Work Rehabilitation and Medical Retirement for [ME/CFS] Patients. A Review and Appraisal of Diagnostic Strategies, 2019, Vink et al

[Andy]

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome leads to severe functional impairment and work disability in a considerable number of patients. The majority of patients who manage to continue or return to work, work part-time instead of full time in a physically less demanding job. The prognosis in terms of returning to work is poor if patients have been on long-term sick leave for more than two to three years. Being older and more ill when falling ill are associated with a worse employment outcome. Cognitive behavioural therapy and graded exercise therapy do not restore the ability to work. Consequently, many patients will eventually be medically retired depending on the requirements of the retirement policy, the progress that has been made since they have fallen ill in combination with the severity of their impairments compared to the sort of work they do or are offered to do.

However, there is one thing that occupational health physicians and other doctors can do to try and prevent chronic and severe incapacity in the absence of effective treatments. Patients who are given a period of enforced rest from the onset, have the best prognosis. Moreover, those who work or go back to work should not be forced to do more than they can to try and prevent relapses, long-term sick leave and medical retirement.

Open access, https://www.mdpi.com/2075-4418/9/4/124

 

[Sean]

Thank you, Mark Vink and Friso Vink-Niese.

 

[Simbindi]

I haven't yet read through the whole paper, but a very quick glance over it makes me hope this article will be given serious consideration by the NICE review group.

To me, NICE should consider the demands placed on a working age PWME as being part of their healthcare management, and take into account any relevant research evidence on this as part of their 'evidence review'. Any demand that prevents a PWME from being able to pace their energy demands effectively, will lead to a deterioration in their condition, both immediately and culmulatively.

I am just looking in more detail at the DWP Employment and Support Allowance (ESA) and Universal Credit (UC) guidance on how the Maximus Health Care Professional (HCP) and the DWP Decision Maker (DM) reach their recommendations and final decision about whether a claimant meets either (or both) of the 'limited capability for work' and 'limited capability for work related activity' criteria.

An important point for the NICE committee is that the benefit claimant is not allowed to send the DWP/Maximus any information or research on their condition. If they do, it won't be read. Instead the HCP and DM are expected to 'learn' about the condition themselves (and yes, this can include via Google), as well as refer to any DWP and NHS information on it. This makes the ME/CFS NICE guidelines very relevant to any PWME who needs to claim out of work sickness benefits.

Another important point, is that the ESA/UC DWP assessor's manual emphasises how good work is for a disabled/sick person! Their reasoning is unevidenced (the evidence they have used in documents that they are basing these recommendations has the proverbial 'circle jerk')*. The following is a direct quote from the current manual:

There is a strong evidence base showing that the right sort of employment is generally good for physical and mental health and well-being. “When their health condition permits, sick and disabled people (particularly those with ‘common health problems’) should be encouraged and supported to remain in or to (re)-enter work as soon as possible because it:

• is therapeutic;
• helps to promote recovery and rehabilitation;
• leads to better health outcomes;
• minimises the harmful physical, mental and social effects of long-term sickness absence;
• reduces the risk of long-term incapacity;
• promotes full participation in society, independence and human rights;
• reduces poverty; and
• improves quality of life and well-being.”

So you should not assume that recommending that a claimant is fit for work or for work related activity will trigger substantial risk to physical or mental health.

*Edit: I have created a thread to discuss the quality and controversial nature of the evidence used by the DWP in its ESA manual to promote the concept that 'work is good for sick and disabled people'. You can see the document the above quote has been taken from by following the link in the first post of this thread:

https://www.s4me.info/threads/work-...iscuss-the-evidence-for-this-statement.11403/

 

[Trish]

I've just finished reading this. Thank you @Mark Vink for such an important paper.
I hope the NICE guideline committee will take note, particularly of the conclusion which puts it all together succinctly and clearly. I have taken the liberty of copying it here, and highlighting a couple of vital points:

7. Conclusions

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome leads to severe functional impairment and work disability in a considerable number of patients.

The majority of patients who manage to continue or return to work, work part‐time instead of full time in a physically less demanding job.

