Factors associated with work status in chronic fatigue syndrome (2019) S A M Stevelink, N T Fear, M Hotopf, T Chalder

[rvallee]

This study is actually advertising.

We've identified the problem and to our utmost sincere surprise we are the answer. Send money.

 

[rvallee]

55% were currently working but if I understand correctly, this includes patients who worked part-time, did casual work or are a student. Nonetheless the average of 30 hours a week seems quite high.

This differs from the usual 75% too disabled to work but somehow that large difference does not seem to merit questions about the validity of the sample used. Something any real scientists would do.

And yeah without stratification of hours worked and how they differ from pre-illness state makes it pretty meaningless. Had I been given the right advice I'm sure I would have been able to continue working part time. I was making enough working freelance to work 10-20h per week and live comfortably. I would have been both significantly disabled yet marked as in employment. That's still a huge difference from a healthy person.

Ask stupid questions, make up nonsensical answers.

 

[rvallee]

"We assessed cross-sectional data from patients attending a UK specialist CFS treatment service between 1 January 2007 and 31 December 2014."
majority of ME patients (moderate to severe) would not be able to attend so it's hardly a representative sample.

Good point. I guess that explains the discrepancy between their 55% and the usual 75%.

So if you just ignore the sickest you can make it seem less bad. Serious work by serious scientists here.

 

[rvallee]

Why did they ask patients whether they saw their symptoms as physical, psychological or combination of both?

Wessely's theory has long been that strength of belief is the only predictive factor in the maintenance of ME. I think it just follows from that. Ironically what this means is that ME patients can properly assess their level of disability, invalidating the whole illness beliefs nonsense.

 

[Barry]

Factors strongly associated with permanently interrupted employment were older age (adjusted odds ratio (AOR) 5.24; 95% CI 2.67–10.28), poorer functioning (AOR 6.41; 95% CI 3.65–11.24) and depressive symptoms (AOR 2.89; 95% CI 1.82–4.58) compared to patients currently working.

An association between depressive symptoms and being out of work, as they say above.

Many patients with CFS were not working. This was exacerbated by high levels of depressive symptoms.

This sounds like they are saying the depressive symptoms are a contributory cause of being out of work! I wonder if it occurs to them that being too ill to work, as well as knowing that many people do not understand why, and that the DWP does not understand or care ... can be very depressing indeed! Surely they couldn't be confusing correlation and causation?! (In fairness I've only skimmed this, so may have missed something).

 

[DokaGirl]

Thank you @Michiel Tack for analyzing this paper. Again, BPS workers try to justify their work of manipulating emotions, however, the results don't bear out their hypothesis.

Exactly, @Trish. I marvel at how robotic some in the health professions think people should be. They seem to see reactions of anxiety and depression to the loss of health, career, family, friends, home, dignity, respect, finances as things one shouldn't get upset about. Wonder what they get upset about? Oh yeah...their career, reputation, family, respect, health etc. Hhhmmmm......

 

[Dolphin]

Due to strict HR rules within the civil service, I had mandatory reviews all through the Sickness Absence period, both with my manager(s) [supported by my Union rep]

A bit off-topic, but how does this work in practice? (I have lived a sheltered life getting ill in my teens).
Is this union rep a full-time union employee or do they take time off when they are supposed to be doing their job to help people or is it after their shift has finished?

 

[DokaGirl]

@Dolphin, my understanding of a union rep is that they are either directly employed by a union, or are given unpaid leave from their usual job, and paid by the union to represent other employees with employment issues.

Often work places will have a shop steward, who is a regular employee. These people represent colleagues re work issues. Some of this time is volunteer, and some may be paid by the union.

 

[Dolphin]

Often work places will have a shop steward, who is a regular employee. These people represent colleagues re work issues. Some of this time is volunteer, and some may be paid by the union.

Thanks. Is some of it during the time they are employed to work by their non-union employer or is it always after their shift has finished?

 

[NelliePledge]

@Dolphin, my understanding of a union rep is that they are either directly employed by a union, or are given unpaid leave from their usual job, and paid by the union to represent other employees with employment issues.

