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David M Tuller
Registrace 13. 03. 2015
Interview with Oonagh Cousins
Oonagh Cousins, who once dreamed of representing Great Britain as a rower in the Olympics, got sick early in the pandemic and has been suffering from Long Covid ever since. Her story was first covered by the BBC in November, 2020. Earlier this year, a BBC investigation of the woo-woo intervention called the Lightning Process also featured Cousins. She had tried it and believed it was “exploiting people,” she told the reporters.
I wanted to hear a bit more about Cousins’ experiences as well as what she’s up to now. We spoke earlier this week.
I wanted to hear a bit more about Cousins’ experiences as well as what she’s up to now. We spoke earlier this week.
zhlédnutí: 977
Video
Betsy Ladyzhets discusses NIH's RECOVER Initiative
zhlédnutí 285Před 2 měsíci
Investigative journalist Betsy Ladyzhets, co-founder and co-editor of The Sick Times, has been covering RECOVER, the $1.15 billion Long Covid initiative from the US National Institutes of Health. Ladyzhets recently wrote a new article about RECOVER, published in The Sick Times as well as Mother Jones, based on documents she received from NIH through the Freedom of Information Act. We spoke the ...
Betsy Ladyzhets and Miles Griffis of The Sick Times
zhlédnutí 191Před 3 měsíci
Journalists Betsy Ladyzhets and Miles Griffis are the co-founders of The Sick Times, a non-profit that covers Long Covid and other chronic infection-related illnesses. They launched the site last November and have built up a solid following for their reporting, updates, and weekly newsletter. They recently received a $250,000 grant that will allow them to expand their operations. We spoke earli...
Interview with Marco Wetzel
zhlédnutí 457Před 3 měsíci
*This is a crowdfunding month for Trial By Error. Donations (tax-deductible to US tax-payers) go to the University of Calinfornia, Berkeley, to support the project. The link to the crowdfunding campaign is here: crowdfund.berkeley.edu/project/42302 Marco Wetzel, a digital sales expert, is one of five German Long Covid patients who banded together earlier this year with an ambitious plan to prod...
Interview with Guardian columnist George Monbiot on the mistreatment of ME/CFS patients
zhlédnutí 9KPřed 4 měsíci
*This is a crowdfunding month for Trial By Error. Donations (tax-deductible to US tax-payers) go to the University of Calinfornia, Berkeley, to support the project. The link to the crowdfunding campaign is here: crowdfund.berkeley.edu/project/42302 Earlier today I spoke with George Monbiot, a British investigative reporter and political activist who has been a columnist for The Guardian for alm...
Interview with the authors of the European ME Alliance survey report.
zhlédnutí 842Před 4 měsíci
Earlier this month, the European Myalgic Encephalomyelitis Alliance (EMEA) released a 235-page report on a survey of ME/CFS patients in Europe titled “Same disease, different approaches and experiences.” The authors are Arild Angelsen, a board member of the Norwegian ME Association and a professor at the School of Economics and Business at Norwegian University of Life Sciences, and Trude Schei,...
David Putrino on Australian debate about "Long Covid" and on new research on LC sex differences.
zhlédnutí 1,6KPřed 5 měsíci
Last week, just in time for Long Covid Awareness Day on Friday, the chief health officer of the Australian state of Queensland, John Gerrard, declared that the term “Long Covid” should be dropped. He based his argument on Queensland survey data suggesting that rates of prolonged disability after Covid-19 are similar to those after other respiratory illnesses. The research, to be presented next ...
Adam Lowe Explains the NICE Response to Uninformed "Eight Anomalies" Critique of ME/CFS Guidelines
zhlédnutí 689Před 6 měsíci
Adam Lowe was a patient representative on the 21-member committee that developed the 2021 ME/CFS clinical guidelines from the UK's National Institute for Health and Care Excellence. These guidelines rescinded the recommendations for graded exercise therapy and cognitive behavior therapy as curative treatments, which had been promulgated in previous guidelines published in 2007. In response, 50 ...
