December blues

D

Barts-MS rose-tinted-odometer: zero-★‘s

How are you feeling today? Are you depressed? Do you know what symptoms of depression to look for? 

When my first patient with MS committed suicide it came as a real shock to me. He was a very likeable 32-year old man with secondary progressive MS. I used to see him at least once a year. I would go out into the waiting area of outpatients and call his name, he would insist on pushing himself into my consulting room in his wheelchair. He was angry and always very impatient when I insisted on going through the usual list of questions about his bladder, bowel and sexual dysfunction, falls, sleep, spasms, mood etc. When I go to the question about his mood he would always answer me with a question; how would I feel if I was in his position? It was his way of saying, yes, I am depressed what do you expect. He was impatient and was always pushing to get to the stage in the consultation when he could ask me questions about all the things he had been researching on the web. 

Can I try this treatment? Is there anything I would recommend to help remyelinate his damage nerves, What do I think of turmeric? Why can’t I have a stem cell transplant? What did I think of very high-dose vitamin D therapy? What about rejuvenation therapy? Why am I not eligible for natalizumab? Are there any trials I can participate in? The questions would come at me like a machine gun firing bullets. What I didn’t realise at the time is that this was his way of trying to find some glimmer of hope in the MS research pipeline; something to give him hope for the future. He was well-read and intelligent enough to know that progressive MS at the time was a one-way street and MS had cost him all of the things he cherished; i.e. his ability to play sport and work, his girlfriend, his friends and more recently his ability to live independently. He had had to move back into his childhood home with his ageing parents for financial reasons. As his life contracted around him he had become increasingly isolated; he had stopped seeing his friends and would rarely go out.

In retrospect, I should not have been surprised to receive an email from his father to say that their son had been found dead in bed with a suicide note. Cause of death suffocation. In the suicide note, he had specifically asked for his remaining savings, just over £9,000, to be donated towards MS research. I suggested to his father that it would be best to donate the money to the MS Society. Unlike Professor Tom Bothwell*, one of my early mentors, who would often attend the funeral of his patients  I didn’t go to his funeral despite being invited. One of my regrets; I had let him down both in life and now in death

This patient taught me that it doesn’t matter how disabled a patient with MS is it is important to be positive and to spread hope. I am not talking about creating false expectations but giving them realistic examples of things that can be done to improve their quality of life and outcome. The latter may be in relation to the latest or future MS research or simple advice about what can be done to improve their day-to-day functioning. Involving patients like this in helping others, in doing research, provides them with a purpose. Don’t underestimate the power of being respected and being wanted. Having self-worth makes life worth living. This is one of the reasons I have become so interested in social capital, the social determinants of health and marginal gains; there is always something you can do to improve the quality of life of someone with MS. Do you agree? This is why we at Barts-MS want to expand our service to provide so much more than neurological support for the patients under our care.

It is clear that mood is a spectrum and it can be quite normal to feel low compared to other times. However, when low mood starts to impact on your ability to function in the home environment (relationships, domestic chores, self-care, etc.), at work (underperforming, missing work, etc.), or socially (avoiding going out or not interacting with family and friends) or you start to have negative and intrusive thoughts about your self-worth and possibly suicidal thoughts, low-mood becomes pathological and you need help. 

Depression also impacts how your body functions and causes the so-called vegetative symptoms of depression that could also indicate that you are depressed; these include weight loss and loss of appetite or the opposite of weight gain and increased appetite, insomnia or excessive sleepiness, fatigue, low energy levels, poor concentration and inattention. So if you have noticed a change in any of these ask yourself whether or not you are depressed.

