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The PACE data have been released (9 Sept 2016)

Research 1st

Research 1st

Severe ME, POTS & MCAS.
Messages
768
I wonder what students attending QMUL who have mild to moderate ME/CFS make of their University blowing 1/4 million pounds on trying to block the release of PACE CFS data? It must be really embarrassing for the students, knowing how bad people think of them in society already.
 
Snowdrop

Snowdrop

Rebel without a biscuit
Messages
2,933
They've had a month to strategise and consult legal experts (of the kind who likely don't mind playing dirty).

I think the ME community need to also take a breath after celebrating and think about how to proceed moving forward with the release of data. I know that the info is in the hands of Alem Matthees who I understand is not well.

Perhaps some legal advice of our own would be good.

I would not put it past the QMUL group to have some strategy in play pending what we do next.

FWIW, I think the more all people know and have the facts the better our situation is. We need to ensure that PDW does not try to hijack the narrative again.
 
Y

Yogi

Senior Member
Messages
1,132
Kati said:
I didn't like this press release. QMUL is still protecting their assets and seem to be sending plenty of warnings.

Statement from Queen Mary University of London (QMUL):


Basically they say they will release the data to one person, Alem Matthees

.

1) Forget about the unlocked cabinet and stolen recordings.
2) Peer review? What peer review? Were the peer reviewers bribed in any way?
3) This tells me that QMUL will be on high alert on how this data will be interpreted, and shared. They are sending warning signal that perhaps they will use legal proceedings to protect theor assets.



QMUL's rules:'our way or the highway' has prevented critical eyes over their data and their study conclusions. Lancet has protected them throughout. Here once more they are sending warnings, stressing 'confidentiality of data'. They are still hiding behind the concept of de-identified data to prevent the truth from coming out.



Still trying to save face here, standing their grounds and they will continue to fight for their principles. Basically they do not like it at all that they are dealing with vexatious patients and vexatious demands, but then that idea has been squashed by the ICO tribunal. They are not raising a white flag here.
Click to expand...

That is all bluff, bravado and PR/legal guff. Let us not let our guard down but time to relax, celebrate, and then continue to fight for our human rights as they are now on the back foot.

:):):):):star::star::star::star::trophy::trophy::trophy::trophy::music::music::music::music::mug::mug::mug::mug::mug::wine::wine::wine::wine::beer::beer::beer::rocket::rocket::rocket::rocket::balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons::):):):):):):):)

Thanks to Sir Alem Mathees and everyone who has helped in this. I have knighted him this afternoon for Services to Open Data and Science.:thumbsup:
 
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Simon

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
Patients should never have had to go to court to get this data. It's our health, we have the right to scrutinise claims about what works. Sadly researchers interests are not always aligned with ours, and when it comes to clinical research, patients' interests should take priority. Why else do the public fund clinical research, if not to benefit patients?

(And huge, huge thanks to Alem Matthees for fighting a long and incredibly demanding battle to win this for patients - not to mention it being a win for open science.)
 
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Research 1st

Research 1st

Severe ME, POTS & MCAS.
Messages
768
Kati said:
I didn't like this press release. QMUL is still protecting their assets and seem to be sending plenty of warnings.
Click to expand...

Maybe some in support of fraudulent research claims are confused they're in North Korea? Very Bizarre and like something out of 1984 where we are all reminded 'Big Brother is Watching You'.

The bottom like is: British CFS ME patients cannot donate blood, (including pregnant women who develop CFS during a pregnancy) so have a potentially communicable disease. British PVFS patients (a former term for ME) also cannot donate bone marrow, both when alive and deceased! Again, evidence that PVFS/ME is seen as infecting bone barrow tissue and being potentially communicable again.

To conclude: ME, is an organic disease process and the World Heath Organisation accepted this in 1969.

In addition, it is against the Human Rights Act to imprison a person using a political ideology that makes them suffer mentally or physically. (This includes denial of potential medical treatment on the grounds of a universal misdiagnosis of mental illness in those without).

CFS ME is not categorized as a mental illness, but is being treated as one - a breach of human rights laws, which the UK subscribes to.

The PACE trial confirms, that even if you select patients with mental illness fatigue, the therapy given to those without (ME CFS), still doesn't work. Therefore maintaining recommending CBT GET for organic ME CFS states, is a medically fraudulent act.

Maybe some are in denial they are potentially now a historic accomplice to a crime scene?

Isn't a Government using a ''therapy'' that kills very severe patients (via medical neglect - as the therapy said to be beneficial is actually useless) illegal under UK Law? I don't know, I would certainly hope so. Maybe a Human Rights Lawyer can start the ball rolling?

Question:
If you prevented appropriate medical care on grounds on the basis of race, gender, sexuality, religion it would be outlawed and prevented. Why is is acceptable against ME CFS sufferers?
 
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eafw

eafw

Senior Member
Messages
936
Location
UK
A Tribunal has concluded by a 2:1 majority that certain PACE trial data should be disclosed to a member of the public

What does "certain data" mean - only some of the data and not all of it ? And as others are wondering, what pressure will be put on the individual as to what they can do with the information ? Not celebrating until the results from a proper analysis of the full data set are available and the lies everyone has been fed by the bps brigade are made public headline news.
 
O

osisposis

Senior Member
Messages
389
can someone give a short recap of what has happened here? I understand UK pulled out on funding saying ME/CFS isn't real but that's about all I know, can someone fill me in please?
 
JaimeS

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
For CFS patients, CBT can be useful by helping them pace themselves and avoid the push-crash cycle in which a person does too much, crashes, rests, starts to feel a little better, and then does too much once again.
Click to expand...

Awful and stupid but better than,

For CFS patients, CBT can be useful by helping rid patients of their false illness beliefs, which is to say this idea that they have an illness called myalgic encephalomyelitis. GET will help them regain any muscle tone lost due to this foolish belief they are ill.
Click to expand...

I pretty much thought the second one was the Wessley School Motto.

@osisposis -- meaction article out at 4pm (1.5 hrs) that summarizes the info. You can also go to Tuller's synopsis here, but I'll bet others can explain meanwhile.
 
G

Groggy Doggy

Guest
Messages
1,130
PACE sinking ship.jpg
 
D

Denise

Senior Member
Messages
1,095
alex3619 said:
Umm, this is not about the data, its a misnomer. They released a reanalysis. Where is the data then?

Are they trying to circumvent the Tribunal ruling, or is the data still pending, or did we miss it?
Click to expand...

I believe the statement is supposed to mean that the data Alem Mathees FOIA'd will be released to him.
I have not yet seen any indication that that or any other data would be released to anyone else.
 
JaimeS

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
alex3619 said:
Umm, this is not about the data, its a misnomer. They released a reanalysis. Where is the data then?

Are they trying to circumvent the Tribunal ruling, or is the data still pending, or did we miss it?
Click to expand...

Nope, this is a story about their reanalysis AND the fact that the data has been released to Alem. It does not include their raw data itself, more's the pity!

[Edit: I added the clarifying sentence:

"But now, with the original, raw data going to Alem Matthees, a more independent review is sure to follow."

There was a transition missing between their reinterpretation and Alem's access to the raw data.]

-J
 
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