PACE re-analysis and NICE guidelines

[Deepwater]

My recollection is that NICE published the guidelines citing that there wasn't good evidence at the time for CBT/GET, but that a major trial (PACE) was in the works which would clarify the situation. It seems to me that the intervention from Sharpe earlier in the week was designed to say "no, the results may not be so great but the treatments are still shown to be effective, more or less".

So we also need to be able to ascertain the level of harms recorded, and the numbers of participants who dropped out and how they had been doing up to the point they dropped out. I don't know if this will be do-able from the data that is to be released.

 

[Sean]

I think it's also worth remembering that there is a bigger picture in the UK.

The BPS ideology underpins the government's entire attitude to the benefits and welfare system. The idea being that work is beneficial and people should do what they can has been distorted and taken way too far. The reality has become that those who are ill should be continually pushed, regardless of how ill they are, into some sort of work.

PACE, in my opinion, was a flagship for this and hence the funding from the DWP. In the UK, there is so much more at stake than treatment of ME/CFS.

Absolutely correct, which is why PACE and the BPS school are being so fiercely and ruthlessly protected by the establishment, by big money and big politics (across the spectrum).

If PACE/BPS go down, so does a whole lot of money and power that invoke PACE/BPS to justify their endless smash-and-grab raids on more money and power.

 

[user9876]

As to the 6mwt data being the most contentious from a privacy angle - those CBT sessions I did were recorded. I NEVER want to hear them myself, never mind anyone else hearing them. It would be like re-reading some dreadful teen angst filled ancient forgotten diaries I'd come across in my loft *shudders* I don't remember much about them, but I do remember wailing a LOT about having to give stuff up! and I do remember getting through LOTS of boxes of tissues....

You have no need to worry about that.

The requested data was limited to 12 variables (trial arm, cfq binomial marking (baseline, 52 weeks), cfq likert scoring (baseline 52 weeks), sf36 physical function (baseline, 52 weeks), doctor rated CGI, patient rated CGI, meets oxford criteria at end, 6mwt (baseline, 52 weeks).

Most are marks derived from questionnaires and there will be multiple patients with the same score. The 6mwt data could be a unique distance for each patient hence there was a claim that someone could be traced but in reality that would be impossible.

The tribunal did remind QMUL of the data protection act which means that they cannot share personal data (i.e. data that could be identified such as recordings) with anyone other than those specified in the consent agreement. I can't remember what form that took but it included things like research auditors. So personal data is safe and perhaps a little safer given the tribunals reminder that QMUL cannot go around sharing personal data with other 'cherry picked' researchers.

 

[Chrisb]

If PACE/BPS go down, so does a whole lot of money and power that invoke PACE/BPS to justify their endless smash-and-grab raids on more money and power.

There is one curious aspect of the NICE guidelines /PACE fiasco which I cannot understand at all. (Only one? you ask.)

One of the strategic purposes of NICE was seemingly to put a supposedly independent organisation between patient or consumer and government at a time when unpopular financial decisions were likely to be required. This would provide deniability. Any complaints would have to be addressed to NICE and ministers could merely reply "nothing to do with me".

What was the DWP thinking of when it wholly undermined the strategy and gave a direct link back to government by part funding the PACE research? This makes clear the political interest and also makes government answerable for matters which were supposedly to be left to the "arm's length" organisations. It would not have looked nearly so bad if all funding had been channelled through the independent MRC.

I recently enjoyed watching on TV the hearings of the combined Work and Pensions and Business Committees into the BHS pension problems. ( I know. Its sad, isn't it.) As PACE must potentially affect something like 10x more people perhaps we should lobby for a similar hearing before the appropriate committees. This may seem far fetched but the important issues of the integrity of governance, and "science" as practised in the UK ,and the health and treatment of many people should be addressed - which is probably why they are unlikely to be.

 

[eafw]

ME isn't treated in the same way as other illnesses, it never has been: expert opinion counts for far more than trifling matters like evidence or patient feedback. I suspect that the old boys club will continue to exert it's influence unless this blows up into a major scandal elsewhere (we can only hope). This, of course, is now more likely than it ever has been, though I'm still not holding my breath.

PACE, in my opinion, was a flagship for this and hence the funding from the DWP. In the UK, there is so much more at stake than treatment of ME/CFS.

Yes, there are some very well-resourced (ie powerful) vested interests at play here and they will try and hold on as long as they can. Don't know what the best way forward is for us in the UK, at the moment it seems we just have to hope others in a position of influence will speak out at some point on our behalf.