It is important to realise that depression is very common in people with MS (pwMS); the lifetime prevalence of major depression in pwMS is 40-50%. There are many reasons why pwMS get depressed. Depression can be a reactive depression in relation to the emotional response to the diagnosis of MS, losing your job, getting divorced or been told you have progressive disease. However, it can be due to the effects the disease has on the brain. It is important to know that pwMS who are depressed have a much worse outcome in terms of disability progression. I suspect it is not necessarily depression that causes MS to progress or worsen more quickly, but the damage to the brain that causes a worse MS outcome also causes depression. I suspect MS damages the circuits and neuronal networks that lead to depression.

Kaplan-Meier estimates of age at EDSS score milestones: Kaplan-Meier estimates of age at Expanded Disability Status Scale (EDSS) score milestones 3.0 (A and B), 4.0 (C and D), and 6.0 (E and F) stratified by depression diagnosis (A, C, and E) and exposure to antidepressants (B, D, and F). Image from Neurology.

There are many effective ways to treat MS-related depression so don’t suffer in silence. If you are depressed please speak-up contact your HCP and ask for help. 

Please note that depression and the definition of depression are cultural. Some societies don’t even have a word to describe depression and hence depression in these cultures usually manifest with other systemic complaints such as fatigue, tiredness, poor concentration, insomnia, pain and reduced cognition. So if you are not sure about being depressed you can always complete one of the many online depression screening tools. I would recommend the HAD (hospital anxiety and depression) scale, which has been well validated in pwMS. 

I would be interested to know if you are asked about mood when you have your annual MS follow-up appointment and if you have any advice to give your peers who may be depressed. 

* To read about Prof Tom Bothwell please read my Medium post ‘Emulating your Mentor‘.

Binzer  et al. Disability worsening among persons with multiple sclerosis and depression: A Swedish cohort study. Neurology. 2019 Dec 10;93(24):e2216-e2223. doi: 10.1212/WNL.0000000000008617. Epub 2019 Nov 8.

Objective: Depression is common in multiple sclerosis (MS), but its impact on disability worsening has not yet been determined. We explored the risk of disability worsening associated with depression in a nationwide longitudinal cohort.

Methods: This retrospective cohort study used linked data from 3 Swedish nationwide registries: the MS Register, National Patient Register, and Prescribed Drug Register. Two incident cohorts were developed: cohort 1 included all registered cases of MS in the MS Registry (2001-2014) with depression defined as ≥1 ICD-10 code for depression; and cohort 2 comprised all cases of MS in the MS Registry (2005-2014) with depression defined as ≥1 prescription filled for an antidepressant. Cox regression models were used to compare the risk of reaching sustained disability milestone scores of 3.0, 4.0, and 6.0 on the Expanded Disability Status Scale (EDSS) between persons with MS with and without depression.

Results: Cohort 1 included 5,875 cases; 502 (8.5%) had depression. Cohort 2 had 3,817 cases; 1,289 (33.8%) were prescribed an antidepressant. Persons with depression were at a significantly higher risk of reaching sustained EDSS scores of 3.0, 4.0, and 6.0, with hazard ratios of 1.50 (95% confidence interval [CI] 1.20-1.87), 1.79 (95% CI 1.40-2.29), and 1.89 (95% CI 1.38-2.57), respectively. A similar increased risk among persons exposed to antidepressants was observed, with hazard ratios of 1.37 (95% CI 1.18-1.60), 1.93 (95% CI 1.61-2.31), and 1.86 (95% CI 1.45-2.40) for sustained EDSS scores of 3.0, 4.0, and 6.0, respectively.

Conclusion: Persons with MS and comorbid depression had a significantly increased risk of disability worsening. This finding highlights the need for early recognition and appropriate treatment of depression in persons with MS.

CoI: multiple

Twitter: @gavinGiovannoni 

Medium: @gavin_24211

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

28 comments

  • When I’m feeling low I put on some electronica dance music and start dancing around my kitchen, it’s better than any other intervention for me anyway. It really lifts my mood.

  • I think I am always asked about mood. Definitely at annual appointments and sometimes at my nurse appointments too. I’m actually talking to the nurses now more since COVID as I used to just go in, fill the form out and say I don’t need to talk to a nurse. But now it’s all phone appointments I always speak to a nurse.

