Pacing vs Graded Exercise Therapy | The Academic Battle - in Reality

[@matta9358]

It's important to note, the psychological damage Graded Exercise Therapy has done over the years. Given a perceived certainty that incremental activity is going to improve your symptoms which instead leads to increased disability can gaslight a patient into thinking a lack of recovery is their fault. The NHS really needs to reach out to these patients and explain this error otherwise they may never re-engage and in some cases, they may be suffering from a secondary psychiatric diagnosis, such as depression or substance abuse. There's a big problem in society that a lot of disability adaptations are simply not setup to respect the nature of chronic health conditions. A prime example, you can eventually get a Freedom Pass (free public transport) if your ME or Long Covid is bad enough. If a Doctor could prescribe a Freedom pass for these conditions it might improve prognosis from the outset. There's so many more examples as well.

[@hannekezijlmans6578]

@@Beekind799 MMS is bleach. Stop telling people to drink poison you quack.

[@paul2019monte]

This has been an issue for me since childhood. The lack of understanding of this point has led me to repeatedly over exert as I thought I could somehow fix what was wrong with me by steadily increasing activity. Of course since I was not diagnosed properly this led to not only continually harming my physical health but because I was a type A personality and had a lot of success professionally and socially I was constantly put in a position of failing in all areas. This was so damaging to my self-esteem and self-worth I can't tell you the pain I have suffered. And of course because I was successful but then could not maintain it the cruelty I have suffered from those who didn't understand and often were jealous of my successes was incredible. I would severely relapse and then do it all over again and again. Finally got the proper diagnosis of me/cfs in my 60s. A book I found very helpful is "How to be Sick" by Toni Bernhard who also suffers. An extremely intelligent high-achieving woman who made so many of the same mistakes initially as I have done. It's such a hard concept 2 wrap one's head around.

[@thewoodster8607]

The Biopsycho-social model (or a version of it that has been very successful for me) also incorporates methods to increase activity slowly. The key is that this activity is incorporated with techniques to give messages of safety to the brain at the same time and not activate the amygdala, which is the fight/flight mechanism. This dumps cortisol into the blood stream and results in after-activity pain. Some people can 'push through' but most greatly benefit from this method. It's called Graded Motor Imagery and there is an accompanying technique called Somatic Tracking in which people learn to view symptoms through the lens of safety, not danger. These techniques are being increasingly applied to CFS and similar syndromes, including Long Covid.

[@joannarichards6245]

@@paul2019monte I can empathise with everything you said and have been on the same rollercoaster since 2020. I had a chronic illness already and long COVID about finished me off. I’m also a type A personality and I believe that has made it harder because I’m extremely intolerant of my own failures. I kept trying incremental exercise and did myself untold damage so many times. I also understand the damage that bad advice can do, sometimes I felt completely unseen at times because although your practitioner may be keen on a certain protocol sometimes they don’t seem to see the patient. Debilitating illness is so difficult to live with and at one point I remember giving up and an acquaintance told me never to give up on myself and that was enough to start again and after four years I can say there is an improvement. I can only say to you what that person said to me, never give up, don’t shame yourself, keep fighting and I understand exactly what you mean. Try and be gentle with yourself and I wish you all the luck. Thanks for your book recommendation, I’m going to order it. X

[@nancyblake1679]

If the viral-fragment in monocytes theory is correct, then resting until the virus is completely cleared makes sense, and then we would guess that that would be the turning point at which exercise would become safe. This fits with complete recoveries from ME/CFS reported following the six-month of complete rest prescribed by Dr Malcolm Ramsay, who treated patients from the 1955 Royal Free Hospital outbreak. Even today, the odd patient who has been told by their GP to go home and rest for six months reports a complete recovery from ME/CFS .

[@mikecarey1990]

Good grief! Do not believe that nonsense. If you call me, I will test and treat you for free for a liminted time. Otherwise, continue to be naive and to suffer. I am an alternative health practitioner and energy healer with 43 yrs. exp. and clients in 33 countries. I am able to tap into cellular memory to find the cause of health issues and the natural remedy. My testing covers over 200 items in the body and is very accurate. The initial testing is done over the phone via my toll-free number for the US and Canada, and via Zoom for the rest of the world. Louis12:02pm

[@ingathomas6653]

Does not work. I know a lot of people lying for more than 1 year. They become worse and worse.

[@teddybearroosevelt1847]

@@ingathomas6653Yeah, complete spontaneous remissions are very rare. There are however many stories of people who recover by taking antivirals long term, among others.

[@merrymicrobes3969]

I have had ME for 11 years and at the start of the pandemic I was concerned about the lack of knowledge about safe post-viral illness management among healthcare professionals. Before the pandemic PEM was a term pretty much only used by ME patients and some ME clinicians & ME researchers. I am marvelling now at the number of healthcare professionals who now know what this term means, and also who understand the challenges ME patients have been up against all these years. Thank you so much for all of your work - it will help not just long COVID patients but will hopefully also make the world a less hostile place for ME patients too.

[@hannekezijlmans6578]

@@Beekind799 MMS is bleach. Stop telling people to drink poison.

[@paul2019monte]

I have also noticed this finally coming to light. I only wish that it had become more understood a long time ago. The suffering and judgment in my own life due to lack of validation and understanding has been so awful. Its never been my wish that others suffered what I had but unfortunately millions now will. I feel so sad for all those now finding out what this is really like. My heart goes out to them. 😪

[@suesheffield4533]

Thank you, thank you, thank you. I am 9 months in, and pacing is the only thing that has helped, but its difficult. I still work full time at home and it's easy to do too much. My gp has advised graded exercise and it's hard to argue with the gp and try and explain that's not good for me. These 2 videos have given me confidence to refuse this and not feel like I am being difficult or not helping myself.

[@barbarawarren9443]

Sue, I can totally relate. A lifelong athlete who enjoyed individualized sports and always "trained to failure," pushing past my limits to excel, I experienced this too. It is so difficult to hold back my frustration when clueless PhDs in multiple fields start preaching theoretical old textbook principles regarding exercise. Some of us who have been long haulers have moved far past grad-level theory, application amd modification - just to survive. People don't understand that we expect to thrive on a higher level and resume our super-human capabilities.

[@barbarawarren9443]

I will add that I discovered this about 3 months post-covid when I thought a little HIIT might help me get back some endurance. What a shock! I gradually increased to jjust 3 miles - and spent the two weeks recovering.

[@Beekind799]

your weak immune system cant expel dead viral debris from your system,thats what a post viral condition is,they are all kept in place by low atp levels,i bet no one has told you that,you can end long covid safely in about 12 hours then you take an immune boosting protocol so the next time a virus comes your immune system wont spit out cytokine storms,

[@rikoryuki]

@@Beekind799 MMS is bleach, do not use it, it's a fake cure that makes people extremely ill.

[@jammin1881]

15 years of judo and jiu jitsu here also. I felt I would just push through and never submit to that stinking $h!t. I was so wrong . It punishes you for over exercising or exertion. I can’t even think of stepping onto the mats again in this condition and still a mess after 15 months. Each day I try and do the 150 regiment (I call it) 100 sit ups and 50 push ups. It’s a small goal but slowly slowly. :(

[@hannekezijlmans6578]

Let's hope these insights will also help those with ME/CVS. What I am seeing (in the Netherlands) is that there is some awareness about thr damages of GET when it comes to long covid patiënts, meanwhile the same medical professionals accepting pacing for long covid patiënts are still advising GET and CBT for ME patiënts. They have been tought those suffering from ME are just deconditioned and afraid of getting better (basically keeping themselves sick because it is convenient to them)... while long covid is supposed to be a whole new condition that needs to be treated like a 'real' illness. My estimate is it will take a few more decades (and a few more pandemics) until the world will finally realise, they are basically the same thing. Thank you for this video, this will no doubt spread more awareness.

