The war in Ukraine and the threat of wider military engagement across Europe and the recent surge in COVID-19 cases ramp up stress and its potential impact on MS. My stress levels have gone up several notches. I have developed acute attention deficit disorder as a result of intrusive thoughts about the war and a continual desire to doom scroll. Help!
I was genuinely surprised at the response I had from my newsletter on stress, particularly stress from being involved in a war, as a trigger for MS relapses (Stress as a trigger of relapses, 28-Feb-2022). Your response has made me recognise that stress, in particular chronic stress, is something I as an MS HCP need to document and manage as best I can if we want to improve MS outcomes.
About a year ago to address the issue of chronic stress in MS and its management I posed a series of questions to you. However, because of recent events, I think it is time to readdress these issues.
Questions
Are you lonely? Have you lost a loved one during COVID-19? Have you lost your job or had to reduce your income because of COVID-19? Can you make ends meet at the end of the month? Are you worried about your future? How is your relationship with your partner? Are you depressed? Anxious? Are you sleeping well? Are you drinking too much alcohol? Are you feeling guilty? Self-loathing? Failed ambitions? …..
These questions rarely come up in a standard MS-related consultation because most conventionally trained healthcare professionals (HCPs) working in a secondary or tertiary care environment haven’t been trained to deal with what we refer to as the ‘Social Determinants of Health’ (SDoH). However, it is clear the SDoH have an outsized impact on health outcomes, which is likely to include MS outcomes. This is one of the reasons we launched our #ThinkSocial campaign several years ago and have started several research activities to see if there is anything we can do to help tackle the SDoH.
Recently one of my patients chastised me for telling her off for her poor diet, which consisted mainly of bread. She lives alone, which may explain why she eats so poorly. She has marmite or jam on toast for breakfast, a sandwich for lunch and if she feels hungry another piece of toast for dinner (see below).
I can clearly see the cynics saying ‘focus on what you are trained to do and leave the SDoH to general practice, social care and the charitable sector’.
Yes and no. Yes, it is easy to say this is not my responsibility, but when you are trying to do your best medically to improve MS outcomes only to get trumped by the SDoH it makes it look like your service is failing. Our patient population in the east end of London is one of the most deprived populations in England. When we recently analysed deprivation data from NHS HES (hospital episode statistics) the only area worse off than us in England was Liverpool. On the other end of the scale were Cambridge and Oxford. So if we compared outcomes of the MS patient populations in Liverpool and East London and note they are doing worse than pwMS living in Oxford and Cambridge it may not have anything to do with our MS and related services, but simply represent levels of deprivation and its associated poorer outcomes.
How SDoH result in poor outcomes is likely to be due to the effects of chronic stress on the brain. Stress is a well-defined biological or physiological response of the body. Stress results in high levels of so-called stress hormones. These stress hormones have a direct and negative effect on the brain and other organ systems, which causes them to age prematurely and malfunction. Ask anyone who is stressed and they will tell they don’t feel well. Stressed people and stressed populations are more forgetful, more tired, have poorer sleep and tend to engage in unhealthy behaviours (smoking, alcohol, poor diet, sedentary) and have much higher mental health problems (depression, anxiety, addiction, suicide). In general, pwMS are more stressed and the reasons for this are not always obvious, in particular SDoD, but as they are potentially modifiable we shouldn’t ignore them.
The main stress hormone is cortisol. Cortisol works via glucocorticoid receptors, which are found all over the body including important brain regions involved in memory and emotions (hippocampus, amygdala and frontal cortex). Chronic stress is associated with reduced volume and malfunction of these areas. In pwMS, these areas may already be damaged from MS lesions, which increases the MS brain’s vulnerability to chronic stress. So if you want to improve MS outcomes you can’t ignore the SDoH and chronic stress. Do you agree?
This is why I have been promoting the marginal gains philosophy to the management of MS, which is based on Sir David Brailsford's approach to competitive cycling and is one of the reasons why the British cycling teams has been so dominant in the last two decades.
“The whole principle came from the idea that if you broke down everything you could think of that goes into riding a bike, and then improved it by 1%, you will get a significant increase when you put them all together.” ……. Sir David Brailsford
The other reason the British cycling team has done so well is money. British Cycling and other British sports have a very large uplift in funding. The message here is that if we need to improve MS outcomes by tackling SDoH we need increased government funding of both social care and healthcare.
