Interview with Guardian columnist George Monbiot on the mistreatment of ME/CFS patients
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- Опубліковано 28 вер 2024
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Earlier today I spoke with George Monbiot, a British investigative reporter and political activist who has been a columnist for The Guardian for almost three decades. He and I have been in occasional communication in recent years over an issue of mutual interest-the scandalous mistreatment of patients suffering from the devastating illness (or cluster of illnesses) known as ME/CFS and, more recently, from Long Covid.
For years, I have been hoping that a prominent British journalist would take on the charlatans who foisted the fraudulent PACE trial upon an unsuspecting public. Last month, Monbiot gratified that desire with a scathing column that correctly characterized the treatment of ME/CFS patients as a “national scandal.” Needless to say, the column was widely read and received extensive praise from the ME/CFS patient and advocacy communities.
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I'm actually getting emotional at this. We've needed such public advocacy for so long. 🙏
It's a shame that George doesn't broaden his focus to the war against disabled people that has been going on for many years. In 2016 the UN found the UK government had committed 'grave and systemic violations of disabled people's human rights.' since then things have got worse and the new gov are equally committed to abusing disabled and sick people. It's a 360 issue and almost no one is paying attention.
Superb interview. Thanks so much, David and George. As a woman with ME for 17 years who has followed the terrible science and politics around ME for almost all of that time, it’s wonderful to know that the scandalous (mis)treatment of sufferers is now being recognised and written about by those who have a voice in mainstream media. The scientific evidence for ME being a serious, multi-system, physical illness has existed for decades and George is spot-on in his explanation of why, and how, that has been buried in favour of a false psychological theory which has served its highly influential proponents well, while people with ME have been disbelieved and gaslit by the medical profession, relatives and friends - the end result being that young people who should have had their whole lives in front of them (mostly women) have died ‘of’ ME (not just ‘with’ it). As George mentions, I too have noticed that these proponents of the false BPS (biopsychosocial) theory have been uncharacteristically quiet recently. I also believe that, finally, we’re in the final years of that harmful, dangerous and increasingly discredited nonsense being accepted as fact. I say ‘years’ because the NICE ME/CFS Guidelines which now recognise ME as a serious, physical illness, are still being resisted and ignored in large swathes of UK medical practice which still operates under the influence of those high up in the British medical establishment who are still trying defend their life’s work of shoddy science.
It’s unbelievable isn’t it. After 15 years of not seeing anyone the most recent request was met with a CFS clinic under the Psychology department. I mean talk about insulting! #pwME
@@madeleinethriftvip When I was diagnosed with ME/CFS it was by somebody at my local mental health clinic. The diagnosis was then disputed by the psychiatrist I'd seen years before and had issued a complaint over for inappropriate behaviour (which went nowhere). He then diagnosed me, without my knowledge and without even speaking to me again, with borderline personality disorder for which I don't even meet the criteria! Of course, my GP accepted this as he's the "expert". So although I've been sent to multiple ME/CFS "specialists" on the NHS (where I've been routinely blamed for not getting better because I haven't mastered their nebulous pacing rules), my notes say it's purely psychological! All based on a punitive diagnosis given by a lecherous, sexist psychiatrist with a grudge. I have lost all faith in the NHS at this point.
Thank you for making this conversation happen David!
And thanks for pointing me to it, much appreciated
@@mudmug1my pleasure
Thank you for this, I developed ME/cfs in 1985. It was fairly mild at first but has become gradually worse over time, I am now 80 and housebound, and life is very difficult. Some symptoms have improved due to long term taking of expensive supplements but the exhaustion just gets worse and worse, People like me have been disgusted by the way we have been seen and treated by the medical profession and the government. Wessely has been dirty word in the ME community for as long as I can remember.
Wessely is indeed a bad word!
Fantastic interview! Im so grateful to both David and George for all their work raising awareness on the outrageous ME/CFS scandal, they both clearly understand the terrible injustice. I look forward to hearing more from George about the Science Media Center, it would be great to see a Double Down News episode on this.
Great to see George putting his weight behind this scandal. It’s so easily dressed up as conspiracy theory until we get big voices talking about this stuff.
Great job as usual David (Stephen MIA)
Many thanks to you both for the great interview, and for supporting the patient community.
