This should be compulsory for GP’s to listen to. My major issue is lack of energy, chronic headaches, chronic tinnitus, high blood pressure and heart rate issues.
Thank you so much for this information. I've been sat here crying listening to this as I've been so frustrated that no one believes how much this has affected me and millions of others due to all the tests coming back normal . I'm mainly bedbound/housebound. I've lost my job after 25 years of service. Im struggling financially. I get no help with care so I have no option but to push myself through the pain and fatigue which in turn makes me bedbound with PEM. Knowing that there is professionals out there who do understand and realise the impact has given me hope that things are moving forward.
I cried at this too, I'm so sorry you're going through this as well. I have had to be signed off from my all time dream job that I only had 3 months in before I got ill, 2023 was supposed to be a big year for me but I've been pretty much stuck in bed feeling so ill since January, felt a bit better then caught covid again in March and now I'm much worse with no answers yet. (I also had covid March 2020 and February 2022) It seems that people who haven't had it struggle to understand and it's difficult to feel believed about how awful this is. Sending solidarity to everyone else with post viral illness, I'm desperate for some hope we can get better so thank you to the Drs and scientists trying to work this out and actually TREAT us rather than leaving us to work it out ourselves. We need so much better support for people to be able to take time off work/caring responsibilities to recover/ retire.
Rae Duncan- I have waited a long time for a cheerleader like you. There IS NOTHING MILD about it. You have made me feel so much better. I am relieved that you are on my side. My longcovid is now going on 3 yrs and 8 months. Your empathy is beautiful and commendable. I am so proud of you! You keep going! I feel better just knowing you are here and working on this tragedy. Thank you, for all you are doing. Well done!!! From the North Carolina mountains, USA (See Gez Medinger also! He is also in the UK- he has made a longcovid handbook to take to the Dr. with you!)
Finally doctors that understand what we are going through. I’ve been saying since day one of having long covid unless we understand the root cause and treat that people like me won’t get better. I’ve had support managing my symptoms but not getting better from them! In terms of government funding I think Dr Duncan and Dr Kane should contact Maria Caulfield MP Minister at the Department of Health and Social Care. I’ve recently emailed my local MP who forwarded my concerns onto Ms Caulfield who mentions a £50 million research fund and “welcoming applications for further research”. As this video suggests the care for long covid is disjointed. from my experience I’ve found that neither the GP, Long Covid clinic or trials communicate. I’ve had to drive and take charge of my own health which whilst your exhausted all the time is a challenge that I shouldn’t really have to do!
I’m 3 years in I’m part of the covid recovery clinic at cedars Sinai in Los Angeles one of the” best “ I hate to break it to you guys this isn’t going to go away you go into the clinics and they offer nothing but testing I’ve had it well over 3 years all they do are exams absolutely no treatment all we got is each other the medical system has FAILED us completely!
Your not so lucky hate to break it to you I’ve seen neurology multiple some of the best in the US all I’ve gotten is a shrug of shoulders a sorry not much we can do and a question do you take magnesium🤦🏽♂️ that’s it nothing else no treatment at all
It's looking more and more likely that they can't find what you body is "doing" wrong, because it isn't "doing" anything wrong. This idea that the immune system is doing too much (overacting), is not getting us anywhere in the understanding of what the hell is going on with long covid. This is exactly where the research is with autoimmune diseases. Why does the immune system attack the host? If you try looking at the same problem, but from a different perspective, you may find the answers you very much need. If your immune system "isn't doing" something that it needs to do, you can have exactly the same result as if the immune system does something that it shouldn't. Nobody has been able to help you find out why your immune system does things it shouldn't, because, maybe, it isn't doing anything wrong. This could well explain the lack of help from the doctors. They are trying to find a problem that doesn't exist. Surprise surprise, they can't find it. At present there is no way of knowing why some people have an immune system that struggles with putting the brakes on an inflammatory response. Probably because they are all trying to understand why it is accelerating like mad. What is known, or at least getting better understood, is the things that can cause the runaway inflammatory response that we expose ourselves to, on a daily basis. Try "environmental causes of inflammation" in a search engine. It will not help you understand why your body has the problem, but may allow you to reduce the suffering.
I've had covid twice, most likely from teaching large high school classes in Los Angeles. I've lost muscle strength, have had fainting spells, frequent headaches, fatigue, hearing loss, and my balance has deteriorated greatly. My doctor has no ideas...I have to make suggestions which are all dismissed.
It is great to see professionals who really care, and understand what Long Covid really is. We now need the research for treatment and cures that only government funding can provide.
I think all GP surgeries in UK should be sent this in depth video. Just yesterday, my GP told me to start walking twice a week, and rest. Also to start exercising in groups to encourage myself back into exercising. I was shocked to hear that after more than 3 years since the start of Covid, a well educated GP has no idea of post malaise fatigue.
Graded exercise theory and memory brain games like cross word puzzles for ME/CFS or post exertional malaise was all I could seem to find on the internet until about 2 and a half years ago. Your GP must be from old school learning. I just hope he isn't a proponent of trans orbital lobotomy.
I just want to say a huge thank you to everyone who has contributed to this panel. Despite the enormous mountain we have yet to even set up base camp at, in my eyes this is what real hope looks like! Rae Duncan in the three years I've survived so far with long covid I haven't heard a single voice in the medical establishment as kind and empathetic as you were in this video. It means the world, especially in a landscape of all too common scepticism and gaslighting. THANK YOU!
