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Richard Vallée Profile picture
Richard Vallée
@richardvallee
I play language. Mostly irreverent. Debugger. AI, global warming, integrity, healthcare & science. Chronically ill. #MillionsMissing #pwME #MEcfs
Aug 13 • 7 tweets • 1 min read
"Hey, giant medical research institution"
"Yes?"
"There's this weird medical condition that current lab tests can't make sense of and it's affecting millions of people"
"OK"
"So here's, like, over a billion smackeroos, figure it out"
"Uh... I don't know. OK, I guess?" 4 years and >$1B go by...
Aug 1 • 15 tweets • 3 min read
This article "Long Covid Defined" is published on behalf of the @theNASEM committee on #LongCovid and is published in the New England journal of medicine, one of the most impactful.

This is a big deal.

nejm.org/doi/full/10.10… The process of writing the comprehensive report is explained clearly, as is the choice of the proper name for this condition: Long Covid.

It confirms the early research done by patients, and decades of precedent for this type of illness, which has been psychologized & denied.
Jul 11 • 7 tweets • 2 min read
The hospital is basically trying to kill her. This is something severe ME/CFS patients face, health care systems following delusional models that reject reality.

When they die, they are usually left to slowly starve to death. This is what's happening here. They don't want to kill her, but what they want will kill her. Same difference. It happened many times before, and nothing ever changes. It is defended every time.

Most are never heard from. They don't have family advocating for them.
Jul 5 • 4 tweets • 1 min read
Having lived with a discriminated chronic illness for most of my adult life, I am sadly not surprised.

I have seen this behavior on a smaller scale, this is just an extension of the same failures.

Health is political. Health care is political. Medicine is political. Science and technology are what makes medicine work. All the parts that work rely on them.

Where science doesn't give predictive answers in the form of reliable technology, it's all politics mixed with ideology, old traditions and some mythology.
Jul 4 • 4 tweets • 1 min read
The idea of 'accepting' a chronic illness that is so openly discriminated that all forms of support are denied to most sufferers makes as little sense as expecting Ukrainians to just accept the Russian invasion and give up.

It's not going to happen. It's absurd. None of this is about acceptance, it's about silencing sufferers, about covering up a massive failure due to medicine's absurd beliefs in magical mind powers & its long tradition of failure at it.

Never work against human nature. It's not part of us to give up without a fight.
Jul 2 • 5 tweets • 2 min read
Some experts call being publicly subject to open displays of mockery and cruelty "social mystique".

It's one of the many secondary benefits that they imagine exist from living with a discriminated chronic illness, simply because they don't understand it. Of course it's all complete bullshit, patients constantly report how harmful this is, but they don't give a shit about that.

No, they've got snake oil to sell and they don't even need to convince a single customer, it's all supply-side economics, baby!

Jun 28 • 5 tweets • 1 min read
I see people mention how #LongCovid is now "recognized" as a chronic illness because a few institutions can't deny what was known and said by the patient community by Fall of 2020.

But.

ME/CFS has been "recognized" by the WHO since 1969. Still gaslit into non-existence. Medicine is a very politicized profession, everything that happens there is subject to whims and opinions, influenced by power and corporate interests.

An illness being "recognized" oddly means absolutely jack shit. Worth as much as a plastic participation trophy.
Jun 8 • 8 tweets • 2 min read
Almost everything in this thorough report was known by 2021. Most of it was known for decades, chronic illness long predates #LongCovid.

Sick people have been fighting this scandalous injustice for decades. We were right about everything. Somehow it makes no difference. In 2015, the same national academies published a report on ME/CFS, stating many of those things. This LC report goes even further at it, completely debunks decades of psychosomatic pseudoscience.

And it's unlikely to make a difference yet. Medicine is fundamentally broken. Quotes from the CDC, National academy of Medicine and the NY state department of health stating that ME/CFS is a biological illness, not a psychological disorder
Apr 26 • 12 tweets • 3 min read
One major problem with the viral persistence model of #LongCovid is that there are many illnesses where a pathogen is present in the majority of the population but only a small % develop the illness.

e.g. peptic ulcers and multiple sclerosis (MS) So there has to be at least one additional factor at play.

MS is now thought to be caused by EBV, the virus that causes mono, which is also persistent and can reactivate in people, usually when there is another infection or factor weakening the immune system.
Jan 17 • 4 tweets • 1 min read
The denial of #LongCovid, and chronic illness like #MEcfs for decades before, has perfectly followed the same path and process as climate change denial.

It's actually remarkable how similar both situations are. The arguments, the falling back to myths, tropes and tribes. And oddly enough, many of the people who scoff at climate change denial, even are alarmed by it, cannot apply the same criticism to their own similar denial.

That's also really remarkable. There is a flaw in our wetware that makes this happen. It's so easy to fall in the trap.
Jan 16 • 5 tweets • 1 min read
Oh yeah I'm sure that the systems that have been openly gushing about how it's only vulnerable people who are dying will be totally there for you or members of your family if your health were ever to falter Zero fault in that logic
Sep 14, 2023 • 6 tweets • 3 min read
Protocol violations in clinical psychology trials have become normalized. I have seen even worse than this, and this already rises to the level of fraud.