The prognosis in terms of returning to work is poor if patients have been on long‐term sick leave for more than two to three years. Being older and more ill when falling ill are associated with a worse employment outcome.

Cognitive behavioural therapy and graded exercise therapy do not restore the ability to work.

Consequently, many patients will eventually be medically retired depending on the requirements of the retirement policy, the progress that has been made since they have fallen ill in combination with the severity of their impairments compared to the sort of work they do or are offered to do.

However, there is one thing that occupational health physicians and other doctors can do to try and prevent chronic and severe incapacity in the absence of effective treatments.

Patients who are given a period of enforced rest from the onset, have the best prognosis. Moreover, those who work or go back to work should not be forced to do more than they can to try and prevent relapses, long‐term sick leave and medical retirement

Edit:

Adding a few random thoughts: This article demonstrates just how badly served we are by the Oxford and Fukuda definitions which have so contaminated research of the sort used in evidence in this paper, as Mark Vink rightly points out. There is so little information on people with CCC or ICC criteria ME that require PEM.

And one thing I noticed in scanning quickly through the trials included that purported to be studying people with 'severe ME' yet 36% of them were working at the start of the trial, some of those full time. That's not severe ME by any definition I've heard of.

Friedberg et al. [116] was set up to assess the efficacy of behavioural self‐management (CBT delivered by a booklet and audio CDs) in severe ME/CFS.

The authors concluded that there was significantly reduced fatigue at three months but not at twelve‐month follow‐up compared to the no treatment control group (usual care). Also, that it appeared to be less effective in comparison to findings reported for higher functioning groups by other trials. The trial found that behavioural self‐management did not lead to objective improvement (actigraphy, step counter and six‐minute walk test).

At baseline, 15.3% (21/137) worked full time and 21.2% (29/137) part‐time or halftime. No employment data is available from follow up. The high rate of participants working at baseline Diagnostics 2019, 9, 124 26 of 40 together with the distance walked during the six‐minute walk test (336 m), raises serious concerns about whether this was in fact a trial for patients with severe ME/CFS.

 

[JemPD]

Another important point, is that the ESA/UC DWP assessor's manual emphasises how good work is for a disabled/sick person! Their reasoning is unevidenced (the evidence they have used in documents that they are basing these recommendations has the proverbial 'circle jerk'). The following is a direct quote from the current manual:

Wow! Thats appalling as it relates to PwME.

I agree that NICE definitely need to see this, I am not well enough to submit evidence to the committee but i hope someone will submit this?

 

[Simbindi]

Wow! Thats appalling as it relates to PwME.

I agree that NICE definitely need to see this, I am not well enough to submit evidence to the committee but i hope someone will submit this?

I put a link to this in the relevant NICE guideline 'call for evidence' thread. I am not in a position to submit evidence myself, but I am sure a committee member will pick up on this (if no one else formally sumbits this).

 

[Simbindi]

I've attached the relevant appendices from the DWP ESA/UC manual (the complete manual is over 250 pages).

I haven't finished my 'close read' of the manual, but so far it appears that the DWP consider 'substantial risk of harm' can only be caused by a mental health condition, although the DWP manual is only their own interpretation of the relevant legislation (that is, a tribunal can make their own interpretation of what is written in the legislation - B&W highlight this in their guide books).

 

[Peter]

Not read the paper yet, but looking forward to it. Just a glimpse so far, and it is so important to address this. The fact is we’re no way near a cure. That is in every case a lot to ask. What we, after all these years could label a reasonable expectation from a patient perspective, are soothing treatment options. But sadly we’re not there either. Science must take care and solve that in the end.