I was told I had depression after having long covid fatigue, brain fog etc for over 5months! It is disgusting that patients aren't believed or fobbed off. I then had what looked like a stroke a few months later. All tests came back normal. I then started getting severe vertigo, numbness in limbs etc the list goes on. Now on a waiting list for a long covid clinic (8month waiting list) It's not depression!!! It is psychologically damaging to not be believed when you're experiencing physical symptoms that you'd never experienced before having covid.
I was fobbed off for 8 months and sent away from emergency many times. I have just found out I have multi clots, worsen asthma, high blood pressure etc etc. I saw a Doctor yesterday and she has a Long Covid interest. Honestly I could have hugged her as she completely got it.
@@SuperKabookient think that way. PACE. Its the hardest damn thing I have ever done in my life. Pacing is the worst thing about this. Not my pain, not my brainfog, when I stand in front of my stove, and I'm have NO IDEA how I made a roast,lasagna, chili. ...my husband just looks at me. He feels sorry for me. Part of me is gone. Food is like cutting up a sponge and trying to chew it up. No taste no smell. And FORGET sleeping, that's over. Days with no slp. I'm so f done!!! PACE. It will help you so much! Look up at the clock, it's time to pace. Stop, sit down, pace. That is how I'm surviving.
@@kellyberry4173 I’m so sorry for your suffering. I understand how you are suffering the loss of your former self. I think we all are grieving the loss of the bodies we once had. I keep reminding myself that I could be worse….it keeps me humble lol. My wish for all of us is that some streamlining of treats starts happening soon. My best wishes in your recovery.
As 40 year old with long covid of the pots, migraine and post exertional exacerbation varieties who at two and half years on experienced a VT that has further disabled me, I'm scared that repeated infection via my child's school will eventually trigger an event I don't survive. I was told my clotting event and the multiple PEs are not because of my LC pathology but due to inactivity which doesn't leave me hope as I am now housebound and 80%+ horizontal just to manage symptoms. I'm in my 7 month off work for this relapse and increase in disability.
Long covid sufferers need TREATMENT not just symptom management. In my personal experience as someone who has suffered fibromyalgia for years and now have a daughter with long covid, western medecine is completely hopeless when it comes to treating chronic conditions. I have been on the medical roundabout for 2 decades being shunted around various specialists none of whom look at the big picture. Incredibly frustrating.
This happened to me - lung function test, heart test. Respiratory specialist Cardiologist Haematologist Vasco surgeon One Doctor at emergency said - You should have reported this at the start of symptoms. But I did and was constantly turned away. I now know my severe breathing issues are due to - Multi Blood Clots. Worsened asthma Worsened auto immune My quality of life is poor.
@@vanessawalker2656 ... Why does everyone blame vaccines when there are many people like me that were hospitalised with COVID19 before vaccine release, and had "long covid" well before the first vaccine in the UK ?
Oh my goodness, Benita Kane comprehensively understands the position we find ourselves in. That at least is something, meanwhile we continue to try and muddle our way through on our own as usual, trying to find anything that helps us get from one day to the next
I had severe breathing issues and low oxygen levels. I was told I had a panick attack and sent away. After 8 months of persistently trying to get heard If I finally now know I have multi clots, bight blood pressure, heart race, worsening asthma & auto immune.
Long covid will destroy the human race. The chances of going from childbirth to old age without getting long covid is virtually impossible from now on unless you're real lucky.
Yeah, since Feb 2020, I've not gone into restaurants, stores, movie theaters, no where indoors. When I need to go indoors for a doctor's appt, etc., I wear an N95 and goggles. I've not caught it yet but know it's just a matter of time. People always ask me what my endgame is .. I simply ask what is theirs? To be repeatedly infected with a 12-18% chance of getting Long Covid with each infection? (That's our chances in the U.S.) Where will this world be 10 years from now? 😔
@@circa1890 Even worse is the possibility of bird flu recombining with Covid or another common influenza A virus. This can happen in humans or other mammals that share our viruses. With the amount of people in this world infected with common flu handling millions of infected Birds it's only a mere matter of time. of course we could always blow ourselves off the surface of this world in a nuclear war. I'm like you I'm very cautious and wear a mask but unfortunately I had to go to a dentist yesterday where you going to lay on your back with your mouth and nose open. 73 years old I'm not ready for this.
I would add problems encountered financially. I no longer have income from my front-line role (we're not all nhs nurses btw). Ill-health retirement appl was rejected on basis that 'we have no medical evidence to suggest that his prognosis for recovery is likely to be poor'. Chief Medical Officer assumes I'm getting treated with drugs, not just 'managed'' by therapists. To appeal they require proof of permanent disability, how do you prove future events? My assessor clearly had no knowledge of long covid, how do you win against this failed system and no energy to fight?
Both myself and a coworker had good results with ArtemiC Rescue, getting past corona quickly in a few days. If you search "artemic testing" you will see all the study results for Covid and Longcovid
@@jackiebrennan2475 Both myself and a coworker had good results with ArtemiC Rescue, getting past corona quickly in a few days. If you search "artemic testing" you will see all the study results for Covid and Longcovid
@@kathleenvance4778 I bought the ArtemiC Rescue and ArtemiC Support immune system package for around 200d only once. That lasts 32 days, and my Longcovid had disappeared after only 9 days.
