People with ME/cf deserve to be listened to, but remember to try to save energy too! (to let the body use that saved energy to *perhaps* start the healing process)

[@lindascott7644]

Great Interview.. Just knowing your not alone makes a difference.. Thank you for sharing..

[@mattrobinson3947]

What a man! Absolutely brilliant interview.

[@philmm64]

Thank you so much Matt! I'm doing it all again now, but at least I know the scare....... (two big crashes in 2022) (after 15 years well!) @philm64

[@carolinesilver3371]

Loved this Liz. Made me cry. Sending hugs to everyone who struggles daily with this disease and I hope we all may recover like Phil

[@Ritasrecoverystories]

Great interview ! You have no idea how helpful these videos are to so many ❤

[@philmm64]

I'm so glad to hear this, & thank you very much, Rita

[@Noosejunkie]

Thank you so much Phil and Liz for this video. I've been recovering from Long Covid (somewhat related to ME) for 11 months, and I've used the principles laid out here for improvent. It was so important for me to find an optimistic message during my first truly horrific and dark few weeks and months of LC. Much love and appreciation to both of you.

[@philmm64]

You're welcome. I hope you're doing OK. I do know a few folk with LC. Including a very long term friend who got it RIGHT after March 2020 Covid wave. She was so ill! Happy to say I gave her ALL the advice in this video! It's taken a good 2- 3 years but she really seems on the up now. Huge difference to 2020-21. nb. Some LC is not really ME/cfs (organ stuff), & some LC is like ME/cfs with bells on - lungs, other vascular stuff. Awful..... Good luck.....

[@clairme_5865]

Really great interview with someone who had genuine M.E/cfs and is so articulate about it. Thank you both.

[@philmm64]

Hello! I actually thought i did not have "real" ME/cfs as i never had muscle pain, weakness etc . Plus I got better. None other than Dr Nigel Speight (!) - in London at a NICE scoping meeting in 2018/19 - asked me over coffee and I told him my doubts - this wonderful man listened to me, and said "You had "Atypical" M.E., Phil". I looked it up and he was 100% right. So I had "atypical" ME, which is still kosha M.E. Hurrah (.... urm.... sort of ..... ). :-)

[@clairme_5865]

@@philmm64 We are just so lucky to have you 'stay around' and advocate for people with M.E. You are a fantastic spokesperson. Thank you so much.

[@philmm64]

@@clairme_5865 Thank you so much for your really kind words, they mean a lot to me!

[@wendyferrer9473]

Thank You for Sharing. It is nice to hear success stories!

[@tammyprovost8320]

What a wonderful and inspiring interview! Thank you both for all you do to help the CFS community!...I have had moderate-to-severe CFS/FM since 1986, and am now 60 years old. It was only 2.5 yrs ago after going through ANS Rewire that I began to believe in recovery once again. I didn't do so well the first time because of bad timing and serious traumas that occurred while I was learning how to implement the program, so I rejoined 8 months ago and have made so many shifts in my thinking and behavior patterns. After 35 years of fighting this dreadful illness, I no longer expect a quick fix, but I know I'm going in the right direction. The hardest thing has been learning to truly rest and stop the pushing madness, but I'm finally getting better at it and seeing some mild health improvements. I try to watch free videos like this - Realan Agle, CFS Unraveled, CFS Health... every few days to keep me feeling inspired on my healing journey. To all you guys looking for hope and help, please know it's out there. God bless!!!

[@RaelanAgle]

This is incredible! Thanks so much to both of you for sharing this ❤️

[@rachael1187]

Brilliant interview - one of the best I have seen and very inspiring. Everything resonated with me. I’m more than 3 years in but have applied the same philosophy and principles as Phil. Like him, I feel incredibly lucky that I was able to rest, pace and go very, very slowly. A good employer, supportive family, friends and neighbours, some financial help were absolutely key. This illness is cruel, not only because of the suffering you endure as an individual but because it’s just not possible for many people to do this. So there is an inequality in the chances of recovery (I believe). The hardest part for me was not having the energy for my children - yet at the same time, that was what motivated me to invest in my future. Thanks Liz and Phil 🙏🏼😊❤️

[@HealwithLiz]

Thank you so much for your thoughtful comment Rachael. 🙏🏼 It is a really important reminder for me to do the work and frame things to acknowledge, even though no one has an easy road with this condition (it ranges from purgatory to the 10th dimension of hell), there is definitely a wide range of difference in the support people receive (and people's load of responsibilities), which can help or hinder recovery. And I, too, appreciate that Phil really speaks on this throughout the interview. Thank you also for sharing your wise words as a parent -- powerfully stated. ❤️

[@MP-uz9xi]

absolutely fantastic. I'll be sending this to family and friends. a joy to watch such an important interview with two such lovely people. such warm and genuine energy, both of you. thank you so much.

[@HealwithLiz]

Thanks for your kind comment! Sincerely appreciate. ☺️

[@virginiaknapp7545]

This resonates so much with my son's situation of having severe ME but it gives me hope that recovery is possible even after so much time suffering with this awful disease. It also makes me incredibly angry that so little research has been done and so little money allocated to finding a cure or treatments for ME. Thank you for sharing this story.

[@icascone]

Thanks for sharing; I was in need of a recovery story! :)

[@ljon008]

Thank you Liz for another amazing interview 🙏🏼and Phil thank you for everything that you’re doing for all of us. This interview has some really amazing pointers to get our health back. Phil I’m with you when he said “I don’t wanna be rich I just want to be happy “. This illness also changed a lot of my mentality/perspective in so many different aspects.

[@jennymcguigan7329]

Wow wow wow!!! Thank you so much Liz and Phil!! I'm not exaggerating to say I found this interview life changing! I'm going to go and do lots of sticky notes so that I don't forget. So enlightening!!! Amazing to know there are people like Phil working so hard for a cure and for acknowledgement of this awful condition!!! Xxx

[@HealwithLiz]

Thank you Jenny for your kind words!! So glad to hear that. 😊 Sending you my support. 💖

[@jennymcguigan7329]

@@HealwithLiz Thank you so much liz and for all you do ❤

[@ceciliamac4283]

Such a good interview! Thank you!!

[@cwright1971]

Really useful. Thank you both. Stay well.

[@nomorel7884]

Wow, this really is going to help me. Thank you

[@elainestammers3851]

Thank you Liz and Phil. I enjoyed hearing about Phil's story with ME and his recovery. Having been ill with ME myself for nearly 20 years and improved at one point, but now going downhill again, it was good to hear Phil's reflections on Pacing in particular and how it helped him. In my case I don't think it was not Pacing well that sent me back down (it was a combination of my husband's sudden death last year, and then particularly having Covid last Dec and then the virus dragging me down and impacting on the ME).Now I think I will need to take myself in hand though and do a better job of it.