Often work places will have a shop steward, who is a regular employee. These people represent colleagues re work issues. Some of this time is volunteer, and some may be paid by the union.

Union rep who helped me was someone who had a full time job but supported individual colleagues with cases like ill health or complaints against management as a voluntary role. They get training for the role and have access to full time professionals for advice,

 

[DokaGirl]

@Dolphin

People representing other employees in a union shop/workplace have unionized employers (e.g. some government departments), and often do this during the usual work day, especially if it's just for a short time, e.g. a short meeting.

For a longer period of time, the employee/shop steward could be granted unpaid leave by the employer and then paid by the union to represent co-workers.

My knowledge of shop stewards is that they may do a fair bit of after hours volunteer time. Their training to become a shop steward is on their own time - after regular work hours. Union meetings are also done as volunteer time.

 

[Sean]

We've identified the problem and to our utmost sincere surprise we are the answer. Send money.

Obviously the answer to a therapy failing to work is to double the dose.

 

[Mithriel]

Dolphin, in NHS the union rep does their ordinary work usually but if another employee wants them to go with them to a meeting they go along during work hours.

 

[MSEsperanza]

Don't think so. I usually respond if I think there's something really misleading in the results, that might confuse readers. Don't think this is the case with this short paper. On the other hand, it's rather frustrating that the authors do not discuss the hypotheses they have tested.

Why did they ask patients whether they saw their symptoms as physical, psychological or combination of both? They probably thought this was an important factor determining outcomes. But now that the results indicate it's irrelevant to work status, they barely mention it in the discussion section. They also highlight the high numbers of anxiety in this patient sample, by which they seem to say that this is important. But there was no difference in anxiety between the working and not-working group.

I suspect that if somatic attributions and anxiety, which both feature prominently in their cognitive behavioral model, had shown significant differences between the groups, that the authors would have highlighted this and how important it is to incorporate this in the treatment etc.

A summary of papers in which BPS proponents disproved both their current hypotheses and interpretations of findings in past research papers and reviews but fail to acknowledge this would be fine I think.

The biggest challenge of that task seems to be to focus on the most relevant points, as also the earlier papers are full of spin, even if they contain some useful findings.

For example, I don't know where to start regarding the Cairns/ Hotopf 2005 prognosis review... Not sure if it's worth to start an own thread but just to start anywhere -- here it is.

 

[MSEsperanza]

The early involvement of occupational health is simply to get you back to work more or less as soon as they are in contact with you albeit on phased return. May well be the right approach to encourage people with depression to get back to work.

From my experience phased return was like pushing a boulder up a hill. I had a very kind manager who kept HR out of it as much as possible but eventually when it was clear I wasn’t going to be able to do more than 15 hours a week I had no option but to permanently reduce my hours and take the cut in salary. Plus I’d racked up loads of hours of sick for all the time I wasn’t able to meet my full contract. Which meant I had a much shorter time at the end - when I couldn’t manage 15 hours reliably - til I ended up on statutory sick pay only and then a period of months on no pay while I applied for ill health retirement.

Who knows if things might have been better if I had given it several months before trying to get back instead of several weeks. I was supposed to be able to take quite a lengthy period of sick absence if needed and still have employment to go back to but everything in practice goes against that.

As for depressive symptoms I had depression diagnosis I have mentioned this a few times. But many of the problems I was having that were attributed to depression with insomnia unrefreshing sleep flu like symptoms laryngitis physical exhaustion were undiagnosed gradual onset ME.

The reason older people with ME are less likely to be pushing to continue in employment is financial - some of us being in the relatively privileged position of having the extra possible outcome of retiring early if there’s an occupational pension, and if older and have a mortgage it may be not too far off being paid off.

ETA I realise that what I’m really saying is that an extended phased return is a double whammy because you’re still racking up sick absences for the hours you can’t work and you’re actually doing as much work as you can manage and because you’ve said you’ll do x hours that’s what you ll push yourself to do. it’s just like graded exercise therapy.

