This $8 Million Medical Trial Is A Joke
Вставка
- Опубліковано 21 лип 2024
- David Tuller's research is crowd-funded and extremely important. You can support his amazing work here: crowdfund.berkeley.edu/projec...
My Website: petejudo.com
Follow me:
Behavioral Science Instagram: @petejudoofficial
Instagram: @petejudo
Twitter: @petejudo
LinkedIn: Peter Judodihardjo
Good tools I actually use:
Shortform: www.Shortform.com/pete
Ground News: ground.news/Pete
David Tuller's research is crowd-funded and extremely important. You can support his amazing work here: crowdfund.berkeley.edu/project/42302
Lots of people I grew up with had and still have this idea that autism generally just goes away and isn't even a permanent mental health disorder you can suffer from. I have even seen USA government disability workers telling my friends and family that kids typically just grow out of their autism. Particularly here in California, I too have been told by different social workers that autism is classified as a temporary disability like if you get knee surgery and then maybe after a few years at most get cleared of disability and then are not eligible for further services. Also getting married, having friends, holding down a job and getting good grades in university only apparently adds evidence somehow that you are healthy
Recovery thresholds are a trash outcome measure anyway, as an intervention can be harmful and still show up as helpful with that measure.
Imagine a magical pill that is supposed to make you intellectually gifted. It lowers IQ by 10, but increases standard deviation by 15.
This will increase the likelyhood of IQ >= 130, while on average being harmful with SMD = -2/3.
Edit: I'm also looking forward to the day you discover psychiatric research, as literally all of it is this tier of trash.
To those interested, David Tuller from UC Berkley has been fantastic helping fight for us patients. And he got hounded and publicly criticised by the authors of the trial. They tried to destroy him. But he stood strong and fought these fraudulent researchers for years. And the dirt he dug up is mind boggling. To read his work look up. ‘Trial By Error’ at the website ‘Virology Blog’ he has published lots of articles there over the years.
The researchers were paid but the medical insurance industry, and by the U.K. work and pensions ministry, that then because of the Pace Trial were able to deny sickness benefits to people who were actually physically unwell.
One of the authors Simon Wessely sits on the board of a media lobby group that put spin on scientific studies (including his own) the media didn’t fact check it, and published the garbage he said.
Simon Wessely also was paid big bucks to look into Gulf War Illness, he said it was psychological, but it turned out it was pesticide impregnated military uniforms, Sarin gas extremely toxic organophosphorus compound, and other chemicals from the burning of hundreds of oil fields. so yet again, Wessely was totally wrong. Unfortunately he was made a knight even though he is an utter fraud!
Michael Sharpe, who is also an author of the Pace Trial condemned international award, winning investigated journalist, George Monbiot for talking about his own experience with long Covid. Sharpe said that Monbiot was spreading long Covid by talking about it publicly! WTF!! ?? Yes you heard correctly and there’s a fantastic article on this by. Monbiot wrote a recent article on it, explaining the fraudulent practices of these authors appalling behaviour.
Look up ‘‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal’
@@MStrong95oh, god, tell me about it! Btw, I find the idea that it felt like Judo was pushing at the beginning of the video that ME is a 'real' condition seemingly as opposed to 'fake' conditions like learning and communication disabilities to be rather unhelpful.
Also the idea that exercise and/or therapy would never cure anyone of anything, I agree that it seems inappropriate for ME, but saying therapy isn't a medical intervention seems like it needs a bit of backing up.
Usually a fan of his work, but I did not like the introduction.
Ah yes let's hope The Lancet retracts this paper, it only took them 12 years to retract the paper for Andrew Wakefield's MMR vaccine "research".
there are lots of scam artists in the medical field though. he was a very minor player despite profiting about 40 million
After the Lancet let those those involved with Covid "gain- of-function" research to whitewash themselves on their pages I never trusted them again.
The Medical industrial complex is predatory. This has gotten a lot worse in the last 30 yrs despite "evidence based medicine" training in physicians because your average doctor consumer of research just can't keep up with math and 'experts' in the field are being paid to do the research. Regulatory capture has been accomplished and the patients and doctors often lose againsts this process.
I am afraid the Lancet is a political and pharma rag
Or. Decades to admit cholesterol isn’t clogging arteries. And most people don’t know that yet.
Or how long for transfat to lose its “generally recognized as safe” status… also decades. But it will probably take another couple decades for the labeling to accurately reflect trans fats.
I got misdiagnosed with ME/CFS many years ago. I was told to exercise more and so I did. I improved a lot but then fell off during the summer and was told that I needed to exercise harder. I was in the gym over an hour a day and not improving. I was told that “sometimes that’s just how CFS is”. Years later I was diagnosed correctly with POTS and MCAS. I got better because cardio tolerance genuinely helps POTS and the pollen I struggle most with is high in the summer. But to be told that “oh yeah it’s working” then suddenly “oh well sucks to be you” really made me see how poorly CFS patients are treated. My heart goes out to you all.
Quercetin is amazing for MCAS.
It's like this across the board for many conditions.
If you have unusual persistent symptoms doctors have no idea what to do and their first thought is budget so they don't refer you for full multiple assessments. If you have complicated medical needs you're fucked unless you have a lot of money to go private to get a realistic diagnosis and treatment
All of them are known to go hand-in-hand. ME/CFS is an extremely common co-occurrence with POTS. Which makes treating POTS frustrating, because some people, like you, do great with exercise, but some get dramatically worse.
Right now, POTS is proving to be an autoimmune disease, so it's likely many patients wind up triggering episodes with exercise- which causes the immune system to attack muscles.
Anyway it's likely POTS and ME have the same root. The research is pointing to the same T cell being responsible.
@@ghostratsarah honestly my specific case of POTS is likely tied to my genetic connective tissue disorder which might be why I benefit from exercising, too.
@@foxxxyg that does make a difference, lol. Autoimmune POTS is caused by damage to neuroreceptors, Ehlers-Danlos is tissues being too elastic. Conditioning doesn't do anything for a damaged nerve, but better muscle strength can counteract being too stretchy. We need a better way for doctors to differentiate secondary POTS from autoimmune - but autoimmune pots isn't even recognized as being such, yet.
Couple of other things.
There was no follow up or mention of participants that dropped out (probably due to worsening of symptoms), they were completely deleted from the final outcome.
The scoring form was graded 1 to 5. 1 being very poor and 5 being very good (health wise). If you had put your fatigue or anything else at a 1 at the start of the trial there was no way for you to go lower if your symptoms had been made worse. You could only declare your symptoms had stayed the same by putting 1 again. There was a comments section but the these were not used for raw data.
Hope that makes sense
Makes total sense, good points!
God that infuriates me. As someone who is dealing with similar bureaucracy this kind of thing absolutely enrages me. These are charlatans and monsters, and ought to be locked up for their egregious abuse of human beings in need.
That grading part is horrendously stupid because who is most likely to enroll in a trial someone with a mild case or someone with a severe case who is just hoping for something to make it better? So it's already more likely that the people you're getting are going to put 1 in the start.
The lack of analysis for the study dropouts seems to be common in these kinds of trials, though, no? In at least some frameworks for research ethics, I believe this is actually _required._ When someone drops out of your study, they have a right for their data to not be included or discussed.
YIKES that terrible!
Soooo... Not only the study is invalid, but even if it was legit, it costs 8 million to prescribe a group of people moderation in activities and check how far they can walk a year after?
Coming from an engineering reasearcher and participant of several medical trials, this was probably the easiest money grab.
Who got the money in this situation?
@@BH-xk9ty researchers, duh.
