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 ⬆️

• • •

Missing some Tweet in this thread? You can try to force a refresh
 

Keep Current with Roadside Mum

Roadside Mum Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @RoadsideMum

15 Apr
Ah fuck it. The handle that adjusts the seat height in the car has snapped. Worse still it has snapped at the setting RD uses- not the setting I use. I have sent RD out with a set of grips to put it where I use it and banned him from driving it. He's sulking. Tough. He can walk.
It means it has to be fixed before school reopens on Monday or I have to do the school run myself and realistically I can't.

We are now trying to work out if it can be fixed.
Bad news. If your car seat is designed to move and no longer does, it will fail the MOT.

We have established the worst case scenario- replace the seat entirely. Looking at around £110 if it comes to that.

Still researching if a less nuclear option can be identified.
Read 13 tweets
14 Apr
Oh My God.

I need to sit with the ramifications of this one for a while.

The fake-science that for years told ME patients they were either deluded or malingering... Was funded/supported by the DWP... So they could legitimise economic violence.

CAN WE RIOT YET FFS???
Just look at this.

The DWP apparently never before or since, funded a clinical trial.

Just this one.

This specific one. Image
Now look at this...

Data collected by Jan 2010.

All published 2011... Image
Read 6 tweets
14 Apr
Nearly forgot to tell you a freshly arrived tale about the Little One's exploits at school (with the boy who thinks he wants to be a Nazi).

Remember LO had an altercation with a boy who wants to be a Nazi? LO slapped him over it.

They had to work together on a project...

1/
Kids were put to work in pairs (not of their own choosing) to make a cardboard model of a village. They could put things into the village that they wanted to see there.

LO wanted to put renewable energy into the village and a badger set.

Mini Nazi didn't. (MN for short).

2/
MN wanted to build a military base and a bridge. The tiny foes were individually working at opposite ends of the village.

LO built some solar panels, before *accidentally* totally wiping the military base off the map, glue and all - then somewhat damaging the bridge too!

3/
Read 7 tweets
27 Mar
Policing in Britain has traditionally been by consent. Attacking peaceful (if disruptive) protests crosses a line into policing by force.

That this approach began in multiple police forces simultaneously right as the bill went to the vote, suggests it's new UK wide strategy.

1/
If it is a new UK wide strategy the only person who can be directing it, is Patel, as Home Sec.

Bristol didn't fall in line on the correct day (Fri 12 March- the Clapham vigil). Sussex did and the Met did, that's why their protests went sour. Bristol didn't right away.

2/
Here is a very senior officer at Avon & Somerset police, just coincidentally dropping by, to pet the lovely horsies, at 4pm today.

Today's police actions were purely responsive, yep yep, not pre-planned in person, this afternoon, and set up, to make a point, nope nope.

3/
Read 10 tweets
26 Mar
Been thinking about these threads...

1. Little One did a violence against a drawing of Boris, the bots/sock puppets were deployed. See here:

2. Little One did a violence against an actual child, and not one bot/sock arrived:

1/?
I realised this last night but wanted to leave it to rule out that it was simply a matter of the post not being up long enough.

It's potentially linked to how many likes and shares, as the post with the bot/sock attention was 10x more popular, but I don't think it's that.

2/?
What you have to realise is sock puppet activity may look like random bellends sounding off, but it's meant to. What sock puppet activity is, is organised campaigning to skew natural discourse and debate online, to interject more of a set perspective.

3/?
Read 10 tweets
25 Mar
OMG. Little One just filled in the gaps on a story we half knew...

Another child said he wanted to be a Nazi. LO smacked him and stamped on his foot. LO served a punishment for this crime (time out), and has just described the punishment as "worth it". LO has no regrets.

👀
LO said LO challenged the boy, and said Nazis were mass killers in ways too horrible to even explain and if the boy wants to be a Nazi he's an idiot.

The boy did not repent.

LO flashed angry and then slapped him and stamped on him.
The boy appears to have been treated with a cold compress. LO's teacher was very unhappy with LO for hitting but didn't defend being a Nazi (because that's obviously indefensible), however you aren't allowed to do that, so LO served time... (In time out).
Read 4 tweets

Did Thread Reader help you today?

Support us! We are indie developers!


This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Too expensive? Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal Become our Patreon

Thank you for your support!

Follow Us on Twitter!