[@mutzicat]

I went through almost exactly the same things, 13 years ago. I had been very active, both happily but also with a great deal of stress (people-related) to deal with. Too much on my plate for sure, and drinking much coffee. It took 6 years to get back to almost normal. I must stress that it was naturopathic supplements and learning to pace that got me the last 20% to 'almost' normal. From 2015-2021 life was great! I could walk for 2 hours, I could do an hour or more of Tai Chi daily, my head was quite good but couldn't read for more than an hour a day, I could work 3-4 hours daily teaching music again. One thing that I couldn't quite get back to normal was playing sports - I had just begun to be able to hike and swim and energy seemed really good in 2021. Then I just did too much, a stressful move by 'hand' (u-haul) and renovating a townhome plus moving in to a new place where I set to work on heavier-type of yardwork... because I felt so good! Suddenly I began to feel dizzy upon rising each morning for a few weeks. Then my digestion started to get strange, lots of bloating... I had began to binge watch series for hours each evening, so my lifestyle was really overdoing things (something I had stayed away from for years). One day all the energy was gone. I have spent the last 7 months slowly improving.... still resting much of day but when I'm up I feel quite normal and can even weed the yard for half an hour a day... but the first 4 months this time were challenging - luckily I could just manage cooking and showering, I had a lady delivery groceries to me. So maybe its more a relapse than full-blown. All said, I would like to stress that supplements can be very helpful, but you need to find out what your body is needing (we are all different) and find a good, reputable naturopath who knows the illness. I was lucky to have a good naturopath, it does speed up the process for sure. It has a been a great spiritual lesson and I have learned to appreciate so much that went unnoticed before as well as to understand better what in life is important and what is not.

[@helensmith6229]

Thank you for a great interview this was very relevant to me and helpful

[@HealwithLiz]

Thanks Helen! ☺️

[@ShermanTank13]

Ah you hit so many perfect key messages in the first 10 minutes - super effective and profound thank you so much for sharing and bringing it to us!

[@HealwithLiz]

Thanks Jenny!! ❤️❤️❤️

[@philmm64]

Wow thank you - am very glad you felt the messages were good!

[@5000NATE]

I'm finally feeling better after 11 months I have more energy I started meditating I started real slow I kept crashing when I kept working hard at the gym and I decided just to lay down in bed go for long walks to a duck pond and it finally made some significant

[@gut_spiller]

Thanks Liz and Phil for a really good video. I've had this for 7 years and after watching countless stories on KZbin and looking at my own experiences I feel it's clear that I need to remove pretty much all of my activities/stresses/responsibilities to give me that room to rest and heal. I am lucky in that I can still be moderately physically active if I want to be (I have a lot of problems mentally) but this is a blessing and a curse as it keeps me with at least one foot in a normal life - then I feel I am just limping through life and will never hit recovery mode. I've tried moderating things whilst still living somewhat normally, working, socialising etc., but after 7 years and no real improvement to speak of I feel I need to spend some time away to focus on rest and a true recovery; I find it very hard to do in a city or environment surrounded by my job/friends/countless opportunities to use up energy. I also find it hard to stop everything because I love doing things, but I'm realising I will have to draw a line in the sand at some point. I've had a couple of extended breaks by getting away in the past and really enjoyed them. I feel I have the knowledge and experience now to make the improvements I need to given the right environment. The graph you showed at the end about the quality of life is really useful and illustrates something I often try and verbalise. It's no way to live.

[@HealwithLiz]

Hey Jim, thanks for your comment. Just wanted to say I support you taking a break. My own upward trajectory (after a bad setback) began when I went away for a few weeks and really unplugged (short trip). I was at 10-15% after post-exertional crashes and 40-50% on good days then. I then came back to a city, but for 5 months or so I stopped work/side projects, canceled holiday plans, and focused on my healthy routines with significantly reduced screen time. I then started to see my capacity expand significantly. However, I then got addicted to physical activity increases, stopped some supportive things I was doing to support my autonomic nervous system, and you know what happened. That said, it ultimately was a good lesson for me and I was able to learn from it and rebound. I have been feeling great since Fall 2019. Phil's words about making the goal about feeling better vs doing more really resonated with me, too. This video was a great reminder that nothing should ever come before my health. Sending you my support and encouragement to put your health first!

[@gut_spiller]

@@HealwithLiz Appreciate the comment. Deep down I know it's the only way but as a self-employed person I'm going to have to manoeuvre things into place first so I can do this. Am I right in thinking there isn't a video of your journey on this channel?

[@jimnevin2255]

Thanks Liz and Phil for an informative interview. I have had CFS/ME for a similar time as Phil and was pleased that he received helpful advice so early. Back in the late 1990's it wasn't all that common and here in Australia at least you were pushed out the doctors door and left to your own devices. The idea of surrendering to the illness and to stop fighting it sounds counterintuitive but it can be the basis of recovery. Personally I learned the difference between acceptance and resignation the hard way but only started making progress after I did. I feel a great deal of empathy for parents who have both a chronic illness and young children. When my parents were in their later years and needed help I only just managed to keep going and made no progress in my own recovery for some years. I can't imagine what it would be like caring for children full time when the carers are so ill. Phil ,I also did my hardest rockclimbs while still recovering from CFS. After getting some energy back I had to relearn climbing and most everything else to become more efficient. I've only ever heard of a few other climbers beside yourself who have the illness. A big thanks to you both for the important work you are doing for our community. For years I had never heard of any CFS recoveries and these stories give a lot of encouragement to those of us still on the road to recovery.

[@HealwithLiz]

Thanks for your thoughtful comment Jim! It is much appreciated. And very insightful about the basis of recovery & the difference btw acceptance and resignation.

[@stevenpeers3177]

Thanks Liz and Phil, this inspiring interview has given me even more hope of a recovery for my daughter. "Doing less to to feel better" and "feeling good, not doing more" are statements I shall that I will pass on to her to add to her daily routine. She currently is 'doing more when she thinks she can' which isn't necessarily improving her condition. Thank you both again.

[@HealwithLiz]

Aye, such a powerful insight. Thanks for your comment Steven. Sending you and your daughter my support.

[@philmm64]

Hi Steven, thanks and I'm really glad that my message resonates. And of course that if she does less, she might feel better - which *has* to be the goal! Phil

[@homemakersheart3614]

Thank you Liz and Phil. Phil has helped me look at things from a different perspective, such as "it's not about doing more, it's about feeling better". I want to listen to it again to help solidify the perspective shifts. So important for recovery. I would love to hear more detailed examples of how people increased or integrated back into full daily activities. It seems we hear of the idea of increasing slowly, but hearing actual examples helps me to place that in my life. What does it look like to start getting groceries or errands again, or going out for family events , gardening etc. How do you do just a little of those? As always, you do such a great job with restating and great questions. I appreciate the restating what they said, it helps it "stick" for me. Hugs.

[@philmm64]

Hi - thanks - Phil here. I've not re-watched it in full for about 2 years, but maybe I should. I did a "avoid PEM" short video last spring. You quote what i always think is the main "point" of my interview - "Do Less to Feel Better". I even hashtagged that on Twitter for a while! :-) kzbin.info/www/bejne/rIGoZ4mZqsZrp5Isi=KL2jedlz6j7ENOOg

[@vivscottow1269]

Great interview and some good questions Liz. x

[@HealwithLiz]

Thanks so much Viv ❤️ ❤️ ❤️!!

