This should be compulsory viewing for EVERYONE, but particularly all Members of Parliament...

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.

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 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.

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.

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!)

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.

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 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.

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!

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.

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.

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.

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?

Rae I burst in to tears, you really care for your patients

Thank you very much Dr Rae for clearly stating what's going on in a trutful manner.

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.

Yes we need to train post Covid specialist!

Great info BUT often confused with long civic from the infection or that from the jab. We need to tease this apart much more.

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

Thank you Dr’s for your hard work and compassion! Dr. Duncan thank you for your deep compassion!

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.

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

Even though you are in the UK you are advocating for me in the USA and for that I say thank you!

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

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.

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.

Me and my family luckily haven't had issues. Partly it helps that we all had the vaccines. I like to follow what is happening with viruses of all types. Pots really is disconcerting. I'm sure there's a range but obviously many people who are debilitated completely from it. I hope everyone finds treatment to cope and live more productive lives.

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.

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

@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.

I’ve got exactly all of this and diagnosed with POTS in early January this year by a cardiologist

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).

Im 18 months in....still waiting for results and tests....still debilitated. Ineed cognitive rehab as well as physical....I AM STUCK

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"!!

What about the cost to the patient????? These specialists charged a fortune.

Dr. Dalton thank you for studying this disease in research!

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?

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.......

44:00 this hit me

Karen Kingston, DR.ANA MIHALCEA.

Have you tried the ArtemiC Rescue and ArtemiC Support Combo? They are specifically for Covid and Longcovid.

Did we know at what tissue temperature did SARS COV2 better replicate ? Did SARS COV2 induce persistent infections ?

had a microclot now being sorted tomorrow, i worry about micro clots elsewhere....

I have been very blessed to NEVER get Covid because I don’t be exposed by too many people on a daily basis 🙏🏽

ArtemiC Rescue and Support helped make my Long dissapear after 9 days.

17 months.... am tired of this..

when pHARMa rebranded ‘post viral syndrome’ ... nothing like creating & opening up ‘new markets’. ‘$CIENCE!’™️

Stop rolling up your sleeves.

Its because they rolled up their sleeve.

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!