What patients while waiting should emphasize over and over again, the ones who have the shoes on and lived through it, is exactly the experience of how damaging and dangerous an idea of pushing through early on is. Looking at the statistics and gaining knowledge from patients, what they did early on and how the disease develops, is very telling. There should be no doubt that lengthy proper rest initially can have great positive impact. I don’t know if that is a valid statement, but what we can say with certainty is that pushing through have no place in rehabilitation of ME patients. But the idea of rest is so hard to understand. For people in general, and I would say especially doctors. There is probably no such thing as rest as prevention in a culture that often is unhealthy competitive. So getting a doctor to understand and accept the concept that some rest could be valuable at a given time, well that seems close to impossible. My personal view on this, is that a whole different approach early on could have saved life’s, improved health for so many patients. It is all about minimizing harm. That is absolutely vital, especially in a situation where there are no treatment options. Something close or similar to unlimited irreversible damage are often the ultimate price to pay following a push through regime.

A push trough regime and work are closely linked. Because it is considered so important from so many angles, culturally, personally and health-wise to be working no matter what, many have tried exactly that, almost at any cost. Many patients have tried, sacrificing absolutely everything else, made adjustments of all kinds, then experiencing deteriorating health, - at one point it is all over. The price is grimmer than anything else.

The thing important to try to get across here, is that it’s just not that easy that “upholding of work” is always good for you. It is not true that this approach automatically create health, so to speak. Many have tried, many have failed. Upholding work and tasks, having a little social life with colleagues and all such things, that’s fine, but to say it frankly - those things don’t matter if the price is deteriorating health and finally getting severe setback, finally being out of work for forever.

1. Push trough is absolutely rubbish for ME patients.

2. The old saying that work always is good for you at any cost, is not true.

 

[rvallee]

Important paper. It shows very clearly the complete failure of the current paradigm in effecting any change despite a solid 2 decades of implementation, as well as showing, once again, that there is no significant difference between countries that adopted the "rehabilitate idiopathic chronic fatigue from so-called 'unhelpful beliefs' and imaginary fluctuating deconditioning" model and those that did absolutely nothing.

It would be interesting to account for how much was spent on the implementation of the CBT/GET guidelines and the various services working with this paradigm. All this money accounted for no change at all, it clearly has no benefits whatsoever and represents a failure of adapting to reality and should clearly rather be spent on actual medical research. This entire paradigm needs to be retracted, buried and studied for decades to come as a prime example of how medicine can be completely derailed by charlatans and the pipe dreams of magical psychology pseudoscience.

If doing nothing gets you the exact same failed results as spending millions over several decades, there is no better comparison to show those funds have been utterly wasted and have failed the primary beneficiaries of those services: the patients. Proponents of the model insist they feel it's right and helpful and that they have anecdotes to support this feeling. It's been 2 decades and the hallmark bullshit rationale of pseudoscience everywhere is simply not acceptable at this point.

If I knew nothing of what it is, this would be my idea of what psychosocial research means: the impact and outcome on personal and social functioning of health-related problems and disability. Puts to shame the entire school of thought.

 

[ME/CFS Skeptic]

I planned to read this thoroughly later on, but I was so curious that I already had a quick look. Here are my thoughts.

Like most of Vink's papers this is a dense source of information (183 references!). This must have been an enormous amount of work. Even the introduction and intermediary text have interesting viewpoints, references or useful descriptions. I would advise reading it slowly to take everything in.

I do think that the text would have been more powerful if it had been split up into two papers: one containing the information on prognosis from follow-up studies and one on randomized trials that had work-related outcomes. I think the latter is very much worth highlighting because I suspect a lot of healthcare professionals involved in ME/CFS do not fully realize how consistent the evidence is that CBT and GET do not lead to work rehabilitation. Here we don't have any biases obscuring the results, so I think this is one of the outcomes in ME/FS that we can be fairly certain of. Vink & Vink-Niese now provide an extensive overview of this (table 4) which will be useful to refer to. Many thanks for that!

Regarding prognosis, I want to highlight one thing: I don’t think (old) age is a significant factor in prognosis. There have been quite a lot of studies (Bombardier et al., 1995., Vercoulen et al., 1996., Pheley et al., 1999, Reyes et al., 1999, Ciccone et al., 2010) that didn’t find a relation between age and prognosis and only two (Jason et al. 2011 and Tiersky et al.) that clearly did. Vink & Vink-Niese seem to have included studies on patients fulfilling only the first (chronic fatigue) criteria of the Fukuda criteria (for example in Clark et al. 1995 and Bombardier et al., 1995), possibly because their review includes the Oxford criteria as well. But Bombardier also had results for full CFS and these did not show a relationship between age and prognosis. To be clear: Vink and Vink-Niese are careful in their conclusions and focus on work-related outcomes but as there are other papers who have suggested older age is associated with poor prognosis (the Joyce et al. 199, Stroothoff et al. (2017)) that I thought it might be worth pointing this out.

