• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

"Medically Unexplained Symptoms" - Diverting 5-Year Funding from Mental Health

Messages
1,478
Makes you wonder whether the commissioners reviewing this report will show as much drive and professionalism as was seen in the European Parliament today?

Can just imagine a stuffy room full of empty seats with just the chairman reading it out to the minute taker and waving it through as approved.

Of course they could do their job and challenge the content? Here's hoping.
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
It is a very good article. Does anyone have more information on this statement from it?

Spoiler-alert: No patient involved in the PACE Trial returned to employment.

Can this be verified? So this is saying that all participants in the trial who were not working at the beginning of the trial were still not working by the end of it? Was the raw data on employment ever released?

If true, surely it is a major blow to the whole MUS treatment approach?
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
She's written a lot of good articles plus two books:
http://www.positivehealth.com/author/nancy-blake
Nancy Blake BA CQSW, has worked in mental health settings since 1971. She served as Chair of the ANLP PCS (now the NLPtCA), on a National Working Party developing postgraduate standards for Psychotherapy (NVQ Level 5), and contributed to the document which led to NLP being accepted as a therapeutic modality by the European Association for Psychotherapy.

She has presented workshops at UKCP Professional Conferences on an NLP approach to working with victims of abuse, and in psychoneuroimmunology. Recovering from ME since 1986, she is the co-author, with Dr Leslie O Simpson, of the book Ramsay’s Disease (ME) about ME, as well as A Beginner's Guide to ME / CFS (ME/CFS Beginner's Guides). Both titles are available both in paperback and Kindle formats on Amazon.

Nancy was previously enrolled at Lancaster University in a PhD doctoral program; her thesis topic was Conflicting Paradigms of ME/CFS and how the Psychiatric Paradigm creates its Influence in contrast to the Medical Model.
 
Messages
2,158
A good article, but it seems to be published on a complementary medicine website which may lower it's credibility in the medical and political worlds. And she's a promoter of NLP which I know almost nothing about except it has dubious credibility.

Does anyone know more?
 

Invisible Woman

Senior Member
Messages
1,267
Can this be verified? So this is saying that all participants in the trial who were not working at the beginning of the trial were still not working by the end of it? Was the raw data on employment ever released?

If true, surely it is a major blow to the whole MUS treatment approach?

I have read this before - I'm trying to remember where. If memory serves figures for unemployment were slightly worse at the end of the trial while benefit claims / reliance were the same or slightly increased.

I'll see if I can remember where I read it.....don't hold your breath mind! :)
 

Invisible Woman

Senior Member
Messages
1,267
In fact, I remember this was raised somewhere and the response from one of the PACE PIs, possibly P White, was that it wasn't their fault that the economy wasn't great/suitable employment couldn't be found, or some such fact dodging, self serving excuse.

Yeah - it's not that these bbedridden/housebound, cognitively impaired folk who can barely (if they're lucky) manage personal care aren't fit for work. It's that suitable work isn't available. :rolleyes::depressed::mad:
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I do not recall reading anything, but my memory is mush, that proves that nobody returned to work. Its more that in total there was not an improvement in employment, but I could not swear that nobody fit that description. If one person did get into work, and three dropped out of work, for example, the average would be worse but there would indeed be one who returned to work. It would be more desirable to say, instead, that given that the numbers show no improvement in employment its possible that nobody in the study returned to employment.

Arguing that the economy was to blame is taking people for fools. Sure, of all those "recovered" many might not have been able to find work, but all of them, or even most of them? Its very unlikely. Again, this is persuasive rhetoric instead of evidence and reason. Its a lot like "the dog ate my homework".

Of course if nobody or nearly none of them really recovered then its no surprise there was no improvement in employment. The recovery threshold was, after all, in the range of the typical 80 year old based on SF36PF.
 
Last edited:

Jo Best

Senior Member
Messages
1,032
A good article, but it seems to be published on a complementary medicine website which may lower it's credibility in the medical and political worlds. And she's a promoter of NLP which I know almost nothing about except it has dubious credibility.

Does anyone know more?

Hi Trish, in reply to someone else making this point on Facebook, Nancy Blake replied:

"The Editor of Positive Health has been kind enough to provide me with a platform for publication even though I'm neither a PhD or an MD. So I do what I can!!"