Great video. Amazing interview. Love that we are on george monbiot's radar that he has our backs. It's so mad how the reality of the ME arena and context almost sounds like a conspiracy theory - I tell you, reality is stranger than fiction much of the time. It's nice to see it spoken about openly and calmly, from a rational and evidence based perspective, with excellent research skills, simply shining a light on a genuinely shocking reality.
It has the exact shape of an insane conspiracy theory, doesn’t it? The mainstream of medicine wrong for decades, insurance and health businesses colluding with researchers, NICE getting it wrong until recently. Except medicine has done this with so many conditions before, until research evidence was overwhelming.
Thank you for this interview. 🚨Are you two aware that there are three women in the UK and one in the US (NY) have been hospitalized in either medical or psychiatric hospitals who are on the verge of death because of the manner in which they are being treated? This is NOT an exaggeration…they are emaciated and none of these hospitals are following the NICE guidelines. In fact, in some cases they are being forced into a form of CBT/GET that is making them worse! Please follow up on this…people on X are trying to help them, but this needs a major investigation. What’s happening with these patients is literally criminal! 😢
It's extremely scary. One of those people is in a hospital local to me. Even my supportive GP hadn't heard about it
Thank you George and David, much appreciate your work.
David and George, thank you both so much for taking the time to help highlight this issue
Excellent interview about such an important subject. Thankyou.
Top notch! I'm so glad George got back to you. It's clear he's been doing his homework on ME, and this interview was really useful for filling in some gaps for me on the history of the Revolutionary Communist Party.
Absolutely amazing discussion guys. Thank you 💙🙏🏼💙
Excellent interview -thank you
Brilliant interview - thankyou both
Here Monbiot is spreading conditions again by talking about them /s
I had no idea Monbiot suffered LC covid symptoms, thank you both for your work, it means a great deal to so many people
Great interview. Thank you so much.
This was an excellent and very informative interview, thank you both for this and for all the work you have done in this field! I would very much like to see more conversations between you two in the future.
Thanks so much for this excellent interview, David. It’s a relief to have George also fighting in our corner.
The PACE Scandal bears a resemblance to the Post Office Scandal.
Both involved people in positions of power relying on a conveniently flawed piece of science or technology - the PACE Study on the one hand and the Horizon computer system on the other - to gaslight the powerless. In both cases, those who pointed out the flaws were ignored.
So long as The Lancet fails to retract the PACE Study, it will continue to harm patients. It’s staggering that such evidently fraudulent work was published. That it has not been retracted after the NICE Guidelines were altered, in rejection of the study’s conclusions, should be even more staggering. Sadly, this sort of expedient laxity is what we’ve come to expect from The Lancet.
Despite being a serious illness, ME/CFS isn’t on the curriculum of most med schools. This causes a self-perpetuating state of apathy in the medical profession - it must seem a fair assumption by doctors that if an illness were serious, it would have been taught to them as students. This must change. However, it’s unfortunately reasonable to fear that it might then be taught by psychiatrists preaching the PACE Study and not by lecturers from an appropriate field teaching the NICE Guidelines. This must not occur.
The mainstream news media have, until now, not bothered to investigate the PACE Study. It has remained an open secret, known to patients but not to the general public. I hope George can change this and thank him for his commitment to this cause.
You’ve made a huge contribution, David. The patient community is greatly indebted to you and also to Tom Kindlon.
So very true.
Fabulous! The best interview i have heard on my awful condition , thank you so much , David and George
Fantastic interview! Thank you both 👏
Thank you so much. Great interview. Cheers from Sweden.
Thank you so much, very much appreciated.
Great interview. Sometimes truth is stranger than fiction. I'm chuffed that Monbiot is not dropping this.
One tiny criticism, David. Please say 'post-infectious' instead of just 'post-viral'.
excellent interview thank you both
I cannot adequately express the depths of my appreciation for both of you. Thank you.
A million times Thank You Thank You Thank You.
I look forward to the exposure of the Death Star that is Science Media for those of us affected by the psych paradigm that’s obliterated progress, attributed to the abuse of and caused great harm to those of us with #MyalgicEncephalomyelitis for decades. Thank you for this further insight outlining the unbelievable continuum
I've had ME/CFS for ~15 years (so first of all thanks for your work on this), and I've been on-and-off following George Monbiot's work for many years. I've been aware of the RCP lot, particularly their climate change denial output, for a long time - probably in large part thanks to George's reporting about them. But I had no idea that Sir Doctor Sir Wessely was involved with that bunch. That's pretty mind-blowing, but I guess it all fits together very neatly.