  • Well you asked for comment…

    I am 52. Have had a positive MS diagnosis now for 19 years, but had 1st symptoms 21 years ago. I’m now EDSS 8. That’s the context done.

    I’ve always seen myself as being a positive person – perhaps annoyingly so at times. But about 8-10 years ago I noticed that I was getting over emotional at pretty much anything. My final straws were welling up at a Parent’s evening, (I wasn’t the teacher thank God) and sobbing at TV news stories.

    I went to the doctor, talked it through, (cryed a lot) and was put on anti-depressants. I’m still an emotional person – it’s just the way that I am – but I no longer burst into tears at the drop of a hat. And despite my stupid inital ‘concerns’ about medication, I don’t bumble along like a drugged up zombie.

    I find I’m a better person – and my wife tells me so – if I also do my daily exercises. These are pretty mild compared to what I used to do in my youth but there’s still a lot that you can do in a wheelchair with a set of resistance bands. One website that I’ve found really good is the Adapt to Perform site – loads of great exercise videos and ideas for people in chairs or the less mobile generally.

    I also found out that I used to overcompensate, especially at work – doing more, and taking on more responsibility to make up for the limitations my MS placed on me. What a fool.

    PwMS, don’t beat yourself up. Your health is throwing enough shit at you as it is!

    • On reflection the MS nurses did always ask but I always felt it was a very friendly Conversation rather than prompting a more serious reflection and conversation about mood.

  • To first answer the question , have I routinely been asked about my mood during consultation, no the standard questions but no real focus on mood .

    I have had a very trying 2 years of which the darkest moment was in mar-may 2019 after relapsing Aggressively after the birth of my second child , I stopped healing from relapsed and took dramatic hits every 6 weeks. What I now know and can articulate is that the depression is intimately linked to diminished brain activity and lack of cognition. While the thought of being less able is a very depressing thought , it is the cognitive deterioration caused by MS that stop pwMS being able to process their disability and see a new path forward . It is an impossibility for many . Therefore for MS patients or any other neurologically impacted patients depression is a given but it is an entirely different thing than depression for someone who retains their brain function.

    I don’t believe the MS trusts necessarily have the resources to help on this but it should start with the clear awareness that signs of depression, however they manifest themselves, should be seen as a clear step in diminishing cognition related to MS

  • To first answer the question , have I routinely been asked about my mood during consultation, no the standard questions but no real focus on mood . All the team asked how I was doing but more if a general “how’s life” .

    I have had a very trying 2 years of which the darkest moment was in mar-may 2019 after relapsing Aggressively after the birth of my second child , I stopped healing from relapsed and took dramatic hits every 6 weeks. What I now know and can articulate is that the depression is intimately linked to diminished brain activity and lack of cognition. While the thought of being less able is a very depressing thought , it is the cognitive deterioration caused by MS that stop pwMS being able to process their disability and see a new path forward . It is an impossibility for many . Therefore for MS patients or any other neurologically impacted patients depression is a given but it is an entirely different thing than depression for someone who retains their brain function.

    I don’t believe the MS trusts necessarily have the resources to help on this but it should start with the clear awareness that signs of depression, however they manifest themselves, should be seen as a clear step in diminishing cognition related to MS

  • Prof, this is a timely post as today i have been feeling depressed about why a patient (albeit a fortunate one) with MS 15 years ago had access to better treatment than one of today. Please see my post below, from December’s Q and A