Interview with Michael VanElzakker about the new NIH study.
zhlédnutí 1,5KPřed 6 měsíci
Michael VanElzakker is a neuroscientist at Massachusetts General Hospital with a long-standing interest in ME/CFS and its neurological manifestations. I spoke with him recently about the just-published study from the US National Institutes of Health: "Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome.” The study, which involved extensive testing of 17 ME/CFS...
Interview with Dr Rob Wust
zhlédnutí 2,5KPřed 7 měsíci
In early January, Nature Communications published a Dutch study called “Muscle abnormalities worsen after post-exertional malaise in long COVID.” The study caused a buzz among patients, clinicians, and other researchers and generated extensive news coverage. Called. (I wrote a blog post about it here.) The investigators identified significant biological differences after an exercise challenge b...
Betsy Ladyzhets discusses last week's Senate hearing on Long Covid
zhlédnutí 298Před 7 měsíci
Last Thursday (January 18th), the Senate Committee on Health, Education, Labor, & Pensions held a hearing called “Addressing Long COVID: Advancing Research and Improving Patient Care.” The bipartisan panel included senators who are also physicians and as well as Democrat Tim Kaine of Virginia, who has been open about his own struggles with prolonged symptoms after an acute bout of Covid-19. Wit...
Interview with journalist Ed Yong
zhlédnutí 1,6KPřed 8 měsíci
In the early months of the coronavirus pandemic, journalist Ed Yong played a key role in alerting the public to the wave of people suffering prolonged symptoms after an acute bout of COVID-19-a phenomenon that has come to be called long Covid. Yong, who won a Pulitzer Prize for his coronavirus coverage in The Atlantic, first wrote about long Covid in June, 2020, ultimately writing a total of ei...
Betsy Ladyzhets on U.S. funding for long Covid clinics
zhlédnutí 121Před 8 měsíci
Investigative journalist Betsy Ladyzhets is a co-founder of The Sick Times, a new online publication covering long Covid and related disorders. Last week, she wrote about a new grant program for long Covid clinics from the U.S. Agency for Healthcare Research and Quality (AHRQ), a part of the Department of Health and Human Services. Here’s the top of the story: “This fall, the federal government...
Conversation with #MEAction's Jaime Seltzer about last week's NIH gathering
zhlédnutí 782Před 8 měsíci
Last Tuesday and Wednesday (December 12th and 13th), the US National Institutes of Health and, specifically, the National Institute of Allergy and Infectious Diseases held a two-day meeting called "Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID." In 2019, I'd physically attended a similar NIH gathering in person; this time, I caught many of the pres...
Conversation with Sarah Boothby (audio only)
zhlédnutí 701Před 9 měsíci
Sarah Boothby discusses her reaction to the pre-inquest hearing held on November 27th in Devon, England, in the case of the death of her daughter Maeve from ME-related complications.
The launch of The Sick Times, a. new online publication
zhlédnutí 267Před 9 měsíci
The launch of The Sick Times, a. new online publication
A conversation with Lisa McCorkell, co-founder of the Patient-Led Research Ciollaborative.
zhlédnutí 387Před 10 měsíci
A conversation with Lisa McCorkell, co-founder of the Patient-Led Research Ciollaborative.
David Putrino on the findings from the new Nature study of long Covid immune profiling
zhlédnutí 6KPřed 11 měsíci
David Putrino on the findings from the new Nature study of long Covid immune profiling
A Physiotherapist's Guide to Understand and Managing ME/CFS
zhlédnutí 701Před 11 měsíci
A Physiotherapist's Guide to Understand and Managing ME/CFS
Interview with investigative reporter Betsy Ladyzhets about NIH's long Covid efforts
zhlédnutí 470Před 11 měsíci
Interview with investigative reporter Betsy Ladyzhets about NIH's long Covid efforts
interview about DecodeME with Professor Chris Ponting
zhlédnutí 837Před rokem
interview about DecodeME with Professor Chris Ponting
Dr Binita Kane on Long Covid in Children
zhlédnutí 1,1KPřed rokem
Dr Binita Kane on Long Covid in Children
David Putrino: Long Covid and Functional Neurological Disorder
zhlédnutí 13KPřed rokem
David Putrino: Long Covid and Functional Neurological Disorder
An Interview with #MEAction's Jaime Seltzer
zhlédnutí 453Před rokem
An Interview with #MEAction's Jaime Seltzer
Adam Lowe on criticism of the 2021 ME/CFS guidelines from NICE
zhlédnutí 869Před rokem
Adam Lowe on criticism of the 2021 ME/CFS guidelines from NICE
A discussion of The Long Covid Survival Guide and related issues
zhlédnutí 394Před rokem
A discussion of The Long Covid Survival Guide and related issues
I have terrible head dizziness head ptoblems sleep issues depression back pain anxiety all since or few months after the boosters never got that sick from once only covid
It's a condition that hits all levels of human existence. It's torture on every level. And indeed, people and 'professionals' are cruel AF (pardon my French). I think if there would be a law they could put us down Like a dog, they would.
What a fabulous interview. Thank you for this. As someone with MECFS it is great to have someone on our side.
I get frustrated at some of the black-and-white conversation around FND, functional symptoms, long-covid and ME/CFS. As David Pointed out, FND is no longer widely thought to be caused only by psychogenic triggers. MS, PD, and epilepsy can cause FND by directly affecting, for example, the HPA axis as well as other possible systems. For example, FND is now also being studied from a perspective of inflammation and immune system involvement in the CNS. Even Charcot knew that there was a direct link between MS and FND and considered it more complex than just a psychogenic disorder. In people with orthostatic intolerance functional symptoms occur as a direct result of sympathetic nervous system activation due to cerebral hypoperfusion. I, myself, have hyperadrenergic dysautonomia which causes a combination of overheating, dilated pupils, orthostatic hypertension, and severe anxiety. These are all functional symptoms (but not FND) and the cause is venous pooling, not psychological. Interestingly, I have had dysautonomia my whole life and it was the precurser to developing ME/CFS later in childhood. Dysautonomia and FND are also directly linked to each other. However, when viewing dysautonomia and FND from a complex systems perspective there is no single, linear pattern of causation. In other words dysautonomia can cause FND and FND can cause dysautonomia. This is one explanation as to why there is an overlap between people with co-morbid diagnoses of ME/CFS and FND. FND and post-exertional malaise can be differentiated from one another even when co-occurring in the same patient and should not be confused as the same disorder. Dysautonomia is now thought to be the driving force of post-exertional malaise in ME/CFS. So although it is possible that FND can be a cause of ME/CFS (due to it also being a cause of dysautonomia) it is important to point out that FND is a rare disorder measured per 100000 people in the population whereas dysautonomia and ME/CFS are common and measured per 100 people in the population. Therefore FND is not a good fit as a cause for long COVID or ME/CFS in the majority of patients and when FND and ME/CFS exist as co-morbid diagnoses there is a high likelihood that a dysautonomic disorder is the primary trigger of both in the individual.
Thank you David and Sarah. My prayers are with you. 🌷🙏❤️
Thank you deeply to Sarah for this discussion and to David for hosting this
I've had ME/CFS for ~15 years (so first of all thanks for your work on this), and I've been on-and-off following George Monbiot's work for many years. I've been aware of the RCP lot, particularly their climate change denial output, for a long time - probably in large part thanks to George's reporting about them. But I had no idea that Sir Doctor Sir Wessely was involved with that bunch. That's pretty mind-blowing, but I guess it all fits together very neatly.
so many heath problems can be solved by determination and the sheer will to go ALL non gmo, all carnivore. no fast foods, seed oils, grains. most of my family and friends would rather die than give up eating out, where most of the food poisons exist. I struggle too with not going to restaurants.
Thank you for this. Please don't forget that mental health isn't just psychology- inflammation and infection etc can directly cause mental health problems due to physiological impacts on the brain and body (see pans pandas for instance). Other topics/conditions similarly affected, it seems, by blinkers and manipulation: ehlers danlos, MCAS, MCS, Fibromyalgia, Pans Pandas, FND, SSRI and other medication side effects and withdrawal.. Oh and Fii.
Thank you for David for your constant advocacy. I am housebound two years with diagnosed post-covid ME-CFS and FND. Both conditions are extremely disheartening in terms of lack of treatment and support. Your research gives such hope, thank you
I know this video is a year old now, has there been any progress on this? There's no treatment in the UK and I've been ill for 2 years now.
What do you make of the new videos coming out about life coaches curing CF? I'm always suspicious when they're selling their "cures".
To be honest I used to think CF was psychological until I got long covid. Now I've completely changed my perspective, I can confirm, this is very real and debilitating. I did get better after 1.5 years of long covid but had another infection in March, now I'm worse. I was very active, I'm desperate to go hiking again, all my hobbies are outdoor activities. We need help not judgement.
That was my experience, I had a very mild case of covid before I had long covid. I had just completed an ultra marathon a few months before getting ill. I was training to be a mountain leader, I was so active. I did get better after 1.5 years but I've just had a viral infection in March and I'm now worse. The daily migraines/vertigo are very demotivating. I keep trying to do things, then I just get hit with vertigo, nausea etc I have autism and adhd, I am a very hyperactive person, so staying still is extremely conflicting, all I want to do is get things done but when I try I end up getting really ill. I wake up every morning with what feels like a hangover, I want my life back and I'm positive all long covid/ CF patients just want the same thing.
I would wonder what these quacks would say in the time of the black plague .. oh wait, they WERE there
Well, that backfired for LP ☺ She makes some excellent points.
That was really interesting, such a good interview 👍 I have a neighbour who mentioned they have a friend with ME who benefited from the LP, so I was initially sceptical yet curious about it. I am no longer curious! Having heard Oonagh’s BBC broadcast article, it was very useful to have her perspective around the LP more broadly (great interview questions, David!). What chimed with me was Oonagh talking about her mental health with Long Covid, I’m very much in the same boat, fortunately I’m in much the same place mentally now as I was pre-LC. I found counselling useful to help with my grieving and acceptance process. It’s not my mental health or attitude preventing me from living the active life that I want - it’s PEM! Oonagh, I hope your health continues to improve and thank you both for your continued LC & ME/CFS advocacy 🙌
Wonderful Oonagh-well said. I am one of the many athletes, though not at your level, who have been sick since early 2020. And I have to say this is one of the only occasions in history when being on a sporting health programme has not been entirely useful, in that the patients who had no support at all clubbed together, did a lot of citizen science (via outlets like Gez Medinger’s video channel) and figured out many of the issues ahead of the doctors. From the summer of 2020, a huge influx of patients with pre-existing chronic conditions such as MECFS and chronic Lyme warned us vociferously and repeatedly about the dangers of programmes such as the LP and supported us through the ‘Prof Paul Garner incident’ (covered massively in the media-a doc of tropical medicine who initially vocalised how terrible LC and PEM were, but then did an abrupt about turn and said he was cured by the LP, or something similar. He was also later linked to harmful treatments for MECFS such as graded exercise therapy). Maybe the media in the UK is partly to blame by keeping these threads alive-I noticed last week that the Guardian had printed a letter by the Prof discrediting the ‘team clots’ work since 2021 and the doctors and scientists experimenting to try and improve QOL (not cure) patients by addressing inflammation and amyloid particles. It seems a bit ‘tit for tat’ but the media sometimes stokes the flames. Thanks to Oonagh for getting involved in the research. If people don’t experiment and be brave about pushing forward, we’ll not get to the situation with HIV where multiple drugs and the prep medication make life liveable for a whole bunch of people.
Going on 'Dr Xand's Con or Cure' will really get the word out - what a coup!
Lightning process doesn’t work for most people and is pretty ridiculous. I rather get to the root issue: trauma and emotional experiences from childhood.
I also got Covid in March 2020 and as I was not getting better and contacted my doctor who said it was my anxiety that was causing my symptoms! I absolutely knew that wasn’t true.
Great to see the women behind this book. Thank you 😊and thanks Dave for another brilliant interview 💙🫶🏽
Thank you for talking about the harms of Lightning Process!