People are wierd . The idea that we cause and keep it alive it focusing on it attitudes very toxic positiveness affects us . I have many people think this way
Instead of saying "ME/CFS is real" - please say
"ME/CFS has 1 objective marker - the 2-Day CPET and ME/CFS has 4 diagnostic blood tests in development."
I think saying this instead really grounds ME/CFS in its concreteness which is s seen in the lab - but has not yet made it into the clinic.
Love this comment! Agree totally.
Can you tell me who's working on the 4 diagnostic blood tests, please? My M.E. is continuing to decline, and I haven't been able to keep up with research and announcements lately.
How can I find out more?
@@VickiLovesDoctorWho hey, OK I'm trying to remember this off the top of my head, I can't remember all four. But I know that there is a micro RNA test that's being developed by the open medicine foundation, Alain moreau is the lead researcher. They're using this in their upcoming drug treatment trials. It distinguishes between ME, fibromyalgia, and non patients. It's quite well established but I'm unsure why it isn't further expanded - funding for larger scale studies perhaos which is still very unforthcoming from the NIH. I did hear something about it possibly being put forward to the authorities in Canada to get approval to use it in labs across the country. Very promising and in the advanced stages is this one.
2. Ron Davis a while back found that a test called the nanoneedle could identify all ME patient's from the non patients, but it couldn't get funding to verify and scale it up. This has now come to the UK and is being studied by the ME association. If this one works at scale then it'll be amazing because it's cheap and easy to do. Which some of the others aren't. Think so far this has been tested also on MS patients and it is still holds true as a tested which is very promising.
OK I thought I could remember more than this but I can't. I know that several people have done research showing significant differences between ME and healthy controls but that's not the same as working on a test - it's the level before that.
Maureen Hanson did some work using proteomics that showed promise as a test but unsure how far it's got. Then of course there's the two day invasive cpet that the OP mentions - which is Carried out particularly by open medicine foundations David systrom - this shows ME patient's as distinct from health people.
And I think there is at least one other group dojng something with raman spectroscopy again but I can't remember. Hope this helps a little anyway. I reckon /hope we'll have a test within the next five years for ME. I think it's only funding for larger trials that is really holding things up. I could be wrong. But it's very hopeful out there. It's just a shame that things take so very very long when the funding is so small. To me it feels like as soon as we get a test things could well speed up, as it will interest lots of other parties such as drug companies, and that should speed the research for a treatment up dramatically.
Fiona Fox was also awarded an OBE and was elected an honorary Fellow of Royal Society. The history and implications are older and farther reaching than you may realize, and includes the highest levels of society…most certainly in the UK and also the US.
The first doctor i ever seen when i was starting to get sick decades ago....he was a war vet...he had an airplane propeller above his fancy desk.every time i went to him he would ramble on about all his war experiences...so full of himself,all the while i was very ill.
SICKENING. it actually just kept getting worse from that dr. On.
I was sooo nieve.
Then, i continued to be gaslit for decades.i kept going to different drs. Because i just thought sooner or later someone would find out whats wrong with me...they never did...i kept being told i just needed to "shape up"..."put one foot in front of the other"..."youre just sad"....then most of these "professionals" had signs on their desk saying..."verbal abuse will not be tollerated" so i would leave these offices and take my anger out elsewhere.imagine being gaslit for 35 years!!!! Thats my story in very very short form.
I could/should make a movie or write a book but im too sick
I didnt think a person could get as sick as i did. This has to be one of the worst diseases know to mankind...
HORRIFIC...is what mine is.i hung on for dear life...still am
Thank you
Thank you, George Monbiot, for helping the truth to be told about the hideous, frightening, and exhausting disease known as ME. I have lived with it since 1977 and can't say enough bad things about the expert psychopaths who push the bio-psycho-social model of patient abuse. I don't wish this disease on anyone, but for them I will make an exception.
Well one Dr who was a a hole to myself ended up getting it after another illness carma
I've heard them referred to as Psychosocialists. I think the name is fitting.
I knew this was a scandal from the getgo.
Ive been ill for decades and lyed to and gaslit for just as long.throw them in jail!!