[@susanhardy6044]

Thank you Phil and Liz for sharing this interview. Learning to pace is the hardest thing when you have ME/CFS but it’s an absolute necessity if we are going to have any sort of ‘useful life’ when living with this life limiting condition.

[@Kaspleen]

Thank you, I have made some notes based on what was said in this interview. Thank you for the hope

[@Fern7441]

Great interview! Thank you

[@HealwithLiz]

Thanks Dianne!! Appreciate your comment. 🤗 ❤️ I got some good takeaways from this one myself, just for life!

[@bobbiev7062]

Thank you for everythng you do, Phil! Awesome interview, Liz!

[@HealwithLiz]

Thanks Bobbie 💖!

[@kathystoner5239]

I loved this interview so much! Phil your wisdom really helped me a lot! I too often base progress on what I can do, but then I push too much and flare or crash. I realize now that progress should be based on how I feel, not about doing more. Doing more is not worth it if im constantly feeling horrible and crashing all the time. I realize I need to find my baseline and stick with that for a while before trying to add more things and just go slowly. Thanks for all you do and all your help Phil! Also thanks Liz for all you do and sharing these stories!

[@HealwithLiz]

Thanks Kathy, really appreciate your comment! Yessss -- "progress should be based on how I feel, not about doing more." Sending you my support!

[@philmm64]

Your'e welcome Kathy! I've just had a viral induced crash but I'm applying my rules & hoping i will be out of it soon. Doing less -feeling better - is the way! Minimising crashes.

[@hysca5]

Thank you Liz. This video was an other amazing one.... and it also made me cry. Your videos touch my heart Liz! And thank you Phil. It is really amazing what you said. It is so clear that you are for so long into the subject of ME/CFS. Your experience is livesaving for us. So much truth in one hour :-) "Stop fighting" is bringing it to the point. And "it's all about feeling better vrs. doing more"... That's the best point I heard so far in terms of pacing. Thank you both for doing this work. You don't know how much you help me/us with this videos and all your work and thinking and digging deep to help us. Thank you thank you thank you....

[@HealwithLiz]

Thank you Lisa ❤️❤️❤️ Your kind words brightened my morning and touched my soul!! Sending you my deepest support and encouragement!! And I loved those parts, too!!

[@philmm64]

Thank you Lisa, really appreciate your reply...... good luck to you

[@dormousey1]

Fantastic interview. I could relate so much. Thank you both for this, it's so helpful and I'm going to share it everywhere. 😊

[@HealwithLiz]

Thank you so much Denise! 🙏 Much appreciated. 😊

[@philmm64]

Thanks Denise, really glad you liked it & thanks for sharing!

[@yeeahd5327]

Thank you :)

[@nomorel7884]

Thank you for this video. It has given me hope again. I too have had to give up music even tho it was giving me something to look forward to. At least there is hope of returning to it when I recover. I'm going to surrender and just let this be so that I can recover. I'm 5 months into the ANS recovery program and was seeing some small improvements, but as soon as I started doing more as advised on the program, I started to go backwards. I will continue to rewire thoughts as per the program, but will follow Phil's advice and just keep resting, even on the good days. Thank you for this video

[@philmm64]

Good luck. I'm not too familiar with ANS. But i would say that your increases - IMO - should be done when *you* feel ready, not when some "program" tells you to. I tried absolutely telling myself I was fine (later on in my illness) when cognitive symptoms hit - it NEVER EVER worked. OK , so i wasn't on some neuro-linguistic or "rewire" training program, but oh god! It never worked. Ever.

[@lindawallace369]

Wow! This has been such a great interview! Thank you so much Phil and Liz! I am about 90% recovered from Long Covid ( I believe many of us have ME/ CFS). I have been struggling with this for 1.5 years now. I have tried so many things. Resting EVERYDAY has been a real “healer” in my life too! Turning off my mind has been even harder than forcing my body to rest. My son is about to leave for the military. I told him the military will teach you how to work hard and push through to do amazing things! But before you go, I am am going to teach you to rest, let go, and recharge.🥰 I want to prevent my son from ever experiencing ME/CFS.

[@HealwithLiz]

Thank you Linda! Your comment will be so helpful to to others with Long Covid (and I agree). Sending you my support, and wow, what great wisdom you're sharing with your son. 🥰

[@TheBushRanger.]

Linda have you fully recovered yet?

[@lindawallace369]

@@TheBushRanger. Hi Ryan! Yes I have recovered fully! I can do everything I could before I got sick. The only exception is I am sensitive to gluten. But as long as I stay away from that I am wonderful! Who knows in time my gut will correct itself and even that will go away! Only time will tell! I pray that you fully recover too! Btw! Another you tube site I find helpful is “Pain free you.” I listen to his short talks everyday to keep me doing good self care so I never have this happen again!

[@Random_edits3]

Thanks Phil for sharing, there are some good take aways here, that I can use for my long covid recovery - god fatigue sucks! And thanks Liz to you also 😊

[@HealwithLiz]

Thanks Rhian! Sending you my support! 😊

[@stee4703]

Great interview. I've had some progress after some hyperbaric oxygen sessions. But pacing and rest has really helped me.

[@Migrainesavvy1]

Great interview Liz. I rarely watch recovery stories because I've had ME since 2005... it's 2024. It's been relentless. I'm wondering what progress Phil has made with that new job, and if he is still thriving. I hope I can thrive now too, found you in the DNRS world, started doing Yoga Nidra every day a few months ago, so I hope I am on the right track. Some key points here to help me on my way. Thank you.

[@staceyireland1062]

Thanks for the tips, each journey is different, so blessed that you have recovered/better quality of life. I like to use better quality of life. The discrimination and journey I am on is challenging. I am in New Zealand and have set up a support group with two others. I have been suffering for years but not long diagnosed. Thank you for all the work you do bringing attention to this.

[@HealwithLiz]

❤️

[@kaisak6788]

So appreciate! 💚

[@ljon008]

And Liz , we are all excited for your upcoming videos 👍🏼.

[@HealwithLiz]

❤️

[@emmacarolan1010]

Such a great interview, really helpful insights on proper resting and how to measure progress. Thank you both so much 😃

[@saxifragas]