This is one of your best interviews, David! Thanks to both of you for the excellent conversation.
How long ago did covid come about???
They did the same thing when CFS first came out it was all psych. But they never explained how these patients could of coordinated having the same presentation of symptoms vs. a classic syndrome of symptoms!!! They have all broken their oath!! They (hospitals) have no talks to patients about possible diagnosis or treatments they simply treat presenting symptoms of know diseases prior to cov. Its a disgrace that no treatment leads to death n they promote their practices!! Shame on them ! Every one of them should loose their licenses n let those who seek to discover or help these patients dominate the treatment of such.
Thank you!
Classic C19 vax side effect. Monbiot doesn't believe in those of course.
Thanks for doing this video. Betsy’s excellent article is very concerning, especially the key point that RECOVER failed to define Long Covid. (For anyone interested, the article is “‘They bungled it:’ NIH documents reveal how $1.6 billion Long Covid initiative has failed so far to meet its goals”) On a more positive note, on June 11 the National Academies of Sciences, Engineering, and Medicine (NASEM) announced a new consensus definition of Long Covid. The definition is available from NASEM’s press release, “Federal Government, Clinicians, Employers, and Others Should Adopt New Definition for Long COVID to Aid in Consistent Diagnosis, Documentation, and Treatment.” NASEM also recently published a 264-page report, “Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection (2024).” A pre-publication PDF is available to download for free. The Bateman-Horne Center sent out an email welcoming NASEM’s case definition and report, urging patients to share these resources with our health care providers. Maybe you could do a video on NASEM’s work?
Would they act any differently if they wanted to stall progress?
Thank you!
So this video popped up after listening to dozens of MS/CFS/Long Covid recovery stories. For the first time I have hope of recovering instead of a life sentence. The interesting thing is that it appears to actually be a brain thing but not in the sense your bogus scientists have concluded. Many of the recovered are now coaching others to recovery. I have already implemented some of the practices and starting to see results. Look up Brain Rewiring, Jason McTeirnan, Raelan Agle, Dan Bigilo. It is all based on real science. Read Dr John Sarno's book "The Mind Body Prescription". (Which I believe deals with chronic pain but the same principles apply to chronic illnesses. I don't know why mainstream medicine doesn't promote this as it has a pretty high cure rate.
I cannot adequately express the depths of my appreciation for both of you. Thank you.
I didnt think a person could get as sick as i did. This has to be one of the worst diseases know to mankind... HORRIFIC...is what mine is.i hung on for dear life...still am
I honestly believe childhood vaccines caused my me/cfs. Mercury in vaccines REALLY!!! then when mercury got mentioned years ago, "they" said that ethyl mercury was harmless...BULL FUCKIN SHIT...all mercury is highly toxic
Lets get on with the law suits!!!!
The first doctor i ever seen when i was starting to get sick decades ago....he was a war vet...he had an airplane propeller above his fancy desk.every time i went to him he would ramble on about all his war experiences...so full of himself,all the while i was very ill. SICKENING. it actually just kept getting worse from that dr. On. I was sooo nieve. Then, i continued to be gaslit for decades.i kept going to different drs. Because i just thought sooner or later someone would find out whats wrong with me...they never did...i kept being told i just needed to "shape up"..."put one foot in front of the other"..."youre just sad"....then most of these "professionals" had signs on their desk saying..."verbal abuse will not be tollerated" so i would leave these offices and take my anger out elsewhere.imagine being gaslit for 35 years!!!! Thats my story in very very short form. I could/should make a movie or write a book but im too sick
I knew this was a scandal from the getgo. Ive been ill for decades and lyed to and gaslit for just as long.throw them in jail!! I honestly bellieve they lied to me and dragged on my diognosis because we all know now that if not caught within 5 years, it seems it irreversable....i honestly think they know this
Thank you
so what did the vaxx do then??????????//
THANK YOU GEORGE MONBIOT and David M.TULLER for speaking out on behalf of sufferers of M.E. and Long Covid being gaslit by the so called Experts in the Medical and associated professions.Who exactly is lying and who is helping who? Following the money? Leave 'em sick and keep 'em ignorant? The level of injustice ,especially ,to young children is SHAMEFUL.Shame on every single denier of M.E. and Long Covid.The Medical profession are hurting not helping and refusing to educate themselves.There is where the injustice lies.Thank you for this uplifting talk.