@@feedbackzaloop there is more to that. the video discusse3s this in the last 5 minutes of it. the gist is that insurance companies don't want to pay out to people with these conditions who are affected. the findings of this study suggests that its not as bad for them and they can get back to work sooner if they just follow the b.s. routine.
the people who ran the study were not truly "researchers" in this effort, but are planted saboteurs with financial ties to the insurers that benefit from these false findings.
@@RandomDeforge e-yep, there are layers to it. I'm simply commenting on the study protocol. But I guess only when you have financial interest and patronage you could come up with such corrupt work.
Engineering researcher? Could you say more about your academic background and what you do? Did you do engineering psychology, human factors, or something else?
As someone who has this, it’s frustrating that people assume we don’t try to exercise. I used to be a professional dancer and continued to do so well into my illness but it became slowly more and more hurtful.
People want to believe they have answer so they can blame you for your sickness. This gives the comfort of "knowing" they will never get sick because they know what to do and you're just not trying hard enough. Most people are idiots and lack a decent amount of empathy
Here, in the Netherlands, the strategy was to have all CFS patients exercises, with the idea in mind that it wouldn't hurt, even when it didn't help. That strategy hurt a lot of patients and made their situation irreversible worse.
Irreversible is a ducking lie, stop spreading misinformation.
And on top of that, patients that don't recover or indeed even get worse blame themselves and their 'wrong thinking'. I have a friend who can't get the things the psychologist repeatedly told her out of her mind, while it was years ago.
this is exactly the advice my mom always gives me because of what her doctor told her at least a decade ago!! no interest when i explain how much worse i then feel
There are lot of medications out there that seem to apply to certain symptoms used by athletes, special forces soldiers, pain patients, aids patients, and sufferers of narcolepsy and adhd. I doubt there is ever going to be a cure but there seem to be a lot of people like bodybuilders and college students that somehow get ahold of these. Isn’t that troubling that people can get these medications that would address your symptoms without a proper prescription. I find this deeply concerning if you wanted to educate yourself in order to properly condemn this sort of illegal activity I am sure looking up how this is possible would be a great resource in educating yourself about how these bad people get meds to help stay up all night or lift weights for ten hours a day. Obviously we should just wait for a cure and not try to figure out what other people do to address these symptoms with a doctors approval for other diseases or how awful criminal college students get narcolepsy meds to stay awake and study. We should all stay far away from that sort of non medical approved criminal use. Let’s all condemn it while we wait for the medical establishment to properly acknowledge we have an actual disease.
I would do taurine, photobiomodulation, NMN, apigenin, and methylene blue.
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."
perfect quote for this scenario.
@colorbugoriginals4457 It's a great little book.
You're extraordinary for covering this. The 3 million of us with this nightmare of a condition need real treatment now.
There's way more than 3 million with ME/CFS. Around 24 million have it worldwide, and a significant portion of Long Covid patients (about 60 million+ worldwide) meet the criteria for ME./CFS.
Stop demanding that other people fix you.
@@ohsweetmystery bro thinks a medical condition can just be solved without medical intervention....
@@ohsweetmystery that's..... that's literally the job of doctors...... it's what they get paid for...... what
@@ohsweetmysterynobody is demanding that they are asking the medical community to take the treatment of disease seriously and not treat it as faking it. Which is what they are doing, stop being so angry and self righteous because people want help and don’t conform to your bootstrap radical ownership nonsense as if you will never in your lifetime need or ask for help.
An extended family member of mine remarked to one of my parents that i "just need to get my life together" when talking about my current state with ME/CFS. That family member is in the medical industry. The worst thing about CFS is being left behind and ridiculed by your loved ones for being lazy when you want nothing more than to be free of the fatigue.
ya know how people can connect a device to their torso to have it induce feelings of period cramps & labor? i wish people could induce the pain, exhaustion, brain fog, etc etc of things like ME/CFS. would love to see these people try to get through their usual day, see how it damages their mind & emotions to not be able to do the things they want to & that they used to be able to do. i'm tired of people humiliating disabled people because they don't have empathy or simple understanding of how the body works.
The thing I've come to realize is that medical professional are people too, and just like most people it seems a large majority are secretly assholes and let it slip sometimes. I've had doctors say some incredibly out of pocket things, ranging from insane assumptions about me to political comments. Once had a nurse tell me the reason it hurts to breathe is because I wear a mask, after a tree had fallen on me. I almost blew me lid lol
@@myoak108 that's absolutely WILD oh my god, i'm so sorry! as someone who still wears masks, it's crazy that some medical professionals can say this to us when they've been the major wearers of them in the u.s. for so long & yet the fell for the politicization of it as soon as people could profit off of & control others through lying about them!
i've avoided doctors mostly because of being poor but have had so many doctors be fatphobic towards me. once had a doctor tell teenager me to come back a month later after losing 10 - 15 pounds within that month. she didn't give me any meal plans or exercise habits or anything that people usually recommend for weight loss, just lose it & come back. she could've kick-started a major eating disorder for me if i didn't know that was crazy. but i still felt shame & embarrassment! this is just my body type. i would have to dedicate my life 24/7 to becoming & maintaining being skinny & that's not healthy physically or mentally!
there has to be better means of updating medical professionals' biases, but the system doesn't profit from that so it won't happen any time soon unless we put greater efforts into making a change. it seems we have to rely on doctors who go out of their way to unlearn bigotry & actually help their patients. i can imagine that gets a lot of push back from the field & leads to burnout though. rooting for all the good medical professionals to rise to the top, be heard, make changes.
@saxdrummerjp Have a look at these. Any new syndrome in the past 4 years should be investigated with the safe and effective as a possible cause if temporally related.
DOI: 10.1101/2023.11.09.23298266 DOI: 10.3390/vaccines11111661
Thanks for explaining this.
As my father likes to say, "Tell me who paid for the study, and I'll tell you what the researchers discovered."
Ah, who paid for the COVID studies.... If you believe every author is biased and a criminal, what does that say about you?
I have worked on numerous clinical trials that did not yield the results the sponsor was hoping for. Most, maybe even the vast majority of Phase 1 trials do not yield the results the sponsor was hoping for. I venture to guess that more than half of Phase 3 trials disappoint their sponsors, with a loss of every dollar that went into the entire clinical program. I have lost my job the day after the results were reported numerous times.
@@TheMargarita1948 Yes, and nobody every hears about those studies.
It must be terribly tempting, sometimes, for the PI to put their metaphorical thumb on the scale. I would not like to be in the position of reporting news that I knew would get me fired.
@@mmlvx I am not clear what you could mean by “the PI putting their finger on the scale.” The investigators don’t lose their jobs when a trial fails or is aborted. The investigators are not employees of the “sponsor’ (pharma company). They are employees of or service providers to the treatment facility (eg, hospital) where the subjects receive treatment and the data are collected. They don’t know (nobody knows) which subjects are getting which treatment.
If you don’t know what I mean by that, look up “double-blind study design.”
your father is a smart fellow.
I have suffered ME/CFS for 24 years, this study has made my life harder, trying to get clinical help was difficult enough, after this study it became even harder, I've just stopped trying to get medical assistance to help me with my condition.
this is how I feel with fibro. no sense in going to doctors who just think I'm lazy.
The ides of “six months or more of unexplained fatigue” as the ONLY criteria for ME/CFS is insane to me. I don’t have ME/CFS but I had YEARS of unexplained fatigue before I got my POTS diagnosis. A combination of slowly-increased exercise and a beta blocker have helped me a TON, because those are good treatments for POTS. Wild to think I could have been included in this study and marked as “recovered” from a condition I don’t have
I had fatigue for many months…until I diagnosed with ANEMIA and put on supplements to make sure that I got enough vitamin D and b12…there are so many reasons why people can have fatigue for so long. It’s almost laughable.