Thank you so much for putting thid video out there.. I've had Long Covid 2 years. Attended rehab LC group at St Thilomas Hospital.cEmphasis on self care and pacing. No treatment. Not had many tests done by GP, had to push for tests. Mainly feel minimised and fobbed off. GPs need to attend courses on Long Covid. No free tests now so public not testing. I'm off work 6 months. On half pay for NHS and still unwell with Fstiguexand muscle pain, heart palpitations etc. So the quicker drugs are available the better. Thank you xx
I would like to ask Binita Kane what she would say about why it is important to treat underlying causes. If we are unsure what it is and so on also. Why that is important. Like an example of an issue that you do not think its sufficient only to treat symtom. Of course there is many, but it would be great to have an answer of a few issues like that.
The other issue regarding a database is the level of disbelief amongst medics, the lack of correct coding by GPs and the numbers of those with LC who remain undiagnosed or diagnosed with anxiety or depression
I'm surprised there was no mention of FLCCC. When they mentioned someone spearheading trials invloving drugs and protocols I immediately thought of the FLCCC who have been using different things (successfully) to treat both covid and long covid.
I'm young and haven't been able to work (or take care of myself) since January 2021. Even if only 50% of those with LC have post exertional symptoms and the rest have organ damage (I have both), we have still more than DOUBLED the number of people in UK with ME/CFS - a postviral condition that 95% do not recover from
It's so great to see the contributors being so passionate and extremely knowledgable. However the lack of central government support for research, and the stupidly accepted notion that we can safely abandon Covid precautions, is both frightening and very misguided! As for the pleading to education health care providers, when I asked my GP questions about my Long Covid, her response was, "oh I don't read about that stuff"!!
@APPG Coronavirus ... I'm totally confounded by groups like this with "supposed" NHS Drs and specialists who talk about the long covid service. I'm an NHS porter who was infected COVID19 in early and subsequently was admitted to A&E after the occupational health department chased me up for a return to work date after being seriously ill (SATS in mid to low 80s for 12 days) whilst at home. I finally ended up in the ICU of the very hospital that I work in, and I have still not recovered after over 4 years. I was eventually accepted into the supposed "long COVID" (non clinician led clinic, but that was only after over a 3.5 year wait, unfortunately that service and so called support has now been de-funded with only a few box ticking investigations being carried out. I now still have some pretty serious cognitive, cardiac, pulmonary MSK, chronic fatigue, temperature control and pain issues. There is no support for this NHS worker who remains at work, but with no real support from my employer the NHS ... WHY ???? The NHS was happy for me to work in a patient facing role with no protection, and happy for me to take one for the team, but aren't interested in accepting that I'm suffering for my loyalty during the worst of the pandemic.
Same thing happens here in the USA as well. A lot of tests…all negative and no treatment’s available. My brain is messed up and because my mri of the brain looks great nothing is really offered. Most doctors want to tell me that I have anxiety. Of course I have anxiety, my brain keeps telling me that I am dying.
Will this brilliant group focus on the rather controversial issue of the side effects of covid vaccines? I never experienced heart palpitations until after the second jab and have suffered ever since (my brother too).
What about the covid shot, have we done any long term research regarding the side effects? I have loved ones who took it and they all get super sick, very often. I live with them. But I haven’t been sick once except in 2020. One of them definitely has long covid, and totally lost sense of smell since getting ill. This is very serious and not like a flu. But I’d really like to hear if any long term studies were done on the shot? I avoided it cause I got Covid very early and had the antibodies that have protected me this whole time.
@@MrFilip121 The website is fine, I have ordered multiple bottles of both ArtemiC Rescue and ArtemiC Support and they arrived within a week and no issues.
@@CBEACH I tried the substances that they include(vitamin c/curcumin/others) and they did very little to me. Looks like a scam that you are promoting. You seem to have links on your channel to them as well. Where is the full study? The clinical trials website has "no results posted" for their trial. Also, they only seem to mention covid, not long covid.
