Friday, February 18, 2011

UK PACE Study Highly Misleading

I've sent the message below to some journalists. Please feel free to send this message on to anyone else you know, journalists, doctors, whomever. It is extremely important that we do our best to counteract this highly misleading study that has just been published in the UK. It will have a negative impact on us all.

Dear -------,

Today the Lancet has published a study regarding "Chronic Fatigue Syndrome" which is highly misleading. I would very much appreciate your taking the time to read the following press releases and publishing a piece in ------- that gives accurate information about the problems with the PACE study.

Patient groups all over the world are aghast at this new study - we all know from personal experience (as I assure you I do) that exercise makes the condition far worse. This study will literally endanger the lives of millions - especially vulnerable children who are unable to speak up for themselves if forced to exercise beyond their capacity.

This is the link to the Lancet publication: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract

It is crucial to note that the participants in the study were: "patients meeting Oxford criteria for chronic fatigue syndrome".
However the Oxford criteria are so vague as to include almost anyone who feels "tired" and do NOT account for people with the neurological illness M.E. as identified by the WHO and the more commonly accepted Canadian Consensus Criteria (available here: http://sacfs.asn.au/news/2010/08/08_13_canadian_consensus_case_definition_revisited.htm)

Please see the statement from the ME Association in response to the study:
http://www.meassociation.org.uk/?p=4607

And the statement by Professor Malcolm Hooper:
http://www.meactionuk.org.uk/Hooper-response-to-PACE-Trial-Press-Release.htm

This press release from the ME/CFS Worldwide Patient Alliance also came out today:
http://mcwpa.org/wp-content/uploads/2010/12/XMRV-Leads-to-Chronic-Infection.pdf

This is how the NY Times has reported on the study:
http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?_r=3


I also recommend watching this trailer for an upcoming film about M.E.:

http://www.youtube.com/watch?v=JzcjVVQk5UM&feature=youtu.be

Please let me know if you have any questions. Thank you very much indeed.

5 comments:

Nina said...

Very well done, Nicky! Thanks for that.

Once more we have been shown that investigative journalism is dead. Anyone can be a "journalist" these days, all you have to do is regurgitate crappy press releases and NEVER check for vested interests.

I wonder why the following has never been brought up:

Wouldn't CFS be the very first disease in histor where patients reject a "cure" that works?

Suggesting that really implies something much more sinister, really. It implies that these patients wouldn't WANT to be well.

If that isn't the height of cruelty, what is?

Nina

Creek said...

Excellent action piece. Thank you!

Liz Willow said...

Nicky, this is excellent! I am hoping to blog on this but with headaches and nausea don't know if or when this will happen. If I manage it, I will come back to your post as this hits all the necessary points.

nighearain said...

Anyone can be a "journalist" these days, all you have to do is regurgitate crappy press releases and NEVER check for vested interests.

Well said, Nina. I have also noticed this trend in journalism at large.

Thanks for this, Nicky, I'll link it on my blog.

ZzirF said...

The thing I find amazing is that during the PACE trial, the patient grouping was bound to lead to a favorable bias toward the therapy that was teamed up with CBT. After all CBT is a form of brain washing that encourages a positive outlook. Why didn't they team the adaptive pacing group with CBT? Because this was not a properly controlled trial.