I was active, but activity only made my symptoms worse until my underlying issues were treated. I can’t imagine being told to just “exercise more and go to therapy” to treat it. I hope one day, we figure out what causes CFS and treat it, but we can only do that if we treat it like a real disease.
Thank you for covering ME/CFS! To clarify more, Post Exertional Malaise (PEM) not only is caused by exercise but also by much less physical activity, mental activity, stress, and sensory overload. It varies by individuals with the most severe patients going into PEM with incredibly small stimulus. PEM can also cause the patient's baseline of daily symptoms to be increased and PEM being triggered by even less stimulus. The most severe patients are bed bound and can't even listen or watch anything.
...and can occur 1-3 days after the exercise. Some of us with PEM feel fine immediately after overdoing things, then it hits us a day or two later
@@samuell.foxton4177 And even though sometimes its very clear what caused the PEM, often enough, the sufferer is unsure what exactly caused it, or which day the trigger happened. So its like walking in a minefield.
Just to clarify, it is not caused by exercise, but exercise can make it worse. The trigger is usually a viral infection.
@@Greylobster okay buddy. Let us know when you graduate from crayons and are capable of even a high school level of understanding, until then unless there are some kindergarten teachers around, I don't think any of us is equipped to dumb this topic down enough for you to understand.
@@kezia8027 it's literally classified as psychosomatic
As someone with post-viral ME/CFS (and POTS) that's been severely worsened by following exercise recommendations from my doctor and the old NICE guidelines, transitioning from mild to severe (I've been bedbound now for 5 years), I cannot thank you enough, Pete, for covering this topic 🙏. Unfortunately, those PACE "researchers" have damned me and millions of other patients to a life of hopelessness and misery by hijacking biomedical research into this devastating condition. The fear of exercise is akin to saying fear of fire: as a former athlete, I wish I could exercise again so much; even having a walk would be truly amazing. By playing the "fear of exercise" card, it feels like a contrapasso punishment in Dante's Inferno.
My partner has a similarly severe presentation and I’m glad to hear it wasn’t just me that was furious reading it all too
I’m so glad I’d found this out before anything like this, I hope things are easier for you though mate
The symptoms that you describe are alarming! Where could I read a comparison of the most important health markers between a person suffering from this ailment and a person that is not suffering from this. www.ncbi.nlm.nih.gov/pmc/articles/PMC10353687/
Similar story for my wife. PEM to the point of slipping into stage II coma sometimes. Scary when your own wife recognises your face but doesn't even remember how to speak...
Her being told by doctors that she was just lazy, while she was killing herself trying to follow her passion of training in strongman, and swimming, while finishing her engineering degree. It was extremely insulting. After many years being stuck in the traditional treatment options at the local uni hospital she was recommended a ME/CFS-specialised clinic that also conducts and publishes its own research.
After so many wasted years in normal DSM-controlled healthcare that clinic got her partly recovered again in less than 6 months (LDN). Now with the addition of pyruvate supplements and montelukast (her CFS is mast cell related) she is doing well. She can do much more at 46 than she was able to do at 26, so that is a lot of progress. There is hope, if you manage to find the right doctors.
@@roobs4245 That's the newest science is that there is a link to mast cell activation or histamine intolerance. I went through that experience of being mis-diagnosed, too. I'm glad she's better.
There are clues that some ME/CFS sufferers (also) have a glitch in their citric acid cycle, resulting in not making enough glucose. Unfortunately my foggy CFS brain can't recall the specifics, but that's why for some a simple pyruvate supplement could help so much, as it let you skip a few steps in that citric acid cycle.
As someone who has had a life derailed by ME, this "study" is inexcusable and makes me so angry. Perhaps these "researchers" should walk a mile in my shoes. Oh wait, I can't walk a mile anymore.
Have you tried Cognitive Behavioral Therapy? /s
@ShadowEclipse777
HAHAHAHA I nearly flew apart in rage, then went through all the stages of grief! Finally, resigned, I gathered to master myself into "education" mode, before I saw the sneaky lil /s at the end....😊
dont see any poor people in india/africa or any developing country complaining about this. its just a privileged ‘disease’
David Tuller really hit the nail on the head. The researchers had to be either comically stupid, or acting with active malicious intent. And everyone should know which one of these it is. This studies conduct is egregious, omg
Normally, there is Someone's Razor, which says don't attribute to malice what can easily be explained by incompetence. However, getting people with CFS off the NHS and benefit rolls has long been a goal in UK gov't circles, and this study being funded by the DWP.. yeah, it's malice. It is somewhat understandable in that I'm sure there are people who use CFS to cheat the system and get free money because there aren't good objective diagnostic tests for it, but the idea that this number of young people would independently commit to being bedridden to invent a non-existing condition and milk benefits is just not credible. It clearly exists, we just don't know how to diagnose and treat because we don't understand the pathology.
Just a slight correction, PEM isn't about exercising at all. PEM can be brought on by minor physical or mental exertion.
I took my pet to the vet and had a terrible PEM episode that destoryed me for 6 weeks.
I would never dream of working out while i have ME/CFS type symptoms from long-covid.
Yes and it can be emotional too! My pet had a medical crisis and didnt make it. I wasn’t even the one who drove him to his appointments but I was still extremely upset and it made all my symptoms 100x worse I was bedridden when usually I’m mostly housebound and can move around a room
Exactly, thank you for saying this. I suffered from long covid along with ME/PEM for almost two years. Being on my 30’s and healthy beforehand, most people thought it eas all in my head. I did all the treatments from this study with minimal benefit. Fortunately I had doctors who were willing to leave no stone unturned and I am back to being able to work full time and live my life again as a husband and father.
@@nathanmcindoo6013 What were your doctors recommendations? I see a long-covid specialist and am trying different meds. Definitely some benefit but still crippling PEM if I do just a tiny bit too much
Five minutes in and I'm already annoyed.
I don't have ME/CFS. I never had post-exertional malaise (quite, more on that below). But I am intimately familiar with being encouraged to exercise more to recover from what was assumed to be "deconditioning" and mere mental hangups about it, when it was actually something else. My heart goes out to everybody with ME and similar conditions. I believe you!
(I had some form of iron deficiency issue from years and years of over-heavy menstrual bleeding. The confusing part and which kept me from seeking treatment (or treatment being pushed on me) was that my hemoglobin levels were never worse than borderline low and were usually in the low normal range. But I was so debilitated that I couldn't take a full shower without needing to lie down afterward. I couldn't fold a load of laundry while standing; I couldn't do a sinkful of dishes at all. I would experience slight improvement from consistent exercise, but the exercise itself was so hard on me (it would take literal hours to recover from a very slow 15 minute walk) that I would never keep it up for long. (By slight improvement I mean that after a week of this kind of very slow walk, the walk itself was slightly less debilitating. I never got to the point of noticing any improvement in my day to day capabilities.)
I was also, around this time and leading up to it, extremely depressed, following on from a cancer diagnosis. Ultimately, I spent over two years almost entirely in bed. So I had good reason to believe to I might simply be "deconditioned". Even after the depression improved and I wasn't bedridden anymore, I never pushed very hard for an alternative explanation or argued against exercise as a hypothetical cure for my continued debilitation.