    “I have been trawling through the archives on the blog regarding alemtuzumab. The overwhelming view is that to be effective / a potential cure, this treatment needs to be given early in the disease course, before MS has ‘set up shop’. However, when pushed on a definition of early, the responses are vague ‘earlier the better etc’. I know it is not easily defined. However, are you able to offer a little more guidance? lesion load, EDSS, 2 years post diagnosis etc? I ask because patients are using the information on this blog to push their neorologists for certain treatments. As a case in point, a patient relapsing on Ocrevus could in theory push for treatment with Alemtuzumab. However if already too late to the table, they may only end up with a secondary autoimmune issue on top of continued relapses (since the date for Ocrevus turning off relapses is just about the best). This may be Prof G’s area, if he is well enough. I get the impression that a lot of CD20 patients are wondering the same so it is an important topic in my view”

    This is a very sad situation. You are 100% correct about hope – i have been hopeful at every point of my journey so far but slowly, that is ebbing away with each new symptom, relapse, failed trial, realisation that a cure is nowhere near the horizon and even if it was, it would probably be made 3rd line anyway. Sorry to hijack the thread but i wondered whether you could give some insight into the above? a little hope maybe

  • Thought-provoking post. Neither my neurologist or MS nurse has ever asked about mood. To be honest I get the impression they do that to protect themselves from what must be an emotionally exhausting job. I also think I may have reacted in the same way as the gentleman in your post if it was brought up as I actually I perceive your job do be dealing with the structural problems.

    I comment as since I last saw my neurologist I have been treated for post-traumatic stress (not all MS related), I am not sure how and if I will discuss this with them when the moment arises, as I don’t take any medication and I’m not sure that I will be able to muster the emotional strength to go through it. I pursued talking therapies as my GP had sort of suggested it in an indirect manner during a number of interactions I had with him. I definitely didn’t know if it would have any benefit and it almost felt a bit frivolous – I wouldn’t have said I was particularly depressed or anxious. The NHS had a 16 week wait for treatment and I didn’t really feel like I deserved the space. However my university has a counselling service and I had 8 “talking therapy” sessions; apparently I had characteristics of PTSD and was being channelled to a trauma specialist then put onto EMDR therapy. Im surprised at how difficult it has been, but also surprised at how much it has helped.

    I glanced at your posts regarding digital healthcare earlier in the week, perhaps inclusion of a digital MH screening PROM amongst your battery may facilitate neuros in the conversation, and allow for signposting to individuals who are better positioned to help.

  • Well this is a revelation. In 21 years I have never been asked about my mood, but also I can’t recall the last time I was asked about my bladder, bowel, sexual dysfunction, falls, sleep, spasms – none of these. I am being treated by a top MS team in a London teaching hospital, I can only wonder why I have not been asked these things. I have a history of mental health problems, having been treated for depression, OCD and anxiety. I’m sure this must be on my records somewhere but nobody ever asks me how I am coping with these issues plus MS. I am often told or see it written in letters to my GP by the consultants that I am ‘doing well’. I must give the impression that I’m absolutely fine. Fancy that!

  • When you’re ill or receiving healthcare, the main way in which you experience that third order is to see your body as it is seen through the eyes of health professionals. And that is often based on a deficit perspective. When I go to the respiratory clinic, they measure my lung function and compare it to the average person of my age and weight. People often experience receiving healthcare as very demoralising, because it focuses on the dysfunction, because they want to do something about it. That’s just the nature of modern medicine. In cases of chronic illness, where people live with a condition for years, it’s important to counterbalance this deficit view with a view of what is possible. Often when people meet people who live with illness or disability, they’re surprised that they manage to do x, y, or z. The assumption and focus is on what they cannot do. This focus on constraints has to be tempered by a focus on what the person can do; what they enjoy, and so on. The negativity of these encounters result in my starting to experience myself as lacking, because that’s how others experience me. And that is what needs to change.

    This is taken from a recent interview with Harvi Carel – you may already know ProfG that she is a professor of philosophy, who also has LAM.

    I’ve also read another interview where she talks about how you ‘slide down an implicit social ladder’ once you’re ill and that ‘you become an outsider to the world of the healthy’ That ‘illness changes everything my relationship to my body, my relationship to others, their relation to me, to my body… in short illness changes how one is in the world. Adding further in the interview: ‘The geography of my world is no longer a shared one, it belongs to me alone and separates me from the people I walk with. The healthy ones don’t even notice they are healthy.’