 

[trishrhymes]

Yes, there are some very well-resourced (ie powerful) vested interests at play here and they will try and hold on as long as they can. Don't know what the best way forward is for us in the UK, at the moment it seems we just have to hope others in a position of influence will speak out at some point on our behalf.

I have realised over the last few days that most of my posts on PACE are full of wishes that somebody other than myself would do lots of difficult things about NICE guidelines, DWP, NHS, etc etc. Perhaps we should take a leaf out of the ME Action group in America's book and contact our politicians, ie write to our MP's.

Having said that, my MP is Oliver Letwin whose background is in investment banking and who Cameron had in his cabinet in an amorphous sounding post that I suspect was mostly to do with his wish to privatise everything, and to keep him quiet because he's more right wing than even most Tories can stomach. I suspect I'd get nowhere with him, but I'll give it a try.

I think the angle I need to take is that the government has been misled into spending a lot of health service money on treatments (CBT and GET) that were introduced under the previous Labour government (NICE guidelines are dated 2007), and have now been revealed to be useless, in a scandalous distortion of research data, demonstrated by the graph Tom Kindlon produced.

This should appeal on several grounds - putting right a wrong done under Labour, and saving the NHS money, and preventing a medical scandal.

What do others think?

 

[eafw]

I have realised over the last few days that most of my posts on PACE are full of wishes that somebody other than myself would do lots of difficult things about NICE guidelines, DWP, NHS, etc etc. Perhaps we should take a leaf out of the ME Action group in America's book and contact our politicians, ie write to our MP's.

To clarify, we do have activists and people campaigning in the UK. Groups, charities and individuals who do a lot of work and **should** be being listened to, but have struggled for years to make anything other than minor inroads against the institutionalised problems we face politically in this country.

These are not the people I'm referring to when I say "others in a position of influence". I mean the actual policy makers, the NHS, the government, the grant givers and such like - and the mainstream media who seem to have lost all ability to do any decent investigative journalism into any of this.

 

[trishrhymes]

To clarify, we do have activists and people campaigning in the UK. Groups, charities and individuals who do a lot of work and **should** be being listened to, but have struggled for years to make anything other than minor inroads against the institutionalised problems we face politically in this country.

These are not the people I'm referring to when I say "others in a position of influence". I mean the actual policy makers, the NHS, the government, the grant givers and such like - and the mainstream media who seem to have lost all ability to do any decent investigative journalism into any of this.

Absolutely agree, there are brilliant people in MEA and other organisations and individuals like Tom Kindlon working on our behalf.

I was not criticising them but myself for standing or rather sitting/lying on the sidelines doing nothing, then realising writing to my MP is something I could do.

 

[AndyPR]

I have realised over the last few days that most of my posts on PACE are full of wishes that somebody other than myself would do lots of difficult things about NICE guidelines, DWP, NHS, etc etc. Perhaps we should take a leaf out of the ME Action group in America's book and contact our politicians, ie write to our MP's.

Having said that, my MP is Oliver Letwin whose background is in investment banking and who Cameron had in his cabinet in an amorphous sounding post that I suspect was mostly to do with his wish to privatise everything, and to keep him quiet because he's more right wing than even most Tories can stomach. I suspect I'd get nowhere with him, but I'll give it a try.

I think the angle I need to take is that the government has been misled into spending a lot of health service money on treatments (CBT and GET) that were introduced under the previous Labour government (NICE guidelines are dated 2007), and have now been revealed to be useless, in a scandalous distortion of research data, demonstrated by the graph Tom Kindlon produced.

This should appeal on several grounds - putting right a wrong done under Labour, and saving the NHS money, and preventing a medical scandal.

What do others think?

I do think that we as individuals do need to make more 'noise' ourselves in the UK, and it can be relatively easy. Recently I highlighted this http://forums.phoenixrising.me/inde...xt-weeks-appg-on-m-e-meeting-sept-2016.46544/ as an easy way to raise the issue of ME with our MPs - all that was needed was to email a copy of a draft letter to your MP, so I don't know if you saw that.

I'm also planning to send something to highlight the Millions Missing protests but, like you, I have a Conservative MP 'representing' me so I don't really expect to get to far, although, having said that, I do intend to keep up a constant reminder to him, perhaps every month or so, as the people that MPs pay attention to are the ones with the loudest/most persistent/most annoying voices.

 

[trishrhymes]

Thanks Andy, I'm afraid I missed the boat on the APPG meeting. Slap hand! Must try harder.

 

[AndyPR]

Thanks Andy, I'm afraid I missed the boat on the APPG meeting. Slap hand! Must try harder.