Long story slightly shorter, I hit perimenopause and the bleeding went from persistently a little bit excessive to extremely bad and virtually nonstop. After two months of this (during which time I was trying treatment, but it hadn't worked), I was in a really bad state. All my previous symptoms, but much much worse. I arranged to have an ablation, and during the pre-op examination for it the day prior, discovered that my hemoglobin had crashed all the way down to 8 (the floor of normal is something like 11). I had the surgery and made an appointment with a hemotologist, but hit a crisis a few days later where I was completely unable to catch my breath after very minor exertion and wound up in the hospital for a transfusion.
Three months later after IV treatment with iron, it was like none of it had ever happened. Was I exercising any more than I had been? No. Had I done a single thing to reverse my "deconditioning"? No. But could I take a shower and not need to lie down? Yes. Could I go for a nice walk with my family and feel fine after? Yes.
So I'm very sensitive at this point to people being told that, in effect, be less lazy and you will be fine, when there is something physically wrong with them the whole time.)
I feel this. I’m still figuring stuff out but it took two years of weird symptoms before I was evaluated for anemia. It doesn’t help that my periods have been normal the whole time except for a couple times where I had the worst cramps, the first instance leading to my hands clenching up (I think because of increased heart rate due to the pain). The first doctor I went to literally LITERALLY told me I was just stressed out and did nothing to help me. It’s unbelievable and I still hate her.
Unfortunately the only people who have the least bit empathy are the ones who have themselves suffered.
This reminds me of when I had periods that lasted 2 weeks and the doctor didn’t do anything bc it was still considered “normal,” apparently. I went back again after a few months because I knew something was going on, as I had started bleeding through clothes after a couple hours when I could usually last at least half a day with a menstrual cup. Turned out that I had a grapefruit-sized fibroid that needed to be surgically removed.
That was 5 years ago. Right now I’ve been dealing with fatigue issues, and I don’t think I was tested for iron levels in my last blood test. I’m going to ask them to add that to my testing that I have scheduled for next week.
I’ve definitely had better luck with doctors since that one gynecologist though. Learned a lot about what to look out for from that experience.
@@AllTimeAesthetic Bleeding through clothes after a couple of hours was my normal for the first couple days of my period for most of my life. I didn't even question it. It didn't seem to cause me any problems, until it did. Cumulative effect?
I still don't know what exactly my "diagnosis" would have been. Like I said, hemoglobin (the usual test for iron-deficiency anemia) tended to be low normal for me. But I also consistently showed up as having small red blood cells (micro something or other), which can be caused by lack of iron. Maybe having small red blood cells can cause problems all by itself even with normal hemoglobin levels. I just don't know. I wish I knew more about how it all fit together. I'm terrible at getting clear answers from doctors (maybe they don't know either) and never asked flat-out in plain language "why did I have so many problems despite normal hemoglobin levels". I'm afraid the doctor's going to look at me and tell me that I didn't actually have any problems, and not being able to make it through a decent shower was all in my head. So I take what I have and don't ask too many questions about it.
I'm guessing the ultimate culprit was iron because all of the above plus 1. they don't test for that normally, so my numbers could have been low all along without me knowing, and 2. getting iron infusions fixed it entirely. Also, when I wound up in the hospital, my iron levels were tested, and my jaw hit the floor on how low they had been, when I found out. (Something along the lines of 4, when the doctor was aiming to bring me back up to around a hundred. But apparently there too the "normal" goes as low as 12, so was my iron 12 or higher before the major crisis started happening? No way to know.)
Anyway, good luck and I hope this is the answer for you, because it really is a simple fix once they start it. Regardless of numbers, if any doctor ever starts making noncommittal noises about maybe you could get iron treatments "if you want", I'd say to take it.
i also had this experience! they told me i had deconditioning syndrome when i couldn’t eat, sleep, or do much of anything without severe nerve pain. i actually had a rare neurological disorder from a previous spinal injury, which we only found out when i ended up in the psychiatric ward and they started giving me anticonvulsants. the pain had gotten so bad i was at risk of suicide.
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
In a double-blind clinical study, nobody knows which subjects are in which treatment group until long after the treatment protocol is complete (last subject, last clinic visit) and the data have been analyzed and have been and reported to the regulatory agency.
@@TheMargarita1948Can you really call this study double blind? It's pretty obvious what treatment you're in
@@BryanLu0 I don’t know anything about the study that is the topic of this video. I was responding to a comment that was not directly related to this study. I believe that commenter and many others on this thread know very little about how clinical research studies are conducted.
@@BryanLu0 If you are curious to know whether this study followed a double-blind design, it is very easy to find out. Every real clinical study has a number and a title. The title includes that detail: eg, “double-blind placebo controlled.” To look further into the details of exactly how the blind was structured and maintained, read the study protocol. Study documents for any and every FDA-approved study can be found at . The EU has a similar web site.
@@TheMargarita1948 OP was clearly referring to the study in the video, since they referenced a newsletter. Maybe watch the video for context. The newsletter even named the three treatment groups, so I don't know how you could call this study double blind at all
Huge respect for David Tuller to admit his article was wrong and fighting for those who suffer from this unscientific trial!
My heart goes out to everyone suffering from ME CFS ❤
This study is an absolute joke, what an absolute abomination.
This statement is absolute
Yeah another problem with the objective measure they measured is that people with me and cfs can sometimes walk for six minutes just fine. And then be debilitated to lift their head. And that can happen for no reason. You could go months being able to do wonderfully fine or you could have an hour when you could do a marathon ..its not consistent and six minutes is a ridiculously small amount of time. At any six minute point in time you could be in any state. Its not as if people with me do not ever experience a day or an hour of energy where they are totally able to do normal things. It's part of why it's so hard to get a diagnosis because on the day you have the energy to get to the doctors he sees you are fine. And on the day you cant lift your head you can't get to the doctors.
Thankyou! I had to do a double take that a non-ME/CFS or LC channel was covering this. It has been largely ignored by the media for years now after initial positive reporting on PACE. ME/CFS is a rabbit warren of social and medical controversies and the PACE trial is definately one of the worst we have had to deal with as patients.
Thanks for covering the corrupt PACE trial. It has contributed to many decades of stigma and neglect
It's not extreme tiredness though - it's cellular energy dysfunction which causes severe exhaustion.
Also, PEM is an abnormal response to activity- any activity. Exercise is out of the question when you are unable to even have a shower or make a meal. That is the level of disability, caused by mitochondrial dysfunction and other biological abnormalities.
This comment!say it louder!
@@Greylobster you are just showing your ignorance of the biomedical research.
That's your problem "snookerman"
@@Greylobster whats your problem lmao
@@Greylobster so if a depressed person is ever happy or if a person with a wheelchair ever walks by themselves they're clearly not actually suffering from those mental illness or disabilities and are just faking it. what a pathetically ableist way you think, even if you only extend the thought process to only CFS it doesn't change the fact that it harms basically anyone with a mental or physical illness/disability that might not make them look immediately ill. i'm sure you're just a troll but i am so tired of hearing people speak like this.
@@Greylobsterit’s not psychosomatic.
Thank you for covering this. So many lives have been ruined by these "researchers".
💯. I think they are self aware about it too. It's not accidental and it's not incompetence.
Nothing new.
i wonder if they can be sued
their sponsors will probably be able to avoid punishment, but you have to punish them so others think twice about engaging in these sorts of arrangements
A high school student could’ve designed a better trial.
Bizarrely, as a person who doesn’t have CFS, I have indirectly benefited from the kind of thinking behind this study. It was before this particular study was published, and as a teenager I began to suffer from chronic fatigue. My doctors had heard of CFS and thought it was possible I had it. They advised me to exercise, which turned out to be hugely helpful. That’s also how I know I don’t have CFS. Likely the fatigue was caused by multiple factors, including a thyroid problem (which I was diagnosed with at the time), an undiagnosed heart condition that would be uncovered later, and possibly depression. Exercise can help improve almost any condition, which is what makes CFS so notable.