I wonder if in the UK there is something like a partial retirement based on reduced earning capacity so that people get a financial compensation if they cant' work full time without urging you to either approve to a pre-defined phased return nor to try how you get on with a part time job on their own. I know from the Netherlands that they have very flexible models how to deal with reduced working capacity and return to work. (What I heard of applied only to work at the current/ former employers. Not sure if there is a similar model for finding an appropriate job elsewhere or for self-employed people.)

Apologies, not able to word that better now but I think it could be a relevant topic also for the NICE roundtable. I also wonder whether one of the IAG's patients representatives could share some insights on this topic perhaps. I realize it's only relevant for the mildly affected. I think though many of us have asked ourselves if we hadn't pushed through early on but could have managed to financially exist with working less for an undetermined period of time, perhaps we would not have deteriorated healthwise.

Edit: Removed quotes that were left over from another reply.

 

[Trish]

As far as I know, you have to be on very low earnings to get any top up from the state in the UK from Universal Credit (government work related benefits). Back when I was working over a decade ago, we just had to live on my part time salary. There was no top up available from anywhere to make up for me not being well enough to do longer hours.

I don't think this sort of detail can be covered in the NICE roundtable which has been set up by NICE to try to get Royal Colleges to support implementation of the guideline by explaining the evidence on which the guideline is based.

 

[Invisible Woman]

I wonder if in the UK there is something like a partial retirement based on reduced earning capacity so that people get a financial compensation if they cant' work full time without urging you to either approve to a pre-defined phased return nor to try how you get on with a part time job on their own.

Not in terms of state benefits. There isn't any flexibility built in.

In PHI terms (policy that covers people unable to do their previous jobs) - these policies are not considered as partial retirement and the claimants are usually subject to regular reviews similar to those carried out by the Benefits Agency.

I know a teacher whi was given early retirement on health grounds many years ago. It's a very paltry sum (though still more than state benefits). If she managed to recover sufficiently to do a different part time job then that payment is nit affected and she isn't required to undergo any reviews.

I agree with @Trish, the round table isn't going to address any of that because these things are beyond the scope of NICE's remit. The final guideline may well make a difference to how hard a patient is pushed towards the "rehab" route though.

 

[MSEsperanza]

As far as I know, you have to be on very low earnings to get any top up from the state in the UK from Universal Credit (government work related benefits). Back when I was working over a decade ago, we just had to live on my part time salary. There was no top up available from anywhere to make up for me not being well enough to do longer hours.

I don't think this sort of detail can be covered in the NICE roundtable which has been set up by NICE to try to get Royal Colleges to support implementation of the guideline by explaining the evidence on which the guideline is based.

Thanks, Trish, and again apologies for not being on point.

I tried now several times to look up in the draft guideline what it says about patients' coping with work, especially about younger patients' coping with planning a career, and doctors' roles in issuing sick leaves, referring to disability assessment, supporting benefit claims and the like, but every time I forget what I found.

I even forgot whether the guideline is supposed to explicitly deal with this topic and the uncertainty when there is no robust evidence.

If I were a doctor I think that would be one of my questions about implementing the guidelines, though.

 

[Invisible Woman]

I tried now several times to look up in the draft guideline what it says about patients' coping with work, especially about younger patients' coping with planning a career, and doctors' roles in issuing sick leaves, referring to disability assessment, supporting benefit claims and the like, but every time I forget what I found.

The doctor's input is by way of what is now ironically called a "fit note".

I don't think the guidelines will change much about the way people areleft in limbo in terms of career planning and si forth because it's not as though there's currently a treatment that will make things better. Just treatments to be avoided that make patients worse and that there's no evidence for.

At best, if the guideline is published maybe doctors, physios and occupational therapists might be less gung ho about recommending patients who are not fit for work undergo GET and CBT.

 

[Simbindi]

The doctor's input is by way of what is now ironically called a "fit note".

I think the Chair of the roundtable is the person behind the introduction of these. They were introduced specifically to prevent patients 'falling out of work' because they were unable to do their current job role. They are designed to put the onus on the employer to find their 'sick' employee an adapted or part time role that they supposedly can 'manage'. However, most sick patients get their GP to issue a fit note that states they are not able to do anything (not what the DWP likes).