Lol, well, it can be easily done, there tends to be a LOT of posts in the forums so can be easy to miss stuff.

I'm intending to keep an eye on when the next, and following, meetings of the APPG are due to take place and will post again to alert everyone.

 

[Valentijn]

I NEVER want to hear them myself, never mind anyone else hearing them. It would be like re-reading some dreadful teen angst filled ancient forgotten diaries I'd come across in my loft *shudders* I don't remember much about them, but I do remember wailing a LOT about having to give stuff up! and I do remember getting through LOTS of boxes of tissues....

Maybe you could re-enact the content of the sessions in emoji pantomime, for purely therapeutic purposes of course. Here's a depiction of my own ME journey:

 

[Large Donner]

These are not the people I'm referring to when I say "others in a position of influence". I mean the actual policy makers, the NHS, the government, the grant givers and such like - and the mainstream media who seem to have lost all ability to do any decent investigative journalism into any of this.

The policy makers are the mainstream media. Newspaper sales etc dont make any money, advertising makes money, policy is politics, politics is PR, PR is advertising, is media.

There are no journalists, there are agents of policy which is PR which is media.

 

[Cheesus]

There seem to be a few from that sort of area. That is the constituency of Dr Sarah Wollaston MP. Dr Wollaston is Chair of the Health Committee of the House of Commons.

She is also a GP, so is well placed (theoretically) to evaluate evidence.

 

[Esther12]

She is also a GP, so is well placed (theoretically) to evaluate evidence.

Think I've seen dodgy things from her about CFS in the past.

 

[Cheesus]

Think I've seen dodgy things from her about CFS in the past.

That does not surprise me even a little bit.

 

[JayS]

The question I have is, what happens if PACE is presumably on its way to retraction, yet still stands, when GETSET and perhaps MAGENTA pop up. PACE and other flavors of CBT/GET research have been debunked for years here & in other places and nobody's paid attention, probably mostly due to the laziness of accepting argument from authority. If PACE fell today, there's still a good amount of research that the BPS could point to as being valid, even if it's just as bad and considered to be of poor quality. But if we're to be hit soon with another PACE...what happens then.

 

[JaimeS]

For reasons that will soon become apparent, I'm too tired to say more: http://www.meaction.net/2016/09/12/uk-and-global-petition-its-time-to-stop-get-trials-for-mecfs/

Big team, big effort. Please sign!

 

[Solstice]

The question I have is, what happens if PACE is presumably on its way to retraction, yet still stands, when GETSET and perhaps MAGENTA pop up. PACE and other flavors of CBT/GET research have been debunked for years here & in other places and nobody's paid attention, probably mostly due to the laziness of accepting argument from authority. If PACE fell today, there's still a good amount of research that the BPS could point to as being valid, even if it's just as bad and considered to be of poor quality. But if we're to be hit soon with another PACE...what happens then.

I'm hoping even more researchers jump on the bandwagon and demand data so they can reanalyze then.

 

[Large Donner]

I'm hoping even more researchers jump on the bandwagon and demand data so they can reanalyze then.

This is a good point when it comes to trials like MAGNETA etc. Its obvious that Peter White is the wizard behind the curtain for people like Esther Crawley etc and he protects them from scrutiny and yet the slightest look behind the curtain unveils Crawley as a complete charlatan.

But if PACE is retracted, and its obvious there's enough evidence to retract it, then the spotlight should be turned on to people like Crawley and her MAGNETA trial. If White is discredited and out of the way it will shine through just how dim and warped Crawley is, and to be quite honest, she is not bright enough to play the game at the level that White plays it.

Unfortunately I feel it will still be down to us the patient population to encourage academics to continue to shine a light on the BPS model and proponents and their work. I just feel that many of them wont make the connection to PACE and the overall power that the BPS fraudulent model has had. On top of that they don't want to go up against the system because they have mouths to feed and mortgages to pay.

On top of that they will have the next big thing in their own lives to get on with. This whole fiasco has been played out for over 30 years right in front of the eyes of the worldwide scientific community and where the hell have they been until now?

The peer review process has been utterly corrupted overall and so has science this is evidence that it is impossible that this is only the case in ME. It was so easy to carry out this scam and therefore the whole system must be known to be broken and rotten to the core that's why people took advantage of it, knew they could get away with it and still think they can get away with it.

Our news services are broken, our science is broken, our banking and monetary system is broken, our politics is broken and they have all been co opted by a power elite. Utter corruption is running rife through our democracies.