Once again, thousands of words, but no comprehensive approach discussion… Please give us someone with a comprehensive approach instead of a bunch of complaining about how there is no comprehensive approach… Maybe we need artificial intelligence to help with this
Though this Comment focuses mainly on Endurance Athletes with Long COVID, it lists many Lifestyle Changes that ANYONE can do NOW to start your Recovery. These Lifestyle Changes can also help to PREVENT Long COVID. Many endurance athletes have contracted Long COVID. I believe it has to do with Overtraining and a Type A Personality where you have an attitude of working through any weakness or illness with more training. Training is Good, but there can be TOO MUCH of a Good Thing. Exercise breaks down your muscles, and it is a Stress on the Body. When your Body recovers over time, it rebuilds the muscles to be stronger. If you start training again before your Body can fully recover, you are creating a Chronic Stress that is deleterious to your Health. It depletes your Body of Essential Nutrients critical to proper Immune System function as well as downregulating the Immune System. There may be some other Stressful Event, such as Loss of a Loved One, Loss of a Job, Loss of Financial Security, Divorce, a Traumatic Accident or Surgery, etc. All of this causes Chronic Stress, and Long COVID is the end stage result with a complete breakdown of the innate Immune System, triggered by an acute COVID-19 infection of an ALREADY Compromised Immune System. It may allow other secondary infections of other viruses (such as Epstein-Barr Virus) to come out of remission. Over 90% of the world’s population has EBV in remission. An EBV infection has many of the same symptoms as Long COVID, so you can see the extent of the problem. Secondary infections from other bacteria, molds, protozoans, and parasites may appear with Long COVID. Autoimmune Diseases, Allergies, and Toxicities to Environmental Toxins can complicate the disease. The First Step is you must Believe you can Heal, and set you intention to do so. You will do whatever it takes for as long as it takes to Recover. The next step is to reduce Stress. Since Exercise typically leads to a relapse, you will need to work on changing your Mindset. Eckhart Tolle’s “The Power of NOW” can offer such a reframe if you dwell on negative events that occurred in the Past or you believe can occur in the Future. It describes how he recovered from Chronic Depression and eliminated destructive cycles of negative thought by focusing on the Present. The Past is History and the Future is a Mystery. They cannot affect the Present. The only time you can Choose to make Changes to your Life is in the NOW. You can also Choose to be Happy to reverse Chronic Stress. Studies show Happiness will boost the Immune System. Dr. Tal Ben-Shahar has a video on Positive Psychology: The Science of Happiness, where he lectures on how to increase Happiness and Gratitude in your Life. Meditation is another important way to reduce Chronic Stress. There is a wealth of info online discussing how to meditate and providing Guided Meditations. You will want to become a Student of Good Sleep Habits. Deep Sleep is the ONLY time the waste products of normal metabolism and Inflammation are removed from the Brain. You’ll want to learn how to PREPARE for a Good Night’s Sleep and maximize your Deep Sleep. WITHOUT PROPER SLEEP, nothing else you do for Recovery will be effective. Breathwork is the most gentle way you can start to move back into Exercise. The Physiological Sigh is a Breathwork technique that can reduce Anxiety, slowing the Heart and slowing quick, shallow breathing. Dr. Andrew Huberman has some good videos on this technique. Wim Hoff also is well known for his Breathing Techniques. You will want to become a student of Recovery after Exercise as you GRADUALLY Pace your way back to getting physically active. NO MORE OVERTRAINING. Overtraining PREVENTS you from achieving maximum performance besides causing Long COVID. When you Recover from it and Train CORRECTLY, you will set new Personal Records. 👍 You will want to become a Student of Proper Nutrition to know the most nutrient-dense foods to eat in a Low Carb, Low Inflammatory, Whole Foods Ketogenic Diet with Intermittent Fasting to manage Blood Insulin and Blood Glucose at lower, more optimal levels. In addition to Intermittent Fasting,, you’ll want to do occasional 3-5 day Prolonged Fasts to stimulate Autophagy and completely reset your Immune System. I suspect, but have no evidence, that Autophagy from Prolonged Fasting may help those who genetically have problems breaking down the Fibrin “sludge” in their Blood as well as the Inflammatory SARS-CoV-2 Spike Protein. You will need to become a Student of Supplementation to know how to correct the deficiencies of essential vitamins, minerals, and antioxidants in order to Optimize your Immune System. Dr. Eric Berg offers a FREE Course on this very subject. The pH of your stomach acid is CRITICAL for proper breakdown of food and absorption of essential nutrients. I think it’s Dangerous to attempt to INCREASE your Body’s pH by ingesting things, particularly Baking Soda. Too many people suffer from too alkaline stomach pH. If you follow proper Nutrition/Fasting/Supplementation, your Body will properly handle pH.
This should be compulsory viewing for EVERYONE, but particularly all Members of Parliament...
Long covid is bullshit. It vaccine injuries. There lieing again.
This should be compulsory for GP’s to listen to. My major issue is lack of energy, chronic headaches, chronic tinnitus, high blood pressure and heart rate issues.
That's all vaccines injuries. They are lieing to you again. You can trust these unaccountable criminals.
Thank you so much for this information. I've been sat here crying listening to this as I've been so frustrated that no one believes how much this has affected me and millions of others due to all the tests coming back normal . I'm mainly bedbound/housebound. I've lost my job after 25 years of service. Im struggling financially. I get no help with care so I have no option but to push myself through the pain and fatigue which in turn makes me bedbound with PEM. Knowing that there is professionals out there who do understand and realise the impact has given me hope that things are moving forward.
I cried at this too, I'm so sorry you're going through this as well. I have had to be signed off from my all time dream job that I only had 3 months in before I got ill, 2023 was supposed to be a big year for me but I've been pretty much stuck in bed feeling so ill since January, felt a bit better then caught covid again in March and now I'm much worse with no answers yet. (I also had covid March 2020 and February 2022) It seems that people who haven't had it struggle to understand and it's difficult to feel believed about how awful this is. Sending solidarity to everyone else with post viral illness, I'm desperate for some hope we can get better so thank you to the Drs and scientists trying to work this out and actually TREAT us rather than leaving us to work it out ourselves. We need so much better support for people to be able to take time off work/caring responsibilities to recover/ retire.
You do realise that this caused by stress right
@@ezza1236please explain...😮
@@ezza1236NO
You have vaccine injuries. Long covid is another lie to cover for vaccine injuries. It's not rocket science.
Rae Duncan- I have waited a long time for a cheerleader like you. There IS NOTHING MILD about it. You have made me feel so much better. I am relieved that you are on my side. My longcovid is now going on 3 yrs and 8 months. Your empathy is beautiful and commendable. I am so proud of you! You keep going! I feel better just knowing you are here and working on this tragedy. Thank you, for all you are doing.
Well done!!!
From the North Carolina mountains, USA
(See Gez Medinger also! He is also in the UK- he has made a longcovid handbook to take to the Dr. with you!)
