Thank you so much! And for all your advice - my son is back to school for 5 hours a day and is coping after 2.5 years of no school and severe ME / CFS from his Long Covid. He's on LDN, Rivoxaban and Ivabradine together with some supplements. He has some if his health and his teenage life back now.
Thank you so much for all you are doing campaigning for our children that are suffering. We are lucky to have our daughter under the care of the only LC paediatric specialist in the Uk - having been labelled with FND and left to live a disabled life and offered nothing but Psychiatry and GET by the NHS (including an NHS London LC clinic), thankfully we were able to seek help privately.
Various tests undertaken and medications for POTS symptoms / abnormal clotting / ME CFS / Small Fibre Neuropathy/ Dysautonomia have meant our daughter has got some life back and able to engage with a little education and socialising, which would not have been possible without the medication. Unfortunately IVIG is very difficult to get in the UK and with her disregulated immune system and small fibre neuropathy I feel this would move her another level on…. I’ve always believed she had PIMS when she was admitted to hospital and couldn’t move her legs at all (along with various other symptoms common with PIMS) and apparently IVIG is how it is treated in the Uk.. we were told that she had FND which I’ve never agreed with.. and she was told to breathe through the pain!! it was a label slapped on because they didn’t understand what was wrong with her.
Thankfully we saw a private paediatric neurologist who prescribed LDN which worked on different levels and helped the pain a little.
Anyway, 3 1/2yrs in to the illness and we can see some light at the end. It’s the debilitating fatigue that is still the challenge and the mobility issues.
Like others have noted it’s totally unethical to leave children suffering the way that many are.
We cannot thank the doctors enough who are actually doing something to help. Thank you so much.
Thanks for this great video Danillo. I think you present a thoughtful caring balanced viewpoint. As a General Psychiatrist, Neuropsychiatrist and Geriatric Psychiatrist with over 30 years of experience and a parent of a child severely impacted by Long COVID/CFS/ME I don't think that parents and children should be expected to wait 5 to 10 years for RCT evidence before treating moderate to severe LC. We don't yet know whether there is a critical therapeutic window to achieve the best outcomes. Waiting potentially risks permanent disability. IMPORTANT POINT: If a patient with LC/CFS presents with hopelessness, despair and suicidal thoughts they need to be assessed for Major Depression (MDE) and if present may benefit from an antidepressant. Acute COVID greatly increases the risk of later developing MDE which is biological disorder as well as a psychological disorder. Some infectious disease doctors are convinced that all children and teens with post viral fatigue states will eventually recover completely. But the lived experiences of patients with CFS tells us that not everyone recovers over time and some people become bed or house bound. I think that there is good evidence for the use of pacing in LC/CFS. My reading and your own research tells me that LC is likely the result of brain pathology as well wider immune dysfunction, GIT dysfunction as well as vascular and thrombo Inflammation. This holistic paradigm is also increasingly being recognised for other paediatric conditions such as the pervasive developmental disorders which up to now have been considered "untreatable" For instance recent evidence suggests that severe regressive autism is likely due to a combination of gene abnormalities, genes X environment (including infections) as well as brain, gut and immune pathology. I know we have to be careful NOT to conclude that just because a specific pathology is ASSOCIATED with LC/CFS that it is the CAUSE of LC/CFS. But the weight of the evidence I've read suggests that the causes of LC/CFS lie both inside and outside the brain. BTW Some paediatric neurologists are using IVIG and Azithromycin in Severe Regressive Autism/Childhood Disintegrative Disorder with improvements observed in kids hitherto
Awesome, Danilo, thank you. Anna's paediatrician told me that she's her sickest patient... That includes her patients living with cancer 😳 that was sobering to learn.
Please don't say there's no hope for recovery after many years 😭 We need that hope. Desperately. Anna has already admitted suicidal thoughts. It's impossible to bear 😔
hi, sorry I meant little hope of self recovery WITHOUT treatments, while with treatments some patients are already improving, new treatments will make things even better
Phew!! Thanks for clarifying!! You're doing incredible work and I know the community is exceptionally grateful for your interest and pushing everything forward. We keep going... One day we will all win 🙌🏼🏆👏🏼🎉
Thank you. This highlights the individualised approach we need weighing up symptoms, costs, benefits, side effects, mental health etc. I agree we have to trial different things based on the science and what we know so far- the morbidity is so bad. I find it better this way because Hope is a powerful thing.