There is one part in the conclusion that I do disagree with, namely that “Patients who are given a period of enforced rest from the onset, have the best prognosis.” I haven’t read all the prognosis studies in this review but I highly doubt that we have sufficient evidence to make that claim. I suspect this is only based on the judgement of ME experts such as Ramsay. I don’t want patients, who might have had to chance to rest more at the beginning of their illness, feel guilty or think that they would be less ill if they had rested. This could be true, but we don’t really know that at the moment.

I also have some questions/thoughts on misdiagnosis. I was surprised to see two studies that reported up to 25% misdiagnosis in ME/CFS because I thought most follow-up studies estimated this to be lower than 10%. If I'm not mistaken, the Mørch et al. 2013 study (reference 35) that gives the high 24,5% figure was about patients with chronic fatigue after Giardia infection, so a broader group than CFS patients. In the other two studies cited (reference 33 and 34) the patients developed exclusionary conditions (for example breast cancer or melancholic depression), which might not be exactly the same as misdiagnosis. Would be interested to hear what others think of this and what would be a reliable estimate for misdiagnosis in ME/CFS. The paper also writes: “up to 50% of patients diagnosed with ME/CFS have an alternative explanation for their symptoms [25,26]” But I think references 25 and 26 were studies of patients referred to a ME/CFS specialist centre, so in whom the CFS diagnosis was provisional or merely suspected by the GP. As I interpret it, the patients were partly sent to the specialist centre to check if they really have CFS and do more tests for possible exclusions. I suspect that the misdiagnosis rate would be lower than 50% in patients who have received a diagnosis of CFS. But I could have misunderstood.

Anyway, a thought-provoking article with a lot of information. I probably have to read it again to fully grasp everything.

Many thanks to Mark and Friso for their hard work on this (and Emerge Australia for paying publication charges)!

 

[Hoopoe]

There is one part in the conclusion that I do disagree with, namely that “Patients who are given a period of enforced rest from the onset, have the best prognosis.” I haven’t read all the prognosis studies in this review but I highly doubt that we have sufficient evidence to make that claim. I suspect this is only based on the judgement of ME experts such as Ramsay. I don’t want patients, who might have had to chance to rest more at the beginning of their illness, feel guilty or think that they would be less ill if they had rested. This could be true, but we don’t really know that at the moment.

Thank you for pointing this out. One would need a clinical trial or some other compelling data to know whether this was true or not. I doubt these exist.

 

[Sean]

I suspect a lot of healthcare professionals involved in ME/CFS do not fully realize how consistent the evidence is that CBT and GET do not lead to work rehabilitation.

This is a point we could and should make more use of in our arguments. The evidence, including from PACE, is very clear – there are no treatments of any kind that restore the ability to work, or do anything else for that matter.

“Patients who are given a period of enforced rest from the onset, have the best prognosis.” I haven’t read all the prognosis studies in this review but I highly doubt that we have sufficient evidence to make that claim.

Agree with that. I strongly suspect it is true, but we don't have good evidence for it at this stage.

Just another one of the many things about ME that needs to be studied more carefully.

 

[rvallee]

This is a point we could and should make more use of in our arguments. The evidence, including from PACE, is very clear – there are no treatments of any kind that restore the ability to work, or do anything else for that matter.

Strong agree. Especially in the context of an obsession with employment as a measure of, well, everything frankly. If work is good for your health then returning to employment would obviously be good for our health. Yet we don't, except temporarily in relapsing-remitting cases (though those aren't even acknowledged).

The rhetoric is over "better than nothing" and very weakly at that. Yet objectively, it leads to no improvement in employment. In fact PACE abandoned the planned employment outcome, because it was null. At the very least this makes it an invalid treatment as far as disability assessment go.

