PACE Trial and PACE Trial Protocol

[oceanblue]

Yes. This will need a careful, rigourous response. People have been working on 'PACE watching' for years, and a good rigourous critique can be made if people pull together.

I completely agree. Of course, it entirely depends on what the results say (this could yet be another FINE damp squib) but there's sure to be a media blitz from the authors so if there are serious flaws in the study we need to be rigorous and fast with a response too.

At the same time, if there are any loose shots from us making inaccurate or weak points, the authors will quick to jump on them to brand patients as not understanding the research properly. It's gonna be fun...

 

[Min]

Do you mean AfME, who've supported the trial?

AfME's statement:

Collaboration with the PACE study

PACE RESEARCH STUDY a statement July 2004



Various comments have been made by individuals and other organisations about our support for the PACE study. We are pleased to explain our position.



Action for M.E. has found from repeated surveys of its membership that Pacing has been the approach that people have found of most benefit in managing the illness and helping toward recovery.



The Chief Medical Officers Working Group listened to the Action for M.E. surveys and the contributions of the Groups Members and for the first time acknowledged the usefulness of Pacing along with other rehabilitation approaches used in the NHS.



But the Group acknowledged there was much that was still unknown about the effectiveness of all the approaches and recommended a research trial comparing them.



"Because of the shortage of good research evidence of the effectiveness of pacing, there is an urgent need for randomised controlled trials of pacing therapy, particularly in early illness (for example, in comparison with rehabilitation therapies such as cognitive behavioural therapy and/or graded exercise, and other forms of support such as counselling)."



The Report including this key finding was accepted by all the members of the M.E. Alliance



Subsequently Action for M.E. undertook further surveys that showed members do want research into and more information on Pacing.



Accordingly, and having checked that a study would not divert funds from our members overall priorities to find the cause and a cure for M.E., we agreed to support a trial comparing Pacing with other approaches.



It is not true and never has been that the funding of PACE has diverted money away from other M.E. research.



Chris Clark

 

[Angela Kennedy]

thanks for that Min.

 

[Angela Kennedy]

I completely agree. Of course, it entirely depends on what the results say (this could yet be another FINE damp squib) but there's sure to be a media blitz from the authors so if there are serious flaws in the study we need to be rigorous and fast with a response too.

At the same time, if there are any loose shots from us making inaccurate or weak points, the authors will quick to jump on them to brand patients as not understanding the research properly. It's gonna be fun...

Yes- good points. I can think of more fun things to do though... : )

 

[oceanblue]

Yes- good points. I can think of more fun things to do though... : )

Yes, Matron...

 

[Angela Kennedy]

Yes, Matron...

Indeed - or whatever Matrons say ; )

 

[Dolphin]

Letters: only have 2 weeks and 250 words

From Co-Cure:

As many people will have heard, The Lancet have called a press conference for 10:30am (London time) tomorrow (Thursday, February 17). The media have contacted at least one ME patient organisation looking for potential interviewees.


I thought I would highlight now the instructions for writing letters to the editor.
It would be frustrating for anyone to write a long letter only to find out what the rules are.


250 words is not that much.
If the paper needs to be challenged, given the word count, we will probably need a few people to be writing in.


Also it is important to note that one only has two weeks to reply. One may regret it if one doesn't make time to reply when one has a chance (I read old papers I wish I could reply to).


If somebody has access to the Lancet, I would be interested to know how many references letters have. So I'm interested in correspondence (on anything) in the last few years - they may have got stricter than in the past. Some journals specify five references which is really for as one quotes the original article. My guess would be with a word limit of 250 words, that they prefer letters with five or fewer references - remember the references themselves take up space. But I would be interested in data. Thanks


Tom


-----------

http://www.lancet.com/lancet-information-for-authors/article-types-manuscript-requirements

Correspondence

. We welcome correspondence on content published in The Lancet or on
other topics of interest to our readers

. Letters for publication in the print journal must reach us within 2 weeks of publication of the original item and should be no longer than 250 words

. Letters of general interest, unlinked to items published in the journal, can be up to 400 words long

. Correspondence letters are not usually peer reviewed (we rarely publish original research or Case Reports in this section), but the journal might invite replies from the authors of the original publication, or pass on letters to these authors

. Only one table or figure is permitted, and there should be no more than five references and five authors

. All accepted letters are edited, and proofs will be sent out to authors before publication

 

[Snow Leopard]

Thanks Dolphin. Can you post that info on the thread on the 'other' forum, to encourage more letters to be written?