Finally doctors that understand what we are going through. I’ve been saying since day one of having long covid unless we understand the root cause and treat that people like me won’t get better. I’ve had support managing my symptoms but not getting better from them!
In terms of government funding I think Dr Duncan and Dr Kane should contact Maria Caulfield MP Minister at the Department of Health and Social Care. I’ve recently emailed my local MP who forwarded my concerns onto Ms Caulfield who mentions a £50 million research fund and “welcoming applications for further research”.
As this video suggests the care for long covid is disjointed. from my experience I’ve found that neither the GP, Long Covid clinic or trials communicate. I’ve had to drive and take charge of my own health which whilst your exhausted all the time is a challenge that I shouldn’t really have to do!
I’m 3 years in I’m part of the covid recovery clinic at cedars Sinai in Los Angeles one of the” best “ I hate to break it to you guys this isn’t going to go away you go into the clinics and they offer nothing but testing I’ve had it well over 3 years all they do are exams absolutely no treatment all we got is each other the medical system has FAILED us completely!
I've been ill 2.5 years and still waiting to see neurology. And I'm one of the lucky ones with a referral.
Your not so lucky hate to break it to you I’ve seen neurology multiple some of the best in the US all I’ve gotten is a shrug of shoulders a sorry not much we can do and a question do you take magnesium🤦🏽♂️ that’s it nothing else no treatment at all
It's looking more and more likely that they can't find what you body is "doing" wrong, because it isn't "doing" anything wrong.
This idea that the immune system is doing too much (overacting), is not getting us anywhere in the understanding of what the hell is going on with long covid. This is exactly where the research is with autoimmune diseases. Why does the immune system attack the host?
If you try looking at the same problem, but from a different perspective, you may find the answers you very much need.
If your immune system "isn't doing" something that it needs to do, you can have exactly the same result as if the immune system does something that it shouldn't. Nobody has been able to help you find out why your immune system does things it shouldn't, because, maybe, it isn't doing anything wrong. This could well explain the lack of help from the doctors.
They are trying to find a problem that doesn't exist. Surprise surprise, they can't find it.
At present there is no way of knowing why some people have an immune system that struggles with putting the brakes on an inflammatory response. Probably because they are all trying to understand why it is accelerating like mad.
What is known, or at least getting better understood, is the things that can cause the runaway inflammatory response that we expose ourselves to, on a daily basis.
Try "environmental causes of inflammation" in a search engine. It will not help you understand why your body has the problem, but may allow you to reduce the suffering.
I've had covid twice, most likely from teaching large high school classes in Los Angeles. I've lost muscle strength, have had fainting spells, frequent headaches, fatigue, hearing loss, and my balance has deteriorated greatly. My doctor has no ideas...I have to make suggestions which are all dismissed.
@@kathleentrinity7367have you ever thought it might be an adverse reaction to the vax
It is great to see professionals who really care, and understand what Long Covid really is. We now need the research for treatment and cures that only government funding can provide.
Not going to happen Sir, but we will be taken care of, just not by the govt
There is a cure for long covid it's called self employment
I think all GP surgeries in UK should be sent this in depth video. Just yesterday, my GP told me to start walking twice a week, and rest. Also to start exercising in groups to encourage myself back into exercising. I was shocked to hear that after more than 3 years since the start of Covid, a well educated GP has no idea of post malaise fatigue.
Truth. My GP does not. Changed GP's , new one does not either.
Graded exercise theory and memory brain games like cross word puzzles for ME/CFS or post exertional malaise was all I could seem to find on the internet until about 2 and a half years ago. Your GP must be from old school learning. I just hope he isn't a proponent of trans orbital lobotomy.
I just want to say a huge thank you to everyone who has contributed to this panel. Despite the enormous mountain we have yet to even set up base camp at, in my eyes this is what real hope looks like! Rae Duncan in the three years I've survived so far with long covid I haven't heard a single voice in the medical establishment as kind and empathetic as you were in this video. It means the world, especially in a landscape of all too common scepticism and gaslighting. THANK YOU!
I was told I had depression after having long covid fatigue, brain fog etc for over 5months!
It is disgusting that patients aren't believed or fobbed off.
I then had what looked like a stroke a few months later. All tests came back normal.
I then started getting severe vertigo, numbness in limbs etc the list goes on. Now on a waiting list for a long covid clinic (8month waiting list) It's not depression!!! It is psychologically damaging to not be believed when you're experiencing physical symptoms that you'd never experienced before having covid.
I was fobbed off for 8 months and sent away from emergency many times.
I have just found out I have multi clots, worsen asthma, high blood pressure etc etc.
I saw a Doctor yesterday and she has a Long Covid interest.
Honestly I could have hugged her as she completely got it.
@@carolashlee8002 Wow, that's brilliant that you found someone who will actually listen, that will give people hope.
I have had the same type of symptoms! I have been told it’s anxiety. No it’s not! But feeling like a stroke is impending is terrorizing.
@@SuperKabookient think that way. PACE. Its the hardest damn thing I have ever done in my life. Pacing is the worst thing about this. Not my pain, not my brainfog, when I stand in front of my stove, and I'm have NO IDEA how I made a roast,lasagna, chili. ...my husband just looks at me. He feels sorry for me.
Part of me is gone. Food is like cutting up a sponge and trying to chew it up. No taste no smell. And FORGET sleeping, that's over. Days with no slp.