    She went on to say she had to find ways to ‘refuse bitterness and envy, the most tempting vice of all’ and to ‘cherish the things I can still do’ She emphasises that she’s ‘discovered that there can be health within illness, joy within difficult circumstances and emotional freedom within the adversity of disability’

    If every single clinician would change one thing about how they engage with patients I’d ask that they include focus on what the person can do as well as the deficits!

    • Great point Fi

      While not wishing to downplay depression in any way, wouldn’t it be great if consultations incuded a session on what you can do, or would like to be able to do, and how to help you do it better.

    • Good post about depression and suIcide, a generally a taboo subject. I do not know the answer: is suicide among the chronically ill an effort to take control of life with no control? If so, wouldn’t your stated interest Prof. G. Of empowering patients to be active participants in their rehab/ care help give some control back to patients and hopefully reduce depression/ suicide rates? Fi, i especially like your reply about Harvi Carel. Who better to describe life with a chronic illness than a sick professor of philosophy? I do not write so eloquently, but my feelings are so similar. Depression and a range of uncomfortable feelings comes with chronic illness. How can it be captured on a surveys that I diligently fill out at the drs office about my “emotional well being”…..”. In the last two weeks have you felt your illness has prevented you from doing activities you wanted to do?”. Agree. Somewhat agree? My life is currently so modified, what is it that I want to do??? I’m not working right now, does that count? I decided to drive my car on empty for an errand because I felt the effort to pump gas too arduous. I still drove, does that count? I prepared more frozen dinners for my family than non frozen, to my families chagrin, does that qualify, I still cooked. What about skipped showers, ponytail hair, dirty laundry and wrinkled unironed shirts, unpaid bills, late correspondence, dust bunnies you see but leave??? If I lower my expectations of what I “want” to do, does that increase my contentment score? What about my quality of life? I remember watching a smiling mother bend and lift her newborn out of a stroller and lovingly swing her baby in the air for a Close cuddle. I have never in my life felt such envy for another person as I sat nearby, with my newborn in my sister-in-law’s arms. I wanted all this strangers’s health and joy as she held her newborn but all I felt was my lack of it. My sister-in-law assured me that i would be able hold up my baby as I got stronger. And I did, but not while my baby was an infant. Like Carel, I am separate from who I walk with. I continue to slide down an implicit social ladder. And with effort and gratitude, I work at ways to refuse bitterness and envy. But can my grief, my level of depression, get scored or found on a glib survey? I disagree.

      • I’m compelled to reply Suebee to say that you may well be underestimating your capacity to be eloquent – this is exact that – a very eloquent reply to ProfG post!

        In fact I’d go so far as to say that your reply should be utilised to refute the use of all glib questionnaires and tick box style questioning. I’m not able to put it so well, but I’ve have had the exact same reaction to the question ‘And how’s your mood?’ being rolled out amongst all the other routine questions about things such as my bladder function. This has me rejecting the notion that this in anyway addresses how I am within myself psychologically!

  • Depression is an extremely important illness that must never be overlooked. Patients with any medical illness, especially chronic and/or life threatening illnesses, should be evaluated for comorbid depression regularly. Depression kills.

    Thank you for focusing on this subject and your willingness to share the very sad story of your patient’s suicide. Unfortunately not all suicides are preventable but certainly treating depression prevents some suicides and improved the quality of life in patient’s who are successfully treated.

  • Warning: alternative view

    “progressive MS at the time was a one-way street and MS had cost him all of the things he cherished; i.e. his ability to play sport and work, his girlfriend, his friends and more recently his ability to live independently”

    Your patient, in my view (I acknowledge that others will have a totally different view), did the right thing for himself. He’d lost everything, including a future. Filling him full of happy pills wouldn’t have changed the situation – no career, no family, no retirement, an horrendous end in a care home! Would you want that? It’s not a doctor’s role to keep people alive in such a situation – existing is not the same as living.