[This turned out to be a very long comment - it just kind of spewed out - so apologies for whoever tries to read this.] Thank you for this interview Phil and Liz - there is so much valuable information in it and I think it will help give many, many people hope that there is a chance of remission (I don't like the phrase 'full recovery' for reasons I share below) from this awful illness. I eventually came to the same conclusion as Phil that the less I did the better I feel and my mantra (or my list of what I am going to do today) is now 'Rest, rest, rest, rest and when you've done that rest some more.' It is the opposite of most illnesses. I do move my base line but very carefully, very slowly and with some trepidation, and have gone from being bedbound in 2015 and having to rent my house out and move in with a friend and her daughter who cared for me to now being able to look after myself (with support from two of my adult children and friends )and (much more often) be able to feed myself and keep myself clean (the house not so much) and I am hopeful that I will get much more of my life back eventually. My epiphany this week was that ME years are a bit like dog years so what would normally take you a year takes someone with ME 7 (maybe 10 or even 12) years to achieve. I am 62 now so maybe it's a slower recovery from resting than it would be for a 30-year-old... I feel that is probably true. I nearly didn't watch the interview because of the words 'full recovery'. Over the years I have watched a few 'full recovery' stories and it was so clear that they didn't have ME in the first place just from what they were describing. Phil himself says that he still has to be careful with certain things and that he has very minor relapses maybe once a year. I wonder if 'remission' would be a better/clearer choice of words because I don't truly feel you can ever have a full recovery because there is always the chance that if you do something your body doesn't like it can put you into relapse again. I know this because ... I was very lucky when I was first diagnosed in 1994 because my GP knew I wouldn't complain about something that I wasn't feeling and he sent me to a teaching hospital where I had every test imaginable over a couple of months and was diagnosed with ME and told I would be in a wheelchair in 6 months. A few months later I had a long-awaited hysterectomy and came out of the operation 'fully recovered'. I felt as if I had never had as much energy in my life - the staff (who didn't know I had ME) thought I was Wonder Woman because I was up and walking within 2 days and needed very little pain relief... I just felt so well. I thought I had been misdiagnosed and that it must have been something hormonal. In 2011 when I was rediagnosed the ME specialist told me that in some countries they use anaesthesia as a 'cure' like jump-starting a car but we don't use it here because it doesn't work for everyone. It doesn't even work every time for everyone because I have had a few ops since my re-diagnosis with no such result. In hindsight, between diagnoses, I did have minor relapses where I thought I had flu. I would feel so ill (bones, muscles, skin and even my hair hurt) that I had to go to bed and sleep and then 48 hours later I would wake up feeling fine. I thought Beechams powders were a miracle cure and my partner at the time, who would see how ill I was, thought I was the strongest person he had ever known because I got over such a bad illness so quickly. Of course ... they were ME relapses. I had a full-on life for 15 years from my hysterectomy to my major relapse. I had three children, was a single parent, worked more than full time, had a full social life and was usually the social secretary for my friend group and did all the organising, I kept a 4 bed/3 storey house clean on my own, I went to the gym 5 or 6 times a week, I rode a quad on and off-road and so much more...I never stopped and had gone back to my life pre the first diagnosis but was fitting even more in somehow. The minor relapses started to come more often. I noticed that if I got cold I couldn't get warm again, if I got hot I couldn't cool down. If I went out with friends I was the one who didn't want to go home and didn't understand why people half my age got tired when I was still raring to go (I now know that I was running on adrenaline for the last few years before the relapse). I started a one on one pole dancing class to get my core fitness to the level of the rest of my body and that was the start of the end. After every lesson I would sit in the car shaking for 20 minutes before I could drive home and then have 'flu' for a week. I cancelled every other week's class then would feel better and go back - I did this FOUR times before I realised it was that making me ill. I saw my GP (by then a new surgery) and told them that I felt like I did when I had Glandular Fever and when i was diagnosed with ME and my GP told me to eat more healthily and do more exercise. I was teased (in a nice way) for my healthy eating and to this day my friends will say things like "I thought of you today I had a 'Sals Salad' for tea". I left and went back to bed for three months. The third GP I said this to in about 2 years said "What do you mean 'when you had ME', if you have ME you have it forever. You can go into remission or relapse but it's always there'" and sent me to the ME clinic where I was re-diagnosed. I think what triggered the relapse was not really the pole dancing that was the straw that broke the camels back - for about 5 years I had been going through a lot of stress from a relationship that had got more and more mentally abusive over time and that piled onto the full life I was living was just too much for my system to take. So, that is why I say 'full recovery' does not give the true picture and it's such a brilliant and useful video with the perfect advice for ME sufferers but it may be offputting for someone who has had my experience with 'full recovery' videos in the past. 'Remission' denotes 'I still have ME but can now live life to the full whilst still being mindful that if I really push it there is a chance of a relapse.'

[@HealwithLiz]

Hi Sally -- thank you for your thoughtful comment and for sharing your powerful story and insights. I do think the message that we're not "one and done" is so important, and I truly thank you and appreciate your story. It will help others reading this! Sending you my support. And I can see how it would be off-putting for people who have had relapses. The reality is there is no fix and we're done. I'm doing a video with people who returned to good health next and painting a realistic picture of life now (it's hopeful because we are all feeling good living full lives, but realistic in that we are looking after our health - though not as intense as during recovery when our bodies needed extra care). Being candidly real with you, I don't know if people would have found my channel if I said "ME remission stories". To me remission seems like cancer lurking and kind of scares me. For me, personally, I like to think of it as "tending to my good health" rather than preventing a relapse. I do know that if I had a combination of 2 or more of prolonged mental or emotional stress, environmental stress, got a bug and didn't really rest, I would set the stage for me to get ME/CFS again. I have a neighbor that had wise worse about relapsing -- and told me to "avoid the stress creep" and having TOO much fun she said. She had a relapse when she was 65 from partying too hard through a bug after working 8 months on a client's project who caused her lots of stress. That was very similar actually to her original onset at 49, which was glandular fever and staying up till 2 am dancing with a younger man, and extreme bike riding when she started to initially improve vs taking it easy. Second thing -- I would love to get a quote from you perhaps to include in the video I'm making, feel free to email me, I'd love to connect! I think this is great wisdom and people would really benefit!!

[@saxifragas]

@@HealwithLiz Hi Liz. Thank you so much for your swift and full reply - I very much appreciate it. I have to say that I do understand your aversion to the word remission and why it conjures up the thought of cancer - it kinda does for me too but I supposed that there are very few illnesses that you can come and go from, most things either you get and get over or get and never get over (slowly deteriorate) so I figured it would be a good word to appropriate and use for ME because so so many people don't think there is any hope of coming out of it. I guess also I got invested in the word remission because it was the word my GP used when she explained that once I had ME I could go into remission or relapse but had it forever. I use it to explain how much better I have got and I was thinking that in the future I would need it to explain why I still couldn't do what everyone else might do to push through when I appeared to be totally normal. i.e I would love to but I'm in remission from ME and I know that if I push it there is a chance I might relapse ...' I am sure there is a better choice of phrase than 'full recover' or 'relapse' that describes where you are and where I am working towards. I have a theory about why we get ME which is that our systems are depleted of natural vitamins/minerals (different ones for different people) that we need to keep ourselves 100% healthy and that the main reason for this is probably stress. I have heard from so many specialists that no couch potato ever got ME and stress is part of most of our lives in some way when ME strikes. Stress depletes the system of magnesium because as soon as you get into a stressful situation you go into fight or flight which pulls all the magnesium out of your system to make adrenaline. We know that Magnesium is needed at optimum levels to keep something like 320 processes in the body working properly (and it is now thought it's likely to be nearer 800). For instance, we can't make vitamin D without magnesium so we could be in sunlight 24/7 but if there isn't enough magnesium to transform that sunlight into D then it doesn't happen. SO much more to say about this but won't here. Have found an email address on your website so will try to email as you requested via that - would love a pointer about what you would specifically like a quote about and would be honoured to do that. What you are doing is amazing and if I can help in any way at all I most certainly will.