An additional contribution teachers can provide is supporting the kids towards the medical professionals. As you correctly say, teachers know their students, probably better than anyone.
This is not a psychologic / psychiatric desease, which for most of the doctors remains the direction taken, by lack of knowledge due to lack of top-down informative communication and training. At least here in France. They can help in diagnosing.
Additionally, the national education (NE) medical professionals (who basically have for primary mission to ensure students attend classes, with or without specific arrangements) generate loads of complications for parents as they are not trained/informed either. And this is where complex situations for parents can be faced (some have), with extreme cases where parents are threatened to see their child sent to foster care. This lack of knowledge is unacceptable, especially when it drives decisions that are against the child and his/her family well-being.
Governments shall cascade informative support and cascade instructions, not only to the medical professionals (incl. the national education ones), but also down to schools at all levels of the NE organisation.
I enjoyed your review of the importance of directly dealing with LC with the emphasis on drugs available in the here and now, i.e. the off-label repurposed approach. Given the interest in ivabradine, the chronic heart failure therapeutic for repurposing, the issue of availability and cost becomes a major hurdle in our U.S. healthcare environment. Our system has strict formularies mandated by our over-abundance of health maintenance organizations (HMOs) as well as the Federal sponsored Medicare and Medicare Advantage programs, State controlled Medicaid (indigent) guidelines. Drugs like rapamycin (sirolimus) about which you previously discussed is another repurposed therapeutics with similar access and cost constraints. As I have described elsewhere and provided you a number of references, much depends on the aggressiveness of intent to do something and not simply wring our hands hoping that some unknown biologic mechanism or defining targets will be identified to direct the course of discovery. There are such mechanisms and targets but they have yet to be widely publicized in the clinical or translational medicine publications over the past 5 yrs of the mutating pandemic virus. The utility of a drug with 40+ years of clinical use and an established role for clinical use coupled with long-term safety is a superior candidate in my opinion. Our primary candidate throughout 5+ yrs of clinical experience and collaborative basic science research has identified the well-described sickle cell disease (SCD) drug hydroxyUREA. It is a drug utilized for infants as young as 9 mos of age and approved for a life-time of use. The many organ dysfunctions and basic cellular events seen in victims of SCD are also seen in advanced COVID19, principally tissue hypoxia and multisystem inflammation. Many drugs are indicated and approved for only 1 or 2 disorders, often closely interconnected, but that does not exclude other therapies and indications for a single drug. Basic science concepts and clinical experiences have a role in identifying those drug candidates well-before large trials can ever achieve funding, enrollments and data analysis. It’s unconscionable, if not unethical, to withhold therapies with significant potential based upon common beneficial biological effects by a drug/drugs well known and safe for other disorders. The SARS-Cov2 virus coupled with the host’s immune response appears to form the basis for progressive organ dysfunctions for advanced and recurrent COVID19 as well as delayed multisystems events seen with PASC/LC. Addressing the immune aspects, the chronic inflammation and then restoring the critical neurological dysfunctions appears to be a plausible approach. Repurposed drugs such as the immunosuppressant rapamycin, the immune modulator and neurotransmitter receptor agonist hydroxyUREA, then neuroreceptor restoration with a stable acetylcholine enzyme inhibitor such as rivastigmine have important credentials but have yet to be acceptable as an immediate and superior candidates for treating these life-devastating disorders for millions of post-acute COVID19 victims. MD U.S.A.
So true... And when some doctor say: it's psychologic and not just I don't now, it's so hard and harmfull. Very far from hyppocrate... Particulary for child...
Thank you so much! And for all your advice - my son is back to school for 5 hours a day and is coping after 2.5 years of no school and severe ME / CFS from his Long Covid. He's on LDN, Rivoxaban and Ivabradine together with some supplements. He has some if his health and his teenage life back now.
thank you so much, glad things are better! it is a pharmacological approach very similar to the one I use!