Any 'themes' and specifc research you think we should stress in writing such letters?

Such responses depends on the paper of course. I'm going to be pissed if CBT/GET is deemed to be as effective or more effective than pacing..

 

[Esther12]

The Pacing component looked poor to me. I expect it to do less well than treatment as usual. (Please note - this is a fairly ignorant view based upon only a brief look at the pacing guidelines - but they looked bad).

It's really going to be all about the details for me. Did they manage to effectively sub-divide those with chronic fatigue in ways which allow for meaningful predictions to be made about the different likely responses to treatment for individuals. I wouldn't be at all surprised if some of those with fatigue problems do benefit dramatically from CBT or GET... so the aggregated figures are of less interest to me, even though I expect that they will capture any headlines that appear.

 

[Esther12]

ps: I wonder if the media are getting to report the press release or look at the full paper? (LOL)

 

[Snow Leopard]

ps: I wonder if the media are getting to report the press release or look at the full paper? (LOL)

Even if they were given the full paper, how many would read and understand it?

 

[Dolphin]

Thanks Dolphin. Can you post that info on the thread on the 'other' forum, to encourage more letters to be written?

Done

Any 'themes' and specifc research you think we should stress in writing such letters?

I have some ideas. But variety can be good so maybe I won't say them yet. But I am willing to help people off-list* (or on-list* if people prefer) if they make a start on a letter but are looking for a reference (say).

*to an extent anyway

 

[Dolphin]

PACE Trial FAQ incl. manuals

PACE Trial FAQ incl. manuals (but not final paper)
http://www.pacetrial.org/trialinfo.html

 

[Bob]

Does anyone think that we should start a new thread with a title something like "PACE trial results imminent"?
It might be useful for people to know.
Or should we wait until the actual results?

BTW Have there been any more hints about when they are going to be released to the public?

 

[Dolphin]

Does anyone think that we should start a new thread with a title something like "PACE trial results imminent"?
It might be useful for people to know.
Or should we wait until the actual results?

BTW Have there been any more hints about when they are going to be released to the public?

Results are out at midnight.
At that stage, perhaps there could be a separate thread. Or you could post something in the news and advocacy section and link to here if you wanted.

 

[oceanblue]

Results are out at midnight.

Shame, I'll be fast asleep by then. Look forward to your incisive analysis in the morning.

 

[Esther12]

I'm unsure... should I stay up late and probably get intensely irritated by the way this is covered, or turn the PC off now and have a good nights sleep?

There's always a chance that it will be a useful bit of research...

 

[Esther12]

This just turned up:

ME Association: PACE Trial results are over-simplistic and dangerous

The ME Association does not accept the over-simplistic conclusions that CBT (cognitive behaviour therapy) and GET (graded exercise therapy) are safe and moderatively effective treatments for everyone with ME/CFS.

http://niceguidelines.blogspot.com/2011/02/pace-trial-results-are-over-simplistic.html

 

[Dolphin]

I'm unsure... should I stay up late and probably get intensely irritated by the way this is covered, or turn the PC off now and have a good nights sleep?

There's always a chance that it will be a useful bit of research...

This paper will show that pacing isn't the way to go so no point doing that.

But seriously, I imagine the paper will get people's minds racing. Up to people themselves. I have an odd set sleep pattern.

 

[oceanblue]

Early report of PACE in the LA Times:

The research, published Friday in the medical journal, Lancet, concluded that behavior and exercise seemed to moderately reduce fatigue and improve activity levels, while pacing and medical care wasn't much help