Lukewarm – lifestyle & wellness

Barts-MS rose-tinted-odometer: ★★

How brain-healthy is your lifestyle?

Someone asked yesterday why did I give George Jelinek’s book ‘Overcoming MS’ a positive review and yet we don’t promote it openly on the blog? Very simple our policy is not to advertise commercial products on this blog and if we promoted OMS then what about the other MS-related lifestyle and wellness programmes? I am still pissed off with myself for not making it clear that I don’t support the OMS diet. Yes, I support the principles of OMS in terms of lifestyle interventions, but I simply can’t support the OMS diet. The diet is simply not evidence-based. In fact, there is no ‘MS diet’ that is evidence-based so anyone who claims their diet needs to be followed to treat MS can’t be doing this from any position of authority. 

So why did I give OMS a positive review?

The principles that underpin OMS are scientifically sound, but a lot of them are not evidence-based, i.e. they are not supported by randomised controlled trials. Some of the lifestyle recommendations in OMS are also quite extreme and hence are very difficult to follow. I view George Jelinek as the lifestyle-wellness equivalent of the ‘ultra-distance marathon runner’. You don’t need to run ultra-distance marathons to derive the benefits from running, some people do just fine on subscribing to and running regular 5km park runs. It is horses for courses. I think the important messages in OMS and other lifestyle-wellness programmes are:

  1. Lifestyle-wellness interventions are not alternative medicine, but complementary; i.e. you need to do them in addition to taking for example DMTs.
  2. Lifestyle-wellness interventions need to be personalised. In particular, they need to be affordable, compatible with your culture, your worldview and your belief systems.
  3. Lifestyle-wellness interventions fall on a continuum they are not all or nothing phenomenon. You can engage with some aspects of a programme and not others. In other words, doing something is better than doing nothing.
  4. You need to be self-motivated to stick to a healthy lifestyle and wellness programme. I think herein lies the secret of the success of the programmes. Setting goals and sticking to them is self-rewarding. The rewards centres in the brain make you feel good about yourself and motivate you further. The downside is that when you slip you have a sense of self-loathing and guilt. These emotions are part of the package; they are the regulatory or negative emotional feedback loop. My personal opinion is that slipping occasionally is fine, but you need to earn the off-days.
  5. Lifestyle wellness programmes take a holistic view of the management of the disease. Saying this is easy, but it is very difficult to set up a lifestyle-wellness service in the NHS. What is the evidence and how do we show that the programme will be cost-saving to justify the investment? In addition, adherence rates to lifestyle-wellness interventions are very poor. This is a conundrum that challenges HCPs and behavioural psychologists but is not an insurmountable obstacle. There are examples that when politicians, HCPs and the general public get behind a national lifestyle and wellness programme it can work. A good example of this is what Finland has done at a population level over the last 20 years. 
  6. Lifestyle-wellness interventions should be adopted by everyone regardless of whether, or not, you have MS. This is why we set up the Barts-MS Brain Health challenge and why I started the Think Brain Health initiative. Getting HCPs to personally engage with their own Brain Health would make them think about their patients’ health. In addition, patients are more likely to take the advice seriously from a Brain Healthy HCP than from an HCP who is unhealthy. If you smoke, are unfit, overweight and eat badly how can you tell your patients to stop smoking, to start exercising, change their diet and lose weight? Unless you walk the talk you are not credible. 
  7. Most lifestyle-wellness interventions are common sense with an evidence base from outside the field of MS. However, like any other field, the lifestyle-wellness space is full of quacks and charlatans so be careful to accept anything at face value. Do your research and ask questions. For example, what is the evidence that you need to follow a gluten-free diet? Plant-based diet? Etc? Unless you have documented gluten sensitivity there is no evidence. Similarly, the war on fats, and saturated fats, is built on a very poor evidence base. It is clear that fats, and saturated fats, are not bad for you if eaten in moderation. I am sure more evidence will emerge around this issue in the next few years. It is clear that at present processed and ultra-processed foods are in the dog house and justifiably so. I am adamant that what you eat needs to be compatible with your culture which is why I wrote a piece on Medium about Diet as a Philosophy.
  8. Please let common sense rule the day and if you find you like, and enjoy, walking or running 1 km or 5 km, who knows you may gradually extend your walks and runs to 10 km, half-marathons, marathons and possibly ultra-marathons. The intensity and distance are not that important it is getting started and staying committed that is important.

So I yes I have gone lukewarm on OMS because it is not the be-all and end-all of MS management. I have also heard from many independent sources that George Jelinek promotes it openly as an alternative option for the management of MS. I have seen many tragic examples of patients under my care who are now very disabled as a result of using lifestyle and wellness programmes as an alternative option to DMTs to manage their MS. OMS should only ever be used as a complementary MS management tool. 

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Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the position of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.