In the PACE trial, the endpoint for recovery was lowered below the entry point. In an $8M USD "definitive" trial.
Reanalysis of the PACE trial data according to its registered protocol showed the benefits were false, inflated by having lowered the endpoint to below the entry point. This turned a null result into a false positive. The authors explained this change saying they "preferred the definitions" that gave a false positive. They got away with it. It's defended.

This stuff is standard in clinical psychology. It's outrageous, and it's ruining lives. "We prefer the definitions of recovery we used to those used by Wilshire et al. as they give absolute rates more consistent both with the literature, and with our clinical experience. We also note that, even in Wilshire et al.'s analysis, the relative rate of recovery with CBT and GET was approximately twice that with APT and SMC alone.
Sep 14, 2023 • 6 tweets • 2 min read
Unfortunately, not only true, but very important.

This is the disaster that psychosomatics, the "biopsychosocial model of illness", has wrought.

Never discuss mental health with a medical doctor unless it is the only reason to see them. They will fuck you over, I kid you not. They will fuck you over because they are trained to. Mental illness labels have no tests, require no evidence. They are massively overused.

Medicine barely has the resources to do 20% of what they need to do. Mental health labels have been abused to triage people out, to save $.
Aug 19, 2023 • 8 tweets • 1 min read
After 3.5 years of #LongCovid, this is the complete list of effective treatments available to patients: It's the exact same as the complete list of effective treatments for #MEcfs and PEM, which have been known for decades:
Nov 21, 2022 • 6 tweets • 2 min read
Almost every medical and public health authority received some form of warning, internal or external, about #LongCovid.

They did not think it was worth paying attention to. A multi trillion $ disaster affecting tens of millions. Where is the accountability? Let me be very clear here: this was not malice. They simply did not believe it would be a concern. They assumed they knew enough about immunology to trust their intuition.

Immunology is where intuition goes to die. Precaution was demanded.
Nov 20, 2022 • 4 tweets • 2 min read
This cult-like pseudoscience cannot legally advertise in the UK because it's alternative medicine. It is warned against in some #MEcfs guidelines.

Yet it is obsessively promoted by some healthcare systems and research institutes. Pseudoscience promoted by medical authorities. This is very disturbing. It's basically The Secret as medical treatment, quackery no more valid that swinging a jacket around screaming "Christ heals you!".

And it's actively promoted by medical experts, beloved at GP conferences.
Nov 20, 2022 • 6 tweets • 2 min read
It's completely baffling that after 2.5 years, medicine is still unable to see that a main issue with #LongCovid (and #MEcfs) is exertion intolerance.

Not exercise, *exertion*, even minimal, and how it relates to post-exertional malaise (PEM), which it also cannot see yet. Experts are all about attention to details. The right details. The important details. Not just some generic stuff, but what matters here & now.

Instead we see obsessive focus on "primary symptoms", oblivious to the whole and out of symptoms that often aren't even problematic.
Nov 19, 2022 • 4 tweets • 1 min read
Genuinely surprised no one has voiced the "infections are good and needed for health" take with STIs.

Or why not with everything? Make washing hands or sanitary food preparation illegal. Hell, a mandatory swallow of toilet water for everyone per day! Gargled, not gulped. "Employees are required to plunge their hands 5 times in the toilet water before preparing food"

"Dirty mop water served fresh"

Guaranteed health plan for everyone!
Nov 19, 2022 • 5 tweets • 2 min read
I don't really know how else to put this but folks with #LongCovid, you are in deep deep shit and medicine is not going to save you. They can't. This is too hard for them but they can't accept it and are just stuck in loops, unable to even see it.

medscape.com/viewarticle/98… The paper does not support it, but the article physicians will read is that "life stressors" are "strongly predictive" of LC symptoms.

Either this neurologist doesn't know that this treatment model is what greeted and failed LC, or doesn't care. This is simply broken. Image
Sep 3, 2022 • 5 tweets • 2 min read
The reality of most #LongCovid clinics is that they don't really treat anyone, most simply discharge those who don't recover and take credit for natural recoveries and remissions.

They don't check either, they don't have to, they're not meant to be real clinics. This is how it's always been with chronic illness. Most LC clinics are built on the same model as so-called "fatigue" clinics.

They always did that, some even record patients who deteriorated as having recovered, because there is simply no oversight or accountability.
Sep 3, 2022 • 5 tweets • 2 min read
With economic data coming out showing hundreds of billions in lost economic productivity from #LongCovid, it's important to note that medicine has refused to recognize and treat chronic illness because it would be too expensive. Image Exact same logic as "saving" money by not fixing a leaky roof. The savings are fake, a lie, a delusion. They are hyped by simply not counting the total costs, only direct healthcare expenses.

Most of those expenses are happening anyway. A lose-lose-lose proposition.