Dr Wust, please look into Dr Les Simpson’s work on the role that haemorheology plays in ME. The predominance of non-deformable erythrocytes in the blood of ME patients who are experiencing fatigue is worth investigating. A full account of his work is given in the book that I helped him produce, “Ramsay's Disease - Myalgic Encephalomyelitis (ME) and the Unfortunate Creation of 'CFS'”. A briefer account of his work was given in an article he kindly wrote for Positive Health Online, “The Importance of Blood Flow and Evening Primrose Oil in ME” I think his work may provide an important piece in the jigsaw of ME and Long Covid.
Thank you, George Monbiot, for helping the truth to be told about the hideous, frightening, and exhausting disease known as ME. I have lived with it since 1977 and can't say enough bad things about the expert psychopaths who push the bio-psycho-social model of patient abuse. I don't wish this disease on anyone, but for them I will make an exception.
Well one Dr who was a a hole to myself ended up getting it after another illness carma
I've heard them referred to as Psychosocialists. I think the name is fitting.
Thank you both so much, for having this discusson. Having suffered M.E.(CFS was a term introduced by the phychological side) for 32 years now, it was very refreshing to hear your views.
27 years for myself pain worst symptom now do you have hypomobility heds genes for it
@@Truerealism747 Post exertional malaise is my worst symtom. No I don't have hypomobility.
I'm male, interestingly after 34 years ME and 8 years of severe ME (after a flu shot permanently worsened me) the last 2 or 3 years I started deteriorating further. So I had my testosterone levels tested. My 'free % testosterone' was just below the normal zone. Other measurable levels were normal. So I went on the TRT skin patches, and the deterioration stopped!!! Plus I had a slight improvement, not a big difference. But not deteriorating further has been fantastic because I was mostly bedridden, and heading fast towards being 'very severe;'. I could feel that tipping point of when just being alive was getting too close to constantly triggering PEM. Thats the most dangerous stage of ME/CFS. So I was getting close to having to ask for home care. People that bad including myself contemplate ending it. But I have always had hope, so held on to hope. Another thing I noticed after 4 weeks on the TRT patches my mood improved. And with testosterone you want to do more, so have to be very disciplined in pacing, because I am still severe, but thank goodness not worsening anymore! I still have hope of a cure. Anyway best get your levels checked. Also there's a great article in Medscape, showing the cardiovascular risk is not high with TRT like once thought.
Really impressed by how quickly this got put together. Best of luck.
David thank you so much for all these videos. It's great how we're all coming together to help ourselves and it is giving me hope!
Thank you so much Dr Wust, this is amazing! It almost looks like some kind of mitrochondrial myopathy! Very interesting!
I have to carefully monitor my mental health. I have had moderate to severe ME for more than 10 years now. Every time there looks to be hope for us, the CBT mob and their cheerleader Simon Wessely mount an attack on my lived reality. It should have been unbelievable that they took NICE to court over changing the guidance on ME to reflect reality but they defended their flawed model to that extent. The courts upheld NICE, however it's only "guidance" and many clinicians in the UK either insist on forcing Graded Exercise Therapy on patients, going to the extent in at least one case, of abusing the Mental Health Act to do this or they deny the diagnosis so they can maintain their cruel mistreatment of patients. I have been fortunate in that the limited specialist input that I had consisted of a few meetings in which the importance of exercising was always stressed but not enforced. I was then discharged for "failure to recover! I wish George Monbiot good fortune in taking on this cabal. It could literally mean life and death for some people
Great effort with this. Really impressive to pull it together so organically from the patient community like this. Good luck with the conference 💙 United to fight this is an inspiring message, we are a pretty motivated bunch of sick people, us folks with post viral conditions!