Swiss-cheese

Barts-MS rose-tinted-odometer: zero-stars

What do you say when I colleague chastises you for stating the fact that MS is potentially a ‘preventable dementia’? This particular colleague was clear that there is no need to draw any parallels between MS and other neurodegenerative diseases because of the negative connations that the term dementia has. I had to remind him that MS ticks all the boxes for being classified as a dementia; i.e. (1) MS is an acquired and not a congenital disorder; (2) MS is a chronic progressive disease; (3) MS impacts on multiple cognitive domains and (4) MS impacts on social and occupational functioning. Have I missed something?

I also had to remind this colleague that almost every neurology or psychiatry textbook included MS on its list of causes of dementia. I am not prepared to peddle alternative facts because pwMS may find it distressing to find out that if MS is left to its own devices it will shred their brains and cause dementia. Please note the rose-tinted-odometer is set to zero for this post. 

The small study below reiterates what we already know that both relapsing and progressive patients have cognitive problems that correlate with physical disability. This study also confirms that T1 hypodensities or blackholes on MRI, particular in the thalamus (a deep grey matter structure in the brain) predicts cognition problems. T1 hypodense MS lesions or black holes, or at least a proportion of them, have been shown to be very destructive and include lesions with so-called phase-rims (iron around them) and a subset we call SELs (slowly expanding lesions). Some neuroradiologists often describe an MS brain with a high volume of black holes as being similar to Swiss cheese in reference to Emmental cheese. 

Now for the good news is that these studies below are on patients with significant end-organ damage and if we can diagnose and treat MS effectively early on we can prevent or at least delay the end-organ damage and the progressive loss of cognition. This is why we have spent years promoting the concepts of ‘Time-is-Brain’, ‘Treat-2-Target of NEDA’, ‘Rapid escalation’, ‘Flipping-the-Pyramid’, ‘Brain Health’, ‘Beyond-NEDA preventing end-organ damage’, ‘Holistic Management’, ‘Marginal Gains’, etc. Buried in all of these concepts is the use of effective DMTs to prevent end-organ damage and to prevent dementia. 

I am very pleased that my pwMS in Australia have taken this one step further and launched their own awareness campaign, albeit sponsored by Biogen, to raise awareness about early effective treatment (www.msmotion.com.au). The campaign is been run by a group of MS social media influencers. I met them all virtually last year and spoke to them about the concepts that underpin our  ‘Brain Health: Time Matters’ policy document. It would be great if pwMS across the world could do a similar thing. 

Do you agree with my colleague above that we should try and protect pwMS from the harsh realities of MS and what can happen to their brains if we don’t manage their MS appropriately? Or should we peddle false facts and a rose-tinted view of the world?

de Paula Gois et al. Associations between cognitive and clinical disability across MS subtypes: The role of the underlying brain damage. Mult Scler Relat Disord. 2020 Dec 19;48:102701. 

Background: Cognitive impairment (CI) is present in all stages and subtypes of multiple sclerosis (MS). However, the majority of studies examined relapsing-remitting (RRMS) patients, and did not address cognitive phenotyping. Is still not clear whether patients with progressive MS (PMS) have a distinct pattern of CI compared to RRMS. In addition, there is conflicting data regarding the correlation between clinical and cognitive disability.

Objective: To investigate the differences of CI between PMS and RRMS patients, evaluating cognitive phenotypes. We also aimed to analyze the association between physical and cognitive disability with MRI measures of grey-matter atrophy and lesion burden.

Methods: Thirty patients with PMS and twenty-four with RRMS underwent neurological, neuropsychological (BRB-N, Boston Naming, and Tower of London), and MRI assessments (3T). Brain volume evaluations were performed using FreeSurfer. Principal Components Analysis on neuropsychological yielded six principal cognitive domains. Cognitive deficits were classified according to three categories: no CI, impairment in isolated cognitive domain, or impairment in combined domains.

Results: In the overall sample, the most frequently impaired cognitive domains were information processing speed (IPS) and visual memory. PMS patients had a higher prevalence of verbal memory and verbal fluency deficits, and more frequent impairment in combined cognitive domains compared to RRMS individuals. After multivariable regression analysis with clinical variables, EDSS was associated with most cognitive domains. Nevertheless, after including T1-lesion volume in the model, it was the most consistent predictor of cognitive performance. To further analyze the interaction between EDSS and T1-lesions, we performed GLM analysis with EDSS and T1-hypointense lesion volume as covariates, and T1-lesion volume adjusted better the model for verbal memory (p = 0.013), IPS (p = 0.021) and total number of impaired cognitive domains (p = 0.021).

Conclusions: RRMS and PMS patients tend to have a similar neuropsychological profile in general, but the extent of CI was greater in PMS patients. Worse cognitive performance was associated with increased physical disability, but this correlation was no longer significant after controlling for T1-lesion volume, suggesting that the underlying MS pathology might be involved in this relationship. Thalamic and T1-lesion volumes were the most consistent MRI predictors associated with cognitive disability.

CoI: multiple

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