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

[TiredSam]

The convalescent patients are all 'he'.
women didn't get sick, just hysterical.

On the rare occasion that a woman did get sick, the house would be invaded by other women (maiden aunts and the like) to look after her.

 

[Mark Vink]

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.
###
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.!

Thank you for your compliments and comments. As far as older age and prognosis is concerned, your concerns about that are answered in the text (see attached screenshot)

 

[Ravn]

@Mark Vink, is this sentence correct or did some gremlins get in? It seems counterintuitive that being more functional early on would be indicative of being less functional later.

However, analysis of the outcome of treatments in the National Health Service (NHS) CFS clinics (n = 1643) by Crawley et al. [45] revealed that older age, increased pain and physical function at assessment were associated with poorer physical function at follow-up.

 

[rvallee]

@Mark Vink, is this sentence correct or did some gremlins get in? It seems counterintuitive that being more functional early on would be indicative of being less functional later.

That should probably read "increased pain and lower physical function"?

 

[Mark Vink]

@Mark Vink, is this sentence correct or did some gremlins get in? It seems counterintuitive that being more functional early on would be indicative of being less functional later.

Hi I can see what you mean; here you can see where it comes

 

[Dolphin]

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.

Good points. However, part of the reason there are so many such services is because patients and some patient organisations pushed for services at a time when there was no obvious disease-modifying drug while CBT and GET appeared to have lots of support from RCTs.

 

[Invisible Woman]

Good points. However, part of the reason there are so many such services is because patients and some patient organisations pushed for services at a time when there was no obvious disease-modifying drug while CBT and GET appeared to have lots of support from RCTs.

Absolutely. Unfortunately, every so often you'll see some local patient group or other lobbying for more/better services and treatment. In the current situation that means more of the same and, worse still, the powers that be and the likes of Crawley et al can then claim that patients asked for those services.

They didn't really understand what they were asking for and because they swallowed the story of people like us being "militant activists" , they didn't bother to investigate the politics or the consequences of what they were demanding.

Edit - spelling

 

[Dolphin]

(Not important at all)

I was curious about this sentence:

The most commonly used diagnostic criteria are the Centers for Disease Control and Prevention (CDC) 1994 criteria, better known as the Fukuda criteria [18]. These criteria require 6 months or more of unexplained chronic fatigue and a minimum of 4 out of a list of 8 symptoms as can be seen in Table 1. However, PEM (postexertional malaise) the core symptom of ME/CFS, is only optional and not compulsory for diagnosis, as it is one of the eight additional criteria. Approximately 15% of people labelled by these criteria as having ME/CFS, were in fact healthy people [19].

19. Friedberg, F.; Dechene, L.; McKenzie, M.J., 2nd; Fontanetta, R. Symptom patterns in long-duration chronic fatigue syndrome. J. Psychosom. Res. 2000, 48, 59–68.

Using the CFS symptom criteria [35], 258 (90.5%) long-duration participants and 28 (90.3%) short-duration participants met the case definition of CFS. Only subjects who met criteria for CFS were used in subsequent statistical analyses. Twenty-seven (15.1%) individuals from the significant-other group met symptom criteria for CFS, although the substantial functional impairments (COOP scales) required for CFS were not reported in this subgroup. Thus, they were included in the data analysis as participants in the significant other group.

J Psychosom Res. 2000 Jan;48(1):59-68.
Symptom patterns in long-duration chronic fatigue syndrome.
Friedberg F1, Dechene L, McKenzie MJ 2nd, Fontanetta R.
Author information

Abstract
OBJECTIVE:
Our objective was to evaluate symptom patterns in patients with chronic fatigue syndrome (CFS) who were ill for 10 or more years.

METHODS:
This cross-sectional self-report study compared patient groups with long-duration (median = 18 years; n = 258) and short-duration (median = 3 years; n = 28) CFS to a group of healthy significant others (n = 79) on symptomatic, neurocognitive, and psychological variables. Data were gathered from a 574-item postal questionnaire.

RESULTS:
A principal-components analysis of CFS symptom data yielded a three-factor solution: cognitive problems; flu-like symptoms; and neurologic symptoms. Compared with the short-duration CFS group, the long-duration group had significantly higher CFS symptom severity scores (p < 0.04), largely attributable to increased cognitive difficulties. A subgroup comparison of subjects ill for < 3 years versus those ill 4-7 years suggested that denial coping strategies were more likely in those participants with the shorter illness duration. Significant differences between both CFS groups and healthy controls were found in a number of comorbid disorders. Participants with CFS most often endorsed immune/viral abnormalities and persistent stress as important perceived causes of their illness.

