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I've suffered with this hellish condition ME/CFS since early 1987. The existence of this illness is a curse on all who are unfortunate to get taken down by it (often in the midst of great times). The press and a lot of the medical profession (is "profession" the correct word in this case?) have practiced self-delusion that seems to have been born of innate cruelty.

9:15 what's going on is the medical industry in cooperation with those in power caused ME.

The biopsychosocial model is the modern-day version of demonic possession as an “obvious” cause of illness.

Obviously they don't know who they are dealing with. They have hugely underestimated you and your tenacity and knowledge. You go girl!! We need you. Disgusting what you are dealing with and up against.

Nothing surprising about anything you have said. 😢 You are very brave to fight for Mauve and for us. God Bless You. We need well, caring people like you to fight for us. I so appreciate your efforts. I live in Canada. ❤ and doing everything I can to get well and nothing works and as you know, it is very expensive to be ill. You are such an amazing, intelligent, caring woman. I will follow your journey if possible.

I'm shocked that she didn't mention the other thing. Sad that we live in this evil cover up world. There are life destroying injuries everywhere you look now. It's impossible to genuinely miss

Thank you for raising awareness. My life was health and fitness before I got sick. I find it difficult to accept that the “professionals” can believe in something like depression which has zero biomarkers but can’t believe in illness like ME which has numerous obvious measurable symptoms.

True Long Covid is very rare. Long 'the other thing' is seemingly more common and disabling as time goes on.

What george is conveying,is what is going on in labours dwp witch hunt against disabled people. They are dismissing serious mental health problems as 'feeling down' and declaring being in work would help their mental health. It is the same gaslighting that me patients have been subjected to for decades. Fibromyalgia patients were also gaslit for decades in the same way,with gps having never heard of it . Even though a conference of neurologists defined the symptoms and the way to diagnose it through examination and completing patient questionnaires. If the patient has most or all of the symptoms that are listed ,then this is the only way to diagnose fibromyalgia. It does not respond well to medication as the extreme,widespread, persistent pain levels are caused by 'misfiring ' pain receptors. The pain is real but medication does not stop the pain. Labour should not proceed with their inhumane drive to reduce benefits claimants but should instead acknowledge that it is austerity,poverty,terrible living conditions and trauma from constant stress and financial,food and fuel uncertainty that is the root cause of a great deal of serious mental health conditions. Coupled with lack of access to healthcare,mental healthcare and effective treatment,there has been no improvement in the quality of their lives. At the end of the first six months of labour being in power they have gone even further in persecuting already vulnerable people claiming their entitlement to benefits. They have decided to rollout the uk vai version of 'robodebt'. It is the worst scandal that austrailia dealt with since the new government in austrailia ordered a royal commission into ai that falsely flagged benefits claims as fraudulent,yet not one msm outlet has pointed out the disaster that austrailias robodebt proved to be. The guardian produced some terrific reports about it but no one else. A senior civil servant declared,he hoped it would not turn out to be as bad as the horizon disaster in the post office corruption scandal. Medical gaslighting is a huge barrier to accessing diagnoses ,treatment , support for care ,benefits and suitable housing. The un handed a damning report to the uk government that proves that successive governments are denying disabled people their human rights. Labour is well aware that dwp are responsible for overpayments,denying benefits which caused many tragic, avoidable deaths and that dwp has lied to coronors courts,refused to supply evidence collected in dwp reports and have also witheld vital evidence as was the case with errol graham and others. I would love if george wrote an article highlighting all of this and to ask labour why they are continuing with the tories policies of not publishing dwp reports into the harm that universal credit,pips,capita assessments 'mistakes' and ai are having on benefits claimants including starving to death,suicides and extreme poverty and deprivation of services. Labour should drop the ai bank spyware that caused austrailias robodebt disaster,which was implemented to bring down benefits claims by identifying fraud. It did not identify real fraud but falesly flagged innocent people and villified them as criminals.

In 19th century novels it wasn't unusual for an illness to permanently break the health of the patient. Particularly women. Since vaccines and antibiotics, we have forgotten how widespread this used to be.

Oh look two George interviews popped up on one feed.. this chap was happy to promote the MRNA trial experiment on the population not so long ago so the fact that he’s now trying to call this out seems a bit.. hmm two faced, insincere , fake, double standards.. agenda fulled opinion. No surprise coming from a Guardian “journalist”.

No updates on decodeme? No clips no updates on the website.