Thank you so much for all you are doing campaigning for our children that are suffering. We are lucky to have our daughter under the care of the only LC paediatric specialist in the Uk - having been labelled with FND and left to live a disabled life and offered nothing but Psychiatry and GET by the NHS (including an NHS London LC clinic), thankfully we were able to seek help privately.
Various tests undertaken and medications for POTS symptoms / abnormal clotting / ME CFS / Small Fibre Neuropathy/ Dysautonomia have meant our daughter has got some life back and able to engage with a little education and socialising, which would not have been possible without the medication. Unfortunately IVIG is very difficult to get in the UK and with her disregulated immune system and small fibre neuropathy I feel this would move her another level on…. I’ve always believed she had PIMS when she was admitted to hospital and couldn’t move her legs at all (along with various other symptoms common with PIMS) and apparently IVIG is how it is treated in the Uk.. we were told that she had FND which I’ve never agreed with.. and she was told to breathe through the pain!! it was a label slapped on because they didn’t understand what was wrong with her.
Thankfully we saw a private paediatric neurologist who prescribed LDN which worked on different levels and helped the pain a little.
Anyway, 3 1/2yrs in to the illness and we can see some light at the end. It’s the debilitating fatigue that is still the challenge and the mobility issues.
Like others have noted it’s totally unethical to leave children suffering the way that many are.
We cannot thank the doctors enough who are actually doing something to help. Thank you so much.
thank you so much for sharing your experience, this means a lot for us all, and happy things are getting slightly better for you with proper support
Thanks for this great video Danillo. I think you present a thoughtful caring balanced viewpoint. As a General Psychiatrist, Neuropsychiatrist and Geriatric Psychiatrist with over 30 years of experience and a parent of a child severely impacted by Long COVID/CFS/ME I don't think that parents and children should be expected to wait 5 to 10 years for RCT evidence before treating moderate to severe LC. We don't yet know whether there is a critical therapeutic window to achieve the best outcomes. Waiting potentially risks permanent disability. IMPORTANT POINT: If a patient with LC/CFS presents with hopelessness, despair and suicidal thoughts they need to be assessed for Major Depression (MDE) and if present may benefit from an antidepressant. Acute COVID greatly increases the risk of later developing MDE which is biological disorder as well as a psychological disorder. Some infectious disease doctors are convinced that all children and teens with post viral fatigue states will eventually recover completely. But the lived experiences of patients with CFS tells us that not everyone recovers over time and some people become bed or house bound. I think that there is good evidence for the use of pacing in LC/CFS. My reading and your own research tells me that LC is likely the result of brain pathology as well wider immune dysfunction, GIT dysfunction as well as vascular and thrombo Inflammation. This holistic paradigm is also increasingly being recognised for other paediatric conditions such as the pervasive developmental disorders which up to now have been considered "untreatable" For instance recent evidence suggests that severe regressive autism is likely due to a combination of gene abnormalities, genes X environment (including infections) as well as brain, gut and immune pathology. I know we have to be careful NOT to conclude that just because a specific pathology is ASSOCIATED with LC/CFS that it is the CAUSE of LC/CFS. But the weight of the evidence I've read suggests that the causes of LC/CFS lie both inside and outside the brain. BTW Some paediatric neurologists are using IVIG and Azithromycin in Severe Regressive Autism/Childhood Disintegrative Disorder with improvements observed in kids hitherto
considered untreatable.
thanks a lot Robert , I agree with any single word of your message, really. thanks so much!
Awesome, Danilo, thank you. Anna's paediatrician told me that she's her sickest patient... That includes her patients living with cancer 😳 that was sobering to learn.
Please don't say there's no hope for recovery after many years 😭 We need that hope. Desperately. Anna has already admitted suicidal thoughts. It's impossible to bear 😔
hi, sorry I meant little hope of self recovery WITHOUT treatments, while with treatments some patients are already improving, new treatments will make things even better
Phew!! Thanks for clarifying!! You're doing incredible work and I know the community is exceptionally grateful for your interest and pushing everything forward. We keep going... One day we will all win 🙌🏼🏆👏🏼🎉
Thank you. This highlights the individualised approach we need weighing up symptoms, costs, benefits, side effects, mental health etc. I agree we have to trial different things based on the science and what we know so far- the morbidity is so bad. I find it better this way because Hope is a powerful thing.