    “progressive MS at the time was a one-way street”. I’d argue it still is. Despite the claims that treatments are now available for PPMS and SPMS, they only “slow” the rate of progression. Perhaps all they are doing is prolonging the suffering?

    Your recent brush with EDSS 6.5 gave you a taste (thankfully short lived, and I pray you’ll have a full recovery) of life as a progressive MSer. Can you imagine if your doctors had told you that you’d see no recovery and would gradually worsen and loose more function?

    A box full of pills to treat a progressive MSer’s spasticity issues, incontinence issues, sexual dysfunction issues, swallowing problems, anxiety, depression, bed sores, memory issues…. don’t solve the real problem. Your patient’s future (and many others) might have been different if you could have said “we now have therapies to STOP progression in its tracks (please don’t say we have) so you won’t get any worse”. The unrelenting worsening / the knowledge that you will climb your way up the EDSS is the real killer and the main factor behind MS suicides. Until the real MS is addressed and neuros can tell their patients that their disability won’t get any worse, we will sadly continue to see young lives lost (to suicide and to complications of MS). Let’s start designing trials of therapies to address the real MS where the expected outcomes include “reduction in the need for a wheelchair”, “reduction in suicides”, “reduction in breakdown of relationships”, “reduction in loss of employment” – these are real outcomes which MSers want from treatment. Achieve this and the depression problem would fall away.

    When Covid 19 has gone, I’d also want to see Prof Jonathan Van-Tam head up a task force to tackle the real MS. He’s been a complete star during his Covid 19 TV appearances and has a combo of competence / humility to drive some real breakthroughs.

    • Bravo for this comment! I’m bedridden from advanced MS. I find severe fatigue, paraplegia, vertigo, spasticity, bladder and bowel incontinence, to name just a few, depressing. I am a natural caretaker and have always gotten the most satisfaction by caring for others. Now. I am a complete burden on my family. Until my disability score rose above a 6.5, I was not depressed.

    • Very well said sid
      We are tired of being sold hope my edss is eight after 10 years and two failed therapies Yes extending suffering all day watching through the window life pass we need to stop ms

  • We have to also be aware that the depression may not have a biological cause. It could be triggered by society, and the way society is structured, think gambling and debt, the depression that can be triggered by it.

    Having MS can reduce a person’s interactions in society, leading to loneliness and isolation. The interactions being work, socialising, being with a partner, participating in going to the gym, enjoying nature and wildlife or even just a trip to the shopping mall.

    So what can be done? In the context of gambling, the government capped online bets. In the context of MS yes the idea of social prescribing but it needs to go further. How can society be structured in a better way to help pwMS?

  • Having suffered depression from childhood onwards it wasn’t until as an adult I suffered a series of bereavements which culminated in a descent into debilitating illness,hospitalisation and a diagnosis of MS that I finally got help for it. I capitulated and started taking a smallish daily dose of anti depressant. My mood is better than it has ever been despite all the other difficulties and sadnesses. Sometimes I wonder if the depression was an early symptom of MS – I did have episodes of blurred eyesight and other MS-like symptoms as a child. But I do know that untreated it would definitely be dangerously bad by now. So, in my case I think depression is largely biological but who knows if it is part of the biological process of MS … But I also think it was made worse by the effects of MS and diagnosis. Being asked about mood and getting treatment for it was definitely hugely important for me and those around me.

  • Dear Gavin,

    We have met, but quite some time ago now. Your post gave me goosebumps, especially when I reached the part when you say “to spread hope”. I my humble opinion, we need more of it in this world. If only more people would recognised the power it has and how it really helps someone to enjoy their life, no matter how long to short it may be.