CONCLUSION:
Participants with long-duration CFS reported a large number of specific cognitive difficulties that were greater in severity than those reported by participants with short-duration CFS. The pattern of comorbid disorders in the CFS groups was consistent with hypersensitivity and viral reactivation hypotheses.

PMID:
10750631
DOI:
10.1016/s0022-3999(99)00077-x

 

[Dolphin]

In case anyone is curious about what the following is based on:

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.

This is the section from the paper that I recall dealt with this:
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2.3.1. Illness Management in the Initial Stages The most important prognostic factor is how the illness is managed in its initial stages according to Dr. Ramsay [36], the infectious disease specialist involved in the management of the almost 300 patients, mainly doctors and nurses, who fell ill during the outbreak in the Royal Free Hospital in London in 1955. He also noted that most patients will try to go back to work in the initial stages when they are improving. With many other illnesses that does not pose a problem, yet with ME/CFS it does. Patients who have a period of enforced rest in the initial stages of their illness tend to have the best prognosis [36].

36. Ramsay, M. Myalgic Encephalomyelitis: A Baffling Syndrome with a Tragic Aftermath; ME Association: Gawcott, UK, 1986.

I'm not sure any empirical findings are mentioned with regard to this.

 

[Tom Kindlon]

To facilitate sharing:

 

[Tom Kindlon]

 

[Tom Kindlon]

From a Dutch ME/CFS study:

"Approximately 77% of these 23%, however, needed adjustments to work. Many had to reduce their hours, were now doing sedentary and less physical work, often involving work behind a computer. Also, less people were able to work in management positions."

 

[Tom Kindlon]

 

[Tom Kindlon]

 

[Tom Kindlon]

 

[Tom Kindlon]

 

[Dolphin]

Minor point:

Collin and Crawley [111] analysed the efficacy of treatments provided by 11 CFS/ME specialist services in the UK (n = 952). These services treated patients with CBT, GET, a combination of both or activity management which was more effective in fatigue reduction at 12 months follow-up than CBT and GET. Also, there was no change in employment situation after treatment in the NHS clinics in 47.2 % cases. 18.0% were able to return to work or increase their hours and 30.0% stopped working or reduced their hours because of ME/CFS. Therefore, the net effect was that 12% stopped working or reduced their hours after NHS treatment.

There has been no change in my employment situation 47.2% (186/394)
I have been able to return to work or increase my hours 18.0% (71/394)
I have stopped working or reduced my hours because of CFS/ME 30.0% (118/394)
I have stopped working or reduced my hours for other reasons 4.8% (19/394)

Really, Collin and Crawley should have sub-divided:
I have been able to return to work or increase my hours
into
I have been able to return to work or increase my hours because of CFS/ME
I have been able to return to work or increase my hours for other reasons

Some people might have been out of work or had reduced hours due to caring duties of one sort or another e.g. parental leave. They might now be doing more hours because the caring responsibilities may have reduced, but their CFS/ME may not have improved. So the real difference may be more than 12%. But I suppose papers have word limits, so the authors of the current paper can't make all the points they might like to make about other data.

 

[Tom Kindlon]

 

[Dolphin]

Might be useful for people who are trying to build up a case to get early retirement:

Patients with ME/CFS and Fibromyalgia (FM)—FM is a comorbidity in 50% to 60% of cases—are three times more likely to become non-improvers than those without FM [44]. Patients who are more ill and have comorbidities are less likely to be able to work than those with milder ME/CFS without comorbidities [3].

44 Ciccone, D.S.; Chandler, H.K.; Natelson, B.H. Illness trajectories in the chronic fatigue syndrome: A longitudinal study of improvers versus non-improvers. J. Nervs. Ment. Dis. 2010, 198, 486–493. [Google Scholar] [CrossRef] [PubMed]

3 Castro-Marrero, J.; Faro, M.; Aliste, L.; Sáez-Francàs, N.; Calvo, N.; Martínez-Martínez, A.; de Sevilla, T.F.; Alegre, J. Comorbidity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Nationwide Population-Based Cohort Study. Psychosomatics 2017, 58, 533–543. [Google Scholar] [CrossRef] [PubMed]

 

[Dolphin]

Although many patients are eventually retired, such action should be a last resort. On the other hand, the prognosis for recovery and substantial improvement that enables a return to work is poor if patients have been off work for 2 to 3 years. This was confirmed by the Inspectorate Work and Pay of the Dutch Ministry of Work and Social Affairs [177]. This Inspectorate concluded that if patients have been on long-term sick leave for two years or more and treatment with CBT did not make a difference, then the prognosis for a return to work is poor.