So when the UK MS Community stated that ‘no patient should be left behind’ at the first MS Academy ‘Raising-the-Bar’ meeting we made a pledge to tackle SDoH. The Raising-the-Bar meeting was set up to address variation and inequalities in access to MS healthcare in the UK as part of the planned programme of work we included a workstream to tackle the SDoH. That was before the COVID-19 pandemic and as with most grand projects COVID-19 has delayed it.
Marmite on toast
So getting back to my patient who eats Marmite on toast for dinner.
Interestingly, my mother used to refer to her elderly stepmother as a tea-and-toast lady and I never knew why until I became a doctor. My step-grandmother, who we used to call Aunty Betty, didn’t do marmite but stuck to marmalade. She prefered lime to orange marmalade suggesting she had at least preserved her senses of taste and smell. She lived into her late 80’s and died of frailty. For those of you who don’t know the tea-and-toast syndrome is well described. The following excerpt is from Wikipedia:
“Tea and toast syndrome is a form of malnutrition commonly experienced by elderly people who are unable to prepare meals and tend to themselves. Their diets often dwindle to tea and toast resulting in a deficiency of vitamins and other nutrients. The syndrome often manifests itself as hyponatremia, a low concentration of the electrolyte sodium in the bloodstream, due to the lack of salt in the diet.
The syndrome often occurs once children have moved away, and a partner has died or is dying. An elderly person with nobody left to cook for, or without the skills to cook, will revert to a diet of simple foods such as bread, cheese and crackers, and canned foods. According to the New York Times, as many as 60% of seniors living at home are either malnourished or at risk of becoming malnourished. In addition to the problems lack of nutrients will cause, this state also means that the complications of other illnesses, even the common cold, can be much more severe.
Factors that lead to the syndrome include social isolation, psychological issues such as depression, illness, and physical limitations. Though less of a factor than psychological issues, the increased number of medications often taken by elderly people can also affect eating habits. These medications may suppress appetite, make food taste different, or affect how nutrients are absorbed, making it even less likely seniors will get the required nutrients. Typical laboratory findings for tea and toast syndrome include a low serum osmolality (hypotonicity) with a normal urine osmolality since antidiuretic hormone levels are normal.”
Maybe I should update the Wikipedia entry to include multiple sclerosis and other socially-isolating chronic conditions as a cause of this syndrome? Interestingly, my patient was not underweight, which implies she was getting enough calories. She wants to eat other food, but simply can’t afford more nutritious meals, nor does she have the physical energy to cook because of her MS. Her story is not unique. Three years ago when we did a dietary audit of a group of our Barts-MS patients I was horrified at how poor their diets were in general. Most of our patients eat large quantities of cheap processed foods. The main reason is cost and convenience. I suspect with increasing austerity over the last few years things could have only gotten worse and may get even worse as food prices rise, as predicted.
Tackling Social Determinants of Health
How we tackle SDoH is very difficult as it needs political support and to be part of the so-called ‘levelling-up agenda’ of the current British Government. In parallel to this, I am involved in an international scoping review to see what has already been done in MS regarding SDoH and what works and what doesn’t work. Why reinvent the wheel?
It is clear that communities and organisations outside of healthcare often rise to the challenge and tackle SDoH. War is one SDoH we didn’t think we needed to address, but we have to. So if you have any suggestions, or examples of what can be done to tackle chronic stress and SDoH please let me know.
Another issue at a humanitarian level is what can we do to help pwMS trapped in Ukraine or as refugees? This needs action and action right now.
Subscriptions and donations
I am using the paid subscriptions to administer the MS-Selfie Newsletter and associated MS-Selfie microsite that is currently in development. If you are an active paying subscriber thank you, your contribution is much appreciated. At the request of several readers, I have now added the option of making a one-off donation as well. Funds from subscriptions and donations are being used to pay a professional medical writer to curate, rewrite and transfer the contents of the Newsletter onto a companion MS-Selfie microsite, which is being designed and maintained by a freelance web designer.
Thank you.
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as general advice and should not be interpreted as being personal clinical advice. If you have problems please tell your own healthcare professional who will be able to help you.
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