[@siobhanchristine-bligh183]

Phil is a very good speaker. I’m giving up at the moment as well. I’m really scared that I’ve fucked my self up by doing things as I’m slowly getting worse

[@HealwithLiz]

I heard a friend say "surrender to the experience". Able to fully accept where we are now in this moment, but it's still being open to what might happen in the future. I think the fear of "I fucked myself up" is a huge huge one for everyone who pushed in the beginning and ended up bed or housebound. But you can un*F yourself and heal. I was just remember there was a time I couldn't even look at a screen or easily stand for more than two seconds. Go easy and be mindful (and forgiving) of thought spirals which can add more stress further driving your body into fight or flight, which is not conducive of healing. I love how Phil talks about clearing his thoughts and the importance of reducing mental overstimulation.

[@HealwithLiz]

Also my friend has an affordable 3 week pacing course -- Pamela Rose, see her interview with Luke on Raelan's channel. So you can learn tips to pace (and get more restoration in) with the energy you currently have.

[@philmm64]

Thank you Siobhan & am sorry you're getting worse. I had a terrible crash in January this year ,& gave in 100%. Luckily, to my surprise, it worked & I'm now super well again (still gutted I lost my job at DecodeME, tho). I am holding back on the running for now! the main thing I'd say is - do less to feel better. The goal should be to feel ill less of the time, not do more. Easy to say & hard to do, I know. Good luck...

[@rabbikernow1]

Fantastic guys, thank you xxx

[@HealwithLiz]

❤️

[@annahewson2310]

Wonderful interview - I do think a physical cure is needed, holistic a bit like Phil says, diet, me advise, pacing etc, but even more in my case *tried all those multiple times* My grandad had mnd (noone else we know of in family but had a keen gut brain connection - stomach migranes, my mum also gets those), and I am pretty scared of aggravating (these recently defined as minor motor symptoms) that seem to be connected to me css (and make sense in my case due to keen gut brain connection). Totally agree on brain rest, and cleaning or doing something with nothing. Totally agree my brain needs more rest than body. Totally agree on tea too. Lemon balm is my saviour at times. I hope a cure is found soon through the gut and then nervous system.

[@Jane-pg8jv]

Thank you sooooo much for sharing! ❤️❤️

[@HealwithLiz]

Thanks Janna! ❤️

[@melindabrown9718]

My GP diagnosed me straight away. He’s always told me I’ll get better. I’m quite lucky I’m mostly mild, I can work out very gently. I don’t really get any pain. I’m very certain mine is because of PTSD. I’ve temporarily recovered twice now, strangely enough I recovered while pushing through. Since I stopped work I’ve actually got worse, the less I do the less I seem to be able to do. Very confusing. If I’ve recovered twice I can do it again.

[@melindabrown9718]

I’m a mum and my partner works 6 days a week to pay all our bills. My son has sensory seeking so needs double the movement of a normal child. Let’s just say CFS and Sensory Seeking don’t mix 😂

[@HealwithLiz]

@@melindabrown9718 Being a mum is hard work! Sending you my support Melinda. I appreciate how Phil talks about the different onsets and subgroups. I have a PTSD-triggered CFS recovery story coming up next month. ❤️

[@melindabrown9718]

Sounds amazing! Can’t wait! Thanks for everything you do x

[@robcole5923]

Melinda, sometimes doing too little can be detrimental as well. Too much negative stress is bad, but too much rest also seems to be bad. Many patients find that doing pleasant activities can help with recovery, and I found this helpful for myself (now fully recovered). Good luck!

[@HealwithLiz]

​@@robcole5923 Thanks for your input Rob! Right on, I agree enjoying the activities makes a difference. Aye, I think people are often pressured or in a situation that if they have small/moderate amounts energy trying to use it all to contribute with chores or earning money. Thanks for your wisdom. Feel free to reach out to me via email, would love to learn more about your health recovery!

[@Wraithand]

Very similar with me, ups and downs for me had months when I was off work. Had a very understanding Occupational Health doctor at work. I remember walking to the shops 5min away and this wiped me out for 3days. I could always look after myself but struggled a lot with sleep really disrupted and this was my biggest issue. GPs were not helpful.

[@deion312]

Thank you liz. For me, having a smartphone has been amazing! I listen to audiobooks and youtube videos on the mindbody connection, mental health, and cfs recovery stories. And I listen to guided relaxation meditations. Smartphones are helpful is you use the smartphone instead of letting the smartphone use you. I also allow zero notifications on my phone and I don't use any social media.

[@HealwithLiz]

Thanks for your thoughtful comment. For me turning off notifications was also key and removing the social apps. I have found myself recently getting pulled back in (checking my KZbin, lol) but I am aware of this and reminding myself to be more present and leave the screen. I found Insight Timer good, a meditation app that offers some content for free. My favorite was one by Melissa Ambrosio. Recently I started to listen to sleep stories on Calm in lieu of meditation. There is a good one with Cillian Murphy taking listeners on a train ride through Ireland. Love it -- using the smartphone vs it using you!

[@liannesykes8907]

Thank you phil and liz for this true, matter of fact run down of cfs.

[@lilalilac4522]

Wow, it took 4 years of complete rest and "giving up." I'm glad you recovered somehow. That's hopeful (although I see sadly you recently relapsed). However, I don't know how I'll be able to fully give up and rest with a high energy 5-yr-old that I have to home school now since school is not safe with COVID. This is sheer hell. The pandemic has extinguished any flicker of hope for recovery because all energy has to be focused on not catching COVID and keeping my child entertained and educated every waking hour. I have no idea how I'll ever be able to rest. It's been 5 yrs already, past 2 years much worse after getting flu/maybe COVID.

[@HealwithLiz]

Hi Lila, taking 20 minutes out of my morning to respond here, in case it's helpful. Coming from love. Pamela Rose is a UK-based pacing coach who helps many mums across the globe get a handle on their every day so they can cope better (she has a "deal" then "heal" approach). It's actually her birthday today. I think she might be booked for a little while for 1-1 coaching but has an affordable 3-week group course. I would also check out my interview with Dr. Cathleen King, who is a mom of 2. She became severe for years and wasn't able to really be present for her young kids for a while before her upward trajectory. Her approach wasn't resting since she was already bedbound - it was polyvagal and limbic system related. I personally took an all-of-the-above approach including asking for help from others and setting clear boundaries (I didn't have kids though). My main focus was on building nervous system resilience and calming my limbic system (through lifestyle/sleep hygiene/low-glycemic diet), breath work, meditation, and neuroplasticity. They just published a paper yesterday (can't include links in KZbin comments or it will hide the post) that ties Long Covid with limbic system injury to the brain affecting the grey matter. I knew if I wanted to hang out with family Covid was inevitable. I got covid over Christmas and bounced back from it 13 days later (went on short trip to sunny weather and that helped). I have done so much work focused on my nervous system/brain, but could be doing more. They have done brain scans on people who do this work that shows meditation and similar things can improve grey matter of the brain / limbic system. I did more than meditation though. Since I'm hoping to have kids soon, I realized even though I haven't had symptoms in a while I can be doing more to build my nervous system resilience (I got stuck for a little time in fight-or-flight when two trolls attacked me online and a family Christmas fight). I recently signed up for Dr. Cat's Level 2 Primal Trust course which is amazing, though it doesn't seem like this is where you are at right now, and I think you'd benefit from getting a handle on your day to day life, and seeing a pacing coach. Your kid doesn't need you to kill yourself trying to entertain them and feel like it's their fault. You may have to make some small and some radical changes to save your life and inspire your son. I know it's s**t and I know you're going through a lot. Sending you my support.

