Queen Mary Student Union - The Print

[Yogi]

Great news ... the truth about PACE trial coming out on QMUL campus

The Print News is Queen Mary Student Union's newspaper. This is the main university of the PACE trial and Peter White.

Rachel Muller-Heyndyk has written about it in January. She is a second year English and Drama student at QMUL.

Queen Mary has been accused of “defending the indefensible” after they rejected requests to share the raw data of a controversialtrial for the treatment of Chronic Fatigue Syndrome

PACE, a five year long trial instigated by researchers from QMUL and Kings College London, was the first to test the effectiveness of the four main treatments available for the condition. Adaptive pacing therapy, Cognitive Behavioural Therapy (CBT), graded exercise therapy, and standardised specialist medical care are all currently used to reduce symptoms in sufferers.

It is estimated that a quarter of a million people in the UK suffer from myalgic encephalomyelitis (ME) otherwise known as Chronic Fatigue Syndrome (CFS), but its causes are unclear.

http://theprintnews.co.uk/2016/01/scientists-demand-transparency-on-pace-trial/

I understand this was printed and available and distributed on campus.

Let's give Rachel Muller-Heyndyk some hits on the QM student website.

 

[Yogi]

@harveythecat

We chatted about getting the students from the respective unions to help out on this remember.

http://forums.phoenixrising.me/inde...-re-analysis-of-pace.41220/page-3#post-665930

 

[John Mac]

There is a comments box to leave replies further down the page.

 

[harveythecat]

@harveythecat

We chatted about getting the students from the respective unions to help out on this remember.

http://forums.phoenixrising.me/inde...-re-analysis-of-pace.41220/page-3#post-665930

Hi - yes we did indeed. Me and a current student, also with ME, were going to write something, then we both were too ill to do it on top of other things. I still think galvanising students at these unis and getting stuff written in the student press is a good idea. It's something I might be able to do if I have the time/energy (of course!)

 

[Esther12]

then we both were too ill to do it on top of other things

LOL - that is a bit of a problem with our patient advocacy.

Luckily people are able to do bits and pieces, and it can all add up.

This piece doesn't get all the details right, but it seems that it's hard for people to do so without putting in years of research, eg:

It is estimated that since 2011, some 150 requests have been made under the Freedom of Information Act (FOIA) to receive raw data from the trial. QMUL refused the requests on the grounds that they were “vexatious.”

Also, they only mentioned four of the researchers who put their name to the letter... maybe to save space?

Still great to see this in there though. I just always focus on the niggles.

 

[Esther12]

PS: How did no-one notice this til now?!

 

[harveythecat]

Also - it doesn't just have to be students/ex students. anyone could email in to student newspapers with a story - the student reporters would probably find it really exciting.

 

[Battery Muncher]

Unfortunately, I think this semester is over in the UK (with the exception of Cambridge and Oxford?).

Crucially, exams are coming up, so I doubt anyone will pay much attention right now.

Having said that, I think a coordinated campaign to appeal to the student unions of QMUL, Oxford, Edinburgh etc etc. would be very worthwhile. Something to plan for September? Or does anyone think we would get any response now and during the summer?

 

[harveythecat]

i know at oxford the term doesn't finish until mid june and not everyone has exams every year.

 

[Mark]

I hesitate to comment, in case my words are used in a few years time to undermine another vexatious campaign by nasty patient activists (as with my comment about FOI requests, which I now very much regret of course), but I think the concepts above are an extremely good idea and a worthwhile focus for campaigning. In my experience, students in general tend to be much more open-minded than older professionals, whose prejudices on the subject may tend to be rather more fixed and whose past 'education' on the subject (in the unlikely event that they got any at all) will have been almost completely misleading. If we're looking to the future, then getting the word out to students about the obscured truths about ME/CFS could really bear fruit further down the line.

I don't believe that our members, or the wider community, need any reminders on this - you get it, I know - but for the benefit of outside audiences I'll emphasise that all such campaigning must be peaceful, polite, respectful, and well within both the law and the regulations of universities (regulations which exist to protect their students); any other approach could be profoundly counter-productive. I'm not sure what the best "way in" might be, but I think it's well worth some serious thought.