[@robinhood4640]

I do hope you are wrong with your estimation, although i am afraid that you may well be right. I think that this pandemic, because of the long covid aspect, will be enough for us to increase our understanding of the immune system's role in many health issues, that have been considered psychological and not physiological. In my humble opinion, the cause of oxidative stress, is poorly understood. The role of psychological stress, is being completely blown out of proportion, and the role of chemical stress, is being massively underestimated. Psychological stress is a symptom of chemical stress. Chemical stress causes oxidative stress and it causes psychological stress. The psychological stress plays more of a role in exasperating the oxidative stress than being the causes of it.

[@joannarichards6245]

I’ve been swimming for three years to try and recover and I have gone from a few yards up to two km. I can just see, after 3 years, my first little shoulder muscles. It took really a lot of time and I set myself back several times but finally I see a tiny bit of improvement. Good luck everyone! X

[@RUNDMC1]

Great to hear this Joanna!

[@joannarichards6245]

@@RUNDMC1 Thanks so much for all your help and support. You were my one source of support and I am so incredibly grateful. X❤️

[@ysbyttybedbug]

This is just fantastic. Thank you so, so much Gez, for getting these people together and making it happen. In all my years with ME, these two videos have been the most helpful resource I think I have ever come across.

[@RUNDMC1]

That’s amazing - thank you Kay!

[@hannekezijlmans6578]

@@RUNDMC1 @michael buddah is advising people to drink MMS (which basically is bleach). Could you please react to his comments? He is basically telling people to poison themselves with the "miracle cure" (formerly advertised as a miracle cure for autism, which has landed children in hospital).

[@jammin1881]

@@RUNDMC1 Found you! I had to find a recent video to ask how you are doing now? I messaged you here about two months ago and had my first shot of vaccine. It absolutely ruined me again. 3 weeks of muscle cramps and feeling like the third month of actually having the virus. How are you holding up? I’m still facing symptoms. Leg cramps, heart palpitations and general weakness / faintness. What’s new your end? Any improvements? I was hit on 25 March 2020

[@RUNDMC1]

DarkbyDesign I’m doing better now but still having to pace and be careful. Thanks for checking in!

[@jammin1881]

@@RUNDMC1 Thanks for the reply (sincerely!) I didn’t really know many people, apart from a handful of forums at the slack ap forums. I talk to so many different people and get frustrated that no one seems to understand. Family is like taking to a brick wall and feel like a real freak trying to explain this to them. I have heard all a manner of bs now from genetics and thyroid problems caused it. I’m around 15 months in and still facing muscle cramps and weird muscle ticks all over. Lately I have been facing dizzy spells and even a nasty feint, distant feeling. I had to see a neurologist and went for an MRI recently. I’m basically at home resting and avoiding the heat! Anyway…… happy you are doing better and good luck making more videos or with work.

[@dianecarubia1099]

WOW how informative these vlogs are. I wish i could have had this info 17 years ago. I pushed and pushed for years. I did not rest and i have eventually had to retire. I am now much better after stopping work and i do small amounts of exercise. I still crash mainly with trying to socialise. I don't think i will ever fully recover, my joints are now awful. It has become deep seated for me now. I am angry that i was left to rot all those years ago and i have never found anyone who knows anything about it and have stopped trying. These videos are just fab! Thankyou

[@RUNDMC1]

So sorry to hear about your experience Diane

[@liabogod8714]

Gez, as you know I'll be forever grateful for your videos and the experts you bring together. When all the info on LC out there becomes too much for my LC impaired brain to follow I know that I just can follow your videos and that will be enough. One comment if I may; After 16 months my main symptom is BRAIN post-exerional malaise (i.e I can be physically active almost as much as I like but haven't tried the gym yet). Of course the tips on this kind of cognitive pacing do not involve heartrate etc but principles similar, still it would be good to hear more about this type of LC fatigue.

[@RUNDMC1]

Both you and I suffer it Lia - but I’ve not met that many others who do, and there’s no specific expertise on it… yet. But as soon as I have some science to share on it I will!

[@melaniec8561]

I also get malaise after doing too much thinking/concentrating. I feel like a cabbage for a few days after, but it can also trigger physical issues too.

[@chrys.k.mwarriorsofpiathos1501]

My symptoms always start off in my mouth. My tongue goes all numb and then from there I experience all kinds of pains, aches, horrible anxiety follows but I always go back to my tongue to remind myself that I'm not dying. You are doing amazing work your channel has been such a comfort. Thank you. 😄

[@_cindysj13]

Just. B

[@CK_1144]

Thank for this awesome info! With mold biotin sickness and possibly Lyme (getting that checked this month) as newly diagnosed co-morbidities with my viral infection last year I’ve been really struggling on my own for a while with why I can’t function “normally” like everyone else. This is the kind of video that would have helped me and I’m sharing it as far and wide as I can for others to find. Pacing has become my newfound super power in the past few months. I love how functional I’ve become. It’s low-functional, for sure, but it feels like a freaking miracle. Looking forward to your next video on how to work. I’ve been underemployed since I got sick last year and completely stymied about what sort of work to do, how to find it, and how to talk about my episodic limitations in an interview when health is supposed to be nobody’s business. Thank you for all your work to make these conversations public! Wishing you all a smooth recovery.

[@Beekind799]

if you drink the miracle mineral solution in less than 12 hours it will be obvious whats been keeping you stuck in sickness,dead virus particles in your system ,it will clear that out fast and your energy levels will rise,post viral conditions and chronic fatigue conditions are all the same thing,people say no they are not,drink mms and see for yourself,it cost 7.49 uk pounds ,big pharma will do all they can to stop you using the miracle mineral solution,they say its bleach its dangerouss,mms isnot bleach and it will highly likely heal you in less than 12 hours,the word is spreading all over the world,move fast i think they will ban it,i can tell you how to get it its on ebay type in mineral solution set scroll down its 2 slim plastic bottles with a yellow and green cap 2 x 33ml cost 7.49 uk pounds ,thats chlorine dioxide ,the miracle mineral solution,its for making drinking water safe,bleach would kill you,i dont like seeing people sick,2 days ago i told a lady she had awful issues gut issues,eye issues,head achss ,low energy ,sore everything she drank the miracle mineral solution,in 12 hours it was all gone her energy level rose ,put 8 drops of sodium solution in the bottom of a big glass add 8 drops of citric activator let it mix for 20 seconds it will go dark then fill the glass up with water and drink it slowly on a totally empty stomache in less than 12 hours you will highly likely say its a miracle i keep hearing it

[@paul2019monte]

Mold in my homes and workplaces has been a nightmare for me. Almost impossible to avoid even when I became aware of it. My childhood home had moldy/wet basement. I believe was born with me/cfs. I now believe both my Mom and my grandmother suffered. The mold aspect is worse for those estimated 26% of people that can't clear mold due to a genetic component. I hope people with long haul covid are made aware of this making things so much worse. Estimated over 75% of buildings suffer water damage.

