Richard Vallée

In advance of your segment. Please watch. Doctors have been taught to gaslight patients with #ME for decades. This video from the 90s teaches GPs that patients are frustrating because they are mistaken about the cause of their illness and can often engage in arguments.

@natashadevon.bsky.social

Measles was eradicated with the vaccine, which is 97% effective at preventing measles.

Antivaxxers are the ones keeping people sick for profit.

Clip from yesterday’s BBC Radio Wales: Robert’s son has lived with #MECFS since age 11. Today is #SevereME Day and his 33rd birthday. At his worst, he was too ill to speak, turn his body or his head — and had to be tube-fed. Most doctors have no idea it can be this severe.

SequenceME: first of a kind genetic study - Action for ME A groundbreaking partnership has launched today. The partners are working together to secure funding for a study which will analyse the entire...

22) The researchers hope to look at rare genetic variants in a follow-up study called SequenceME. This will get an even more detailed picture of the DNA differences associated with ME/CFS.

Rare variants might have bigger effect sizes.
www.actionforme.org.uk/sequenceme-f...

1) The DecodeME study compared DNA of ca. 15,000 ME/CFS patients and 250,000 controls and found significant differences in 8 regions of our genome.

The Manhattan plot below shows the genes and chromosomes involved.

Let’s unpack the results 🧵

I am so embarrassed for humanity.

We had this disease eradicated. The process of keeping it that way was SO SIMPLE.

And because of a bunch of idiots, and bunch of grifters making public health into an ideological football, here we are.

Just a faceplant. A completely unforced error.

Clip: Professor Chris Ponting tells BBC Scotland the world’s largest genetic study of #MECFS has identified eight genome regions linked to the disease. He says the field is finally being kickstarted after years of stigma and neglect.

Clip: Tessa Munt MP tells Channel 4 News the government must fund #MECFS research. She says DecodeME proves it’s “not a made-up disease” — and that with recognition, if patients are not dismissed or treated like idiots, we will be a lot further forward.

Possible genetic clues to ME/chronic fatigue syndrome identified in massive study DNA analysis of more than 15,500 people with the debilitating condition identifies eight tentative “genetic signals”

Science: 'Possible genetic clues to ME/chronic fatigue syndrome identified in massive study'

'DNA analysis of more than 15,500 people with the debilitating condition identifies eight tentative “genetic signals”

“We urgently need more research...."

#DecodeME

www.science.org/content/arti...

Patients are the only real stakeholders here. No one else is anywhere close to having as much skin in the game. And we are systematically excluded from most of the process.

Plus, we still have most of the expertise. 5 years on. Which is pathetic, but it's what we have to work with.

The fact that Long Covid research has so far yielded very little, and that so many patient representatives have resigned in disgust from most research programs, are two sides of the same coin.

"Everything about us, in secret, behind closed doors" doesn't work here. It fails miserably.

What do these diseases have in common?

Asthma
Syphillis
Multiple Sclerosis
Myalgic Encephalomyelitis
Ulcerative colitis
High blood pressure
Stomach ulcers
Vaginal discharge
Huntingtons chorea

Because those systems are so tightly insulated and remote from the stakeholders, the patients, they judge themselves on their intentions.

And they refuse to even listen to criticism based on outcomes, on the complete lack of meaningful results.

And so they continue delivering disastrous outcomes.

Until the real stakeholders of this system, the patients, can influence it, nothing will change. The rulers of the systems are comfortable with indefinite failure, they refuse to adapt or even listen.

They have no real stakes in the outcomes. It all fails because of this.

At its core is a fundamentally top-down aristocratic model, where all the decisions about us are made in secret behind closed doors.

Where science offers answers it works out. Where it doesn't it's a complete disaster, but there's nothing that can be done to change it. The systems are intransigent.

Medicine has spent the last few decades not trying to fix this, but simply trying to re-label things.

It never works, because the underlying models are wrong, not based in reality, and there is no accountability for outcomes, results don't seem to matter at all.

No system can succeed this way.

A history that is just as much part of the present and the foreseeable future.

I always see this framed as a historical thing. It's literally worse than it's ever been, psychosomatic ideology has never been more influential & harmful than today.

Impunity is the main reason. No accountability.

Still from the TV show "The Office", a thoughtful man sits right below a white board where the words ""You miss 100% of the shots you don't take. - Wayne Gretzky." - Michael Scott" are written.

Excellent! We never know what will make someone chance on a solid lead, so we have to take all the shots.

Positive news!

The Senate Appropriations bill came out and utterly rejected the Trump cuts to NIH/CDC.

#MECFS funding is included in the appropriations language, in part due to @meactnet.bsky.social's battle to include it. A thread 🧵

bsky.app/profile/rich...

It only ever works where science provides answers. Because science works. Better than anything else.

Where it doesn't, things aren't much better than any old aristocratic system, where imagined benevolent dictators make all the decisions, about things that happen far from their perspective.

Because it's not accountable to the primary stakeholders: us, the people. Medicine is still stuck in reactionary models of the past.

Rather, health care is entirely decided as a supply-side system, everything decided in tightly insulated bubbles, everything about us, in secret, behind closed doors.

There is no amount of marketing buzzwords, like "patient-centered medicine" and "evidence-based medicine" that can put lipstick on that rotting pig.

The problems are substantial, fundamental, even. Trying to fix it with labels only shows how the profession misses the point entirely.

Technocracy doesn't work any better than aristocracy. The premise that just having smart people make all the decisions will work out is simply false, delusional.

Because they have no stakes in the outcomes. It is not their lives that get affected by their decisions. And it shows. Everywhere.

It's not a problem that is contained within the fringes of medicine, the areas it doesn't understand yet.

As we've seen in recent years, in dealing with a pandemic that killed 20M+ and disabled 100M+, the same problem seems to be almost universal.

It's everywhere, corrupts everything.

I have had the intense displeasure of watching how medicine fails with chronic illness for years, mainly about ME/CFS and more recently about Long Covid, and the complete lack of progress is almost entirely explainable by this complete lack of accountability.

Results don't seem to matter at all.

They feature loads of conformity, but that's entirely different from accountability.

Conformity will reward doing the wrong thing as long as it's what's authorized.

Accountability will reward doing the right thing even if it's not authorized, and will change what is authorized in response.

A profession can be old, even very old, and feature some of the most rigorous training programs, and it's all worth very little if there is no accountability for outcomes.

When you start noticing how health care and the medical profession are essentially unaccountable, it's impossible to ignore.

Professionalisation is defined by two key elements: 1) rigorous training, and 2) accountability.

Training is all well and good, but it's only because of accountability that any such training is worth a damn.

There has to be consequences for failure, and a professional obligation to learn & adapt.

This is Isla at age 8.

She died at age 18 with severe ME/CFS.

Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.