    I feel strongly that we need to be very careful with the words that we use with the people we talk to and also we need to recognise how powerful can be. For example, a word like ‘permanent’ in the context of damage, leaves no hope. Also, when someone uses the word ‘terminal’ in the context of illness, who are they helping? If we only realised from the very moment we are born that ‘life’, as we all tend to think of it, is terminal. It may take 80 years or more from the day we entered this world (or less in other cases) before we leave it, but it is still terminal.

    I would like to introduce you to one man I met earlier this year and who I would like to connect you with. His name is Chris Freer, and he is a man that received the diagnosis of secondary progressive MS. If you wish to meet someone who is the epitome of hope in the world of MS, then Chris is he. I have the privilege of holding a conversation with him a few months ago. It was in my capacity with the British Society of Lifestyle Medicine, but it is hugely relevant to my work running the Primary care and Community Neurology Society. If you would like to hear what he has to say, you can watch out 30 min conversation from

    I’ve taken up enough of your time. So I’ll just end by saying thank you for your post and hope you recover soon from your unfortunate accident.

    Best wishes

    Neil

  • Thank you so much for discussing this topic. My neurologist asks me about how I’m doing, but doesn’t focus on mood. I find him excellent and very empathetic, though.

    I didn’t know depression was linked to worse MS outcomes. On your patient who committed suicide, I feel so sad that he made that decision alone, in secret and without any support. He must have felt so lonely at the end. However, I do believe he had the right to make that decision, and I think everyone should have the right to decide if their suffering is too much for them. I live in Belgium, where we have the right to decide ourselves how much suffering is too much. This knowledge has helped me enormously in dealing with MS and actually is one of the reasons why I’ve stayed in Belgium. I’m very healthy, reasonably happy and hoping to live to an old age, but it’s so important to me to have some measure of control. I wonder how much that lack of control, combined with valid fears of increased disability, worsen the impact of depression, which may already be present due to disease activity.

  • I am not sure if what I am feeling is depression or not but I do know that I am burnt out through supporting family members who are unable reciprocate.

  • Interesting post, I’ve been asked about depression especially when I was part of a recent drug trial. However, I think that asking about “mood” is more helpful, otherwise people may not mention that they are suffering extreme generalised anxiety, that often overlooked bedfellow of depression. I attended an 8 week mindfulness course last year for “depression and anxiety”. The research work that been done on mindfulness in the treatment of depression was talked about, but anxiety was hardly considered or mentioned. I suspect the same is true for MS.
    Also thanks for confirming something that I’d been thinking for a while, that there may be an organic root to the changes in mood associated with MS. It helps me to stop blaming myself. It’s just another facet of MS damage along with the usual suspects, mobility, bladder/bowel dysfunction etc.etc…….

  • Thanks for this. It’s the post i’ve been hoping to read for years. Despite a diagnosis in 2004, I suspected I’d had MS since 1988 or even the sixties. But when I asked whether the depressions I’ve had could have be linked with MS, I got a categorical refutation from not one but two euros each side of the Channel. This caused me to remain confused ever since. I have been involved in MS research and mental health research for years, as a participant. I am a research champion for NCMH. In my profile for them, I stated that what I want more than anything is a major research project into links between MS and depression. I’ve had 5 depressive episodes, each one worse than the last, over 40 years. I did return to this link question when I returned to my original neurology department and got a more comprehensible answer (as in, a recognition that I might well be prone to it because of my MS;a real relief).

    Now I’ve read this I feel almost vindicated for having thought this way about the two diseases. Is there any way that research on this will take place or is it not of any interest to Pharma?

  • I’m always asked about my mood at annual meetings.
    It took a diagnosis of cancer in 2014, and the ensuing major depression to ask my GP for help. I have been taking Sertraline since and 6 years later I know a) I prefer me (must have been a proper stress bunny before!) b) my family prefer the more chilled and happier me.

    I was very against anti depressants until I really needed them. They are one part of my armoury against MS. Don’t let preconceptions over influence you.

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