[@HealwithLiz]

One other thing, I saw on your channel you might live in an old home, which suggests mold could be a driver. You may want to see a specialist to test for an inflammatory reaction to mold driving your symptoms. Allergies are something different - I did not have those, why initial doctors missed it. The test is the C4a inflammation test and the Great Plains Lab Mycotox panel. Any one with a medical license can order it. My solution was moving without furniture and going to a sauna to sweat it out. Then doing a lot of work on my limbic system, so I could live in society again without a limbic reaction (since any exposure before I worked on my limbic system would precipitate PEM).

[@lilalilac4522]

@@HealwithLiz Thank you for taking the time to respond! Oct 2020 I went super low carb diet and I did notice some improvements. But after 5 months of being really strict I was super hungry and exhausted from chopping so many vegetables for salads, so I eating more carbs again. Seems I got worse again after that, so now I'm struggling to return to my strict diet. I'm a pharmacist so have been following as much research as I can (yes, I read the scary Nature study that came out yesterday re: 0.2-2% reduction in grey matter) and reading about various supplements, dietary changes, etc, but hadn't given much thought to meditation & limbic system retraining. I had the vague impression that limbic system training involved exercise & kinda just ignoring your symptoms, but I haven't studied it much. I'll have to look into meditation techniques. My fatigue was triggered by insomnia that started during pregnancy and which got worse due to crazy breastfeeding schedule to the point where I didn't sleep at all for several days. It was horribly traumatic but a doctor literally called me "hysterical" when I went to be seen about it! The insomnia was severe for over 2 years (seemed like fight or flight mode was always ON, heart racing all the time), started to improve in year 3, but then I got the flu/COVID in Feb 2020 and now I have almost all the symptoms of CFS + some symptoms of Long Covid . Maybe COVID reactivated EBV infection from ~2010 too. Thus I doubt it's a mold issue but it's still worth ruling out with the test your recommended (I no longer live in that house, but another old house -- I did have it inspected for mold when I moved in 2017 & they claimed no mold). Thank you again for your input!!

[@HealwithLiz]

@@lilalilac4522 Hi Lila, your story is very familiar to myself and others. I too began with an ultra low-carb diet which I was on for a long time, but that became a crutch. My EBV also reactivated after a flu-like virus, and it was also driven by mold. If you took the same porous furniture and books/papers with you, it stays in furniture and books/papers. Instead of paying for expensive home testing, the lab and urine test I mentioned can actually tell you if you're currently being exposed to unsafe levels. The goal isn't to avoid it 100%, that is not sustainable, but if there are extreme levels to know and deal with it in a thoughtful way, as that can be a common healing blocker. I did not receive a drop of breast milk and my mom never once entertained me -- we were given worksheets from age 4 and books to read and legos/dolls. Not saying that's the way to go, lol - ha (that upraising caused me to constantly push myself). But it sounds like the other end of the parenting spectrum, which you're doing (trying to be the perfect mom without healthy boundaries) you're driving yourself to a place where your body will say no for you which it's already doing. Your son doesn't need a martyr, your little guy needs YOU in your best health. This might mean taking steps that you might feel make you a bad mom today. Because there are little resources out there, I see a lot of moms not bet on themselves and their health because they are just trying tred water, and continue to push themselves through and suffer. Pamela definitely is good at helping moms with this (she also helps dad's professionals -- everyone really) for the pacing aspect and covers the mindset aspect too. Lorie Solay helps with the mindset aspect for moms to help them put themselves first/set boundaries (she also helps other types of people). I too thought anything brain rewiring/neuroplasticity related was optimistic thinking and pushing through, but that's not actually what it is. It's reassuring your self you are safe, regulating your nervous system, and (the program I did) generating elevated chemicals in your body through imagination to induce a parasympathetic response and get out of fight-or-flight. It's about building autonomic nervous system resilience. I did it with an easy open approach, and did not push myself whatseover. I took Phil's approach to increasing movement --- when things felt easier --- THEN I did more. However, one of my super type A friends aggressively pushed herself through neuroplasticity and had a coach (I didn't get the coach add-on and did it by myself) the young cheerful guy who also was aggressive about the incremental aspect, and it helped her in the beginning (she went from bedbound to walking 2 hours) but she had a setback then stalled because she needed a gentler approach. She then actually found it was time for her to do somatic work and be in her body with the sensations (she doesn't think she could have done this without doing the brain retraining first) and also to process trauma. Aye, all of us have been dismissed by doctors, sorry about that. A guest on my website, not the one on my channel (go back early she is the one who was pregnant in the main photo) who recovered from CFS later experienced a setback after postpartum insomnia and hormone imbalances which she's shared on Instagram. She is doing better now with prioritizing sleep, getting help, and managing stress. She also found an SSRI helpful, and so did one of my future guests (who went on one temporarily and helpful for sleep, then found neuroplasticity/brain retraining avenue helpful -- note it was first helpful for her to initially take a break off work soon after getting covid.) However SSRIs are not the answer for a lot of people like my last guest Caitlin who did not have a hormone imbalance and developed serotonin syndrome. I myself had terrible insomnia and the second day I did DNRS (the program I did), was the first time in 2.5 years I had slept through the night. It also helped that I went to a little trip to the desert and was in a comfortable setting, and didn't use my phone more than twice that day. Sending you healing vibes and cheering you on to save your own life!

[@HealwithLiz]

@@lilalilac4522 One other thing... Go to my website (healwithliz dhot calm) /page/6/ - and you'll see a post about sleep and some others that might be helpful. These were my first posts, and contain some basics that were really helpful to me, in case they might be useful to you.

[@PillePalle-qu8pi]

I always hear people saying acceptance and giving in is the key to recover but then is never really explained what it means practically and emotionally?

[@anitahabibovic2881]

Great interview !! Phil, when you said 'you gave in to the illness' what did that exactly look like to you and how did things specifically get better after that e.g (did just laying down over time help you recover ?).

[@philmm64]

Yeah after 2.5 years I just gave in & lay down! If i was bad, I just quit. Over months, I justified this "quitting" as "investing in my future", which in fact proved true. Some people though I'd given up on life but in fact I got my life back - but I can't pretend it was quick or easy. I also believe that if you can walk say 5 mins any day, even on bad days,. you should . Total rest is only for the deepest crashes./ new onset of say a flu or bad COVID. Move as much as you can if you can. good luck..

[@amiradancer3846]

Amazing interview! Thank you Phil, thank you Liz, this is so inspiring. It gives hope. I don't quite understand the "no GET". Since if you socialize, do chores, or physical exercice, it has to be gradually on the physical, mental, emotional level. So did you follow a program at ME counselling service, or did you had some regular coaching? do you recommend any particular person? I think you'd be a great coach :-). I took some notes and will apply this. I need to listen to this again.

