Wednesday, 19 August 2015

PoliticalSpeak: MS and employment

Why is so little being done to tackle unemployment in MS? #PoliticalSpeak #MSResearch #MSBlog

"The elephant in the MS room is employment, or more importantly unemployment. In Europe approximately 50% of MSers are unemployed within 10 years of diagnosis; as the average age of MS disease onset is 30 years this mean that 50% of MSers are unemployed by the age of 40. By the time you need a walking aid (EDSS 6.0) the unemployment rate is ~85%. Some countries to better than others; in general wealthy countries with a well-funded welfare system tend to have programmes to keep MSers in work. What is surprising is that MS cause unemployment at relatively low EDSS scores, i.e. at a stage before MSers are 'physically disabled'. Why? Hidden symptoms are almost certainly the main drivers of early unemployment rates, i.e. cognitive problems, fatigue, depression and anxiety. People with MS rarely complain of cognitive problems early on in the course of their disease; they tend to compensate for cognitive problems, which results in cognitive fatigue. Put simply it takes more mental effort and energy to complete the same mental task as a normal person. Tasks which should take 5 minutes to complete take longer and consume much more energy; it is like having to run a marathon instead of walking a mile. In the so called knowledge economy this handicaps MSers; they simply can't keep-up with their peers and fall behind. So many of my patients tell me that when they get home from a full days' work they simply crash and are mentally and physically too tired to complete domestic chores. This forces them to neglect the latter and sets in motion a downward spiral. The stress of underperforming at work, and at home, results in anxiety and this may exacerbate or cause depression. It is therefore refreshing to see a Dutch research group below studying unemployment in MS. Hopefully this study will identify early predictors of unemployment and provide insights on how to prevent it. I suspect the a major predictor will be cognitive impairment."

"Some of you may find it horrifying that when you interrogate CISers (people with their first attack of MS) approximately 30-50% already have cognitive impairment in at least two cognitive domains. This means that pathological processes that underpin cognitive problems in MS are there from the start of the disease. This is why I am a big supporter of early effective treatment in MS; the sooner we treat MS and stop, or at least slow down, the accumulation of gray matter (the part of the brain where cognition resides) damage the better we are able to preserve cognition and hopefully 'employment'. I say hopefully, because we simply have not collected the relevant data to show this directly, all we can do it assume this is what we are doing with our therapies using proxies for employment such as quality of life and disability scores."

van der Hieleet al. The MS@Work study: a 3-year prospective observational study on factors involved with work participation in patients with relapsing-remitting Multiple Sclerosis. BMC Neurol. 2015 Aug 12;15:134.

BACKGROUND: Multiple Sclerosis (MS) is the most common cause of neurological disability in young and middle-aged adults. At this stage in life most people are in the midst of their working career. The majority of MS patients are unable to retain employment within 10 years from disease onset. Leading up to unemployment, many may experience a reduction in hours or work responsibilities and increased time missed from work. The MS@Work study examines various factors that may influence work participation in relapsing-remitting MS patients, including disease-related factors, the working environment and personal factors.

METHODS/DESIGN: The MS@Work study is a multicenter, 3-year prospective observational study on work participation in patients with relapsing-remitting MS. We aim to include 350 patients through 15-18 MS outpatient clinics in the Netherlands. Eligible participants are 18 years and older, and either currently employed or within three years since their last employment. At baseline and after 1, 2 and 3 years, the participants are asked to complete online questionnaires (including questions on work participation, work problems and accommodations, cognitive and physical ability, anxiety, depression, psychosocial stress, quality of life, fatigue, empathy, personality traits and coping strategies) and undergo cognitive and neurological examinations. After six months, patients are requested to only complete online questionnaires. Patient perspectives on maintaining and improving work participation and reasons to stop working are gathered through semi-structured interviews in a sub-group of patients.

DISCUSSION: Prospective studies with long-term follow-up on work participation in MS are rare, or take into account a limited number of factors. The MS@Work study provides a 3-year follow-up on various factors that may influence work participation in patients with relapsing-remitting MS. We aim to identify factors that relate to job loss and to provide information about preventative measures for physicians, psychologists and other professionals working in the field of occupational health. 


