Thread by @RoadsideMum

He's right.

It shouldn't take an Oxford educated, white, middle aged, privileged male pillar of the scientific press to get ill before any patient gets taken seriously, but now that @GeorgeMonbiot has arrived, perhaps at last, we can DO SCIENCE on #MECFS

When we DID SCIENCE (in the rest of the world in the last 2 decades, just not in England) we discovered biomarkers. We discovered findable, physical signs, that show measurable changes are present in multiple systems.

Yes. ME has been found. You didn't know that? Ask why not?

To be explicitly clear here, so you can be in no doubt, the words "immunological, cellular and neurological abnormalities" here tell you what has been found.

Biomarkers.

Broken things that show up if you look in the right places.

Immune system broken things. Cells. Nerves.

The WHO aren't cowboys. They also aren't intimidated by a British psychiatrist who was briefly celebrated as clever and important and who then did literally the textbook example of bad science to evidence it.

It's called the PACE study or PACE trial.

US med schools use copies of the #PaceTrial as a "spot the flaws" excercise for students. Like, learner doctors are literally trained on this study, it's that bad. No joke.

In the UK we are still pretending it's relevant. We even put it's authors in charge of #LongCovid!

A while back we used to say epilepsy was a spiritual failing. Then we found the biomarkers. Then we invented treatments.

Less time ago, it was MS that was psychological. Not so, once we invented MRI scanning.

PCOS, Crohns, PTSD... All revolutionised once we had the biomarkers.

Essentially medicine is fucking arrogant. If there is no test, medicine says, it is not we who are at fault, for being unable to detect, understand or treat this condition, it is the patients, obstructive curs that they are, insane and belligerent all.

Every. Fucking. Time.

And here we are, arriving on the shores of a global pandemic with 1.1m Long Covid patients in the UK alone (700k with serious problems that have lasted over 6m) with a disease that lo and behold, is nigh on the exact bloody same as #MECFS (only it has an antibody biomarker).

And it has finally sent the CONSPIRACY (yes I just said the C word) around classifying #MECFS as psychological, into meltdown.

Meanwhile, it's got bloody hard to ignore what I said, that HELLO, WE HAVE THE BIOMARKERS (thanks to work in labs like those in Utah & Norway 💜)

That's scandalous enough, right? Scientist does the worst science you can imagine, in defence of own theory (when I say worst you can imagine, they moved the goalposts so much mid way through the study, you can actually get worse and still be counted as having recovered. Really.)

It's not even the whole scandal.

There more!

PACE trial spent 5 years faking it's results too.

No way?

Yes. They absolutely did that.

How did they get away with that, you ask?

By having the Uni who own the data tell everyone who asked to see if they were being vexatious.

In the end an Australian took the University to court under the Freedom of Information Act, won, got the data, and leaked it.

You Sir, if you ever see this, are a hero.

Here's what it shows...

The PACE authors said 60% of people got a bit better and 20% recovered on their trial.

Trial used CBT (thinking happy thoughts) and GET (doing excercise) as a treatment.

The actual truth was 10% got a bit better and recovery didn't happen.

Looks bad right? Keep reading...

Turns out the entry criteria were so loose for patients on the trial it's possible a whole load of them never even had #MECFS in the first place.

Getting a bit better was counted if patients said they were, after a whole regime that told them if they don't, they are at fault.

This is why PACE is the prefered teaching tool in hyper-expensive US Universities for #medicalstudent teenagers, who want to be doctors one day.

Textbook bad science. Literally.

So anyhow we have the biomarkers, yay! And #ME is biological. (As is #LongCovid - clearly).

I am still getting my head around all the various new facets.

1. Biomarkers! Proof!
2. PACE debunked at Ivy League med schools (the US Oxbridge)
3. ME getting science investigator attention
4. Having passed the essential turning point needed before a cure can be found.

Something to be aware of @LongCovidKids ⬆️