[@paillette42]

I have never had formal treatment for my long Covid (it's been since March 2020). I have done my own self-treatment via close observation of what works for me and what doesn't. I have found that I do need some exercise, even pretty intense exercise like several hours of dancing, in order to sleep properly, so as to keep my symptoms from flaring up. But as I was (and am still, to a certain degree) a pretty active person, it's a very fine line between exercising enough to get proper sleep and overdoing it to the point I crash. I try to listen to my body--chest pain or headache of any kind are my big red flags that a crash is coming, so as soon as I feel even a little bit of pain there, I try to stop whatever it is I'm doing and rest. This is not always possible at work, or if I'm out and about, but I'm getting better at gauging it.

[@HilaryRouchy]

Please can you tell me how can l get to a stable base line to move on when lm housebound and live alone. I would love to walk for 5 minutes

[@katiehettinger7857]

After 19 months I thought I might be on the mend. I increased my activity last week. Well, I crashed this morning, couldn't get out of bed, and when I final did it was like pushing through molasses. This program comes at a good time for me.

[@RUNDMC1]

Good luck Katie!

[@auggie1790]

@@RUNDMC1 Are you going to see Dr Patterson for treatment. I think many are very interested to see you recover. Please let us know! Thank you! Many are looking for effective treatment.

[@lucabrasi8790]

Same here. Crashed after almost 8 month symptom free. I’m now 16 month in. So frustrated. I crashed 10 days ago exactly that day my daughter was born. Couldn’t really enjoy that day it’s so sad

[@SA77888]

What a great resource these podcasts/colaberations medically educated ppl with personal experience of this virus.......invaluable!!! The fact the internet has made it easier to put these minds together and share their findings with the rest of us is fanstastic. Gives me confidence that Im not going mad or imagining it, whilst helping answer a lot of the questions we all have. - Whoever reads this........hope today is a good day for you and that the covid-gods give you a break.

[@RUNDMC1]

Thank you R! Much appreciated :)

[@joannarichards6245]

@@SA77888 I’m going to put give me a break COVID gods on a poster, possibly a T-shirt for bed. 😂 This place is the only resource which gave me real advice and stopped me giving up, which I had really. Hope you are having a good day! X

[@IamLinda_]

I need help! I just saw my primary care doctor and he referred me to a cardiologist because of my tachycardia. I'm worried that the cardiologist will want to do a stress test which, of course, will cause PEM. Right now my baseline is going from my bed to my livingroom chair. Any deviation from that and I'm in bed for the next 24- 36 hours unless I get one of my episodes of insomnia. Then it's just me lying in bed but not sleeping because I don't even have the energy to sit up. I just am having a hard time navigating this existence.

[@markanslow4720]

Linda - I saw a cardiologist yesterday for my tachycardia. He didn't stress test me, didn't do a stand test or lean test or anything - just an ECG to test I didn't have arrythmia. Then listened to all my symptoms, gave me some useful tips for POTS and prescribed two drugs on a low dose to take the edge off the tachycardia. If you've managed to get a cardiologist appointment on the NHS then go for it, I say! I had to go private in the end. Still weeping into my wallet...

[@hannekezijlmans6578]

I'm sorry Michael is advising MMS for you. There is no miracle cure and MMS is basically bleach (it has been advertised as a miracle cure for autism and children have ended up in hospital because of it.)

[@ms-jl6dl]

Did you have covid? If so, go to FLCCC website. Try their long covid treatment.

[@EmilyWalters]

Mine realised it would be a bad idea. Explain your situation & that it will leave you in bed for days.

[@bellelacroix5938]

I've had long covid for over two years and this program is exactly what I have felt intuitively is best for me and would have been better suited for me prior to contracting the virus when I was suffering long-term from a vestibular condition when all I was offered was a program that increased incrementally, exacerbating symptoms with the idea that this would create neuro pathways but really all it did was increase disability and crashes so thank you for this from the bottom of my heart. Rest is medicine as is understanding and t l c for oneself and others on this journey back to health or at least stabilization.

[@lizblock9593]

I've had ME for a few years now. I had an appointment with my GP to document all my symptoms in my medical record for a Social Security Disability application (rejected), which included occasional lightheadedness and pounding heart (POTS?). She wanted me to set up an appointment for a cardio treadmill stress test. The test would be on top of a two hour round trip drive for me. This was very upsetting, I felt so unseen and unsafe. I think she is a good doctor, at least she diagnosed me with ME, which is more than a lot of people get. A lot of doctors and people in general have no understanding of the energy component of these conditions. What you all are doing is so important! At least we can point our doctors to information like this presented by professionals. Thanks!

[@tortysoft]

It's a delight to hear this said ! Exercise is also bad for many physiotherapy patients ! Trust the person who has the problem ...

[@Unitedstatesian]

Thanks again! Pacing is so hard, especially for people who were active before. It depends so much on each person. I am envious of some people who had very sedentary lifestyles before long-covid seem to have it easier in that they are happy being able to get back to a lower level of physical exertion because they have lower expectations and maybe do pacing better since they don't push themselves into PEM. It seems that the more active you were before, the more frustrated you are with the slow pace of recovery, which leads to more PEM. It is a kind of snowball. The dysautonomia and deconditioning seem to go together which leads to the problems of finding a balanced pace. For example, I sleep better if I am both physically and mentally tired. Better sleep leads to better recovery. My exercise level is up to about 3kms a day. However, on some good days I do 5 or 6kms (almost without noticing) and the increased effort sometimes leads to better rest and feeling better in general... or it can lead to a crash if go past my limit. Knowing the limit is so hard on the good days. I will admit that I am bad at pacing. Don't feel bad if you are also bad at pacing... you are not alone! A good suggestion I saw once was not to increase the step unless you are able to maintain an exertion level for 3 weeks without problems. And to do only small increases 3%. So guess that it could be the 3x3 rule? Good luck!

[@briburlett6617]

Thank you for sharing this. I was recently told by my neurologist to double my exercise. This landed me in bed for 3 days after I walked 1 mile. I agree it is individualized because we all have different symptoms and exercise tolerances. Thanks again for sharing.

[@RUNDMC1]

So sorry to hear about your recent experience Bri

[@Beekind799]

everyone that drinks the miracle mineral solution is cured in hours,if you live in the uk the cost is 7.59 you cant expel dead viral debris from your system,low atp levels coming from low glutathione levels that has to be addressed but first you clear all the dead viral debris with a simple drink of mms ,one little drink to end all the ppain misery and suffering ,it is very dangerous to exercise with dead viral debris in your system witha weak immune system that can only use cytokine storms ,your doctor is an arse hole and so is the neurolagis the very last thing them creeps want is you healed,ask the doctor is mms safe,he will say no its bleach,if you yused bleach to make drinking water safe it would kill you,thats wha mms is used for to make drinking water safe to drink,no bleach

[@hebejeebee]

@@Beekind799 why do persist in posting this mostly illegible nonsense. Your claims of expertise in this area really are doubtful if you can't actually write a coherent sentence.

