Please take the time to sign and share as much as possible.

Please take the time to sign and share as much as possible.

It might help if you explain a bit more about the petition, Clear33.

HB

Thanks HB

The link I provided is thorough to get a good grasp on the subject.

Here is an ex NHS worker, academic, clinician Lindy also outlining the current situation very well:

http://disabledintorybritain.com/2015/11/01/tory-majority-day-85-whats-also-wrong-with-the-mecfs-pace-trial-the-nhs-should-have-done-the-critical-analysis-so-tom-kindlon-didnt-have-to/

'I have gone from being a person who entirely supported and believed in the NHS and had the deepest respect for most clinicians that I worked alongside or met along the way, to a person totally jaded by a system that can allow such terrible treatment of ME CFS patients continue unquestioned'

http://blogs.plos.org/mindthebrain/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/

Another good article on this.

'Voodoo statistics' have stopped biological research into this illness and used up what little funding there was under a pretence of helping when in reality it was causing a lot of harm.

"

The PACE investigators sacrificed any possibility of meaningful long-term follow-up by breaking protocol and issuing patient testimonials about CBT before accrual was even completed.

This already fatal flaw was compounded with a loose recommendation for treatment after the intervention phase of the trial ended. The investigators provide poor documentation of which treatment was taken up by which patients and whether there was crossover in the treatment being received during follow up.

Investigators’ attempts to correct methodological issues with statistical strategies lapses into voodoo statistics.

The primary outcome self-report variables are susceptible to manipulation, investigator preferences for particular treatments, peer pressure, and confounding with mental health variables.

The Pace investigators exploited ambiguities in the design and execution of their trial with self-congratulatory, confirmatory bias"

I will move this to the e-petition forum

I suspect you will need more in the thread title to encourage viewers, though

Did not know there was an epetition forum. Its not just a petition to sign though, its is an NHS debate also for informing folk who are interested. How has the NHS allowed this to begin with and then go on for so long?

It is bad science, destroying thousands of patients lives with warped media messages, inhumane ignorant Doctors, trickling down to situations where patients have no support even from their families.

If it is a discussion/debate thread, then it would need to be moved to the Bear Garden. The Main forums are for people requiring help for their problems.

 

I suspect you will need more in the thread title to encourage viewers, though

Like me, I haven't a clue what this is all about, even a snippit to wet my interest might help.

Presumably you mean by reading the title @Conniff

You understand the info in the links provided?

Or does this need clarifying too, I am wondering?

@citizenB

Please try a heading title then of: Getting rid of fraudulent trials in the NHS - Please sign and share

If that all this isn't juicy enough- I don't know what is!

This is a big scandal.

Patients created a little fun song a while back about PACE trial flaws and a youtube series, it really is excellent.

Government finally orders release of PACE trial data:

http://www.meaction.net/2015/11/06/government-orders-release-of-pace-trial-data/

Presumably you mean by reading the title @Conniff

You understand the info in the links provided?

I mean that it should be a bit more meaty, make people curious and want to go take a look and then once you have them there, they will sign the petition.

Clear, everyone who posts a link to a petition believes it to be important. I have no doubt yours is equally so. However, just from reading the title it didn't encourage me have a look.

Even reading the content of the links, TBH, I was none the wiser. Finally, I did get it.. I will amend your thread title as per post # 10

Ah, yes I think I understand what you mean. @Conniff @citizenB

Will work on that Thanks

And thumbs from me too.

Just think of that bin in the supermarket with the bright flash saying 50p off, you might not buy or even want what is in the bin, but you can bet your life you will go have a look.

Nearly at 10,000 signed petition now. Please continue to sign and share.

http://www.virology.ws/2015/11/09/trial-by-error-continued-why-has-the-pace-studys-sister-trial-been-disappeared-and-forgotten/

Basically because of a mountain of fraud, ME patients, who have a serious neurological/immune disease process have been denied biological research funding. Instead, the psych depts. have been hoovering up all the money and spinning the results. We then see a mountain of 'positive thinking and exercise' cures ME amongst medics and in the media and from families.

CBT/GET (cognitive behavioural therapy - specifically designed to get you to ignore and override your bodily symptoms because they were classed as 'false illness beliefs') and (Graded Exercise therapy) - However the problem is not deconditioning, lack of motivation or negative thinking - it is a physical one.

Therefore the NHS has been sending patients, in need of physical testing and treatments such as anti-virals instead for psychological therapies such as CBT/GET where some have been seriously harmed. And yet the PACE trial had null result, which proves it does not work for ME patients.

This peverse thinking is in the blood of the NHS and leads to abuse from G.Ps, benefits agencies etc. and can be seen in the above link on the FINE trial, Nurse:

"the bastards don't want to get better"

"At times, nurses themselves responded to these difficult interactions with bouts of anger directed at the participants, according to a supervisor.

“Their frustration has reached the point where they sort of boiled over,” said the supervisor. “There is sort of feeling that the patient should be grateful and follow your advice, and in actual fact, what happens is the patient is quite resistant and there is this thing like you know, ‘The bastards don’t want to get better.’”

http://linkis.com/www.virology.ws/2015/x1hFQ

6 prominent scientists call for a review of the PACE trial.

The comments are illuminating at the end of this article too.

Petition been signed by more than 10,000 people now! Great, big thanks to everyone for signing, please continue to sign and share, to get this PACE trial independently reviewed.

What happens to the parents of children who fall ill with ME?

They can get accused of child abuse when their child fails to recover or gets worse from CBT/GET

(Cognitive Behavioural Therapy - specifically tailored to get you to ignore your symptoms as they are considered 'False Illness beliefs' - how disgusting is that!)and GET (Graded Exercise Therapy - designed on the false and unscientific theory that patients are simply deconditioned. Scientific evidence shows that upon exertion, patients of those with M.E. have a flare up of all of their neurological symptoms and they loose energy. This flare up can be delayed post exertion by 24 to 48 hrs and can last for days, weeks or even months. Exercise does not make one fitter and gain energy with this disease).

http://www.bing.com/search?q=tymestrust.org%2Fpdfs%2Ffalseallegations.pdf+%E2%80%A6&form=IE11TR&src=IE11TR&pc=LCJB

tymestrust.org/pdfs/falseallegations.pdf …

http://www.investinme.org/IIME-Newslet-1511-01.htm

"The PACE Trial has been shown to be flawed and a colossal waste of scarce public funding which could have gone to biomedical research into ME which, by now, may well have been leading to a breakthrough in treating this disease."

Taxpayers money, £5 million went into this trial. Those who wanted to view the data were denied. When people put in FOI requests, the researchers classed this as 'Vexatious'... and used it as a reason to deny them. Publicly funded trials should be 100% transparent.

All NHS patients/contributors have a right to be angry at how their money has been wasted.

James Coyne PhD gives a talk 16th November, The Loft Bar in Edinburgh 7-9pm on the Flawed PACE study

https://www.dropbox.com/s/x2gwwwcps2lz945/Edin%20J%20Coyne%202015%2011%2016%20v2.pdf?dl=0

Here are the details if anyone wishes to go....

I would love to go. It should also be available online, afterwards.

http://voicesfromtheshadowsfilm.co.uk/

I have not watched this yet but it offers more understanding of the devastating effect Graded Exercise Therapy programmes can do. GET of course supported by fraudulent science.

Please sign and share the petition...

Run PACE Run...

James Coyne PhD has come to town

Live twitter feed from 7pm tonight #PubPACE

http://linkis.com/wordpress.com/nXMKk

"A 'Moral equivalent of War' and the chronic fatigue PACE trial"

Links to recorded #PubPACE