I'm so f done!!!
PACE. It will help you so much!
Look up at the clock, it's time to pace. Stop, sit down, pace.
That is how I'm surviving.
@@kellyberry4173 I’m so sorry for your suffering. I understand how you are suffering the loss of your former self. I think we all are grieving the loss of the bodies we once had. I keep reminding myself that I could be worse….it keeps me humble lol. My wish for all of us is that some streamlining of treats starts happening soon. My best wishes in your recovery.
Thank you very much Dr Rae for clearly stating what's going on in a trutful manner.
Rae I burst in to tears, you really care for your patients
As 40 year old with long covid of the pots, migraine and post exertional exacerbation varieties who at two and half years on experienced a VT that has further disabled me, I'm scared that repeated infection via my child's school will eventually trigger an event I don't survive. I was told my clotting event and the multiple PEs are not because of my LC pathology but due to inactivity which doesn't leave me hope as I am now housebound and 80%+ horizontal just to manage symptoms. I'm in my 7 month off work for this relapse and increase in disability.
I'm so sorry...
@@susanmorgan4151 thank you
Are you vaccinated ??
@@jpkramer1028 not for the first 12 months of long covid
Most likely from the jab
Thank you Dr’s for your hard work and compassion! Dr. Duncan thank you for your deep compassion!
Long covid sufferers need TREATMENT not just symptom management. In my personal experience as someone who has suffered fibromyalgia for years and now have a daughter with long covid, western medecine is completely hopeless when it comes to treating chronic conditions. I have been on the medical roundabout for 2 decades being shunted around various specialists none of whom look at the big picture. Incredibly frustrating.
This happened to me - lung function test, heart test.
Respiratory specialist
Cardiologist
Haematologist
Vasco surgeon
One Doctor at emergency said -
You should have reported this at the start of symptoms.
But I did and was constantly turned away.
I now know my severe breathing issues are due to -
Multi Blood Clots.
Worsened asthma
Worsened auto immune
My quality of life is poor.
VAXXED? If so that's the problem.
@@vanessawalker2656 ... Why does everyone blame vaccines when there are many people like me that were hospitalised with COVID19 before vaccine release, and had "long covid" well before the first vaccine in the UK ?
Oh my goodness, Benita Kane comprehensively understands the position we find ourselves in. That at least is something, meanwhile we continue to try and muddle our way through on our own as usual, trying to find anything that helps us get from one day to the next
I had severe breathing issues and low oxygen levels.
I was told I had a panick attack and sent away.
After 8 months of persistently trying to get heard
If I finally now know I have multi clots, bight blood pressure, heart race, worsening asthma & auto immune.
Long covid will destroy the human race. The chances of going from childbirth to old age without getting long covid is virtually impossible from now on unless you're real lucky.
Yeah, since Feb 2020, I've not gone into restaurants, stores, movie theaters, no where indoors.
When I need to go indoors for a doctor's appt, etc., I wear an N95 and goggles.
I've not caught it yet but know it's just a matter of time.
People always ask me what my endgame is .. I simply ask what is theirs? To be repeatedly infected with a 12-18% chance of getting Long Covid with each infection? (That's our chances in the U.S.)
Where will this world be 10 years from now? 😔
@@circa1890 Even worse is the possibility of bird flu recombining with Covid or another common influenza A virus. This can happen in humans or other mammals that share our viruses. With the amount of people in this world infected with common flu handling millions of infected Birds it's only a mere matter of time. of course we could always blow ourselves off the surface of this world in a nuclear war. I'm like you I'm very cautious and wear a mask but unfortunately I had to go to a dentist yesterday where you going to lay on your back with your mouth and nose open. 73 years old I'm not ready for this.
Only if you're vaxxed.
Ohh no, don't forget about wearing rubber gloves. 'Doctor office waiting rooms are scary places'
You will have a better chance if you don't get waxxed
I would add problems encountered financially. I no longer have income from my front-line role (we're not all nhs nurses btw). Ill-health retirement appl was rejected on basis that 'we have no medical evidence to suggest that his prognosis for recovery is likely to be poor'. Chief Medical Officer assumes I'm getting treated with drugs, not just 'managed'' by therapists. To appeal they require proof of permanent disability, how do you prove future events? My assessor clearly had no knowledge of long covid, how do you win against this failed system and no energy to fight?
I’ve been refused ill health retirement as well for the same reason. Just been diagnosed wit CFS/ME
Both myself and a coworker had good results with ArtemiC Rescue, getting past corona quickly in a few days. If you search "artemic testing" you will see all the study results for Covid and Longcovid
@@jackiebrennan2475 Both myself and a coworker had good results with ArtemiC Rescue, getting past corona quickly in a few days. If you search "artemic testing" you will see all the study results for Covid and Longcovid
ArtemiC rescue costs around 150 pounds per month. How many people who can no hold down their job could afford this?
@@kathleenvance4778 I bought the ArtemiC Rescue and ArtemiC Support immune system package for around 200d only once. That lasts 32 days, and my Longcovid had disappeared after only 9 days.
Great info BUT often confused with long civic from the infection or that from the jab. We need to tease this apart much more.
Not only can it not be lived with safetly, but it will surely cause our collective political structures to fail.
Democracy can't live with SARS2.