[@sandrabell2940]

Early on in my covid journey, I pushed myself too hard, building daily walks up to an hour a day. I was 3 months post covid then. I'm now 11 months out, and my standing tolerance has gone down to 15 minutes max. Really wish the pacing message had been explained to me properly from day one, the lack of proper guidance has just lengthened my Illness and recovery

[@itsjudystube7439]

@@sandrabell2940 me too

[@leaperrins8373]

I feel lucky? I have suffered with depression most of my life, although I am much better now and seem to be keeping stable which is great! Depression taught me about pacing. I had never heard of it until I was researching recovering from covid. However, all the factors you talk about here, which is basically meeting yourself wherever you are and trying to deal with the guilt, are things I do most days anyway. It's been very useful to learn that exercise isn't recommended. I really wanted to start but I understand now that this is probably going to be detrimental. I am doing some simple yoga stretches because I have a lot of nerve inflammation in my back. It's been so bad that I haven't been able to touch my back or wear anything heavy like my dressing gown with a hood. And forget a bra! The stretches have been incredibly useful along with extra nutrition, and I am now tapering off my meds. I just wanted to say thanks for the information. It's been really helpful and will hopefully help me heal and not develop long covid despite having symptoms still 5 weeks after infection.

[@heatherm7628]

Thanks, Gez. Really helpful. Lots to think about, and so much that makes sense of what is happening with me. I am now exploring more of your videos, and very grateful for all your hard work! Of course, I have to take YT in small doses, 10 minutes at a time max!

[@cindybogart6062]

Thank you for this & sharing all the information that you have found out there. You have helped a lot of us who have this issue. Like your hair cut. Im doing better then I have lately… biggest problem is I’m still extremely exhausted.✨

[@hannekezijlmans6578]

@@Beekind799 MMS is bleach. Stop telling people to drink poison.

[@joshuambean]

Thank you so much for having this conversation. I'm not sure if I have Long COVID or not, but I know I have POTS and probably MCAS. So this is a very important conversation!

[@andrewjones3826]

I have LC, but none of the lung issues and some fatigue. Got to a point where I could walk 5km at a decent trot. Never had high heart rate, always normal. Ran 3km, did me in for nearly a week and now I have tinatus which I had in small doses before. Full Ban on high cardio for me for 6 months. Stupid error and the tinatus isn't going 😬

[@RUNDMC1]

Yes be very very careful about going back to exercise!

[@mariedavis7474]

Thanks so much Gez and to the panel for this really helpful video, I had covid back in March last year, GP advised walking further every day which exacerbated my symptoms. I decided to stop and mainly rest which has helped with my recovery. I am slowly improving but like many people struggle with pacing as used to be very active. I also thought your previous video on how changing your psychological response can make a difference extremely helpful. I hope you know what a difference you have made to people with LC, thank you so much

[@RUNDMC1]

It’s a pleasure Marie!

[@JacquiQ]

Love all that info TY SO incredibly helpful after suffering for 20 + years of this --finally people who know what they r talking abt.

[@deel2435]

I can speak from experience as to why the sit to stand test and walk test is used, instead of asking patients as I was in a cohort a few years ago and asked some questions. When asking why these tests were undertaken instead of asking for patient input I was told, as were the other participants: 1) Patient perceptions can't be trusted. Patients often over exaggerate (wether deliberate or mistakenly) their inabilities/disabilities and symptoms. That patients can often do much more than they realise. A lot was sighted as evidence such as but not limited to people not being able to accurately determine how much food they'd consumed throughout a day, how many steps they'd walked. 2) Everyone can do more, most of the time, especially if we're not watching the 'clock': Trainers, physiotherapists were used as evidence to support this. In other words if you have a trainer, you can often do more even though your body is telling to to stop. Physiotherapists working in rehab state and have evidence/research to support this, that people can often do just a few more of anything but we have to overcome that inner 'no more'. One example that was used was research showing that rehab patients did more in a shorter amount of time when clocks were removed and people were given false signals of time running out. * 3) They wanted to show you that you'd improved from start to finish: One the first day 'everyone has a lower ability than they do on the last day'. They say this to the patients before giving these tests.** There were other reasons but these are the ones that stood out to me. * Note that 2 doesn't use data or research that relates to people with LC or ME/CFS. Though LC hadn't yet reared it's ugly head. ** A great phycological 'trick' and is used by Drs to minimise side effects of medications, or to prime people for expected outcomes. I believe it falls into placebo in the sense that you're telling the patient 'this will happen' and therefore it does. I stayed in touch with many from that cohort, many returned to worsening states of health. And, felt like they had to rely they were doing better than they were because: If you were unsuccessful, hadn't improved you were asked to leave the cohort or told you didn't want to get better. Which falls in line with the secondary gain theory. pubmed.ncbi.nlm.nih.gov/10172109/ Those who asked for help with their disabilities, asked for advice on how to claim disability income, one person was asking for help as they were being made homeless - were all said to be using their condition for secondary gain or that they didn't want to get better.

[@larrymoser6455]

I feel compelled to comment. I was a victim of long Covid every bit as sick as most of the people described in this vid…..at a certain point, I was forced to do some really hard work for a period of about an hour because of my business and it was no fun…. it was extremely exhausting but after several subsequent episodes of exposure to forced hard work I actually noticed that I was starting to recover and there seemed to be a direct correlation. Right now I’m feeling great…. I am probably 95 to 97% recovered but I truly feel that if I had just moped around feeling sorry for myself and thinking that I needed to rest more , I would still be sick in the bed…. I hope this helps

[@olgasantiago-agirlfriendsguide]

✨🎉This is great news for you! Congratulations! Sometimes we do need that blush just to see how our body reacts. I had that thought, coming from a fitness background for about 30+years, but I crashed and all my pain was back with a vengeance. This time I started very slowly with walking around the house, then my backyard, then inside stores. I then attended PT 3x per week for a month, and now I’m up to Pilates 3x per week. The response has been great but I still have lots of very bad days with pain throughout and so so days (I do push to exercise on these and the good days). On very bad days, I am in bed. I truly believe that challenging yourself but listening to your body very closely is going to be the key to our recovery. For me, I cannot raise my heart rate so I have to be careful and that’s why Pilates has been great for me because it’s strengthening my body without raising my heart rate or I’ll end up back in the e.r. Because I’ve never done Pilates before, it’s also challenging my brain, which I need to help with the complications I deal with from covid. Best wishes, Larry! I’m glad to hear stories like yours! Good job!!!🎉

[@nathannathan5735]

Thats awesome to hear Larry, gives people like me some much needed inspiration

[@patriciabryant8892]

@@olgasantiago-agirlfriendsguide Do you have POTs symptoms and is your heart rate improving?

[@judahlion3330]

This is the truth. Fear is also a virus

[@Richexperience1]

Another great vid thank you for all your work. Looking forward to the next vid “getting back to work” topic. I’m fairly good at physical pacing, but the real problem is the mental exertion of being at new job. As a scientist I’m expected to excel mentally and learn new things quickly in a new job situation. Recently I had a 2 week contract job. I felt mentally and physically good going in and mentally crashed after 2 days. It was a nightmare. I made great decisions, but my mental endurance was gone and it was obvious. I stopped interviewing because I felt like I could not sustain 100% mental activity at a new job. I don’t want to explain “Long Covid”. If they knew my issues a potential employer would just simply hire someone else.

[@RUNDMC1]

So sorry to hear this Rich :(

[@tinajohnuncut4145]

Have you seen or heard of any long covid cases where the person could exercise just fine, heart rate fine, but then several hours later they start having a hyper adrenaline response, jittery, shaky, then can't sleep from feeling shaky? I'm a well-conditioned distance runner. I had extremely mild covid starting Dec 22, 2021 (only about 1.5 months ago). Now I don't seem to have many of the symptoms about which long haulers complain, like increased heart rate with activity, or respiratory issues (I had shortness of breath but that went away after maybe a week or two max). I'm just wondering if specifically this shaky / vibrating feeling is PEM. I can walk at a casual pace for maybe an hour and still sleep at night. But I can't do even a walk / run without this shakiness hurting my sleep (I can sleep but not enough). I would really appreciate knowing if you think, since my case seems milder, maybe I would be safe trying to do some exercise -- whatever I can tolerate and still sleep. And is exercise likely to make me get worse over time?