Hi Danilo. Thank you so much for what you are doing for our children. It really matters.
thanks a lot, your positive feedbacks are very important to me
You are absolutely correct Danilo Buonsenso
An additional contribution teachers can provide is supporting the kids towards the medical professionals. As you correctly say, teachers know their students, probably better than anyone.
This is not a psychologic / psychiatric desease, which for most of the doctors remains the direction taken, by lack of knowledge due to lack of top-down informative communication and training. At least here in France. They can help in diagnosing.
Additionally, the national education (NE) medical professionals (who basically have for primary mission to ensure students attend classes, with or without specific arrangements) generate loads of complications for parents as they are not trained/informed either. And this is where complex situations for parents can be faced (some have), with extreme cases where parents are threatened to see their child sent to foster care. This lack of knowledge is unacceptable, especially when it drives decisions that are against the child and his/her family well-being.
Governments shall cascade informative support and cascade instructions, not only to the medical professionals (incl. the national education ones), but also down to schools at all levels of the NE organisation.
agree, that is why I am trying to generate also tese more public friendly contents. please share with all those you think may need it
Done already! 😉
Vorrei seguirlo in italiano
mi piacerebbe ma non riesco a farlo in entrambe le lingue
ah signora grazie mille è troppo gentile
I enjoyed your review of the importance of directly dealing with LC with the emphasis on drugs available in the here and now, i.e. the off-label repurposed approach. Given the interest in ivabradine, the chronic heart failure therapeutic for repurposing, the issue of availability and cost becomes a major hurdle in our U.S. healthcare environment. Our system has strict formularies mandated by our over-abundance of health maintenance organizations (HMOs) as well as the Federal sponsored Medicare and Medicare Advantage programs, State controlled Medicaid (indigent) guidelines. Drugs like rapamycin (sirolimus) about which you previously discussed is another repurposed therapeutics with similar access and cost constraints. As I have described elsewhere and provided you a number of references, much depends on the aggressiveness of intent to do something and not simply wring our hands hoping that some unknown biologic mechanism or defining targets will be identified to direct the course of discovery. There are such mechanisms and targets but they have yet to be widely publicized in the clinical or translational medicine publications over the past 5 yrs of the mutating pandemic virus. The utility of a drug with 40+ years of clinical use and an established role for clinical use coupled with long-term safety is a superior candidate in my opinion. Our primary candidate throughout 5+ yrs of clinical experience and collaborative basic science research has identified the well-described sickle cell disease (SCD) drug hydroxyUREA. It is a drug utilized for infants as young as 9 mos of age and approved for a life-time of use. The many organ dysfunctions and basic cellular events seen in victims of SCD are also seen in advanced COVID19, principally tissue hypoxia and multisystem inflammation. Many drugs are indicated and approved for only 1 or 2 disorders, often closely interconnected, but that does not exclude other therapies and indications for a single drug. Basic science concepts and clinical experiences have a role in identifying those drug candidates well-before large trials can ever achieve funding, enrollments and data analysis. It’s unconscionable, if not unethical, to withhold therapies with significant potential based upon common beneficial biological effects by a drug/drugs well known and safe for other disorders. The SARS-Cov2 virus coupled with the host’s immune response appears to form the basis for progressive organ dysfunctions for advanced and recurrent COVID19 as well as delayed multisystems events seen with PASC/LC. Addressing the immune aspects, the chronic inflammation and then restoring the critical neurological dysfunctions appears to be a plausible approach. Repurposed drugs such as the immunosuppressant rapamycin, the immune modulator and neurotransmitter receptor agonist hydroxyUREA, then neuroreceptor restoration with a stable acetylcholine enzyme inhibitor such as rivastigmine have important credentials but have yet to be acceptable as an immediate and superior candidates for treating these life-devastating disorders for millions of post-acute COVID19 victims. MD U.S.A.
thanks a lot, ageee with you, that is a great option, we have a planned post on it ;)
So true... And when some doctor say: it's psychologic and not just I don't now, it's so hard and harmfull. Very far from hyppocrate... Particulary for child...
È possibile vedere e sentire in italiano ? Grazie
Sono la nonna materna di Kenya di Livorno con lei ho rivisto il sole nella mia vita