Very interesting i have been diagnosed with Fibromyalgia, i suffer with chronic pain and chronic fatigue. What's so upsetting about it is being made feel like this us in your head and you can fix it with excerise and mindfulness. 😢 So frustrating so depressing. I am trying everything to feel like i used to . Its really hard to take.

15 years of pain, loss, gaslighting, neglect & abuse have taken a toll on me. ME is a living death & noboby would chose this. I'm angry. I refuse to go away quietly.

Awesome thanks for all your hard work!

Note: there is a difference between mental health and mental illness. The accepted use of the misuse of the term mental health to denote a problem is like talking about the emporer's new clothes. So. There. Or, is my assessment wrong? Is health an illness?

Thank you

So many people doing some great work. If we can join up resources real change can happen

"During the pandemic, both she and her husband developed ME after acute bouts of Covid-19". Doing the government's work for them by helping to bury Long Covid. You get Long Covid from Covid not ME. Your doctor has sent you on a path of ignornace. You talk about your area of expertise. Mine's ME for a decade before SARS2 infection. They're different illnesses. Please stop the conflation. Think of the children being disabled and dying, the sudden deaths in all ages, the strokes, heart attacks & cancers. Not seen before SARS-CoV-2. Make it make sense.

I'm watching! Thanks Karen and Dave. When Karen described discovering ME it reminded me of the day I realised "my little problem" might be ME in 1996, after 10 years asking doctors what was wrong. I had been without need to know information all that time and had no idea ME even existed. Pure coincidence that I switched on the radio when Esther Rantzen was talking about her daughter and it all clicked. The media matters and you two are doing a fine job. I do hope James improves as you did Karen.

Interested to know how to get more involved with the campaign - can’t find it on Facebook which is my usual route for comms. I’m a severe bedbound patient - former comms specialist in a uni for 20 years. My husband is my carer and he’s also a recently retired GP who maybe helpful to talk to, have as a signatory on letters/petitions etc. He is also in touch with our local MP about my situation. I’d love you to have her on your list for any future parliamentary comms.

Great interview - thanks!

It's been speculated that within the ME patient population, there may be several different sub-groups in terms of symptoms or cause of the disease. I'd be curious to know if that was reflected in the findings of this analysis - did they identify any distinct clusters within those 116 traits? And a slightly more exotic question...since so many ME patients have swollen lymph nodes, wouldn't an analysis of lymphatic fluid make sense as well?

Very helpful to get an overview of this study and understanding its limitations. These findings can create a great baseline which other research can build on and refine. The heterogeneity of ME symptoms makes it difficult to study when sample sizes are small, but with so many patients in this study robust signals appear.

Machine learning 👌 Good news about using these tools 👏

Thank you both and everyone involved very much for your hard work

👍

Simon Wessely should be in prison. How he sleeps at night god alone knows

There’s a background lighting issue here that’s not easy for cognitive and visual problems. Just highlighting, accept it’s not always possible.

Thank you!

george = propaganda

Unfortunately, the medical community seems to have a stake in viruses being found to cause long term disability. What is clear to me after 45 years of mild ME is that yes, most people who get viruses recover, but there is a sizable cohort that will NOT recover, and need long term care. The group think about viruses is holding back medical professionals from realizing that viruses can be way more damaging that they have been taught to believe. I wish there could be a class action law suit, workd wide, against the disability industry and the biopsychosocial cabal to expose who paid whom to tout the biopsychosocial nonsense. I would so like to subpoena the financial records of all involved.

Thank you!

Thank you!

I’m intrigued with your background in this science and how I can find out more about you as ME isn’t really having much success in the medical field?? Seems so many with this

How do you feel about epilepsy and why or how this affects epileptic patients? Is this connected?

Usa givt , big oharma supresses it..when greed + power rule , humanity 22:07 suffers, covid is here to stay, ,+, no one cares, western med is failing us, the hidden millions😢❤️

Tu im long cov w several cormobidities, PCP dusmissed me + i am highly educated , was pre med, even after all this work, reaearch , grants, etc, its not dusseminated to dr, interrns..no one wants to hear about it..i have whke body dysfunction, tu..

Love George, thank you so much for this!

As a fellow victim let's be clear it's not covid that did this. Its the thing that was supposed to prevent covid that we took that did this. But it will never ever be acknowledged

It's not long covid it's long spike automanufacturing. Evil people done this

ME CFS has increased a heck of alot over the last 3 years. Evil evil people in charge of us

What a load of bollox. Communists have taken over science, that's something you read on extreme right wing websites. Nut jobbery from Monbiot, who is himself a stooge of Big Pharma.

