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The idea of exercising as a way to overcome ME sounds insane to me, it's completely illogical. Exercise causes inflammation, which can only be remedied through restful sleep. If sleep isn't restful, then that additional inflammation is going to worsen people's overall condition. This is basic knowledge that every health expert should possess.

I'm not gonna lie this rat looks pretty sexy.

in 2024 trying to judge medical procedures 50-80 years ago and calling it criminal. want to judge also the use of bleedings? maybe the use of leeches? defending a lobotomy now, knowing what we know, that would be criminal. doing it back then, was just how medicine was. history revisionism using modern standards is stupid.

🌜🖤🌛

At this point in time, if anything is published in the Lancet, I basically know it's hogwash. Thanks for your work!

Tuskegee experiments are certainly much worse

There are lots of examples of junk- and heavily biased science getting published, and you can of course go back and criticize the authors, but what about the journals who publish the articles? The Lancet is a prestigious journal. They would probably put a handful of reviewers on an article such as this, and I refuse to believe all those reviewers are stupid or lazy. Yet it still went through.

On objective measurements: the graded exercise program had a 20% improvement. Yes that is not a "cure" the way exercise actually objectively cures 3/4 of POTS "objectively" on tilt table but I'd say that's clinically significant. That's like saying 300 pound woman at 5'2" losing 60 pounds is not good because she's still morbidly obese... Another issue is that, unless "ME" patients are magically different from all other chronic pain patients, of course they're going to have psychological barriers to achieving their maximum potential regardless of underlying etiology. It's why we have exercise psychologists. e.g. when I injured by knee and it took years to get full function just because I was so afraid of re-injury, though the actual damaged tissue had adequately healed in months. Therefore even the 6 minute walk was not colloquially objective even if considered clinically objective. It's sad this study had so many issues, but another question is : what is your alternative? Leave them in bed 20 hours a day and wait for them to die of bed sores, depression, and diabetes? Another issue is that with the diagnostic criteria for ME, there are CLEARLY multiple etiologies, some of which would clearly benefit (if not lead to full recovery) from these attempted therapies. With no "objective" measure like a blood test to sort the etiologies, attempts like the ones in the studies (NONE of which showed regression, I'll point out), clearly the risk/benefit shows we should attempt in all cases, especially when disability payments are on the line (disability is like chemotherapy, there are side effects so it should darn well only applied to people who it wont hurt more than it will help).

still used in Australia, the grifters are still in charge of the management of this illness here.

I honestly despise how CBT is touted as a cure-all... moreover the RCT methodology is so expensive and used for such superfluous purposes. We need to consider more thoughtful causal methods instead of throwing millions in RCTs that have middling results at best.

if I was in a control group reading a newsletter about how everyone else was feeling fantastic, I would 100% start doubting how i felt and probably score lower as a result

Name names.

Thanks for covering this. In Australia, the clinical guidelines still recommend CBT+GET and reference the PACE Trial. The research has moved on, but the medical establishment hasn’t.

Wow! The Lancet needs to make a move on retracting this clearly flawed study. It's scary to think, as a disabled person, how many other unethical "studies" are completed every year! Thanks for this vital information!

Wow a fake attention seeking sickness that mostly affects women.. who would have guessed??

As for the newsletter i think its ok. Because if the thesis is that it is a psychological deficiency, the newsletter is part of the "treatment" research.

Well as it goes, "ethical issues" is not the same as "fabricated evidence". The later is fraud. The first has a long history of being tightly tied to medical progress. I mean, yeah, this field is ugly (historically speaking). Not to says there were no fabricated evidence here, but well. A lot of french people suspected big collusion between some big pharmaceutical manufacturer and (corrupted) government officials. So for these people Raoult was seen as a free doctor, that just wanted to get the work done, despite the pressure from influential foreign players trying to get their hand on the juicy market of Covid.

Thank you for making this video. COVID 19 gave me ME/CFS. The doctors told me to exercise and I complied. As a result I am now severely disabled and have been so for more than a year. All thanks to the PACE trial and the people who keep perpetuating its false claims.

I get the feeling that people stopped doing peer review when other people started "deleting" the reviewers.

There are free healing modalities for me/cfs and LC that work. All these trials are a waste of money and time. Go the holistic way, solve repressed emotions and trauma and you will heal. Better than waiting all your life for a magic pill that will never come.

Fuck! Anyone in jail? I bet not ... Btw it sounds very similar to long covid, so it could be resulting from some type of virus infection? Greetings from Germany 👋🏼

The Lancet ... again. why is this still considered as a valid per-rewiewed journal ?

I have not read the paper, but the normal distribution is often applied to frequencies of scores, so that would mean that the data would show a bell curve with the scores on the X-axis and the frequency of each score on the Y-axis, not the age on the X axis and scores on the Y-axis. Aside from that, sentences like "anyone familiar with statistics would know..." Are quite derogatory and, I think, quite unprofessional. I do 100% believe that this study is flawed, and that this video is a great means of education for more people.