[@RUNDMC1]

I think what you’re describing is dysautonomia - I’d highly recommend trying a vagal stimulation device and stasis breathing (Google it). Be very careful with activity until the symptoms subside.

[@rev.rachel]

Oh my God yes, the six minute walk! I just did this at the long covid clinic near me and had PEM for three days! Which was nuts because I walk longer on campus every day. I don’t know what the difference was, but it was somehow so different from my usual walking.

[@RUNDMC1]

Sorry to hear this Rachel!

[@matfax]

Fair take on GET. I think the main issue of exercise is the aerobic metabolism and the damage that the aerobic metabolism does in the presence of ME/LHS pathophysiology. So it can be a completely different kind of activity once you reach the aerobic-anaerobic threshold. I'd avoid this at all costs for as long as the pathology exists, which could be tested by ATP/ADP ratio, NAD+/NADH ratio, oxidation, and mitochondrial biomarkers. The disease could be monitored much better when more tests were integrated into the guidelines. And more tests could be developed to show how the real state of the oxidation buffer is, by stimulating patient cells ex vivo with oxidation precursors and looking at their oxidation performance. Individual enzyme activities could be determined. These are tolerance tests that could be done in vivo but at the risk of harming the patients.

[@matfax]

@@Beekind799 That's simply not accurate. Most naturopaths know ATP and may test for it. In fact, some might be inclined to reduce ME/LHS as just an ATP deficiency. But it's much more. More than I could explain in a comment and more than I'm willing to discuss with you here. I think you might underestimate what has already been researched in the field of ME. I can only encourage you to read the studies on the etiology and pathophysiology of ME. The ATP levels aren't low for no reason. You can't simply try to adjust one screw in a broken machine and hope that it will fix everything. "Immune boosters" just improve the humoral regulation to viral infections. They can not remove latent and abortive infected cells. They can't fix the genetic predispositions. Pathogens are "smart" in that they adapt to their host species and know how to circumvent the immune response, no matter how much immune boosters one takes.

[@Beekind799]

@@matfax yeah yeah yeah ,i heal post viral conditions every day of the week,you have to know hats causing the low atp levels,later besties

[@matfax]

@@Beekind799 You heal post-viral conditions everyday? As a heath provider or in which role?

[@Beekind799]

@@matfax are you an md doctor would you like to talk about the 5 box immune system and how its fueled

[@matfax]

@@Beekind799 I'm not a medical doctor. Maybe it's just a translation issue, but I've never heard of a "5 box immune system".

[@EmilyWalters]

You guys could put together an amazing pacing series. Happy to donate to any crowdfunder, if this is something you’re interested in doing. I’d love to see something designed for GP’s & clinicians as well. I’ve been waiting 10 months to get into a Long Covid in the UK-I’m wondering if it exists at this point. Thanks Gez!

[@RUNDMC1]

Thanks Emily - the waiting lists for the clinics are horrendous at the moment

[@HilaryRouchy]

Hi guys what was your baseline when you started. I'm trying to find my base but lm still getting worse. I'm housebound now, Trying fo go to two weeks of not crashing, from my tiny envelope , then can you tell how to move forward and get my life back. Thank you

[@hebejeebee]

Excellent sequel to the first episode! I'm going to guess that the same or similar consideration for symptomless dependency prior to increasing effort should also be applicable to cognitive activities. My PEM these days is triggered way more by cognitive exertion than anything else. I'll be trying flotation as a device to manage brain rest and see if that helps. Thank you so much to all who took part in this discussion. Feels like pioneering stuff! 😊

[@RUNDMC1]

Thanks Jon!

[@yoeyrod3850]

They always say I am just depressed. And I am not. I am fatigue and not always. I can feel it coming. I am not sad. They (Dr.s) need to get better informed.

[@samikassou2944]

Thank you so much for these videos Gez. Really helps seeing one of these so regularly now and keeps alot of us going. I'd love to see something on the current research that's going on in the UK. Especially the stuff going on at Birmingham University. Not sure how hard that would be to get hold of though.

[@teresagiardinelli1083]

Thank you so much for this knowledge,for the effort put into this channel and the help it is giving us!

[@RUNDMC1]

Thank you Teresa!

[@peanut952]

I have not even been able to get diagnosed with ME, Long COVID, or anything. Three doctors and none are willing to look at my symptoms as a system issue as opposed to one part of my body issue. Resources to help people like me who got covid before testing was available are having a terrible time getting the health care system to even listen. I have had long covid for more than a year.

[@RUNDMC1]

Very sorry to hear this BC

[@lalala30035]

Recommendations for a simple heart rate monitor that alerts?

[@gecko2716]

So Run DMC would be happy too hear your opinions about how Irradiated Food products impact upon the stamina energy levels of Elite athletes and everyday citizens..and why they should be labeled or not

[@RUNDMC1]

Honestly this isn’t my field of expertise!

[@Beekind799]

it should be banned its toxic ,and gm foods they are toxic too,full of glysophates and no glutathione

[@brobinson8614]

Graded Exercise Therapy GET was utterly disastrous for me, I ended up very unwell, with a serious 6 month long awful crash of Post Exertional Malaise PEM that I struggled to get better from, But pacing was far better, thats wen I started seeing improvements. Pacing should be seen like your are using a very old mobile phone battery, that discharges too fast. And if you are using it too much the phone will turn off and take ages to turn back on. So the best idea is to stop and charge the phone often i.e. rest. Then use the battery for a little bit, then recharge it well before it gets too close to turning off. Imagine every cell in your body is an old phone battery that constantly needs plugged in to charged back up often, an that means to charge yourself you have to rest often. Also remember the difference is your body won't tell you its batteries are going flat. that signal comes 2 days later with a massive crash. So know that you have to manually take control and take multiple rests daily even if you think you don't need them. eventually you will notice a gradual improvement. however its not a cure. just a way of not feeling awful. It could be a way to recover from Post Viral Syndrome faster though. Most Post Viral Syndrome people are constantly improving so will get better anyway. those that aren't improving at all are the ones who may have developed ME/CFS. All of you however will benefit from Pacing By the way CBD is gaslighting. don't let a smug psychologist try convince you that you have a 'bad belief system' when you actually have a physical disease. They know absolutely nothing about ME/CFS OR Long Covid.

[@RUNDMC1]

Thanks for the great comment Bruce!

[@itsjudystube7439]

I had to do the hurrying round two chairs and collapsed. I think it was the six minute walk test. I was pushed to get up to continue. I refused. My BP was sky high. I was supposed to do the sit to stand but couldn’t even stand. I spent a week fatigued afterwards. I have been added to their on line course. It is too detailed for me to deal with without brain fog. I am being pushed to raise my level of activity to graded exercise when I still have wipe out days on domestic activity. I have always had difficulty raising my exercise level without fatigue. Even before long covid. This is ignored.

[@stephenhocking9467]

Thanks again Gez. Always the best place to come for information.

[@RUNDMC1]

Thanks Stephen!

[@drvxd]

Is there a précis? I can't maintain attention for long enough.

[@barbarawarren9443]

Thank you, Todd. It "breaks the rules of exercise physiology!" Indeed.