Thank you so much for putting thid video out there.. I've had Long Covid 2 years. Attended rehab LC group at St Thilomas Hospital.cEmphasis on self care and pacing. No treatment. Not had many tests done by GP, had to push for tests. Mainly feel minimised and fobbed off. GPs need to attend courses on Long Covid. No free tests now so public not testing. I'm off work 6 months. On half pay for NHS and still unwell with Fstiguexand muscle pain, heart palpitations etc. So the quicker drugs are available the better. Thank you xx
Yes we need to train post Covid specialist!
Even though you are in the UK you are advocating for me in the USA and for that I say thank you!
I’ve got exactly all of this and diagnosed with POTS in early January this year by a cardiologist
Im 18 months in....still waiting for results and tests....still debilitated. Ineed cognitive rehab as well as physical....I AM STUCK
I would like to ask Binita Kane what she would say about why it is important to treat underlying causes. If we are unsure what it is and so on also. Why that is important. Like an example of an issue that you do not think its sufficient only to treat symtom. Of course there is many, but it would be great to have an answer of a few issues like that.
The other issue regarding a database is the level of disbelief amongst medics, the lack of correct coding by GPs and the numbers of those with LC who remain undiagnosed or diagnosed with anxiety or depression
Truth!
I'm surprised there was no mention of FLCCC. When they mentioned someone spearheading trials invloving drugs and protocols I immediately thought of the FLCCC who have been using different things (successfully) to treat both covid and long covid.
Very strange, indeed!
I'm young and haven't been able to work (or take care of myself) since January 2021. Even if only 50% of those with LC have post exertional symptoms and the rest have organ damage (I have both), we have still more than DOUBLED the number of people in UK with ME/CFS - a postviral condition that 95% do not recover from
I'm bedridden after covid 😢
@@allahuakbar3810 I was too for the first year, you have my sympathies. hope things can slowly improve for you like they did for me
Dr. Dalton thank you for studying this disease in research!
It's so great to see the contributors being so passionate and extremely knowledgable. However the lack of central government support for research, and the stupidly accepted notion that we can safely abandon Covid precautions, is both frightening and very misguided! As for the pleading to education health care providers, when I asked my GP questions about my Long Covid, her response was, "oh I don't read about that stuff"!!
@APPG Coronavirus ... I'm totally confounded by groups like this with "supposed" NHS Drs and specialists who talk about the long covid service.
I'm an NHS porter who was infected COVID19 in early and subsequently was admitted to A&E after the occupational health department chased me up for a return to work date after being seriously ill (SATS in mid to low 80s for 12 days) whilst at home. I finally ended up in the ICU of the very hospital that I work in, and I have still not recovered after over 4 years. I was eventually accepted into the supposed "long COVID" (non clinician led clinic, but that was only after over a 3.5 year wait, unfortunately that service and so called support has now been de-funded with only a few box ticking investigations being carried out.
I now still have some pretty serious cognitive, cardiac, pulmonary MSK, chronic fatigue, temperature control and pain issues. There is no support for this NHS worker who remains at work, but with no real support from my employer the NHS ... WHY ????
The NHS was happy for me to work in a patient facing role with no protection, and happy for me to take one for the team, but aren't interested in accepting that I'm suffering for my loyalty during the worst of the pandemic.
Same thing happens here in the USA as well. A lot of tests…all negative and no treatment’s available. My brain is messed up and because my mri of the brain looks great nothing is really offered. Most doctors want to tell me that I have anxiety. Of course I have anxiety, my brain keeps telling me that I am dying.
What about the cost to the patient?????
These specialists charged a fortune.
Will this brilliant group focus on the rather controversial issue of the side effects of covid vaccines? I never experienced heart palpitations until after the second jab and have suffered ever since (my brother too).
I am under Exeter long covid...i have heard NOTHING....meanwhile i feel like im just ebbing away on my sofa.... i am just existing.......
What about the covid shot, have we done any long term research regarding the side effects? I have loved ones who took it and they all get super sick, very often. I live with them. But I haven’t been sick once except in 2020. One of them definitely has long covid, and totally lost sense of smell since getting ill. This is very serious and not like a flu. But I’d really like to hear if any long term studies were done on the shot? I avoided it cause I got
Covid very early and had the antibodies that have protected me this whole time.
i have had my work wanting to get rid of me as a get more ill
Did cryoglobuline occur after SARS COV2 infection?
44:00 this hit me
Karen Kingston, DR.ANA MIHALCEA.
Did we know at what tissue temperature did SARS COV2 better replicate ?
Did SARS COV2 induce persistent infections ?
At TWiV 659 at min29 virologist Christian Drosten suggest something
I have been very blessed to NEVER get Covid because I don’t be exposed by too many people on a daily basis 🙏🏽
had a microclot now being sorted tomorrow, i worry about micro clots elsewhere....
Do micro clots show up on a D dimmer blood test? or di you have another test?
@@barbarabarlow3185 mine showed up on a retinal scan
Look into the herb 'cats claw'
Stop rolling up your sleeves.
Have you tried the ArtemiC Rescue and ArtemiC Support Combo? They are specifically for Covid and Longcovid.
Is there any evidence of it's effectiveness? Looks like it is a scam. Their website is buggy/unfinished.
@@MrFilip121 Both myself and a coworker had good results with it, getting past corona quickly in a few days.
@@MrFilip121 The website is fine, I have ordered multiple bottles of both ArtemiC Rescue and ArtemiC Support and they arrived within a week and no issues.