I honestly bellieve they lied to me and dragged on my diognosis because we all know now that if not caught within 5 years, it seems it irreversable....i honestly think they know this
They did the same thing when CFS first came out it was all psych. But they never explained how these patients could of coordinated having the same presentation of symptoms vs. a classic syndrome of symptoms!!! They have all broken their oath!! They (hospitals) have no talks to patients about possible diagnosis or treatments they simply treat presenting symptoms of know diseases prior to cov. Its a disgrace that no treatment leads to death n they promote their practices!! Shame on them ! Every one of them should loose their licenses n let those who seek to discover or help these patients dominate the treatment of such.
It's a condition that hits all levels of human existence. It's torture on every level. And indeed, people and 'professionals' are cruel AF (pardon my French). I think if there would be a law they could put us down Like a dog, they would.
Reeling from this history! 14:00 😳
Stellar job
stellar
33:33 Woman and men also do many different things. e.g. around here woman tend to eat more fish (mercury), men eat more meat.
Please read Blind. See the film. Jose Saramago. Monbiot the star.
I can’t stand George Monbiot. I hate everything he writes. He is so biased, so unable to think outside the box. But… I want to hear what he says. Face the enemy, forgive etc. I do that because he has well meaning intent I am sure. I think he is a good soul. Even though he is very deluded, and unable to see anything before it happens. Blinkered .. but hopefully can learn and be a good voice.
Thank you for speaking on this subject. As a ME/CFS sufferer for almost 30 years I face the temptation of the horrid MAiD program in Canada. I do not want to end my own life because I want God to decide my expiration date not me. But the pain, exhaustion, loss of friends, loss of any ability to have a social life, loss of usefulness along with the total lack of empathy or willingness of people to take this condition seriously makes suicide tempting. We are a group of people who just disappear from life and we most often are not even missed. 😞
Im grateful you are here. You are valuable.
I’m sooo sad and sorry you feel this way - you are a divine child - trust him by keeping you heart open to him.❤
You are not alone, we are transmuting a spirit war - be the one that’s lets love and forgiveness reign 🙏😘
It's a nightmarish condition. Thanks to all who try to help.
Thank you both for your commitment to the topic and this discussion. I have had ME/ CFS for 25 years and have not been able to access any form of disability support in my country (Australia) despite repeated applications and appeals. The criterion used here is still the PACE trial, it serves social welfare institutions well as a means to disqualify a huge cohort of severely and chronically ill people from financial and medical support. As a result, the public attitude is that if you're not accepted by our national disability insurer, you're not disabled. Hospital doctors use it to send severely ill patients with ME/CFS home without investigation. And so on. It grieves me to hear that long Covid sufferers receive the same mistreatment. In ten years time, will we still be having to shout to deaf ears that post-viral conditions are both devastating and real?
That’s appalling.
Changing the NICE Guidelines is not enough - PACE must be retracted. As long as it remains it will cause harm. It should have been retracted long ago.
Thank you, David. T H A N K
Y O U
People with ME / especially those with severe ME have so much bad news these days it’s hard to stand it. It’s hard to fight for fellow patients who are being tortured by the “system”. It was so good to watch this video where you talk about the background to what is happening. You’ve been a stalwart fighter to get at the truth and it’s wonderful that George Monbiot also knows the truth and will investigate more. It’s long overdue that someone show as the Science Media Centre for what it really is. We sick people just sound crazy when we try to tell people.
I know it beggars belief !!!!. My m.e/cfs 25 yrs on..seems worse since covid 19
So true. Over 30 yrs
I’ve been sick since the ‘80s, too - having had to work when I knew I was too sick to do so, to prove I was not a malingerer.
It’s so easy to gaslight people who are too ill to fight back.
Brilliant, thankyou. Least we forget that children and young people also get severe ME/CFS, it's the biggest cause of long term school absence in the UK. Many will never recover, it steals childhoods and lives.
Micheal Sharpe hit an own goal attacking George Monbiot. Now Sharpe and co, are in the headlights for what they've done. And more is coming.
you love to see it
What Sharpe said about Monbiot makes me think that he actually might believe the nonsense he talks.
@@rsmallfield Possibly but more likely he was trying to primitively do damage control in squasing Long Covid before the world found out the damage he and Simon Wessely did to ME/CFS. It is also possible Sharpe is mentally unhinged himself. Definitely a narcissist.
The thing he and he foolish friends did was kept ignoring Post Exertional Malaise (PEM). The hallmark symptom of actual ME/CFS. Their Pace Trial didn't even have PEM as one of the criteria. So they would have had patients without ME/CFS in their trial. Thats either amateurism or intentional selection bias.