[@jayswitzer9871]

very good info I found a physiotherapist and asked them to design a program for a person with POTS , it's part cardio and part isometric and light weights, the recumbent exercise bicycle is very good, i can't use my current zwift setup.

[@olgasantiago-agirlfriendsguide]

I’m happy that you found what works for you!✨🎉♥️ For me, it was very easy basic Physical Therapy for 4 weeks 3x per week. Now I’m doing Pilates (very easygoing) and I walk when I can, even if I’m in pain, I’ll still walk only short distances and very slowly (careful not to fall). ✨🙏Best wishes on your recovery!🙏✨

[@jeanniecampbell1374]

I seem to get flare ups , then I am OK after rest for 3 days .. I get over excited and work Like crazy ...then suffer again ,it s really annoying when I get flair up's which are unbelievably stressful ..still waiting for someone who understands allergies , I seem to be allergic to everything ! ,I have never been so nervous about what I am eating but have to wait until next year to see someone ...should I be begging my Doctor to speed up the appointment i ask myself very often , but I am exhausted ....makes me wonder .

[@RUNDMC1]

Rest really is the only way

[@jeanniecampbell1374]

@@RUNDMC1 I will listen to my body but sometimes if I go out with nature on those walks it seems to do good too because i sleep better ..I guess its getting to know your own body ...what it can take and what inspires the whole person in that moment .the mind is Such a powerful thing .

[@simone15256]

Thanks to the English Speaking World for your researche and the discussions. Those sadly do not help for a break through in the german speaking world. Thanks for speaking a language, that I can unterstand with my school Englisch and no medical backround.

[@katewright492]

I live in the Netherlands where the standard treatment for long covid seems to be physio and occupational therapy. I'd really recommend the occupational therapy but I'm in two minds about the physio. I certainly have improved since I started 6 months ago (up to about 25% of normal activity from about 5% in January), but there were definitely times it was too much, especially in the first 3 months. The physio never seemed to be willing to decrease the exercises even if I reacted badly to them. I'm planning to take 2 weeks off physio and then try a different one, but I wonder if it's really the right thing to be doing.

[@katewright492]

@@user-rv7gd4fo6j absolutely! I've had so many medical appointments lately it's exhausting. I think because I don't have any breathing problems the physio thinks I'm OK. Hopefully the new one will have a different approach 🤞

[@AJansenNL]

The Dutch rehab is modelled on the British one. The ties with the British bps lobby are very strong. As an ME/cfs patient I've heard many stories of people being disbelieved when the treatment made them worse. Entered rehab walking, left in a wheelchair. "Treatment successful" noted on their charts. Unfortunately LC advocacy is in the hands of C-Support (origanated from Q-fever Support), which never have taken a strong stance against cbt/get. Listen to your body. You're the expert. They could have done real harm. Maybe they've even set back your recovery.

[@Beekind799]

@@AJansenNL all post viral conditions are kept in place by low atp levels ask your doctor how to address that,the idiot will ask you what is atp ,your condition can be safely ended in about 12 hours then you take an immune boosting protocol so the next time a virus comes the symptoms will be mild or none at all,your weak immune system cant expel dead viral debris from your system because of the low atp levels

[@AJansenNL]

@@Beekind799 Sure, you have alllll the answers. JFC. What you say is just speculation. Not supported by science and facts.

[@Beekind799]

@@AJansenNL oh dear,i heal post viral conditions on a daily basis ,but not you

[@beverleygregory863]

I have just been diagnosed with long covid on 14th August 2021. I am not able to get out of bed, walk. I am scared about the situation and how I will cope with the marathon ahead of me. I had covid in January 2020.

[@RUNDMC1]

Sounds like you’ve already been through a marathon if you’ve been sick for 20 months?

[@beverleygregory863]

@@RUNDMC1 , I was taken by ambulance to QMC in Nottingham and I am not very good at pacing, three years in physiotherapy in 2014 -17 for a ligament injury in 1996 from a RTC. I have yet to see my GP appointment 27.08.2021. I have just started my 7 day self certification and would like to know how I get in touch with groups in my area,or assist with future studies. I have found your KZbin channel very informative and helpful. Thank you

[@RUNDMC1]

Support groups are mostly on Facebook and are not area based - you may find them helpful though!

[@dannythompson7963]

Thank you for all these studies and interviews you are doing Gez, they’re great!! How are you getting on personally these days with long covid?

[@RUNDMC1]

Slow improvement Danny, I do still have to be careful with activity levels!

[@dannythompson7963]

@@RUNDMC1 That’s good, definitely relate to you with being mindful of activity levels, thank you for replying! Glad to hear you’re feeling some improvement even if it’s slow, all the best! look forward to your future videos! 😊

[@Amethyst_fairy81]

Thank you for this. For me things like curable app (bio, social, physical model) had helped me previously with my chronic pain and fibro pre-covid. I am 4 weeks post covid, severe asthma/vocal cord dysfunction exacerbation still having trouble breathing, cognition, word finding difficulty, severe fatigue, exertional fatigue. I am starting PT and ST next week and see pulmonary post covid. I am having so much difficulty doing pulmonary rehab was given from hospital no wonder hr is 140 at 10min explains so much. Right before covid-19 had graduated PT for meniscus tear and was starting gym. Just got wiped from phone calls and ADL's. I hate this. For everything else graded exercise/PT has worked and even with CF/Fibro flare needed to pace before but nothing like this.

[@juliefreemankummer6686]

Thanks so much - really enlightening. Thanks especially to Darren and everyone for creating the resources you helpfully posted in the description, this will help me as I'm about to start respiratory physio and not sure how much my physio is aware of long-covid rehab.

[@Beekind799]

you need to expel the dead viral debris from your system,tahst whats keeping you stuck in sickness,low atp levels is your problem,its low atp levels taht keeps all post viral conditions in place ,in 12 hours long covid can be safely ended

[@amadorklan]

I have been suffering from PostCovid symptoms, suffering from the virus in April 2020. I was refer by my Doctor to a Work Conditioning program. It is physical therapy with gradually increased activity levels. I absolutely enjoy it, however, I totally crash in energy for 1-2 days. I was hospitalized for 14 days and on oxygen therapy from April 6th-Sept. 14, 2020. During that time, I made it a point to set walking goals for short periods and short distances, gradually increasing both, and always pausing to catch my breath and energy. Pace-stop-pace. Increase.

[@vodkadave69]

This is super important information , Thank you all 🙏🏼

[@francescachristy8761]

Thank you so much. This is spot on. Having all the links to the resources in the title explanation is super helpful 💗

[@RUNDMC1]

Thanks Francesca!