@@MrFilip121 If you search "artemic testing" you will see all the study results for Covid and Longcovid
@@CBEACH I tried the substances that they include(vitamin c/curcumin/others) and they did very little to me. Looks like a scam that you are promoting. You seem to have links on your channel to them as well. Where is the full study? The clinical trials website has "no results posted" for their trial. Also, they only seem to mention covid, not long covid.
17 months.... am tired of this..
ArtemiC Rescue and Support helped make my Long dissapear after 9 days.
Its because they rolled up their sleeve.
when pHARMa rebranded ‘post viral syndrome’ ... nothing like creating & opening up ‘new markets’. ‘$CIENCE!’™️
Once again, thousands of words, but no comprehensive approach discussion… Please give us someone with a comprehensive approach instead of a bunch of complaining about how there is no comprehensive approach… Maybe we need artificial intelligence to help with this
Though this Comment focuses mainly on Endurance Athletes with Long COVID, it lists many Lifestyle Changes that ANYONE can do NOW to start your Recovery. These Lifestyle Changes can also help to PREVENT Long COVID.
Many endurance athletes have contracted Long COVID. I believe it has to do with Overtraining and a Type A Personality where you have an attitude of working through any weakness or illness with more training. Training is Good, but there can be TOO MUCH of a Good Thing.
Exercise breaks down your muscles, and it is a Stress on the Body. When your Body recovers over time, it rebuilds the muscles to be stronger. If you start training again before your Body can fully recover, you are creating a Chronic Stress that is deleterious to your Health. It depletes your Body of Essential Nutrients critical to proper Immune System function as well as downregulating the Immune System.
There may be some other Stressful Event, such as Loss of a Loved One, Loss of a Job, Loss of Financial Security, Divorce, a Traumatic Accident or Surgery, etc. All of this causes Chronic Stress, and Long COVID is the end stage result with a complete breakdown of the innate Immune System, triggered by an acute COVID-19 infection of an ALREADY Compromised Immune System.
It may allow other secondary infections of other viruses (such as Epstein-Barr Virus) to come out of remission. Over 90% of the world’s population has EBV in remission. An EBV infection has many of the same symptoms as Long COVID, so you can see the extent of the problem. Secondary infections from other bacteria, molds, protozoans, and parasites may appear with Long COVID. Autoimmune Diseases, Allergies, and Toxicities to Environmental Toxins can complicate the disease.
The First Step is you must Believe you can Heal, and set you intention to do so. You will do whatever it takes for as long as it takes to Recover. The next step is to reduce Stress. Since Exercise typically leads to a relapse, you will need to work on changing your Mindset. Eckhart Tolle’s “The Power of NOW” can offer such a reframe if you dwell on negative events that occurred in the Past or you believe can occur in the Future. It describes how he recovered from Chronic Depression and eliminated destructive cycles of negative thought by focusing on the Present. The Past is History and the Future is a Mystery. They cannot affect the Present. The only time you can Choose to make Changes to your Life is in the NOW.
You can also Choose to be Happy to reverse Chronic Stress. Studies show Happiness will boost the Immune System. Dr. Tal Ben-Shahar has a video on Positive Psychology: The Science of Happiness, where he lectures on how to increase Happiness and Gratitude in your Life.
Meditation is another important way to reduce Chronic Stress. There is a wealth of info online discussing how to meditate and providing Guided Meditations.
You will want to become a Student of Good Sleep Habits. Deep Sleep is the ONLY time the waste products of normal metabolism and Inflammation are removed from the Brain. You’ll want to learn how to PREPARE for a Good Night’s Sleep and maximize your Deep Sleep. WITHOUT PROPER SLEEP, nothing else you do for Recovery will be effective.
Breathwork is the most gentle way you can start to move back into Exercise. The Physiological Sigh is a Breathwork technique that can reduce Anxiety, slowing the Heart and slowing quick, shallow breathing. Dr. Andrew Huberman has some good videos on this technique. Wim Hoff also is well known for his Breathing Techniques.
You will want to become a student of Recovery after Exercise as you GRADUALLY Pace your way back to getting physically active. NO MORE OVERTRAINING. Overtraining PREVENTS you from achieving maximum performance besides causing Long COVID. When you Recover from it and Train CORRECTLY, you will set new Personal Records. 👍
You will want to become a Student of Proper Nutrition to know the most nutrient-dense foods to eat in a Low Carb, Low Inflammatory, Whole Foods Ketogenic Diet with Intermittent Fasting to manage Blood Insulin and Blood Glucose at lower, more optimal levels. In addition to Intermittent Fasting,, you’ll want to do occasional 3-5 day Prolonged Fasts to stimulate Autophagy and completely reset your Immune System. I suspect, but have no evidence, that Autophagy from Prolonged Fasting may help those who genetically have problems breaking down the Fibrin “sludge” in their Blood as well as the Inflammatory SARS-CoV-2 Spike Protein.
You will need to become a Student of Supplementation to know how to correct the deficiencies of essential vitamins, minerals, and antioxidants in order to Optimize your Immune System. Dr. Eric Berg offers a FREE Course on this very subject.
The pH of your stomach acid is CRITICAL for proper breakdown of food and absorption of essential nutrients. I think it’s Dangerous to attempt to INCREASE your Body’s pH by ingesting things, particularly Baking Soda. Too many people suffer from too alkaline stomach pH. If you follow proper Nutrition/Fasting/Supplementation, your Body will properly handle pH.
its called me/cfs... get it!