You can say PACE "helped", but so does free beer at the end of the day, if all you're doing is self-reports. Helped what? No one has returned to employment as a direct result of such treatments so what good are they if the alleged improvement is this insignificant?

 

[Barry]

However, there is one thing that occupational health physicians and other doctors can do to try and prevent chronic and severe incapacity in the absence of effective treatments. Patients who are given a period of enforced rest from the onset, have the best prognosis. Moreover, those who work or go back to work should not be forced to do more than they can to try and prevent relapses, long-term sick leave and medical retirement.

As I've posted before, when I was an 18-yr old apprentice in the RAF in the early '70s and caught glandular fever (relatively mildly compared to some I was told told), I was bemused by how grave they sounded when they told me. I was put on enforced bed rest initially and not allowed out of sick bay for 3 weeks or so, and then sent home on sick leave for 5 weeks with very strict instructions to be lazy and do very little, and to eat lots and lots of fruit. Then on my return I was put onto light duties for quite some time. Rather than graded exercise it was graded rest.

I never did go down with ME (it's my wife who has ME), though there were a few times along the way I wondered if it was coming back to bite me. I do recall the nursing staff emphasising how careful I needed to be and that it could be really serious if I did not do as instructed. I've often wondered of I'd not been given this advice, would I now perhaps have ME.

It seems to me that before the BSP-psychs got involved there was much better perceived wisdom about such things. Am I right, was there? And if so how did the BPS crowd manage to make such a land grab and cock it all up? Or is there something about the forces, did they have better awareness? Or was I just lucky?

 

[Mithriel]

Convalescence after an infection (and fruit!) was still used in the 70's. I think that may have been because it was not that long since antibiotics became readily available and people still remembered how infections developed when there was no treatment except good nursing.

Nigel Speight has spoken about having allies on the nursing staff who would make sure his young patients were allowed to rest (he also tried to get them wheelchairs and the like). He firmly believes that the ones who did this had the best prognosis.

Resting instead of pushing yourself is so counterintuitive in our society that we need medical people to insist we do it. I don't suppose it will ever be common for every infection so the damage must be accounted for when it does become apparent later.

It also means that, in this case, we may have to look at expertise and anecdote from the past.

 

[Hutan]

Yes, agreed about convalescence. I think it was when there weren't wall-to-wall antibiotics or immunisations. And so part of it may have been about limiting the spread of contagious things like mumps and measles, but certainly allowing the body to rest so that it could recover was part of it too. I had a book of my mother's that had instructions on how to take care of sick children; it seemed to involve a lot of milk.

Perhaps, if antibiotic options become slim, the concept of convalescence may rise again.

I found this article on diets for convalescence mildly entertaining - from 1935
https://pmj.bmj.com/content/postgradmedj/11/112/77.full.pdf

 

[Barry]

If it is the case that advice to rest and avoid intensive activity when convalescing from a fever tailed off with the introduction of antibiotics, I wonder if there is a corresponding increase in the prevalence of ME?

 

[ladycatlover]

I found this article on diets for convalescence mildly entertaining - from 1935
https://pmj.bmj.com/content/postgradmedj/11/112/77.full.pdf

Ha ha ha ha! Love the Diets for the Aged!

Breakfast in bed and consisting of cereal and cream, roll and butter with marmalade and occasionally an egg. Tea or coffee to drink.

Lunch-the principal meal of the day-a little fish or meat with well-cooked vegetables, milk pudding or boiled pudding, cheese and butter. Water, beer or wine to drink.

Tea-Bread and butter. Plain cakes. Tea.

Supper-In the evening, a glass of hot milk with biscuits.

 

[NelliePledge]

@Hutan it was the comments on ciggies that made me laugh/cry.

 

[TiredSam]

Breakfast in bed and consisting of cereal and cream, roll and butter with marmalade and occasionally an egg. Tea or coffee to drink.

Does this diet come with a free butler?

EDIT: Sorry, forgot, wives stayed at home and looked after everybody then.