  1. Definitely a study to watch. I personally find MS and employment the most stressful circumstance to deal with, not just for the financial change in circumstances, but also it's potential to affect sense of worth, inclusion in society etc. Given that cognition, fatigue, stress, anxiety and depression are potentially the biggest barriers to working, I do feel somewhat lost as to when to decide enough-is-enough. Whilst this is obviously a very personal choice, it is very hard to know whether, for example, continued working wherein the MSer finishes work every day absolutely exhausted is causing further damage / faster progression, in the same way as chronic stress / anxiety. Also, it is hard to know how 'bad' the fatigue / anxiety etc. actually are as it can be difficult to take a step back when you are anxious / stressed / fatigued. Finally, giving up current job roles may burn bridges in terms of getting back to regular employment at a later date, as getting a job requiring reasonable adjustments, part time hours etc. is not exactly easy especially in the current climate. So the decision as to when to give up a job is an incredibly loaded one, and one in which I believe MSers could do with a lot more support with, including information on fatigue and it's relationship with MS progression / damage as well as a better understanding of how these hidden symptoms can be either managed or come-to-terms with.

    I am surprised that neuros do not take additional metrics such as the Modified Fatigue Impact Scale (MFIS) in addition to EDSS to both measure the hidden symptoms (to aid in DMT choice?) AND provide evidence for benefit applications. Something for us MSers to ask?

  2. With PPMS, I have not suffered noticeable cognitive impairment thus far. But the career I studied and wished for has certainly been brought to a close due to MS fatigue. In my last job, I had regular migraines when overdoing it, continence issues which made me dread meetings over an hour long (and if I wasn't desperately needing to visit the toilet towards the end, I was usually struggling to stay awake due to the aforementioned fatigue). And the working environment made me feel increasingly isolated as I began to struggle to walk to the kitchen for lunch to talk to colleagues, preferring to stay at my desk rather than drag myself down the corridor, especially on hot days (Uhthoff's cofounded phenomenon). And being too tired to go to training, team building or social events didn''t help. I find that people, though they may have the best will in the world, struggle to understand MS fatigue. You can tell people all about it, but whether they actually _understand_ is a different matter. And even if people do understand, the pace of life for most people means that they cannot make all the allowances they may wish to.

    Although I gave my last job all I had to give, I was - I felt - beginning to become an unreliable employee due to my health issues. Given that I feel that pushing too hard very possibly accelerated progression during my last job, I would like to work at home for the most part in future.

  3. Fatigue and Cognitive Problems are certainly MS symptoms that cause more problems for EM'ers in their jobs ... I look for Fatigue and wonder: is that one day we will have effective fatigue treatment forms as are emerging treatments for spasticity? ...

  4. Hi Gavin,

    Been reading all this data, months back I read a limited study from the State of Washington (Not DC). Which I located as shown below. This may not and is probably not indicative of the nation as a whole. Many folks here say further south one goes less MS but not sure I buy into that.

    I live in Upstate NY and I have heard some say between Buffalo NY, Rochester NY and Syracuse incidents may be as high as 40K, hard to believe. I cant seem locate tangible numbers. Across Lake Ontario in Canada, very high. This was all industry zones, chems, from Michigan all the way through the great lakes and jet streams usually sucking it up hence the acid rain of the 70's.

    Anyways here it is:

    Title Predicting unemployment in people ageing with multiple sclerosis.
    Publication Type Journal Article
    Authors Johnson KL, Bamer AM, Verrall A, McMullen KA
    Journal Multiple Sclerosis
    Volume 17
    Issue 10 Suppl
    Pagination S486