[@HealwithLiz]

Good question. I agree Phil is so wise! Phil seemed to very, very gradually increase activity when his capacity was able to handle it expanded, which is different than run of the mill GET which is focused on doing more at all costs, and often causes major setbacks for people with this condition. I love what Phil says about feeling better being the goal, but that is not what GET clinics measure.

[@philmm64]

Do more *only* when you are coping EASILYL with your minimum baseline! I would say rest more, and do no more on a good day than you can manage on a bad. It's not easy & even if you're perfect. there will still be bad patches & crashes. Take your time & make sure it's your energy that's the no 1 priority.... & good luck!

[@silvermoonuk]

Hi. Great video. I have fibromyalgia with chronic fatigue features myself. I know it is a horrible condition. But I remain hopeful with one day I will recover. Hopefully I don't want to sound nasty but I have noticed that some ppl who say that they have cfs don't really have cfs - like the gentleman pointed out. I think some ppl get wrong dx with cfs but they have burnout instead. I not saying cfs don't exist - it is a real illness....and I know it is a genuine illness. But I think it is not fully understood by some doctors and members of the public. It doesn't matter how much I rest or exercise, I feel horrible 😞 most days. Even on my good days, I still feel chronically tired and in pain. Even just doing gentle exercises and gentle activities, I will feel awful afterwards. I think ppl need to understand there's a difference between burnout and exhaustion and CFS/ME. Take care folks. 🙂

[@HealwithLiz]

Thanks for watching and your kind words. ❤️ Aye, I agree Phil did an excellent job at explaining the cardinal differences in the symptom of chronic fatigue and the syndrome / M.E. It can definitely be frustrating to have this condition minimized, and I hope this helps to turn the tide on that. And I say this not trying to minimize burnout which should be taken seriously, since it seems to make people more susceptible to health conditions like post-viral syndrome / CFS/ME (though Phil, in this case, wasn't burned out). People with CFS/ME certainly do need additional support to function, and I hope this helps get the word out. I really appreciate how Phil speaks on the reality of this so thoughtfully. I hope you found some useful takeaways from our conversation for your recovery journey, knowing it's not easy. Sending you my support and encouragement! ❤️

[@robcole5923]

I'm not sure it's really helpful to say "this person didn't have ME" if you don't know about their illness. Phil admits he was doing a lot when he got sick, and he says his relapse in 1999 was caused by a combination of stress and viral infection. So what is the difference between ME and burnout? For myself, I became ill after a viral infection, but I also had a lot of stressors in my life, and I think they were a large factor in causing my illness. And yes, I did have "proper" ME, with severe autonomic dysfunction and many other severe physical symptoms. It is well known that chronic stress affects the HPA axis and autonomic nervous system, as well as the immune system, so I don't think it has to be one or the other. I feel that dealing with those stressors definitely helped me to recover, but it was still a long and gradual process (removing the stresses didn't automatically make me instantly recover).

[@HealwithLiz]

@@robcole5923 Thanks for your thoughtful comment Rob. Yeah, for me removing stressors (physical, mental, environmental, any stress - even the news, scary TV shows, or excess screen time) was very helpful for me to recover, but didn't make me instantly recover either. It was also a learning curve with trial and error to re-integrate with society (lol) and finding a balance (which of course changes as our capacity/health improves). Sending you good vibes!

[@TheKernal96_]

I hope Phil is doing ok, i heard he had a relapse around Christmas and now is no longer reachable on Twitter. Nobody that recovers deserves to fall back into the trap. I hope he is ok and still going.

[@HealwithLiz]

Phil is one of the greatest people I've met. After he shared his story on my KZbin, activists reported him and pressured authorities to kick him off his board seat in an ME charity (he resigned so they wouldn't have to). Simply for being on my channel because other stories have a mind-body element. Months later he then got a stomach bug and pushed himself running. Then he had another similar situation I believe. Last time I checked he was back rock climbing, doesn't fit the criteria for ME/CFS, but that he's not back to his 2021 levels. Phil has always distanced himself from any mental aspect of healing, and maintains that pacing (and more research) is the only potential road out. He's such a good man, too good, for his own good.

[@philmm64]

Hi Liz! Sorry I do not check the comments on here often enough. I see we're at 10k+ views now! Yeah i've been sick but using my own pacing & resting & "giving up" / "giving in" I have again gone back toward remission, including rock climbing; tho sadly I have had to bin the long distance running. I had a good innings. I now realise i was "only" in remission, so one bad "trigger" caused it again. Vastly less bad than the original tho...... I did make a "Avoid PEM at almost any cost" video, I will post. I hope you are doing OK. @@HealwithLiz

[@philmm64]

@theKernal96_ Hi - I'm around & surviving crashes, my second serious one was Xmas last year, but I rested & paced my way out of it, as per my Video with Liz. 2022 was even worse. I'm very lucky I can do this/ have the chance to improve....!!! I do have a "blog", but I am no longer with the charity and I removed myself from Twitter after another PwME doxxed me about something else. 48 hours of screaming hate & I was out of there! My "avoid PEM" 13-min clip is here, I stand by this: kzbin.info/www/bejne/rIGoZ4mZqsZrp5Isi=KL2jedlz6j7ENOOg

[@morsy51]

I read somewhere that theve got. tablets that cure it but there only available in Argentina??

[@philmm64]

Not to my knowledge!

[@zhengstahh]

Hello! Thanks for the video, very insightful. Do you have any advice for insomnia and unrestful sleep? I'm mild/moderate CFS, and bad sleep is the most infuriating symptom that seems to trigger the others. Thank you!

[@HealwithLiz]

Hi Candice, thanks for your kind words! I know how it's like to have upside down sleep, my friend. In around minute 17-19 Phil talks about how reducing overstimulation (which used to caused him to feel wired & disrupted his sleep) was key for him. He really took some big measures. Lauren and Katie, two previous guests go into detail on improving their sleep quality on my KZbin channel. You can find the written transcript of their interviews on my blog heal with liz dot com (my transcript with Phil will be up soon on the blog!). I also share things I personally did to improve my sleep on my blog (10 things that helped me heal article & a separate article I wrote specifically on sleep.) My one quick tip is reducing or eliminating screen time after dinner, but there are a lot more things that can help. ❤️

[@philmm64]

Yeah that's a really difficult one. My experience was waking for hours 3-6am, then sleeping late & feeling awful when waking late. Sometimes it may be best to just "give in" to it - rather than trying to stand up to it with medications etc. It's part of the illness journey, & maybe over time it will self correct. I did often make a lemon & ginger tea at 5-6am, & slowly sip it in the dark , as something to do while waiting for sleep to take me again. It was super tedious tho! Unrefreshing sleep is a core symptom of ME/cfs, & I agree it can seem to triger others (& a "bad day"). Good luck ....

[@richgc3608]

Great inspiring interview. Just wondering what the Drug was that has helped some sufferers? I have been offered no medication other than anti-depressants (that dont work) by my GP or the Neurologist who diagnosed me after years of mis diagnoses.

[@iancookson8034]

Think it's probably rituximab - it's an anti-inflammatory drug used in cancer treatments that some me/cfs patients have found helpful.