That's great you recovered. It highlights the issue with the name Chronic Fatigue Syndrome. Not only does it inadequately describe this multi-system disabling illness, but it has led to a lot of misdiagnosis of those with the symptom of chronic fatigue which can be attributed to many other factors and illness.
i doubt many got officially misdiagnosed. aside from it being quite unknown (until covid19 came around), it's a diagnosis of exclusion. meaning if nothing else fits, you look into CFS/ME. a person with an untreated thyroid issue (which can lead to depression) won't be diagnosed with CFS
I guess when a fair bit of your patients don't actually have the thing you're supposed to cure you'll get some different results.
Exactly. That IS the real difference. 💯
But don't you think that "just exercise" contributed to your heart condition being missed for longer or your thyroid problem taken less seriously? That's what happened to me with my undiagnosed iron deficiency that had me severely debilitated for years. "Exercise" improves things for most, don't get me wrong, but there has got to be more awareness of the level of fatigue or debilitation that is NOT NORMAL and needs actual medical investigation/intervention.
Thanks for this video, great work! I'd heard that the PACE trial was garbage, but I didn't know about the details. This is infuriating, especially as covid seems to be producing higher rates of ME/CFS (e.g. Dianna of Physics Girl has it), and some guidelines still rely on the PACE trial to recommend graded exercise (e.g. the RACGP in Australia, where I am, recently revised their guidelines and kept "incremental physical activity" in it).
great to see you here. Yes, I would like someone to look into the similarities between ME/CFS and Long Covid. I've had ME for over 30 years after a really serious viral infection screwed up my immune system, and friends with Long Covid appear to have exactly the same outcome, albeit often with respiratory damage from Covid
And so few seem to do ANYTHING about improving mitochondrial function. A child could predict that better approaches would be methylene blue, photobiomodulation, NMN/NR/niacin, apigenin, and taurine, for a start. Hyperbaric oxygen, too.
Michelle! Lovely to see the internet's favorite beauty science communicator here!
That was an excellent exposition of this shady trial. Thank you for putting it so well!
My only issue would be the initial presentation of PEM being a consequence of exercise, but it's really critical to understand that it's fundamentally about exertion, including mental/cognitive, and in the most severe cases the level of exertion can be as small as brushing their teeth, while it has a massively disproportionate payback, so any fear of PEM is more like having a reasonable fear of being mauled by a bear, as someone who lives in an area where bears are common and it happened several times in the past for simply going to the mailbox.
There are many of us science-minded patients and a few academics and MDs who simply don't understand how this study is considered good. It's just baffling and in my opinion is a black mark on medical research, one that has caused significant suffering.
Sadly with Long Covid, ME/CFS type illness is quite common and nothing has really changed. There is a bizarre obsession with maintaining the status quo that looks far too much like an inability to acknowledge a giant mistake.
Please pin this comment!
It wasn't a giant mistake. It is decades of deliberate misinformation to prevent disibility payments.
Those MD's sure hate elephants. Especially while in the same room...
People with hard-to-diagnose food sensitivities face the same kind of issues around pushing themselves. "Try this food, it'll be fine, there's nothing suspect in it" etc, always with the suggestion that most of your problems are in your mind. When in reality this is very logical learned behavior. If your punishment for overstepping known boundaries is days or weeks of unrelenting misery (when even staying inside those boundaries results in lesser misery at unpredictable intervals), you kind of understandably are not eager to keep trying.
@@BlueCyannI've got CFS from having food allergies untreated. They like referring me to psych, because I have a history of disorder, thanks to untreated "food allergies" they know ABSOLUTELY NOTHING ABOUT!
Doing a SIBO/SIFO/LIFO diet atm, getting close to a 4 {Bristol Scale} for the first time in maybe 5 years.
Doctors and nurse are some of the worst people I've ever dealt with. Stupid parrots the lot of 'em.
This is horrifying. I had heard the PACE study was bad, but I cannot believe how bad it is.
Thank you so much for covering it!
As someone with ME I cannot thank you enough for covering this ❤ thank you so much, truly, for the way you’ve covered this. ME is my personal hell, and there’s no treatment, and most people think I’m just lazy. I wish I could explain how overwhelming the tiredness is, for me it’s physically painful in my chest. I will fall asleep walking, there’s no fighting the fatigue. Parts of my life I’ve slept 36 hours straight, only getting up to use the restroom. Thank you so much for this, this helps so much more than you could ever know! 💜 ME has caused me so much pain, I missed all my young teen years. Needing invasive medical devices to keep me fed and well because my body can’t.
Sounds like I suffer from this too. But I get off my butt and get stuff done. Because, who else is gonna do it for me?
@@antoniodelatorre3121 If you can manage to "get off your butt and do stuff" your clearly not that ill then! Maybe you are just tired or have the symptom chronic fatigue which is found in many illnesses and is not remotely the same as the neuroimmune disease ME/CFS.
@@antoniodelatorre3121good for you. You want a cookie or something?
@@antoniodelatorre3121 You know, it is fine if you have no clue about a topic. We cannot all know everything. But please don't make yourself look painfully stupid by expressing an opinion on something you know nothing of. Don't be quiet for our sake, be quiet to ensure nobody realises how uninformed you are.
@@antoniodelatorre3121sounds like it would be absolutely impossible for you to suffer from ME. Why on earth would you try to fake having a serious illness? Your comment makes absolutely no sense. I have seen others try to fake cancer too and they always get caught out because they have zero understanding about the illness. I really cannot understand why you would try to fake a serious illness like ME/CFS.
There is a lot of undeniable science now and has been for a while backing up how very serious ME/CFS is.
Did you know that MS sufferers were treated as badly as people with ME/CFS until they finally discovered ways to diagnose it.
You might want to educate yourself before you say anything more so lacking in knowledge and understanding.
I feel so bad for these people. I don't have ME, but I have other diseases that give me chronic fatigue issues and the idea of how they must be dismissed and treated like they are malingering or just not trying and that talking them out of it or FORCING them to exercise will help is terrifying. I'm so glad my fatigue is more "chartable" and, unfortunately, that I am male so my concerns and problems are taken more seriously by the medical establishment...
God, the idea of being forced to push through a year of forced exercise that doesn't result in any real clinical improvements all to further the aim of being able to deny disability to those in need is beyond infuriating, it's offensive.
When i was diagnosed with a brain tumour, the doctor told me not to worry as it's all in my head.
A study is nothing but a curiosity until it’s been reproduced. Medical treatment and decisions should never be made based on one study alone.
Of course it happened in Britain. Our government is always looking for a reason to call disabled people lazy. It’s shocking but it’s still happening to this day
Not a British only issue, more so a right wing government issue tbh
@@nerida3347 Yeah, same in my country. We've had a pretty good public healthcare system and pretty good social safety net (including disability services & benefits, unemployment benefits), particularly in the 80's. Whenever the right has taken power they've cut taxes and slashed and burned public services. When the quality of said services drops it gets harder to convince voters to want to pay more taxes again, so whenever the center-left regains power they're not restoring quality & thus trust, they're scrambling for budget shortcuts and people to sacrifice too. They become part of the problem and a lot of people have basically forgotten that just funding things so they can work well was ever an option.
@@nerida3347Have you seen how the american VA treats veterans? It is absolutely not a “right wing government” issue, just a government issue as a whole.
They want fewer drains on the system, and they can do that by calling people lazy/liars/losers.