I'm not sure of the accuracy of this article. Possibly the name is only similiar to the group a friend of mine was in--are you sure of the name?. They were picketing South Africn House when I met met my friend in 1984 so others in the group. They never moved to the right or the extreme right. My friend had been a biologist before he became a writer and retained an excellent grasp of science. Claire Fox was never a member of this group so I suppose it is distinct. My Chinese partner had something like ME also known as chronic fatigue syndrome. She lived with a clinically mad and very ill man caring for him over near 13 years. After years with me her fatigue lifted after a she took and takes a medicine against her mental disorder when she made a fairly good recovery against ME. The Chinese doctors said she suffered ME the British she did not. I have just wondered--from this experience--if ME might be connected to insanity.

As a PWME, since 1987, triggered by shingles, I want to thank you both from my tired heart for raising your voices for us

Excellent chat. Very interesting

Thank you for this interview. It definitely highlighted some new information that I was not aware of. I would however, highlight that the description here of "far right libertarian" here is not correct; "libertarian" and "liberationist" have historically been used interchangeably, but are now relatively well defined, and I would consider this philosophy to be far more "liberationist". Libertarianism provides individuals freedom from state oppression, whilst liberationism provides individuals from all oppression; including from reality itself, enabling them to live within whatever version of reality they can construct within their own mind. A libertarian would recognise an employer's right to provide low wages to an employer (as part of a negotiated contractual agreement), whilst a liberationist would see a low wage as oppression. These ideologies have some overlap, but Libertarianism is often more emperical and liberationism is more rationalistic. The reason that the science described here does not conform to our understanding is that the definition of "science" to a liberation theologian is different to Aquinas' "scientia" - perfectly cognising something by understanding its cause, and more akin to Hegel's "Naturwißenschaften", which places truth as pure self-consciousness in the development of self. The concept of entryism is also interesting to me, as this is the model as outlined by Antonio Gramsci, who identified that that Marx's historicism (also considered to be "scientific" in the Hegelian sense) was incorrect, and that a revolutionary Vanguard was necessary, à la Lenin. Gramsci outlined 5 vital areas for entryism: Family, Education, Religion, Media and Law. Once these areas have been subverted to create a new cultural hegemony, revolutionaries need to be eliminated to prevent further revolution away from the newly established hegemony. Mao followed this model when he eliminated the Red Guard following his revolution. Following Mao's catastrophic economic policies, Deng introduced a combined socialist/capitalist model; whereby private industry is actively encouraged, but highly regulated to operate within the government's allowable tolerance. It is easy to see how this suppression of conflicting ideas and promotion of individual enterprise is conflated with "far-right"; however, it is the farthest thing from "libertarian". Within the Dengist model, the aims of large governments and large corporations converge such that they support eachother. "You don't need a formal conspiracy when interests converge" - George Carlin

Thank you so much for this discussion and the acknowledgement of the suffering of so many with the horrendous and lifelong chronic illness M.E.

Excellent interview David and George 👏 It's bad enough learning that the SMC and gaslighting of pwME emerged from a hardline political ideology. Journalists who far too easily slap these bastards with the 'expert' label and unquestioningly accept what they say as 'fact' only serve to magnify the problem.

Thanks for this @Dave and @George. I hope it gets the attention it deserves at last. I've been rather out of touch with campaigning on this, since the internet made it possible for us housebound to manage living without normal capabilities, but I remember that SAS/SMC got going through influencing media skeptics like Ben Goldacre, and people at the BMA and Royal Society whom the public saw as above reproach. Also Fiona Fox's sister Clare, and other Spiked 'science advisers', had the BBCs scientific, environmental, and medical, output already sewn up for the contrarians, on every new public concern that came along. As well as killing research on ME, and turning its sufferers into criminals (I spent 3.5y in psychiatric detention and mental torture for the crime of expecting help from the NHS), they together, put the brakes on action against climate change, for decades. The BBC must take a large share of the blame for all the suffering of patients with poorly understood diseases that were captured by the psychobabble cult. They were constantly spreading the doctrine that patients were being harmed by too much testing, while sufferers were having doors slammed in their faces everywhere they tried to turn for help. Thanks to you both for keeping up the pressure on our behalf. At least we now have more advanced scientific techniques avail able to researchers, and can even do some testing ourselves at home, that gives real data to fight back with! If only we'd had the internet and Google and easy access to science papers, Wikipedia, and professors on TH-cam 40y ago!!!...