[@yogipamjohn4572]

I’ve got long Covid, previously very active, I’ve relapsed so many times due to trying to exercise on my good days. I’ve been shouting from the start that GET doesn’t work. I’m not de-conditioned, I just still have something in my physiology which is out of balance. I do still think face mask wearing has played a big impact causing a breathing pattern disorder in myself

[@Beekind799]

everybody that drinks the miracle mineral solution is over long covid less than 12 hours thats why its called the miracle mineral solution,it cost 7.59 uk pounds ,only stupid people wear facemask they damage the immune system ,you have low atp levels coming from low glutathione levels thats a weak immune system that cant expel dead viral debris from your system,when you exercise the dead viral debris moves the macrophages and tcells respond they have no fuel and spit out cytokine storms the inflamation they cause can kill you ,its not the virus harming you its the response of your own weak immune system,go on ebay type in mineral solution set scroll down you are after 2 slim plastic bottles with a yellow and green cap 2 x 33ml cost 7.59 uk pounds that is chlorine dioxide the miracle mineral solution,put 8 drops of sodium solution in the bottom of a glass add 8 drops of citric activator let it mix for 20 seconds it goes dark now fill the glass up with water and drink it slowly on a TOTALLY EMPTY STOMACHE in less than 12 hours all the dead viral debris will be expelled from your system the immune system will calm down and the energy levels rise,look at the photos below the product and read what it says,it claerly says it is used for making drinking water safe to drink,if you used bleach you would die,big pharma will do all they can to stop you using the miracle mineral solution ,they will say its bleach its dangerous and you can say ,no it isnot bleach mms is used for making drinking water safe, after you drink the mms wait for a minute then have a glass of water and then brush your teeth donot eat for an hour in less than 12 hours you will say like everyone else its a miracle,it saved my brothers life it was miraculous,he was blue he couldnot beathe 4 hours after taking the mms he was walking up and down the stairs saying its miracle itsa miracle taking big deep breaths ,if you message me i will type out a protocl that addresses the nutritional shortfall in the food you eat,

[@alexandrecouture2462]

Yeah long covid definitely is a different beast than what doctors are used to. Also, I had my second vaccine (moderna) wednesday. On the first night, I had chills and slept about one hour during the whole night. The day wasn't great too... But, the second night was fine and today, while not being great, is much better. My first vaccine was a great help and I hope that the second will clear out long covid for good!

[@CourtneySchwartz]

Same… 1st (AstraZeneca) gave significant improvement. 2nd (Moderna) worsened some symptoms. Both felt like 3 days of flu, with fever and bone-deep pain.

[@alexandrecouture2462]

@@CourtneySchwartz Hi! Now it's getting better, but geez, 6 days later! Also, for the first time since january, my pee is not always dark yellow. I really feel it inside of me, it is doing its job!

[@toufikbeni336]

Thank you so much My father after 8 months still on oxygen 3 and 4 liters now, the ct scan of his lungs 6 months ago showed more than 90 percent of damaged and his pco2 was so bad too. To be honest he's much better but can't walk more than 20 meters because his oxygen drop fast with oxygen supply or with not Still on steroids too 20 mg. Please and please any one here have any idea or had the same experience of my father can tell me how we can make his lungs got better and how we deal with pulmonary fibrosis of post covid? He's still not vaccinated Please need some helo i was all this 8 months with my father and we are so tired

[@RUNDMC1]

So sorry to hear about this. I can’t offer much advice but perhaps some other viewers can.

[@Unitedstatesian]

A question for everyone. Has anyone donated blood while suffering from Long Covid? Studies seem to show that blood cells are damaged and the body is not replacing them for some reason. Maybe donating blood would force the body to make new healthy cells? Or maybe this tax the body too much and lead to a worsening of symptoms? Anyone with experience? Any research on this?

[@ms-jl6dl]

I just did my extensive blood test; I have "elevated number of leukocites,small number of them deformed" is what my doctor said yesterday. " Nothing to worry about,possibly some chronic infection somewhere". My red bloodcells were ok.He sent me to check my spleen with ultrasound?? based on my symptoms. He doesn't "beleive" in long covid. I had mild covid(4 days of fever) a year ago.

[@Unitedstatesian]

@@ms-jl6dl Some doctors still don't believe. It is crazy. Have you donated blood?

[@samikassou2944]

This is such a difficult topic. The issue I'm having is do I have me/cfs and POTS or just POTS. It's been proven that exercise is super beneficial for people with POTS so I feel like I'm being thrown post to post with advice.

[@BedboundME]

I’m personally not necessarily comfortable with post exertional malaise being adopted as a symptom of longcovid instead of those with a covid trigger who have ME symptoms and post exertional malaise being diagnosed as having MECFS. Many people with ME have a variety of viral triggers so I don’t understand why an complete exception is being made. Also there seems willingness of pwLC to accept they have POTS and dysautonomia as parts of their longcovid but not MECFS, this is probably due to the fact POTS is seen as validating and MECFS stigmatising, but it’s a contradiction in my opinion. If there are no additional symptoms unique to longcovid there’s no reason imo not to recognise it as mecfs, and if it’s accompanied by symptoms caused by having a respiratory infection like breathing issues, I don’t understand why mecfs can’t be incorporated as MECFS + breathing , or if it’s more complex than that, more generally as I have mecfs as part of my longcovid , rather than saying I have long covid and post exertional malaise & fatigue & brain fog, . Afaic mecfs IS post exertional malaise , because it’s always been unique to ME and so defining of it as an illness so therefore those who have post viral post exertional malaise IMO have MECFS , Post exertional malaise is not just a common symptom that’s also part of longcovid , as I say it IS ME & it’s not in other illness which is why the medical profession have essentially largely disbelieved it as patients have described it until recently. I’m not sure It’s helping the cause of the #ME community for their unique and defining symptom to now be called part of another illness, which is largely being treated separately and far better, and the deep and entrenched disability of ME still ignored by the medical world. That doesn’t mean the trigger and separation of the two communities can’t there in research that needs to explore potential for different underlying pathology due to ACE receptors etc. But there was no concern re. the different viral triggers of ME, it was all called the same. Some have flu triggers, some mumps etc.

[@jeremiaspuls7217]

Hej, thanks for your series! Could you do an episode on low dose naltrexone (LDN) as well?

[@patiencefalters9024]

I had COVID early on, in hospital w/pneumonia in 2020 & NEVER BEEN ABLE TO SHAKE EXHAUSTON 24/7, BREATHLESS & NO ENERGY CLOSE TO WHAT I HAD, NO TASTE. WHY WON'T MY Doctor POST THIS IN MY CHART/RECORDS? RECORDS

[@traceydiamonddesigns]

Thank you Gez and the whole panel

[@marieparker3822]

So many thanks to everyone. This is so helpful.

[@RUNDMC1]

Thanks Marie!

[@Evajkpg]

Omg! This is the core problem i the health system and the reason why I do not get any help. Well done again.

[@karennatella3105]

I used aqua exercise to get back to exercising. It worked for me. My heart rate was better controlled. Has anyone in the group try this means to workout.

[@vgraham2988]

Thank you so much for this.

[@epassafonti3726]

Sars covid2 or sarcoidosis ?

[@gecko2716]

Would it make sense too you that if the irradiated food products in your society were not labeled as such that you would be denied the ability too choose too make smarter food choices and it is so obvious that if the food product that you were consuming

[@deethompson3592]

Thank you all once again. I have to say at this stage of the game I struggle to have a conversation. Long covid the second time around is far more debilitating for me than it was initially which is a scary prospect in the respect- Will I always fall back into long covid after any illness 🤔 Will it always be triggered 😱 I thought I'd recovered and went back to work for about 7/8 months and here I am again. It makes me wonder whether this is going to be a life long condition - Time will tell ...

[@IamLinda_]

Wait. What? SECOND time around? How did that happen? Did you get Covid a second time?

[@suesheffield4533]

It petrifies me, that I will catch it again. Especially now in the UK. I know from work that we had no isolators between March and mid June. In the last 4 weeks 15% of our workforce has had to isolate due to positive tests or family being positive.

[@deethompson3592]

@@IamLinda_ not that I caught covid for a second time I've had a relapse into long covid which I thought I'd gotten over last year 😱

[@Anamaria-ew8lh]

@@deethompson3592 this happened to me, too. For me, lack of sleep is one big trigger. Even 1 hour makes the difference. I took IVM and than felt better, but had relapse again, when stressed or had not 8 hours sleep.