@@orppranator5230 Even the left-wing party in the U.S. is still centrist at best compared to the rest of the world
The part about the authors abuse of the word "normal" in the normal distribution would be almost comical, if the financing of the study wouldn't make it so sinister...
That's what I'm having trouble understanding. Why didn't he just use a scatter plot or a nonstandard distribution? The data is still valid, you still show what the standard deviation is and still show a strong correlation, that would have made sense given the data and would still support the claim (as he recorded it, which is also problematic, but still). It makes no sense to do it this way.
I'm a little confused on that part. It's a very minor aspect but still hopefully someone can correct me. I was under the impression that the normal distribution the paper was referring to would have the x as the physical ability, and y as the population percentage. i don't know where the mean would be but integrating from 0
someone said people who haven't had therapies shouldn't get benefits?! that's ridiculous! even if those therapies did work people should be eligible for PIP while they're having the therapy.
BTW: There's a youtuber out there named Physics Girl with ME/CFS. There are a couple of videos on her channel from other people (one featuring Destin from Smarter Every Day) explaining the medical problems she is facing. I'm no doctor, but those videos make it clear that ME/CFS is not something that is "just in their head." It's a serious condition.
Technically it's probable that it's literally in their head... You know, neurological damage and stuff.
These kind of symptoms/syndromes as possible byproduct of viral infections go back to Spanish Flu at least, and very likely beyond. It's just that between medical advancements and infection scale. And now there is "long covid".
I was just thinking about her in this context. Yes, they said that she had COVID but got long covid. And now as I type this out, there's actually a lot of overlapping symptoms between Long-Covid and ME... From the few video snippets of her, she seems absolutely miserable and tired. I wish her the best.
Was just thinking of her too. How can someone who was so so vibrant and curious, an entrepreneur and edutainor exploring the world and making videos, how can go from that to bed bound and too tired to even read on her phone or listen to audio books? That can't be all in her head, she is so debilitated and my heart hurts for her. That's not living.
I also thought of her. Sounds like she hasn't improved?
Is everyone with chronic fatigue a woman?
The cfs/me patients deserve so much better! They've had to deal with so much corruption and scandal among the researchers in both the UK and US for decades! Long COVID symptoms look a LOT like CFS/ME, so maybe now there will be more high-quality research being conducted soon.
Newly diagnosed with ME/CFS and I'm really glad I found this video. I've been dealing with this for 8 months and right now it's manageable. I increased my exercise about a month ago and fell into an energy hole for 3 weeks, which I've only just now (mostly) recovered from. I wasn't sure why it happened and never connected the increased exercise to the increase in extreme fatigue, brain fog, etc. I was planning to increase exercise again now that I'm feeling better but thank goodness I saw this video first! I'm going to be very careful going forward and just do my PT stretches and a modest amount of walking (like 10 minutes at a slow pace once a week).
Thank you for covering this!!!! The amount of friends I have now bedbound after being forced to do graded exercise therapy, and friends here in Australia having to do it to prove they have tried all therapies to qualify for disability home care supports is outrageous.
"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.
How great would it have been if they'd included an equal number positive testimonials from the control group though?
"Yeah sure, I like being in this trial. It's been months since a healthcare professional last pressured me into painful exercise or gaslit me about my symptoms, and actually I do feel a bit better ☺️"
The issue is, they did so much harm. So many doctors (who may simply be misinformed, not keeping up with the research, or simply lazy) still continue to recommend me graded exercise therapy inspite of me bringing up PEM.
Thank you SO very much for covering this.
I was at an intersection of poor diagnosis and misinformation around CFS/ME in my adolescence when I was facing debilitating OCD with somatic obsessions and agoraphobia, but had extremely low insight. I was written off as having CFS and left without any meaningful therapy for the conditions I did have for years, missing several years of high school.
In adulthood I specialized in OCD treatment, so have been plenty aware of how I fell through the cracks of psychiatric diagnosis, but this study highlights how damn primed both the medical and psychological community are to fail both those of us struggling with CFS-adjacent psychiatric symptoms and those who have ME itself. Gah this is such important coverage, thank you for speaking out for communities who've been failed by the fields.
Thank you for this video. As ME usually has a viral trigger, cases have been climbing dramatically since the start of the pandemic and many new patients are being subjected to harmful “treatment” based on this sham of a trial. People with ME need true biomedical research. I encourage everyone to check out the work of real ME researchers like the Open Medicine Foundation collaborators. That is where hope for real treatment lies.
How the hell did this go through peer review?
Indeed. To publish in such journals there are so many so-called professionals who see the manuscripts. All of them, across the entire chain, failed. It's easy to blame publishers, and they are certainly to blame as well. But we have to accept other truths as well. The scientific system itself is broken. There are little or no career or even legal consequences for being a fraud. Peer review died decades ago. Universities are utterly failing to vet their employees. Etc.
peer review are no longer reliable. you can buy a peer review or they have room temp iq. see the peer review about a mouse made by ai
How the hell incest is still happening today?
Because researchers/clinicians/society have deeply ingrained, preconceived notions about ME/CFS. Why be suspicious of what is being claimed if you already think that it is most likely true? These were some of the most distinguished psychiatrists in the UK from highly regarded institutions with egos bigger than their reputations. Plus there were absolutely no other large studies on ME/CFS to compete with this hypothesis because it is one of the most underfunded common disorders in medicine.
Because it said what everybody wanted to hear.
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 have been living with CFS and fibromyalgia for about 15 years now and I've had a lot of time to look into these conditions. This study not only doesn't match my experience, it doesn't match those of anyone with ME/CFS that I've ever known. I've tried CBT, exercise, physical therapy, various medications and a number of "alternative remedies" not because I thought they'd work but because I am a spiteful cow and I like being able to tell pseudo-science shills that their snake oil didn't work at all. So, what does work? Medication and pain management strategies have been the most successful treatments, I still can't work but I do have a better quality of life than I would otherwise so that's something.
Thanks for covering this. It’s vindication for my dad who has struggled with CFS/ME for more than a decade. It’s vindication for me, having had four COVID infections and never returning to ‘normal’. Of course the government would sponsor this. The same government that has failed to recognise the extent and severity of long COVID within the population, whose symptoms look a lot like CFS/ME. And then we have to listen to politicians remind us that we’re ‘economically inactive’ and a drain on the nation’s finances.
The Lancet published this?? Did they even read it first?
My grandmother had that for years, until the day she died in 1996. I watched her suffer with it every day. Doctors back then basically didn’t believe her
One thing to consider. A criticism of the trial is that many of the patients didn't have ME. Well the horribly poor performance on the walking test in all groups suggests these people and a pretty significant physical impairment of some kind.
Exactly what I was thinking - reported fatigue is different than ME
You can have horrible performance on a walking test juat because youve been severely sedentary
I have a similar neuro condition that was originally labeled ME/CFS (it's a form of dysautonomia) when it started. The more I have learned about this mess in the UK the more angry I am for those patients. I can't even imagine. It can be completely debilitating. This genuinely seems like some kind of sadism.
Thanks for covering this. I've had this awful illness for a while. We need lovely folks like yourself to cover it (because we can't). Cheers.
Thank you for covering this scandal.
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.
I have a love hate relationship with the term. I think the issue is more that fatigue as a concept is considered to be analogous to “tired” for most people when really for me/cfs a more accurate term would be exhaustion. In regular day to day activity “normal” people very rarely experience complete mental and physical exhaustion. But that’s the accurate comparison. I try to make it clear to others that when I’m talking about fatigue I mean that state where your body starts to malfunction and shut down.
