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

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

 

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.

 

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.

 

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.

 

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

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).

 

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......

 

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?

 

@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.

 

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?

 

@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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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).