[@deethompson3592]

@@Anamaria-ew8lh it's a really scary prospect to think this is in own systems for life now isn't it 🤔

[@swifthorsewalking634]

What does ME stand for?

[@BedboundME]

Myalgic Encephalomyelitis

[@BedboundME]

Or Myalgic Encephalopathy. There’s controversy over the term Myalgic Encephalomyelitis because “Encephalitis” as a term is long used by medics for a very serious type of brain swelling, rather than neuroinflammation which is what is suggested. There’s, astonishingly been little research on the brain in mecfs despite the cognitive dysfunction, there’s only now PET scans etc being done to identify whether neuroinflammation and microglial activation is a key factor in ME. There’s probably research underway for longcovid. Medicine therefore has been hostile to ME as a term (despite being happy with names like malaria) so to try to compromise, The ME association devised the term Myalgic Encephalopathy but the medical profession still widely and predominantly use the belittling, patient-hated term Chronic Fatigue Syndrome, a term specifically promoted by UK psychiatrists because it left open psychological interpretations of the illness.

[@swifthorsewalking634]

@@BedboundME Thank you for the answer...just saw it belatedly. I can see why ME is always abbreviated!

[@susanwright1999]

I have long covid.felt ok yesterday did a few things . feel like rubbish today .

[@Winstoncb]

Excellent video - the closing comment on the comprehensive post-exertional symptom exacerbation guide (even better than "post-exertional malaise"!) could have remarkable impact educating clinicians and even policymakers. If I might add one point for any newcomers: while "biopsychosocial" and "BSP" were referenced several times in this video, the rationale for graded exercise therapy (GET) was solely attributed to one of deconditioning. But if that were the case, we wouldn't be here debating the efficacy of GET for years, because as one panelist noted we'd simply learn (rather quickly) through trial and error that this was in fact harming most patients. So in fact, the primary model of illness held by those who advance GET is *false illness beliefs*. It is a small group of eminent UK-based psychiatrists like Simon Wessely and Michael Sharpe who have advanced the notion that those with post-viral chronic disease or "ME/CFS" must be disabused of those false beliefs by a steady ramping of exercise. It is not for an addiction to drama that the "BSP Brigade" have been pegged as boogiemen. It is the fact that they have almost single-handedly delayed biomedical research into diagnostics and treatments while psychologizing and stigmatizing the condition. It's why we are still empty handed when it comes to treating those newly afflicted with post-viral chronic illness following COVID, and why many here may have to wait years for treatment that could already have been readily available.

[@gesomm]

I am doing quite well whe on Ivermectin. Should try at least

[@chelseabangs9657]

Personally pushing through it was better for me to get past the fatigue. There was no stopping of my symptoms for the entire 16/17 months of long covid just management of the worst symptoms. When I first left the hospital 1 hour was my max, but I’m a hairdresser so I had no choice to do what I had to do. I definitely recognize the long hauler walk when I see it, and I recommend your video for the supplements that help.

[@robotsrulejapan]

Have you recovered in those 17 months? I just want to know what’s possible. If it takes 17 months I can do it.

[@markanslow4720]

Great stuff Gez - thanks for sharing as ever! P.S. I'm waiting for Dr Asad to have his own spin-off show. You know, like the Better Call Saul to your Breaking Bad...

[@asadik76]

You’ve got me thinking now….

[@markanslow4720]

@@asadik76 You mentioned in Gez's latest video that you felt like you might be starting to come through the worst of LC - has your POTS/tachycardia started to improve yet?

[@asadik76]

@@markanslow4720 I thought so too- unfortunately it was a good patch and in the last week or so, events have sent the old sympathetic system for a twirl again. What is different though is that my recovery to baseline is quicker- I attribute that to military discipline with mindfulness and breathwork…

[@markanslow4720]

Ah, so sorry to hear about the dip, but great that recovery to baseline is getting quicker - I am noticing the same thing actually I think. Stay strong and hang in there!

[@ingathomas6653]

I have the impression that GET is done in a wrong way. You have to be very disciplined and controlled. It's much harder and more involved than pacing. Pacing is right when you've had a crash. It doesn't help me and many others to recover at all.

[@jdknight-mark633]

So…just allow our muscles to wither away?

[@RUNDMC1]

No, you try to be active whilst remaining inside your energy envelope

[@michaels7258]

Every time I exercise I get a big flare up.

[@RUNDMC1]

Please take it as easy as possible!

[@phxx3054]

haven't watched it yet but I feel I might want to get some popcorn for that ;)

[@muhammadalieesaa3379]

I have a question about your experience about long Covid, did long Covid mean you had to self isolate for over a year?

[@AJansenNL]

No. Why would you do that? It's not contagious. It the result of contagion.

[@muhammadalieesaa3379]

@@AJansenNL that's good news, because I wouldn't want to be isolated for 15 months, that would send me mental.

[@AJansenNL]

@@muhammadalieesaa3379 I was harmed by lack of treatment and support for my ME/cfs. Now I'm house- and bedbound from constantly having to go beyond my limits, not being able to pace. I haven't gotten mental, but isolation is really hard. Take care of yourself!

[@alexandrecouture2462]

Long covid is not know to be contagious.

[@ArtyAntics]

Now I understand why working up to 10,000 steps a day made my body collapse into a deregulated mess last year. Really feeling quite cross with my old GP now.

[@ammamaw]

“When they’re symptom free.” 😂🤣🤣😂🤣😂😂🤣😂🤣😭

[@RUNDMC1]

Hopefully we will all get there Mary!

[@travelwell6049]

Symptom free? What? It’s a chronic illness that you may never recover from. When is one symptom free? I don’t get it. 😒 SYMPTOM FREE?!?!?!?!

[@RUNDMC1]

I think the point is more that you shouldn’t ramp up activity levels till you’re better, however long it takes.

[@LAIDBACKMANNER]

PLEASE make a video on *ivermectin* in regards to COVID-19. Great channel by the way... Subbed!

[@RUNDMC1]

I already have!! Go back into the archives :)

[@Ymn1119]

Are we going to suffer with this forever? 😔

[@RUNDMC1]

We all hope not

[@Beekind799]

everyone that drinks the miracle mineral solution is cured in hours the cost is 7.59 ,message me ,i cured over 30 long covid sufferres last week ,it expels dead viral debris rapidly the immune system calms down and the energy level rises ,one drink of mms ends all the pain kisery and suffering in hours and you will see why they call it the miracle mineral solution

[@ruud220]

First here 😉

[@IamLinda_]

Here's your trophy 🏆

[@ruud220]

@@IamLinda_ thanks 👌 better than my COVID

[@mikecarey1990]

More BS instead of finding and eliminating the cause of the symptoms.

[@allanreeling7002]

I found of particular interest the comment about clinicians taking on board the recent some science and strategies. Particularly consigning to the bin the "get back to exercising regardless of outcome" way of thinking. As a, now, ex athlete, we trained to excess on the grounds that eventually our performance would improve due to challenging and pushing our current limits. I.e., Todd's comment regarding exercise as universally "good medicine"! What also registered was the comment regarding clinicians reading up and watching these informative videos. I have been universally disappointed by the total lack of, for want of a better term, curiosity regarding Long Covid, exhibited by my GP's. It is going to be a Long Haul, with our lives on an indefinite hold, I'm afraid!

[@RUNDMC1]

I’m afraid you’re right Allan!