[@philmm64]

@@iancookson8034 Nope - think it was pregnisolone, or similar..... defo not rituximab

[@Katherine-ds2ft]

So, essentially, he rested a lot, paced, stopped fighting the illness, and in essence "retrained" his body back into normal life. I wonder if it was a type of activity management (by another name) that slowly strengthened his body and regulated his nervous system.

[@philmm64]

Hi Katherine - no, I wouldn't say I "retrained" anything. I rested enough to allow my body to heal (lucky to have had the chance!), and it took years, but i eventually got back to normal life including sport. I did feel stronger than ever about 10 years into remission (c.2018-19), but that may have been just my perception. I crashed autumn 2021 (virus) & again Xmas 2022 (ill-timed attempt to run), but using a lot of rest I have somehow clawed my way back to health - tho not running now, only hiking & rock climbing, which is now my main passion. (rock, not high mountains, ha ha - they ALWAYS made me sick). So yeah I'm in remission, not recovery- which is a very big claim now IMO......

[@prathamrballal1229]

Did u had dizzy while standing, Orthostatic intolarence?

[@philmm64]

Yes I did, back in my day it wasn't recognised or talked about, but i'd get off the sofa & my heartrate would go mental, and i'd almost black out (at worst) / go dizzy (a lot). I'm OK now, thankfully.

[@nategarcia3476]

Honestly, stop doing that when I noticed it. I wasn't getting better I started, just walking meditating doing yoga and today. I was very mindful, I felt a little tired and I stayed at a good place, and right now it's 8:00 Pacific. West Coast time and my symptoms. have died down and I feel better because I am taking it real easy. like I should have took it in the first place but I had no help by the way , I'm covid-19. I caught it in February and this is when it started this is was a little bit worse but I wasn't listening to my body and I'm finally going to listen. there's no way. I'm going to be I'm going to be doing the least I can do and this is why, I've decided to turn off my TVs not stimulate my brain but I really would love to have a girlfriend somebody that can support me through this but I don't have anybody I put on some weight makes me feel very self-conscious sometimes I only sleep like 4 to 5 hours a day I need to get better rest that's all I have to say it's not a matter of luck that we all will recover we have to be very mindful trust me I went through this in my twenties give in and just say hey look give the body what it needs listen to prayers whatever you need to do in order to relax your mind.

[@annahewson2310]

Super.

[@morsy51]

Thanks for giving me some hope ,! 😂 😊

[@philmm64]

I wish I could give more. I wish I actually had solid scientific answers. But .... I don't. We al have to find our way thru this, be it ME/cfs, Long Covid, whatever. we can't trust that research will bring answers any time soon....

[@gaoshikui88]

Best story I've heard. And I've heard 8 of them! Very pragmatic

[@philmm64]

Thank you very much! I really wanted to share my experience, and what I'd been taught to help myself.

[@rafnaegels8913]

I am also guilty of measuring my progress by my activity level instead of how good i feel.

[@HealwithLiz]

Thanks for your comment Raf. Phil’s insights on that really hit close to home for me, too.

[@philmm64]

Yes I was too - despite what I say in the interview! Eventually I learned / saw the other way. By necessity.......

[@annahewson2310]

Really affiliate with Phil they just think we are stressed or overdoing it. gar. I walked 40 miles and ran marathon too (only one so not burnt out physically!) before my event that caused cfs me all the time. This is not tired, it is like your brain chemicals are wrung out- and your whole body parched and floppy. I would happily run a mathaon every day over this feeling. Am fighting too. Im sorry ill never stop. that's the bit I can't get. I give into the feelings for management of it, like I cancel overdoing it, and I put me cfs first etc- and act accordingly, but I cant give in on researching treatment slowly and hope. ever. I was fine, and then I was not, and I will always want to be fine again.

[@annahewson2310]

Im moderate too, and 8 years in me cfs too, in my 30s. I had been very much looking forward to my 30s...and it has delayed a family til late 30s at least

[@annahewson2310]

Lemon balm works best on my nervous system to some extent. More than anything else I've tried. palpable on the wiredness (that my food poisoning event that gave me cfs me caused - it hit my bloods and thyroid physical hence not psychosomatic but these supposedly levelled out in blood). However lemon balm makes me groggy in a different way but it slows me down mentally and physically. I love - one thing mental or physical a day I'm the same. I practise it when I can. But cant finance that.Or get others around me to buy into it.

[@samanthamountford415]

Watching this whilst crashing x

[@gaoshikui88]

It's so funny Phil says if you rest on a good day you increase chances for another good day, but not guaranteed. So true. Does anyone else feel like one bad dream can over stimulate your mind and body to the point that it's like being cognitively hit by a truck, and you wake up feeling awful??

[@HealwithLiz]

For me, nightmares come when I have unresolved psychological stress. What can help is writing out your thoughts and feelings if something big is coming up, especially helpful in the evening. This can clear your subconscious. Once you get those thoughts out of your mind and onto the page, calming stuff can really help. Doing a meditation before bed or listening to calming music. Or journaling happy stuff like what you're grateful for, calming mantras. For me, on my upward trajectory I wrote what I was grateful for, my affirmations, and listened to a guided meditation right before bed. In the evening (but not right before bed) I did a visualization too. I also avoided all news and social media after dinner. This helped my dreams and quality of my sleep.

[@gaoshikui88]

@@HealwithLiz great suggestions Liz. I agree it's super important to wind down the brain to maximise chances for a good sleep

[@RK-yg5zr]

This is not obtainable for thousands of people, for a plethora of reasons.

[@HealwithLiz]

Thanks for your thoughtful comment. That is why Phil is calling for significantly more biomedical research funding and more support for people with ME. I appreciate his particular concern for mums with ME who lack the support they need.

[@annahewson2310]

@@HealwithLiz Thank you both for highlighting and responding on that. I fully support a cure, also to mean you don't live in fear of slipping back to easy into it. As well as Phil's tips for management :)

[@demolaj1]

has sex drive increased for both of you ? .. just curious ...

[@painbrain1380]

Fyi: Your facial gestures and random eye closing is quite distracting and unpleasant to watch. Plz be more mindful

[@HealwithLiz]

My facial expressions are a part of what makes me, me and something I love about myself. I am also a human who blinks. Sending you a big hug.

[@philmm64]

@@HealwithLiz As I spent well over an hour on calls with Liz making this, I have to say that I never even noticed any facial gestures or eye closing out of the ordinary from her. FWIW, I dislike the sound of my own voice. But it's who I am, so there you go.

[@andylopez6411]

Wonderful interview! I totally agree with you about how much stress to our bodies being connected to our phones all the time is. Like any other “addiction”, it makes us dependent and that makes our body anxious. Apart from this, the unrefreshing sleep is a big one for me. I was wondering, just out of curiosity, if once you’re better/healed, that symptom of waking up like you haven’t slept at all diminishes away or do you still struggle with not getting refreshing sleep? Thanks for everything again! 🤍

[@philmm64]

Hi Andy! My sleep is really refreshing now, am glad to say. But sleep is still really important, IMO. Disturbed sleep patterns are a real hindrance to improvement, I think. I’ve been v lucky, & well for c.12 years now...... good luck 🙏