    Background: Older adults who have a disability report higher rates of unemployment than older adults without a disability and one of the significant risks associated with disability is poverty. Approximately 90% of individuals diagnosed with MS are employed before their diagnosis, but as few as 30% remain working in as little as 5 years after diagnosis. About 40% of unemployed people with MS want to return to work. Little is known about changes in employment status for people with MS as they age. Objectives: Examine the predictors of unemployment stratified by age groups in people with MS. Methods: Data were analyzed from a cross-sectional survey of community-dwelling people with MS (n = 1,271) collected in 2006. Participants were recruited from the Greater Washington Chapter of the USA National MS Society (NMSS) and were eligible if they self-reported a diagnosis of MS and were at least 18 years of age. Measures of secondary conditions, employment status, history of MS, and demographic characteristics were included in the survey.A stratified, prediction logistical regression was run across 4 age groups (18 – 34 yrs, 35 – 44yrs, 45 – 54 yrs, 55-64 yrs) and gender, duration of MS, EDSS Mobility, MS subtype, education level, problems thinking, cognitive fatigue, physical fatigue, pain, depression, and sleep problems were included as predictors. Results: The percentage of unemployed among people with MS climbed from 39% of 18-34 yr olds to 47% of 35-44 yr olds, to 58% of 45-54 yr olds to 75% of 55-64 yr olds. Predictors of unemployment were similar throughout the 3 middle age groups (35 – 64 yrs) and included duration of disease, EDSS mobility level, problems thinking.Predictors differed in the youngest age group (18-34 yrs) where only education level was a statistically significant. Also, the contribution of pain as a significant predictor only occurred in the 35-44 age group. Conclusions: People with MS are more likely to be unemployed when their MS progresses including mobility limitations as well as cognitive impairments. Surprisingly, secondary conditions of fatigue, depression, and sleep problems were not associated unemployment. Programs and services to support employment should target people with MS who are experiencing mobility and cognitive changes as they age.

  5. Of other note, me again. Upstate NY :)

    I am a programmer and I messed abut quite a bit many moons ago with Neural Network programming. Am new to the MS scene. My fiance has MS, 8 years, no DMT's, did LDN. Only 7 weeks back finally on Tecfidera and began having enormous mind splitting headaches. Not sure if its the med as of yet.

    That aside. Coder in me:

    Lastly, like I said, I am learning. Am a programmer. The Brain/Immune system has much in common and I was very into the neural net programming when it was the in thang.

    Something struck me and I dont know if it makes sense not being a med guy.

    What *IF* the active immune system is actually NOT askew? That is to say people have differing levels of emotional / life stress and subsequent reaction to it which impacts a persons physiology. What if the initial CIS event is a result of the immune system saying, "We have a problem up there?". That is to say, it clearly is thinking an antigen is at work and going to assault it.

    Maybe all the doors need be in a line for CIS to happen, to be triggered. From that point the immune system remembers just as it remembers the mumps or researchers trying to give flu shots hoping that they hit on a close match and the immune system thus being able to recognize the antigen and hop to "the quick step" into action.

    Once it remembers that it had an antigen in the CNS it misconstrues "symptom" of antigen and bam, MS attack be it a physically (symptom) showing attack or a silent one leaving the patient rather not knowing.

    This would mean that the immune system is actually doing exactly what it is supposed to do. But now from whatever the stress's are that it is misconstruing are in memory. Much like old and prehaps even new heuristic based computer algorithms attempted used to learn, remember and become actionable on datum.

    This would explain the rather elusive but also at times PREDICTABLE nature of attacks that MS'rs have. For example, my fiance' KNOWS if she gets too much stress she says she can feel a possible attack coming upon her. In some way perhaps this correlates to where was it the Univeristy of Virginia "mistake" where research students claim to have found a unknown link between the CNS and Brain?

    It might also explain why people for example going to Russia and having their immune system vaporized essentially and then rebooted with stem cells are seeing some real results?

    If this is the case then really the most conducive therapies and from what I read potentially most dangerous are those that re-train the immune system in similar paradigm of how allergies at times are therapeutically attempted to be nulled.

    In computer concept, a virus scanner has a definitions file of known antigens and how to kill them remembered in a file(s). The immune system has that too. So now when it yields a false positive SIMILAR to that which caused the initial CIS incident, off it goes.

    Does this make any sense or am I out in left field without a catchers mitt?

  6. Ms Unites (LINK REMOVED) Thursday, August 20, 2015 9:35:00 a.m. said

    Lastly, Me, Upstate Programmer fella.

    We just deployed MS Unites, literally 4.5 hours ago. Has a LONG way to go. As I said, been learning about MS.

    We were at a Genzyme sponsored event and the guest speaker floored us. We decided to try make a difference.

  7. Dear Amanda
    I understand your concern.

    Based on your reading you may see that some MS drugs appear to have an influence on OCB and others don't, but there are many conditions where OCBS occur.

    Not being a clinician I can not offer specific advice but I would say acute disseminated encephalomyelitis (ADEM) is more common in children than in adults, often making the differential diagnosis of MS, particularly a clinically isolated syndrome, quite difficult.

    One of the neuros may wish to comment but they are unable to talk about specific cases
    remember there are paediatric specialists such as a Great Ormond Street.


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