I still talk about my level of fatigue in a given day because as a concept it’s still helpful to me to understand and track my symptoms, but when trying to communicate that to other people, I find a good starting point is to have them talk about the most exhausted they have ever been, and how that affected them cognitively, how it made making decisions and thinking about practically anything hard.
excellent video! I have ME/CFS (along with a couple other chronic illnesses/conditions) and it's incredibly frustrating to hear over and over that we're at fault for our illnesses for "not doing enough" (whether that's exercise or therapy or some new shiny diet or whatever else). I'm in a few support groups and organisations for people with my chronic illnesses and the vast majority of us with ME do try to do some exercise despite our PEM just to keep our muscles from deconditioning and atrophying (also, PEM isn't a consequence of just physical exercise, it can be due to mental effort as well). the issue is that what counts as exercise to us, doesn't for people without this condition. many of us are also in therapy. living with this shit is hard, none of us want this. we're trapped in our bodies and isolated. to the people that think we're just lazy and want to be paid to stay home like it's a vacation, how did you like the lockdowns because of covid? did you enjoy not being able to leave the house, not being able to see people for weeks on end? or did you find it boring, depressing, lonely? weren't you dreaming of being able to "live again"? I'm not saying there aren't bad actors and people that do want to get paid to do nothing and stay home, but the vast majority of us with ME aren't doing that. we want nothing more than to be able to lead a normal life. but we can't. I can't even get a remote job to work from home because of the cognitive issues I have. no one wants to hire someone that can only work in 10 minute intervals a couple times a day and probably making mistakes due to brain fog.
They had no objective clinical tests?
Seems they wanted to prove it was all perception and did everything to get the result.
You could answer this question for yourself. assuming this study received regulatory approval, the regulatory authority will have required publication of the study documents on a publicly accessible web site. In the US, the URL is . The European Medicines Agency maintains a similar resource.
I'm sure the recovery *felt* very real to the researchers, despite it being all in their heads...
@@Suzanne4415you’ve heard of psychosomatic pain, now get ready for psychosomatic research results.
Thank you so much for making this video and drawing more attention and awareness to ME/CFS research! I'm a patient and a scientist who has recently switched fields to work on post acute infection syndromes. I hope this video encourages more public interest. I just wanted to note - my understanding of the normality issue is that the distribution of data points for physical functioning was non parametrically distributed for the adult population, meaning it encompasses a range of ages. The non-normality of this distribution has nothing to do with the way fitness changes over time on an individual basis, but DOES impact the way the standard deviation is calculated, which would significantly impact the numbers they come up with to justify recovery. That's why the determination of 60 as the recovery threshold is flawed.
Wow! As a person who suffers from ME and spends most of their time in bed watching creators like yourself and conicidentally a fan watching every video you release, I was hugely surprised to see you cover the trial about my own disease!
Thank you for sharing this abomination of a study
As someone with M.E. thank you sooo much for covering this. I will note that PEM can be caused by any exertion- emotional, cognitive, physical, or social. Our brains and digestive systems consume massive amounts of energy, and we have physiological issues meeting our bodies demands for energy. Often people have issues with social environments, loud noises, bright lights, or cognitively heavy tasks (myself included).
Anything to just be able to call them lazy.
Its so common for doctors to tell people with chronic illness to exercise and everything will be okay. I had a doctor's appointment that was only five minutes long and all the doctor told me to do was exercise despite me telling him I hurt too much to walk or even sit down (went to another doctor and got diagnosed with fibromyalgia), seems like this study made it so doctors feel more confident to give unhelpful advice and not even listen to their patients
This was industrial gaslighting through an astroturf campaign masquerading as a scientific study while flagrantly violating scientific rigor, objectivity, and ethics. Thank you for exhibiting the exact details of this smoking gun.
Well said
AKA all of modern science.
@@doltBmB I think you mean “commercial ‘science’” which as this video’s example shows with great clarity is usually a conflict of interest, rendering the notion of “commercial science” a contradiction in terms and unsceintific. There’s a big difference between this sham “study” and a genuine scientific one; there is such a thing as real, and modern/current, science but, as this channel often shows, the field is sadly as prone as other avenues of human endeavor to fraud, corruption, and perhaps more so than most to co-optation for its objectivist premise and credibility. It’s a big reason why institutional and public funding of science can be important and helpful. Let’s not throw the baby out with the bathwater.
This clinical trial was used to justify state sanctioned medical abuse of people with ME. Our voices over many years were ignored that CBT and GET, which were a product of the PACE trial, were harming many people. My health got alot worse after having these "treatments" foisted on me and I made an official complaint against the regional ME clinic. Thankfully after a long and hard struggle we managed to get NIH to withdraw these quack remedies in the new guidelines for ME which it issued in October 2021.
How can you make the intrinsic absence of blind trials worse? Give some random feedback to the subjects with a newsletter! 😳
(Random not in the sense that it would affect subjects randomly; random as in "neurons randomly firing in the head of the experimenter at the time of the decision")
That made me facepalm. Literally my forehead went right into my hand. I've performed studies, and I've participated in studies. A newsletter informing everyone of what's going on completely defeats the purpose of a blind study. This isn't science, it's a poorly disguised self help retreat.
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.
It's not surprising that the graded exercises group might see an improvement in the 6 minute walking test, but that doesn't actually mean their condition got any better. It's possible that they were able to eke out a bit of extra distance at cost of feeling more tired later. I feel like 6 minutes isn't really a long time
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!
Such a shame this ‘trainwreck’ has had a huge impact on people with ME in the UK. The first time I’ve heard about the newsletter, that’s so ridiculous it’s laughable. Thanks for an interesting and well structured video.
I don't have ME but I'm level 3 Autistic, so the excercise therapy thing sounds exactly like the flawed thinking behind ABA. You're just training someone to ignore their body's alarm bells that way.
yeah the medical system (if you can even include people in ABA) likes to treat the symptom not the person
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.
Get another doctor. Ask Dr. Nancy Klimas to recommend one. She has dedicated her career to identifying evidence based diagnostic protocols and treatments for CFS. I don't work for her, I was just treated by her.
As a 25 year old permanently bed bound, very severe cfs patient - thank you!
Watching your videos as a form of taking a break from writing my dissertation has become a routine at this point
Thank you. I am bedridden with severe ME. Everyday is the biggest struggle. It’s like I’m dying. We need help and treatment desperately. There is currently 3 young women being abused in NHS hospitals on the brink of death.
Check out Raelan Agle...think that's her last name....also Jason McTiernan on brain retraining . I've listened to one recovery story after another. Nothing from the medical community. But there is hope. I have been struggling with long Covid and just following a few of their recovery strategies I have been having better days. Jason had CFS 11 years and recovered completely in two months. It's not in your head but it is. A very physiological thing the brain is hoisting on you.
I pray you find the help you need.
Yes! THIS is exactly the type of content I'm craving for. A true crime style storytime about scientific, especially medical frauds and butchered trials! I could listen to this for hours!!! Thank you, Pete! Amazing job!
Great thanks to you for highlighting frauds in the name of science!
This what you do is so very important today.
If CFS was a psychosomatic, I would have recovered long ago. I've been fortunate to have lifestyle opportunities that allow that. But no, the underlying illness is still there and I eventually crash (PEM).
Thank you so so much for putting your mind, time, and energy into this. I’m in Australia and in order to receive a disability pension, without which I would have had to give up the meagre hours I could still manage at a job I loved {4 hrs a week}, and move back home to be cared for by my ageing parents, I had to have shown that I’d completed a program of CBT and GET. This was 8 years ago, but the Australian guidelines (written in 2003!) still recommend these treatments.