They also don't like using any of the biometric devices that show in real time people either improving or not, or worsening. They run for the hills when we suggest using aids like that. because we all know their studies would collapse with such data.
Another fault in their research is patients with ME/CFS often have a fluctuating baseline threshold that limits their ability for exertion. Yet Sharpe Wessely and White ignore that issue too.
Great interview David! Thanks so much for sharing it
Wow - fantastic to know George is investigating the RCP! Thanks a million for this interview, and for supporting each other with getting the story investigated & heard in full
Thankyou both so, so much from the bottom of my heart. Brilliant interview. Please keep doing what you're doing. Thankyou 🙌
Thank you so much to you both for bringing awareness to me/cfs, long covid and the systemic issues patients are facing. You may not know it but you both bring light to patient’s that are often suffering immensely. Thank you for believing patients, for speaking up and sharing the real science and for supporting patients.
Thank you George and David! You have said much what we want said. Nobody hears us but they do hear you so it is really appreciated!
Fascinating interview. Can't wait to read what George writes next about the Science Media Centre - and how it intersects with the terrible mistreatment of people with ME/CFS.
"[Journalists need] to grow the f**k up and be led by the evidence and not be led by things that people with impressive sounding names are telling you." Oh George! My hero :D
Fantastic, sincere thanks to both for making this happen.
Your closing words, George, hit hard, they are really powerful thank you for them and all of your work on this and same to David.
This is a must watch if you have ME or LC or know anyone who does. Thank you both
It just occurred to me that a strong case can be build to hold these people responsible for the long covid epidemic and suffering of many millions of people.
Gosh. I’m just 3 min 48 seconds in & there is no logic to say someone causes/brings something into existence just because they talk about it. It already exists! That’s illogical & absurd. It’s something someone would say who tries to not take accountability & shift the blame elsewhere. The timing of this interview is impeccable given the government’s recent announcement that GPs won’t be giving out sick notes. They say GPs are not objective enough to give them out!
It is logical if you know the history. This is a massive criminal medical conspiracy and it needs to be fully exposed as it’s been going on for a very long time.
Thank you for this. Please don't forget that mental health isn't just psychology- inflammation and infection etc can directly cause mental health problems due to physiological impacts on the brain and body (see pans pandas for instance). Other topics/conditions similarly affected, it seems, by blinkers and manipulation: ehlers danlos, MCAS, MCS, Fibromyalgia, Pans Pandas, FND, SSRI and other medication side effects and withdrawal.. Oh and Fii.
This group of people will be so vulnerable if euthanasia becomes legal. The harsh judgement from others and the difficult life that family and carers lead would be a huge pressure on sufferers to consider themselves worthless and a burden. There is also a misogynistic element to the lack of investment in research and help as ME/CFS affects women far more frequently than men.
We must group together to stop this happening
An extraordinary notion indeed.
Why its not pointed out more often can only be put down to years of programming and conditioning.
What a fabulous interview. Thank you for this. As someone with MECFS it is great to have someone on our side.
Thank you both so much, for having this discusson. Having suffered M.E.(CFS was a term introduced by the phychological side) for 32 years now, it was very refreshing to hear your views.
27 years for myself pain worst symptom now do you have hypomobility heds genes for it
@@Truerealism747 Post exertional malaise is my worst symtom. No I don't have hypomobility.
This is one of your best interviews, David! Thanks to both of you for the excellent conversation.
Same goes for chronic Lyme and post Covid shot lasting reactions, all in suspended state and disbelieved.
Post viral mitochondrial damage would be worth investigating. It tends to have a viral trigger, either ebv or COVID. Long COVID definitely involved the energy/oxygen transfer system. It felt like altitude sickness...
Lets get on with the law suits!!!!
I didn't know you had a YT channel Dave. Great to see you two putting your heads together! Horrific that SMS is still a thing though. I get the impression that the US version of Sense About Science is not so biased: do I have that right?
well, SMS in US did a smack-down of the PACE trial after I wrote my first investigation, and the SMS in UK got angry at the American arm. But the US SMS stood firm despite pressure from Michael Sharpe and others--I was impressed with that. I don't know if they've patched up those differences or not.
Thanks for the reply Dave. I think I must have been remembering the smack-down you spoke of. Good to know.
(Look out for an email from me in my offline identity. You may be able to help neutralise one of those early SMS tricks.)
Very informative. Thank you both for your continuous good work! 💙