A big problem with this trial seems to be that they did not follow a prespecified analysis plan (SAP) and instead did pvalue hacking, ie manipulating analyses to try to find something that supported their narrative. This is a common problem and why the FDA requires analysis plans to be filed with the protocol before data is examined. Clinical trial registries also require at least a cursory description of the intended analyses. Journals should require a priory analyses plans and full data sets should be made available for scrutiny. Lancet is one of the highest ranking medical journals and should be ashamed for publishing something like this.

There is always the option that the peer reviewers read the paper, realised their free labour is the only this isn’t published, and chose to approve it as a warning for the scientific community. The lesson to learn is the exact same.

Bro she look like Keffals

What is the threshold for fraud these days?

They had no objective clinical tests? Seems they wanted to prove it was all perception and did everything to get the result.

I have lupus and ME. The "fully recovered from ME" perspective is from the Medical Model of disability and shitty doctors LOVED this study. Hearing that this has been professionally debunked is such a relief cause then i can just throw the professional debunked report at doctors or assholes and and save my (very limited) energy

I don't see the problem. I asked Google Gemini, and it told me that Malcolm X created the Theory of Evolution, and only a racist would say otherwise. Then it screamed continuously, which was a neat trick as I don't have speakers on this system.

The bell curve you were mentioning is a problity density function. But you compared it with the graph that clearly isn't. PDF isn't the same as distrubution by age

LDN at 0.13mg (my sweet spot/ other dose made me worse), made me go from; crippling muscle weakness akin to MG/ MS etc., in which my baseline progressively reduced. I've had it for 9+ years. At my worst, I was bedridden for a whole year, unable to tolerate any stimuli; light, sound, touch, temperature, etc. I was left in a cold (constantly 16 degrees Celsius which resulted in frost nip, but I couldn't sweat due to anhidrosis, so I had no choice), dark room, and and earplugs constantly, which resulted in blind spots, and constant tinnitus/ muscle ear syndrome/ phantom sounds. I couldn't talk. I couldn't shower, as every water droplet felt more painful than a tattoo gun (coming from someone who is covered in tattoos). I developed allergies to everything, I did not have allergies to prior. I could not even use my phone, or watch tv to waste time, nor sleep as I had sever insomnia. I just laid, slowly losing my ability to think as my imagination disabled and would send electric shocks down my CNS, and brain cramps if I did. It's hard with Asperger's/ ADHD to force yourself not to move. It's not like I didn't want to move, I was restless, and every time I tried, I'd get severe air hunger, and PEM which was a severely crippling electric shock that went down my CNS into my wings, disabling me for moving for hours. To; mostly recovered (just cannot do extreme exercise everyday without rest days in-between like I used to), LDN has seemed to have neural anti-inflammatory effect to my HPA-Axis dysfunction (pseudo Cushing's, constant fight or flight). I can still feel the illness, like the jittery muscles, it's just I never seem able to cross the plateau. I recovered from being completely bedridden, to 85% recovered in about 2-3 months. Everyday I was able to increase exponentially (I am not advocating for GET until the issue is resolved, allowing you to finally heal). I will mention, I didn't notice, I was feeling any different, it was by accident I was forced to do more exertion. In fact, I felt godawful, but I didn't crash quite as hard, and I could "feel" my brain "rewiring". I was prepared to die trying at that point.

Stable diffusion can already generate very high quality content, you could very easily train a model in a few hours on scientific data

Can someone explain the statistics part I understand how the distribution of the scores for a demographically representative population will not be a bell curve but in that case how is a threshold for physical function established ? Can we say that within a particular age group the score distributions will be normal and then we group people based on their age and have a different threshold for each age group ? And in he study did they like calculate an SD without realizing the distribution is not normal ?

PLEASE do more coverage on ME/CFS and Long COVID. Patients with these diseases need all the help we can get.

Pete, this is absolutely your best video to date. Please keep it up!

Excellent summary. So useful. Thank you

That is just shocking! 😮

As a doctor who goes similar thing to them I understand them truly. I have become autoimmune ensefalite after covid and it gone seronegative although I have symptoms I recover quickly because of shrooms usage(I used itfor my bipolar without knowing it has immunsupresive effects,very potent at that)The thing is it is illegal in my country so I cant tell them since laws doesnt protect me at all. I become really terrible if I dont take it but it isnt enough so my pathology got lengthen more than it should even though I have physical symptoms doctors say it is functional(conversion) For starters conversion is not a diagnoses. You just cant find the disease and say meh it is probably psychological. Which is most lousy explanation of anything If there is an organic problem then it is probably made by an organic rwason despite psychological involvement

"Can't derive a normal range if the underlying data doesn't have a normal distribution." Seems like you are playing word games here with multiple definitions of the word normal. Plenty of other distributions can be calculated with a mean and s.d., but you didn't even demonstrate the distribution is not normal. If the score within each of the age ranges is itself normally distributed, then any sum or weighted average of those scores would also be normal. If your argument here had substance you would be able to show that they are wrong that half of the adult population scores below 85. Only picking on you because you claimed to know stats, which you clearly don't.

There are now a number of clinicians/researchers/patients/journalists who have historically supported the biopsychosocial model described in the PACE trial shift to favouring a different biopsychosocial model where ME/CFS is seen as equivalent to or very close to the same diagnosis as the neuropsychiatric movement disorder known as functional neurological disorder FND (conversion disorder). There is a tendency in some of these people online to then emphasise the psychogenic triggers seen in many people with FND as being the most important aspect of developing ME/CFS. Unfortunately, this is another oversimplification of how psychiatric diagnoses fit into the actual complexity of what is now known about ME/CFS. The vast majority of people with ME/CFS have the neurovascular disorder dysautonomia. This is thought to be the driver of post exertional malaise in most patients. Therefore, the known biopsychosocial model that applies to dysautonomia should heavily inform the model that we use for ME/CFS when it includes dysautonomia. Dysautonomia is already known to have many possible causes. Some of these causes are known to be structural in nature. Others causes are considered as primarily functional disorders. A subset of people with functional forms of dysautonomia have functional neurological disorder FND as the primary cause. It should, though, be pointed out that FND is a rare disorder while dysautonomia and ME/CFS are certainly not, making FND a hard fit as a a cause for the entire ME/CFS patient community. Making the situation even more confusing is the fact that the cerebral hypoperfusion seen in dysautonomia can trigger a cascade of functional symptoms related to activation of the sympathetic nervous system and HPA-axis dysfunction, which is then thought to manifest as FND in some dysautonomia patients. Basically all of this this means that functional neurological disorder can be the cause of dysautonomia in some people while in others it is the dysautonomia that causes the FND. Even in those who do not develop FND, physical and emotional symptoms of anxiety often coincide with dysautonomia due to the body's sympathetic response to cerebral hypoperfusion. It's like dualistic gymnastics for the mind having to conceive of a single disorder that can be triggered by a structural condition in one patient and a psychiatric disorder in another, yet often leads to similar secondary psychiatric symptoms regardless of the initial cause. This nuance is not being widely discussed in our patient community in part due to the intensity of anti-psychiatry sentiment that exists as a result of decades of medical gaslighting that painted all patients with one brush and put our personalities and life traumas under a microscope in search of explanations. We have been subjected to so much faulty biopsychosocial quackery over the years that many patients now have no trust whatsoever in anything that psychiatry might have to contribute to the understanding and treatment of ME/CFS. The authors of the PACE trial have a lot to answer for the harm they have done to the reputation of their field in the eyes of ME/CFS patients. They have left a very messy, complex, and sensitive situation for the current crop of psychiatrists who now have to try and repair their reputations with our patient community.

I'm all for PACE but people that have ME or CFS should get disability payments while they slowly ramp up their physical and cognitive ability to be able to work in jobs

Before you comment on medical conditions and spread medical information, you might want to check with a physician first. There are problems with PACE. True. But what they tried to do was admirable. The fact is that ME is poorly understood. Not for lack of trying. But for lack of evidence. It is strange for you to be so dismissive of the claim that ME has a psychosocial component. Why? Is someone with somatization not suffering? Is their experience invalid? Why does the suggestion that illnesses with physical symptoms and without obvious causes might have an important or predominant mental component… why does that suggestion have to be offensive? Can we maybe work toward a world where people with such disorders aren’t stigmatized? Because PACE exists within a broader context of other pain-based and fatigue-based syndromic diseases without known causes that represent diagnoses of exclusion. And many of these conditions DO respond to CBT and acclimation-based physical therapy. You’re just so wrong here from a medical POV and you’re doing tons of harm. We need help destigmatizing these treatments. Huge mistake by you.

Darrel Huff said something to the effect of, "It could be an honest mistake, but it's odd how the mistake is always in their favor." From, "How to Lie With Statistics."

Important to note that Cognitive Behavioral Therapy works; it's just inadequate as deployed here. CBT is an effective technique for mental health with large scale evidence backed validation and has helped me (along with medication, exercise, habit forming) combat ADD and depression. I don't know why anyone with mental health experience would propose that therapy independent of habit building and exercise could work; only those three in concert can.

Many thanks for doing this Pete - Given the number of people having ME/CFS in the long COVID group, any mistake in studies like this will affect a huge number people.

Hopefully a decent study can be performed to fill in the knowledge gaps for the patients still looking for answers. I know how much it sucks to have a mysterious invisible illness that robs your strength. I have chronic muscle weakness and get post exertional malaise from certain types of exercise and from overheating, but I don't have me/cfs, just crappy lupus eating me from the inside out. I went to physical therapy earlier for my back, and had to come home and barf and sleep the rest of the day lol 🥲

"But we didn't say which group the people were in, so the festooned would have affected everyone equally." That is an outright lie. A testimony that says, "The therapy is really helpful," *clearly* refers to one of two groups, and *clearly* excludes the other two.

Let's not miss pointing out that many lobotomies were nonconsensual, especially for those institutionalized

Thanks for that video! I have ME thanks to Covid and the term "chronic fatigue syndrome" is a bad joke that has nothing to do with the extent of suffering ME is causing. It's more akin to being physically and cognitively paralysed than tiredness. It's like somebody has forced you to stay awake for a complete week while you have a terrible flu at the same time.