When the science is more concrete (desperately need substantial research $$$) this trial and the forced treatment of people with ME/CFS with exercise and gaslighting with be looked back on as incredibly cruel
Absolutely infuriating. I've lost 3 jobs due to ME, my willingness to work and exert myself is not the problem. In fact it's what's caused me to lose those jobs. Having dealt with DWP over the last few years I am not surprised they sponsored this trial since it fits their narrative to a tee. Anyone who's applied for benefits might notice an SF36 style ruling towards everything.
After during my masters I looked up to academia and the peer review process. During my PhD I realized it was garbage. But I had hopes for the hard sciences like medical research since I was in the super soft social sciences. Turns out, hard sciences are just as compromised. Terrible.
And the sad thing is, laypeople are going to blame science. Science is objective, but people are not. Bad faith actors like this damage the credibility of all of us.
I was a reviewer for two journals as a junior academic with no PhD, and I can't believe how terrible many reviewers are at their jobs (granted, it's unpaid and often farmed out to PhD students and other junior academics to do)
I have reviewed papers on acoustics and audio, and most of the time the reviews are in surprisingly good agreement. However, these are engineering papers with perhaps a couple of subjective listening tests so the scope for manipulation is very limited.
"Oh yeah, well why hasn't there been a retraction" is a really, really bad counterargument to "your methodology was flawed"
Regarding the newsletters; In what reality is introducing more chaotic variables into a group study a good thing? Isn't the whole point of a group study to reduce variables? Otherwise you could just query the medical database and get a gigantic sample and do a statistics paper.
@vorea Isn't the whole point of a group study to reduce variables?
Strictly speaking it is to control for the variables. In principle you can have as many variables as you like, as long as they are properly controlled for. In practice reducing them makes it a lot easier and more efficient, as long as the ones being studied are the important ones.
A core part of robust methodology is figuring out which variables to study and which to ignore.
As someone who suffers from ME, thank you for this video. Everyone needs to be aware of this disgrace of a trial. It’s ruined millions of lives and it’s so hard to get people to take this seriously now because of it.
That's what makes me so mad. I have lupus, but for a while my doctors thought I had ME. Now as a scientist, I understand this data. I understand what all of this means and how fraudulently it's being presented. But most people are not scientists, or even understand the scientific process like I assume most of Pete's audience does. So yeah, they're going to take this and run with it, just like they did with that awful autism "study". Correlation doesn't automatically mean causation, but again, most people don't understand that.
Getting no one to take the disease seriously was the entire purpose of the trial.
Excellent explanatory video. PACE needs to be retracted.
Thank you!
I have ME and it is very very debilitating.
I personally have very chronic Fibromyalgia, similar to ME/CFS. The way scientists and doctors treat invisible pain and exhaustion is horrific. There is no treatment for these people who are suffering every hour of every single day. Sleeping and awake. Thank you from the BOTTOM of my heart for bringing more attention to this. We cannot advocate for ourselves for they do not listen to us anymore. Thank you.
All they want is for us sick & disabled people to be provided less & less support until we stop.. :|
This is murder by austerity, just as planned.
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.
HI Pete, thank you so much to you and Dr Muller for raising the profile of the abuse ME/CFS sufferers have faced as a result of this trial.
Props to David Tuller for doing the investigation and continuing to work on this topic instead of just ignoring the response to his first article.
As a sufferer of a chronic illness that is often dismissed in the same way I am both horrified and disgusted. Thank you for exposing this study.
Thank you so much for covering ME!
The PACE trial was just such a colossal waste of time and money.
Been diagnosed ME/CFS for about 15 years. Was forced through graded excercise, CBT and pacing by the pain clinic and ME nurse. Made things worse to the point I developed FND/FMD/f-Dystonia. I couldn't walk anymore. And had to learn how again, which took 1-2 years.
Because I also have a (sort of) POTS dx. Probably have MCAS (but can't get tested). And have hEDS dx'd. So, not only do I experience PEM, but I'm also exercise intolerant. Which is a wild thing to balance.
There is exercise/activity that makes all my co-existing conditions worse and has to be avoided. There is exercise/activity that helps 1 thing, but harms another, so I have to limit it. And there's exercise/activity I can do. Sometimes. As long as it's balanced with plenty of rest. And I accept that I will experience PEM symptoms the following 1-3 days. And plan accordingly.
But, I went from regularly sleeping for 72hr stretches. To being able to do 2-3hrs of dance classes across a week. It took 9 years. And the PACE criteria made it go slower, not faster.
...Then, I fell down the stairs twice and had to start again. So it's not a 1 time and you're cured process. It involves setbacks. And you have to start from square 1 over, and over, and over again. It's hard.
I'm not back at how bad I was a decade ago. But I'm nowhere near were I got myself to. Despite medical intervention. Not because of it.
The PACE trial was an expensive disaster. And it ruined so many people's lives.
The study is a joke, but $8 million is actually pretty cheap for a biggish trial.
THANK YOU SO MUCH for covering this egregious fraudulent trial. I developed ME 4 years ago as part of Long Covid and it is a truly devastating life-altering career-wrecking disease. It is absolutely bonkers to me that this got fast tracked through peer review and that it was allowed to be part-funded by the DWP, that is an insane conflict of interest. Funny how at the end you mention the authors said that the new NICE guidelines have been criticised, well no prizes for guessing who was doing the complaining!! You have to wonder if they really are that delusional to stand by their work or whether they know they are wrong but are just doubling down for the sake of their careers.
You did a great job breaking it all down, very interesting channel, love your new direction, have now subscribed! Side note, I wouldn't describe ME as tiredness. I don't know what this horrific sensation is but its not anything that I experienced as a healthy person not even extreme tiredness/fatigue would describe it. It seems to be some other pathological phenomenon that science has not yet described, feels more like mitochondria dying and severe hypoxia at the cellular level.
I have secondary ME from chronic infections, and I agree. It’s not tiredness. It feels to me like my energy gets drained down and out my body (also have Pots) and then I’m steeped in what I call “pain juice” that feels like an acid that seeps in but it’s not burning it’s pain, the pain of a million little infected cuts and bruises, as well as the malaise of the feeling of coming down with a bad case of influenza where every cell is demanding you huddle under 3 blankets and cut out all sensory input, as well as being incredibly hung over and super sore from doing a workout 15 times over your normal capacity.
@@wplants9793 Sorry to hear of your suffering, I also have POTS too. Yes the poisoning acid feeling is awful! Its one of my main symptoms, I feel like my blood has been replaced with boiling hot battery acid. My brain can feel on fire and swollen, body feels like its been beaten with a baseball bat. There are just so many crazy symptoms aren't there, too many to list! What on earth is driving all of this. Let's hope we get some answers soon. I'm putting my hopes in the Mount Sinai/Yale group.
I was an endurance athlete before I got this condition. I had only experienced this "fatigue" one time, when I overtrained like crazy one week and my body shut down for 24 hours to get me to recover. I ran 30 miles in 3 days at age 15 as a mediocre runner and after day 3 I got the same kind of fatigue I now get just living a normal life. It must be total depletion of cellular energy.
@@TheSpecialJ11 Yes I agree I think that is what it is which then causes all kinds of downstream effects afterall energy is needed to perform all the functions of the body, once that gets depleted the whole system goes haywire! No wonder we feel so awful and it doesn't replenish energy as normal.
just a suggestion I think you could have talked more about the impact of outcome switching. I think it is devastating that when a per original protocol of analysis of the results shows a null effect.
Nobody would have participated if they had known about the conflicts of interest. There are no words to express just how screwed up the idea that people who work for the DWP, UK could in anyway be classed as unbiased, the organisation ruins people's lives.
Thank you for covering this.