I don't know about NLP as a form of psychotherapy in mental health, but from what I know of Nancy Blake through Facebook groups, her knowledge of ME as a disease and the political issues, is sound and well expressed.

These are her books on Amazon:
https://www.amazon.co.uk/Nancy-Blake-BA-CQSW/e/B0089NS0RK/ref=ntt_dp_epwbk_0

Here is a guest editorial, 'A Radical Care Pathway for ME/CFS' on NHS Managers Network:
http://www.nhsmanagers.net/guest-editorials/a-radical-care-pathway-for-mecfs/
(think the date of the above is Oct. 2013 but not certain)
 

Invisible Woman

Senior Member
Messages
1,267
I found this:
"Information on overall receipt of state sickness or disability benefits failed to support a recovery – with the PACE trial cost analysis study (McCrone et al., 2012) reporting: ‘Receipt of benefits due to illness or disability increased slightly from baseline to follow-up’.

Information on return to some form of meaningful employment or education status was never sought. This was dismissed by the investigators as not being relevant."

Written by @charles shepherd about half way down:
http://www.meassociation.org.uk/201...d-journal-of-health-psychology-10-april-2017/

I reckon I've seen something elsewhere though...
 

Jo Best

Senior Member
Messages
1,032
I reckon I've seen something elsewhere though...
Was it here maybe, 23 OCTOBER 2015: http://www.virology.ws/2015/10/23/trial-by-error-iii/
A 2012 paper in PLoS One, on financial aspects of the illness, included outcomes for some additional objective measures. Instead of a decrease in financial benefits received by those in the rehabilitative therapy arms, as would be expected if disabled people improved enough to increase their ability to work, the paper reported a modest average increase in the receipt of benefits across all the arms of the study. There were also no differences among the groups in days lost from work.

The investigators did not include the promised information on wages.

In their response, they also dismissed the relevance of their employment and benefits outcomes, which had been described as “another more objective measure of function” in the protocol. “Recovery from illness is a health status, not an economic one, and plenty of working people are unwell, while well people do not necessarily work,” they now wrote. “In addition, follow-up at 6 months after the end of therapy may be too short a period to affect either benefits or employment. We therefore disagree…that such outcomes constitute a useful component of recovery in the PACE trial.”
 

Dolphin

Senior Member
Messages
17,567
It is a very good article. Does anyone have more information on this statement from it?

Spoiler-alert: No patient involved in the PACE Trial returned to employment.

Can this be verified? So this is saying that all participants in the trial who were not working at the beginning of the trial were still not working by the end of it? Was the raw data on employment ever released?

If true, surely it is a major blow to the whole MUS treatment approach?
Unfortunately we do not have individual-level data so we can't say that everyone who was not employed at the start of the trial was also not employed at the end.
 
Messages
55
Location
London, UK
Excellent article. Though I struggled to read it all, but that's down to ME!

I thought the original outcome for PACE was going to be measured on return to employment, but that was dropped when they changed the protocol. On this point, it's worth remembering the DWP put £5 mill. into the trial and an interest in the outcome.
 
Last edited:

Dolphin

Senior Member
Messages
17,567
Excellent article. Though I struggled to read it all, but that's down to ME!

I thought the original outcome for PACE was going to be measured on return to employment, but that was dropped when they changed the protocol. On this point, it's worth remembering the DWP put £5 mill. into the trial and an interest in the outcome.
I don't recall anything along the lines of what you are saying.

The employment data and information on disability payments and similar was published:
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808
 
Messages
55
Location
London, UK
I don't recall anything along the lines of what you are saying.

The employment data and information on disability payments and similar was published:
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808

I can see the article talks about lost employment. But I was talking about the PACE trial itself.

ME Association
It’s time for an independent review of the PACE Trial methods and results’ | Dr Charles Shepherd, Journal of Health Psychology | 10 April 2017


Information on return to some form of meaningful employment or education status was never sought. This was dismissed by the investigators as not being relevant.

Bit of a tangent to the discussion. Foggy Brain!

The article's results and conclusion talk about reduced healthcare costs but not employment.

Table 2 shows number of days Lost Employment at pre-trial and 12 month follow up. This is not the same as return to employment.
 
Last edited: