Week 1: Resilience with Rachael Hunter
I now live alone. How can I boost Oxytocin levels especially in lockdown with no human touch? From Katie
Living alone doesn’t mean you need to miss out. There are lots of ways you can generate the same positive effect and boost oxytocin! Exercise can have the same effect, as can engaging in creative activities - sewing, art, playing an instrument and even creative writing and journaling have all been shown to have the same effect. Do what works for you and something you enjoy and can get really lost in! You can also get the same physiological response from pets too – even looking a pictures of animals, or friends and family will give the same oxytocin effect. Organising family photos or collating the family tree may provide that powerful feeling of connection. Practising daily gratitude as well as giving support and encouragement to others also has the same physiological impact and is such a wonderful daily practise. In fact, there is a bigger effect when we do something for others! So put pen to paper, write a letter, join a campaign or reach out to others. All of these things may seem quite simple but they can be very powerful and helpful for our mental health, as well as at a physiological level. I hope that’s help? Do let us know how you get on and share it with the community so others can pick up on your tips!
Could you recommend a good book on the mind-body connection that is grounded in good empirical research? I am interested in deepening my understanding. Thank you. From Sarah
Hi, there are some great books out there and it depends how academic you want to go? I have heard great things about this book: “The Balance Within: The Science Connecting Health and Emotions”
by Esther M. Sternberg but haven’t managed to read it yet! “When the body keeps the score...” by van der Kolk is also good and highly relevant, though is very big! I would highly “Mind over medicine” by Dr Lissa Rankin which is easy to read summary of evidence but very relatable to MS. Just a few ideas but hopefully somewhere to start 1 Please do share with us any good books you come across too!
Take care and best wishes,
Week 2: Eating Well with Sam Josephs
Is Flaxseed oil that's HIGH LIGNAN better than regular? From Erika
Flaxseed oil - rather than the whole flaxseeds are specifically recommended for the high omega 3 content of the oil which is so powerfully anti-inflammatory and anti-degenerative. Lignans are part of the whole seed, and as a kind of fibre work in a different way. There is some evidence they can be useful in cardiovascular disease, oestrogen dominance, and balancing blood sugar. They do not have a direct bearing on MS. However, since lignans are a great source of health bringing benefits, including whole ground flaxseeds alongside the recommended dose of flaxseed oil - eg in muesli, on salads, in baking, maybe a healthful addition to the diet.
How can I follow the OMS diet successfully if I struggle with high FODMAP foods and IBS? A lot of whole plant based foods is good for your guts, but therefore often high in FODMAPs? From Claudia
High FODMAP foods are rich in various kinds of 'sugars' that a sensitive person can ferment and may exacerbate an irritated gut, eg in IBS. Different fruits and vegetables contain differing amounts, so it is important to arm yourself with a list of those 'high FODMAP' foods and avoid them for the first few weeks. There are still plenty of OMS-friendly foods that contain lower levels of FODMAPs that can be included and rotated eg, egg white, fish, nuts and seeds, olives, oats, corn, rice, quinoa, herbs and spices - and of course a number of fresh fruit and vegetables. Once you have avoided the high FODMAP foods and got your symptoms under control, it is a good idea to slowly re-introduce the foods - one by one - with a 3 day gap between new foods, to determine those that are really problematic. In this way, you can slowly increase variety, and have a clear guide on which are the most offending foods to avoid.
How much nutritional value is gained from eating cooked vegetables or is it always better to eat raw foods? From Claudia
Ideally, we should eat a combination of cooked and raw vegetables. It is true that raw vegetables are particularly abundant in nutrients that may be lost or destroyed in the cooking process, eg boiling broccoli leaches out the vitamin C. This is why cooking methods are important. By steaming rather than boiling you can preserve many more of the nutrients. Raw vegetables also contain more enzymes to aid our digestion that cooked vegetables, but for some of us they may be more difficult to break down and digest in the first place. Interestingly, cooking vegetables can also increase the nutrient availability, eg cooked tomatoes, with a drizzle of olive oil, actually have more bioavailable antioxidant (lycopene - the red pigment) that is available in a raw tomato. It is a good idea to consume a mix of raw and cooked vegetables every day.
I've recently heard that drinking 16oz celery juice per day is good to repair a leaky gut and in turn helps control MS - I'd be interested to hear your view on this? From Julie
Celery juice does have an abundance of healthful properties, from the nutrients it contains, to the alkalising effect it produces and it's antioxidant and anti-inflammatory properties; of course these effects are present in the whole celery juice, but the juicing process allows us to consume more than we might in a serving of whole celery. There are some claims, mostly by the author Anthony William, that it can directly heal a 'leaky' gut, but there is no scientific evidence available to substantiate this yet. It is possible that the anti-inflammatory properties are helpful however. A 'leaky' gut means there is increase permeability of the gut wall, allowing undigested proteins from food to cross into the blood stream and possibly trigger an immune response. It has been shown in the medical literature, that increased food allergies may exacerbate MS symptoms, and by healing this permeability you can address this avenue of irritation. It does require more that celery juice however. I would recommend speaking to a BANT registered nutritional therapist if you suspect you have a 'leaky' gut, and they can recommend a program to address this.
I saw George explain that eating fish x3 times a week or more showed a reduction in relapse rate by 50%, regardless of flax oil supplementation. I’d rather not eat fish for ethical reasons, but don’t want to put my health at risk. What stance does OMS take on this now? From Rowan
I think you may be referring to the HOLISM study which demonstrated that those OMSers including oily fish in the diet 3x / week showed further improvement in terms of reduction in relapse rate. However, the reduction in relapse rate for those supplementing for 20-40mls with flaxseed oil was still as much as up to 60% reduced compared to those not using flaxseed oil, so if you choose not to include fish, you will still have a significant protection through getting your omega-3 oils from flax.
At the moment myself and people I know are comfort eating how do you tackle this? From Liz
'Comfort' eating is usually reaching for sweetened or starchy carbohydate-based foods, as it is these foods that can promote a release of dopamine - one of our neurotransmitters in the brain that make us feel good. By including good quality protein (egg white, fish, nuts, seeds, beans, tofu, lentils etc) with each meal AND snack, you will find you are fuller for longer and more satisfied. Perhaps try to stick to 3 meals a day, and cut out the idea of snacking altogether? Be very mindful of only buying those foods that won't tempt you into comfort eating. Consider having a large glass of water when you get the urge to comfort eat and wait 10mins. This can sometimes curb appetite and satisfy you. It pays to add some mindfulness into your relationship with food at the moment -examine your actual motivation for seeking a snack - are you genuinely hungry? (maybe you are thirsty instead, maybe just bored?). Consider alternative activties - can you do a little burst of exercise that could flood your body with some feel-good endorphins instead?
What kind of ratio do you advise for PwMS following the OMS diet? In my experience I'm quite high in carbs (50-55%) and fat (35-40%), and very low in proteins? From Rianne
Your fat percentage intake is a little higher than the average recommended by the NHS, and a diet low in proteins may deprive you of valuable amino acids for many processes vital throughout the body and brain. With a diet veering so high in fats, I would consider what proportion of the those fats may actually be saturated? Fats as they appear naturally in our foods are never specifically one or another fat, but are in fact a combination. There is saturated fat in both olive oil and in flaxseed oil (albeit in much smaller quantities). Sticking to a suggested ratio like the NHS recommends: around 45-65% carbs (which you currently do) but cutting back a little on fats to increase protein will ensure you get sufficient amounts of essential amino acids.
Can we get enough omega 3s from whole foods? I read a lot about oil being a highly processed and inflammatory food? From Vickie
No, we cannot get enough omega 3 from whole foods to maximise the anti-inflammatory effects recommended on the OMS program. Omega 3 is not available in many foods - primary sources include oily fish; some seeds - especially flaxseeds, some nuts - especially walnuts, and small amounts in leafy green vegetables. It is for this reason a 20-40ml cold-pressed flaxseed oil is recommended. When an oil is 'cold pressed' it means there has been minimal processing, and no heat used, and the oil remains potent in its beneficial properties. For olive oil, the term 'extra virgin' similarly means minimal processing. You are right to point out many oils eg sunflower oil for frying & vegetable oils etc have been highly processed and can have a very pro-inflammatory effect on the body. OMS recognises this in their advice to avoid these oils, and foods that contain them as much as possible; and in the Kitchen use cold pressed flaxseed oil as a 'supplement' and never to heat it; and only to cook with extra virgin olive oil, never on the hob, and only in the oven at 180C or below to protect the oil from damage and subsequent inflammatory effect on the body.
I’m not having my period in 1,5 years due to hypothalamic amenorrhea. Due to the fact that flaxseeds and soy have a lot of phytoestrogens I wonder if I could harm myself by blocking ovulation bc of the high phy-es intake. Do you have any info on that? From Maria
Both whole flaxseeds and soy contain substances (lignans and isoflavones respectively) that are classed as phyto-estrogens - best understood as a 'plant oestrogen'. These phytoestrogens have a similar structure to our own oestrogen however, when picked up by the body's receptors have a much weaker oestrogenic effect. There is a lot of speculation around whether this explains the high consumption of soy foods in the Japanese diet and the reduced numbers of oestrogen-dominant cancers. It is thought the phytoestrogens bind to women's receptors instead of our own oestrogen molecules, thus exerting dampened oestrogenic effect. It is thought that this mild oestrogenic effect from phytoestrogens may benefit menopausal women who suffer many symptoms as their natural oestrogen production reduces, and why soy foods and whole flax seed is often recommended for this group of people. Hypothalamic amenorrhea specifically will not be affected by phytoestrogens which are too weak to promote overall oestrogen levels. It is also worth noting, there is minimal amounts of phytoestrogens in flaxseed oil as the lignans are contained in the fibre of the whole flax seed.
a) I (a 61 year old female) have been following the OMS lifestyle closely for the past 9 years. I have been found to have low bone density. Have you got any advice? From Paula
It is likely that you are eating plenty of the right foods – plant-based sources of calcium such as beans, nuts, broccoli, tofu, sesame & tahini paste, small bones in fish like sardines and tinned salmon etc. Be mindful to also watch out for those factors that can cause an increase in calcium excretion: avoid excess salt and salty foods, avoid sparkling / carbonated drinks which can acidify the blood and cause calcium to leached from the bones. Too much protein has also been shown by some studies to do this.
b) Is it possible that there isn't a 'one size fits all' diet?
Yes this is possible, but the OMS dietary suggestions are very much in line with an anti-inflammatory diet; a diet that supports the microbiome (friendly bacteria in the gut) which is also linked to better overall health; a heart-healthy diet (pwMS have more risk of cardiovascular disease); is similar to a Mediterranean diet, shown beneficial for other autoimmune conditions e.g. Rheumatoid Arthritis etc. You are free to choose the approach that is right and works for you but you can be reassured that the OMS approach is healthy and immune supporting approach that can be followed by the population as a whole.
Should I supplement with collagen? From Angie
OMS does not really recommend the use of supplements (bar Vitamin D, and vitamin B12 if vegan) promoting instead a healthy diet that should provide all the vital nutrients.
Collagen is protein used in the production of bones, skin, joints, cartilage etc. Taking supplements has been shown to have beneficial effects on these tissues, such as plumping skin to reduce fine lines, and prompting cartilage production to reduce aches in joints due to wear and tear. There are no studies looking at the use of collagen supplements for multiple sclerosis and any mechanism by which collagen could help MS symptoms has not been suggested. Collagen is available for OMSers in form of fish collagen, but a diet rich in a variety of plant and fish protein, full of nuts, beans, seafood and plenty of fruit and vegetables as suggested by OMS will provide all the natural raw ingredients to aid the body's own production of collagen.
I have a question regarding gluten. I have heard Prof. Jelinek say there is no scientific proof that gluten affects MS. I will like to disagree with this because of my experience. I used to experience some terrible back pain. My back would spasm uncontrollably causing me a lot of discomfort. Lying down, sitting, standing and walking were carried out with immense pain. I read that gluten affects MS and I decided to give it a trial. I woke up two days later without any pain. I couldn't believe it so I ate bread. The next day after that meal, I was unable to get up from the bed. When I eventually did, I was bent over, needed assistance and spent the whole day in bed ill. Since then, I have eliminated gluten from my diet and have no more spasms in my back. Could it be a fluke? Is it all in my head? What gives scientific research credence on a subject matter? Is there any research being carried out to prove gluten's effect on MS? From Sola
As it stands, there is very little scientific literature published on the specific effects of gluten in the diet and MS. For this reason, at the moment the OMS program does not recommend excluding gluten. Having said that, we do know that food intolerances can aggravate MS symptoms and this has been demonstrated in the medical literature. For this reason, it is great that you have identified that gluten is an issue for you and you are able to remove it from your diet and enjoy a better quality of life with reduced symptoms. A feature of autoimmune conditions is that they can also promote hyper-permeability in the gut ('leaky' gut) and gluten is a real player in this process by irritating the gut lining, and crossing into the blood stream to fire an immune response (with the associated increase in symptoms). It may be that you or others who 'react' to gluten may in fact have hyper-permeability in the gut and by addressing this issue can restore a healthy gut lining and re-introduce gluten. If you want to look at this issue further, you may want to look for a nutritional therapist who can help in guiding you
I am interested in using Avocado oil for baking, as my wife has an intolerance for EVOO and is not able to use this. I understand that unrefined, cold pressed, Avocado oil has virtually the same nutritional values as EVOO. Its smoke / heat point is actually higher than EVOO. Is the recommendation that Avocado oil should only be consumed cold, moderately, because of the risk of purchasing oil which has been refined? From Richard
Yes absolutely. I would recommend that if your wife has an intolerance for extra virgin olive oil then avocado oil is the next best thing and a good alternative. You may also consider using flax oil for salad dressings, or small amounts of walnut oil as a salad dressing - neither oil should be heated.
Is it really safe to substitute flaxseed oil with 40-60g ground flaxseed because of the amount of probably harmful hydrocyanic acid? Official health recommendation recommend not to eat more than 15g per portion / 30g a day. From Maria
There is no suggestion in published literature that ground flaxseed will have a toxic effect on the human body. You are correct in identifying that flaxseeds contain cyanide compounds, but other foods such as apples also do. The way these compounds are metabolised by the body renders them harmless, and latest research suggests we would have to consume a kilo to register a toxic effect (Parikh M et al, Dietary Flaxseed as a Strategy for Improving Human Health. Nutrients, 2019. 11(5):1171). The OMS program recommends consuming the flaxseed oil where possible, and which is also free from hydrocyanic acid.
To satisfy sweet cravings, I often snack on dried fruit. However, unless organically sourced, the ingredients listed on the packaging, invariably state that the fruits are coated in sunflower or rapeseed oil. Is it okay to eat dried fruit if they contain these oils along with glucose/sulphates? I have found it increasingly difficult to obtain organic dried fruit, especially since lockdown. I am in need of a sugar fix, but obviously do not want to compromise the OMS diet, if non organic fruits are harmful. From Vernon
There are many brands of dried fruit that do not contain oils eg Sainsbury's (UK) own brands so it really is worth looking around and choosing products without additional oil. The sulphates should not be an issue unless you are sensitive to sulphur dioxide and it triggers a reaction (the preservative that keeps the vibrant colour as in the case of apricots, or red wine which can cause a stuffy nose for example).
You are right to assume that the organic versions which do not contain these additional additives are the ideal choice, but budget and availability mean that we cannot always choose organic. The non-organic versions still contain all the beneficial nutrients, same as the non-organic fruits, and without specific sensitivity to the preservatives you can continue to enjoy the non-organic versions.
Likewise, olives, which are also recommended on the diet, are often preserved in oil. Should these also be avoided.
Olives that are sold in long-life jars tend to be stored in brine (salted water) and so do not contain added oils. The fresh olives from the deli counter may come in a dressing made from olive oil, or from sunflower oil. The small amount of sunflower oil dressing that will coat the olive is a fairly negligible amount and so these olives are also fine to consume. The sunflower oil used has not been heated, and is still low in saturated fat. Too much sunflower oil high in omega-6 can be an issue for inflammation when omega-3 levels are low, so in this case, with such low levels, these olives in sunflower oil are fine to enjoy.
Due to OMS diet I developed an iron deficiency anaemia and I know it's hard to absorb the iron that is delivered throughout plants. What's your advice to increase the levels preferably without supplements?
Week 3: Mindfulness and meditation with Phil Startin
Does it matter whether you are sitting, standing or lying? I often find it too tiring to stand or sit upright for that length of time... From Lynne
Very simply, no. What’s important is to find a position that is comfortable enough so you can be with your practice without the constant feelings of pain or discomfort distracting you, but not so comfortable that you fall asleep J! Try to find a position that does feel quite dignified, quite stable and solid, so that your body position reinforces your intention for the practice. So for a typical sitting practice this might be sitting on a near straight back chair, resting your back against the back of the chair so you have some support for your back. Some practices, e.g. the body scan, are often practiced lying down on a rug or thick carpet, and you can do all other practices like this too. So just choosing what is best for you.
If as you practice you need to adjust your position then this is fine – there is no need to sit completely motionless for 30 minutes or however long you practice, just for the sake of it. If you do need to move during your practice then perhaps do so mindfully, being aware of the sensations and mind states that are arsing with the discomfort, and then mindfully deciding to move (or not), and then moving mindfully, aware of the sensations of moving, before settling back to the practice.
Standing meditations can be another very interesting way to practice, even if you have difficulty standing. So even if you can physically only stand for 60 seconds or so, perhaps try this before moving mindfully to a seated position as part of the practice itself.
Is the diagram of awareness based on a theory? Just interested in learning more about that process described in the diagram. From Rachel
I developed the model based on my own meditation experiences as a practitioner and teacher, and particularly based on insights and teachings I received on a mediation retreat earlier this year led by Vajradevi here in Scotland. I’ve had meditation friends provide comments on the model, and a very helpful discussion with my teaching supervisor who is part of Bangor University’s mindfulness faculty. Vajradevi is publishing a book next year called “Uncontrived mindfulness” that I’m very much looking forward to reading. And please do contact me if you would like to discuss the diagram in more detail, and watch this space as I’m developing the model further.
What are your view on Transcendental Meditation?
I am not a practitioner of transcendental meditation myself but my understanding is that it is a form of concentration meditation, with the concentration being on a mantra. Mindfulness meditation also can be described as having an element of concertation meditation, as do many other meditation practices and techniques. OMS do not specify a particular type of meditation to practice, so just whatever fits best for you. There is a comprehensive description of different meditation types by Giovanni Dienstmann here https://liveanddare.com/types-of-meditation/
Week 4: Exercising at (or close to) home with Veronique Gauthier-Simmons
Is it beneficial to supplement with magnesium alongside exercise? From Melanie
There is little evidence related to MS specifically but it is widely used to reduce musculoskeletal pain after exercise.
Personally, I use a magnesium spray to aid in recovery after long runs and/or I use Epsom's Bath Salts, which are just magnesium.
Avocadoes, nuts, seeds, tofu, legumes are all sources of magnesium too.
When it comes to supplements, Dr Jonny White told me that the most bioavailable preparation is Magnesium Citrate, but you'd need more than 400 mg daily, ie quite a large dose, for the muscle relaxation effects.
What is the title of the motivating yoga-song? From Ka
The song that gets me on my yoga mat is Mul mantra by Snatnam Kaur
There's also another one by Devi Premal called Gayatri Mantra that helps me when I practise doing 108 sun salutations.
I run a lot of ultra marathons in heat wave temperatures..... is that bad? From Sarah
The research I mentioned in the webinar looked at the risk of developing Upper Respiratory Tract Infection in athletes and suggests that athletes experience higher rate of URTI after training and competitions, probably due to stress.
When it comes to MS, there is no evidence that intense exercise has negative effects. On the contrary, "health and quality of life benefits continue to accrue as more exercise is added" (Prof Jelinek, Overcoming MS, pp 212-213).
OMS recommendations are to do at least 30 minutes of exercise 3 to 5 times a week as vigorously as your level allows. So if your fitness allows, that's completely fine. Just make sure you stay properly hydrated.
Please could you suggest ideas to improve numbness in feet? From Mariam
First, it's important to check with your health practitioner just to identify the cause - it might not be MS related- and to look at possible treatment.
When it comes to exercise, the priority should be safety. Based on my personal experience -I had this problem for about 6 months before it completely disappeared-, I'd recommend avoiding activities such as running or stepping as the risk of falling increases. I do not know any specific way to improve it except improving your overall health by following the OMS program.
Can the 30 mins exercise be broken up throughout the day? From Rosie
Yes definitely. It's a good option if you can't find 30 minutes in your schedule or if you are too tired to do 30 minutes in one go.
What is the name of the Professor mentioned in Denmark? From Susan
He's Prof Ulrik Dalgas from Aarhus university.
Is there any type of exercise that is better for MS? From Diane
No there isn't. It depends on what your abilities are and also what you enjoy. But it's important to include some strengthening/ resistance training in your routine. It doesn't have to be in the gym with weights - I can also be using your own weight as resistance.
I love to work out, I did kickboxing, weightlifting and speed walking before I was diagnosed in 2008 with PPMS. Since being diagnosed I have kept up working out in some form or another but over the years it has become increasingly more difficult with balance, dizziness and fatigue.
Now when I work out, I am very dizzy and my balance becomes worse! And fatigue, Oh my, I am exhausted and get very little done after a work out. My workouts are far from what I use to do before PPMS and have gone from 1.5/2 hrs. a day to 1 hr. on a good day (most days 30 min). And are usually very low impact, walking on the treadmill or yoga, which is hard for me I have never been a yogi and it is not easy at least for me. What can I do to keep from feeling so worn out after I have worked out? From Debbie
I would suggest trying High Intensity Interval Training (HIIT) where you work really hard for shorter time (30, 60 or 90 seconds) and then rest for twice the time. Plus, making sure you stay cool (drinking cold water, wearing a cooling vest or scarf, exercising in a cool place..). People suffering from fatigue tend to better tolerate HIIT than other forms of exercise because of the pauses in between.
Can Veronique recommend exercises to strengthen the chest and lung function in an MS patient who is very weak? From Erika
For a person who is very weak, I would suggest to focus on breathing exercises like 'Pursed lip breathing' and 'Belly breathing'. They will help to stretch and strengthen the respiratory muscles. Then, if/ when available, any movement will help too. It could be stretching, walking. In the webinar, I also showed a Breath Exerciser. That might be an option too.
If one side of the body is much weaker than the other should leg and arm exercises still be attempted to the same degree on both sides of the body? From Erika
Many people have one side weaker than the other. It's normal. But if one side is much weaker - this is my case too- the key is to focus on one-sided exercises and start with the weak side. If the exercises require weights, you should use the same weights for both sides and choose them based on the abilities of the weakest sides. And you should also do the same number of repetitions on both sides.
P.S. It's a great question because if you don't do anything then you might develop imbalances and pain on one side.
Webinar 5 questions (general) anwered by Dr Jonathan White
I think I've had the virus (based on symptoms I had - includes high temperature, loss of smell, dry cough. Appointment with neurologist shortly after confirmed that it was very likely I'd had the virus). My question is how long do some of the symptoms last and do MS sufferers get new relapses? Recovered from most symptoms however still have persistent fatigue and weakness in my legs. These are 'new' symptoms and have lasted for more than 7 weeks. Is there any way of checking whether this is due to COVID-19 or if it's a relapse? From Krishna
It is well known that any systemic infection has the potential to cause new MS symptoms or worsening of old symptoms. This phenomenon is called a pseudo-relapse, and is not usually considered as a true relapse by many neurologists. It is often said that an episode of new symptoms can last for up to 12 months, and in some even longer. The important thing here is to allow time for rest and recovery – eating well, getting good qwuaslity sleep and rest, meditation and gradually increasing your exercise and activity levels. Depending on where you live, a COVID-19 antibody test may be available, but there remains considerable uncertainty over the accuracy and interpretation of them at present. An MRI would show if new lesions are present, and therefore if a true relapse had occurred. New lesions are not seen on MRI in a pseudo-relapse.
How safe can a vaccine for Covid-19 be for people with MS? Apart from the concerns about the reduced robustness of the testing, is it possible that the introduction of a small amount of the virus could cause an over reaction of an immune system that is perhaps already extra reactive? Especially in view of the inflammatory nature of Covid-19. From Carol
At present we simply don’t know. If indeed a successful vaccine is found (respiratory infections are notoriously difficult to develop vaccines against). Assuming there is a vaccine then it is a question of whether it is “live” or not. If it is a live vaccine (containing small amounts of weakened virus) is to be given, then people taking certain disease modifying drugs (DMDs) could potentially be at risk of developing COVID-19 (e.g. Tysbari, Tecfidera, or in the immune reconstitution period after HSCT, Lemtrada, Novantrone). People on the less potent DMDs (Copaxone, Interferons) and those not taking a DMD would not be considered at additional risk from the vaccine.
To further complicate matters, certain DMDs can “blunt” our response to a vaccine (e.g. Ocrevus, Fingolimod, Lemtrada, HSCT) and perhaps not give us complete protection.
If the vaccine is inactivated or “dead”, then there shouldn’t be a risk of developing COVID-19, but again we may not have the full immune response to give us long-term immunity, dependent on which if any DMD is being taken.
There are many potential permutations to this at present, we will of course keep the OMS community updated when more information is available.
Why does my T-cells attacks my myelin sheath? From Gerson
It is actually slightly controversial whether it is T cells, B cells or both that attack the myelin sheath – treatments are available that target one or the other, and both have beneficial effects in MS.
Whatever part of the immune system is the responsible is largely irrelevant though, what matters is what makes it mistakenly attack its own host – autoimmunity?
The answer to that is that is a combination of genetics and environment. There are 200+ known genes associated with MS, but not one specific “MS gene” that will cause it. If you have a combination of these genes then the “MS Gun is loaded”. This accounts for around 25% of our overall risk of MS. By far the more significant factor though (75 % of risk) is our environment, which “pulls the trigger”. There are many factors involved; most often a combination of:
- Cigarette smoking
- Low vitamin D levels
- Childhood and adolescent obesity
- “Western” diet: high in altered and saturated fats, highly processed foods, lack of wholefoods, fruits and vegetables
- Lack of physical activity
- Exposure to Epstein-Barr virus in young adulthood
I have MS and was diagnosed with early onset osteoporosis (before the age of 50). I understand that the diet generally provides enough calcium and will not cause osteoporosis but I can't seem to find confirmation that the diet and the vitamin D is ok if I actually have osteoporosis. From Ella
Absolutely. There is in fact no evidence that dairy consumption prevents osteoporosis (often proclaimed by the food industry), and actually there is evidence that osteoporosis rates are perhaps slightly higher in those consuming more dairy. A well balanced wholefood, plant-based diet will provide all the calcium you need, and the high dose vitamin D is also beneficial, as its primary role is to absorb calcium from our gut into the bloodstream. Your doctor may want to prescribe vitamin D and calcium tablet, in which case you may need a little extra vitamin D on top (the combined doses tend to be lower in vit. D).
You may wish to look in vitamin K2 as well (https://overcomingms.org/latest/vitamin-k2-new-vitamin-d-ms), the jury is out on whether or not it is beneficial in MS, but it is known to help lay down our calcium stores into bone, and as long as you aren’t taking warfarin or other blood clotting medications, it is safe.
The foot and lower leg of my MS affected side is often red coloured and maybe a little bit swollen. Why? What causes that to happen? From Kay
I don’t think that this is a direct result of MS. Whilst it is well known that MS causes abnormal sensations (e.g. pins and needles, cold, burning, itching, numbness etc.) it would be unusual for it to cause swelling and colour change. It is perhaps more likely that it is an indirect result of the damage – e.g. inactivity or underuse. It is very important that your Doctor checks this out to exclude a blood pressure or heart issue, and control of any other health condition that may contribute e.g. diabetes? Elevating the affected limb when lying or sitting should help to reduce the symptoms.
I have SPMS, how relevant is OMS for me? From Alison
It is extremely relevant. In MS generally, too much of the focus tends to be on early intervention and RRMS, but that should never detract from the very real benefits that many people with PPMS and SPMS have received from following the OMS program. It would be improper and inaccurate to promise that all people with progressive MS can expect a complete reversal of their symptoms with OMS, but no medical treatment should promise that at the present moment either.
The data from Prof. Jelinek’s work show very clear benefits in terms of physical, mental and overall quality of life in the years after starting the OMS program. On average, there is a 20% improvement in measures of physical quality of life, regardless of type of MS, or level of disability after 5 years on the program, with the greatest overall improvement in all measures seen in the first twelve months. The study deliberately included all forms of MS, aiming to be more representative of the MS community as a whole.
Prof. Swank’s original study also gives great reason for hope. It did find that the best long-term outcomes where achieved in those who started his diet early in the disease, but there was a very clear change in the “trajectory” of the disease course in those who started on his protocol at a later stage too.
Looking at the graph below, the black line at the top represents those that started the Swank diet at an early stage. It clearly shows a very stable disease course over time, with almost no disability progression in the 34 years of his study.
The second black line below shows those in the study that did not follow the diet, and their disease course was generally of disability accumulation over time; the common natural history of MS.
The hashed lines are extremely interesting. The “flat” hashed line represents those pwMS who started to follow the Swank diet when they had already developed some level of disability. It clearly demonstrates exactly the same trend as for those that started at an early stage – almost no further disease progression over time.
We know from very many OMSers around the world that not only have they stabilised their disease, but that they are actually seeing noticeable improvements in their abilities and feeling really well.
There is very real hope that the OMS 7-step recovery program can help at any stage of MS, and whilst we cannot promise you a particular outcome, what have you got to lose by trying it?!
Sun exposure has been shown to reduce depression and fatigue in pwMS as well as provide the Vitamin D we need. I believe it has been helping me a lot. Do you know how much less benefit older pwMS get? Is there any data, for example, how much vitamin D production we get at various age markers? From Tom
It is a very good question. Vitamin D deficiency is significantly more common as we age, most likely due to the kidney not converting as much of the compound produced in the skin into the active form of the vitamin. It may also be true that as we age, we are unable to absorb as much of a vitamin D supplement through the gut. I would suggest that it may be worth having your vitamin D levels checked; we are aiming for 150-225nmol/L OR 60-90ng/ml with OMS. If you have been supplementing for some time and your levels are still below this range, then you could increase the dosage and recheck your levels again after 4-6 months to ensure you have the correct dose.
Even though there is plenty of sunshine where I live in Australia, I do avoid exposure due to having had many sun cancers over the years. So I have decided to take a supplement to lift my levels. I currently take a 50,000 iu Vitamin D dose once weekly with Flaxseed oil & that has lifted my level from 48 nmol/L in 2017 to an average of 200 since 2018. My question: Is this once a week dose a safe option compared with a smaller daily dose? From John
Absolutely. In fact that is a recommended method of treating vitamin D deficiency in the U.K.
It is worth remembering that vitamin D is stored in our body fat, so the levels in our blood tend to go up and down quite slowly, unlike the B vitamins, which are not fat soluble and so can change quickly. This property lends itself to taking larger doses, less frequently, and I know OMSers who take their whole week’s worth of vitamin D on “Sun”day, so they don’t forget!
I know that we take vitamin D because MS is more prevalent in countries further from the equator where people's levels are lower. However I have read that vitamin D may also have a role to play in better outcomes with Covid-19 and that there have been more deaths in warmer countries (Italy and Spain) than in colder ones such as Scandanavia because these countries do not supplement with Vitamin D and so levels are lower there. Caroline Clarke was also talking about this on the podcast recently. This seems to contradict OMS's view and I wondered what your thoughts are? From Nicola
You are right, there is currently a great degree of scientific interest into vitamin D and COVID-19. This is due to the very potent immunomodulatory (control of the immune system) effects of vitamin D, and the fact that the vit. D receptor is found in every organ of the body. Early evidence points to better COVID-19 outcomes with higher levels of vitamin D, but further research is needed.
With regards to outcomes in Spain and Italy, interestingly vitamin D deficiency is actually very common in these countries – the population is older than many other countries, they don’t supplement food with vitamin D, and many avoid sun exposure.
In Scandinavian countries they have very high and widespread levels of food fortification and self-supplementation, to counteract the lack of strong sunlight throughout much of the year, so vitamin D deficiency is actually rather uncommon.
Clarification of my Q re stem. cells: if the treatment is without decreasing immunity , but just infusion of my own stem cells from bone marrow to bloodstream.
This sounds like a Mesenchymal Stem Cell Transplant (MSCT). There is currently a study ongoing in Bristol, U.K.- ACTiMuS trial(link is external) on this subject. Early mice models have shown that MSCT may protect nerves from MS related damage, and promote myelin repair, but large-scale study results in humans are still awaited, and at present there isn’t a great deal of evidence to support its use in MS.
Dr Aaron Boster (US neurologist) recommends Carnite for MS. Any opinion? From Ian
I think you might be referring to L-carnitine? It is an amino acid supplement that is sometimes used in MS to try and treat fatigue. Study results so far have been rather inconclusive, some small-scale trials have shown no benefit compared to standard medical treatment (amantadine) or placebo, whilst there are anecdotal patient reports of symptom improvement. It is unlikely to do any harm, but there doesn’t appear to be a huge amount of evidence to support its benefit in MS.
My GP sent me to blood tests after I reported symptoms that I thought MS related while she speculates it may be hypothyroidism. Is there any evidence that links MS to thyroid disease? From Sara
We know that if you have one auto-immune disease that it is more likely you will develop another, and thyroid disease is commonly auto-immune in nature. That said, while there can be some overlap in the symptoms of the 2 conditions, it is extremely important to recognise that although blood tests are diagnostic of thyroid disease, there is no single blood test that can reliably diagnose or exclude MS. This can only be done through a combination of your symptom history, clinical examination and MRI scan of the brain and spine.
My symptoms were thought to be antiphospholipid syndrome until relapse about 2.5 years ago and were responding well to B12 and aspirin. Is there much overlap? From Kate
Low levels of vitamin B12 can mimic MS symptoms, and it is possible that you had both low B12 and MS simultaneously, or that the low B12 levels pre-existed the development of MS, and the two are unrelated. Anti-phospholipid syndrome (APS) does appear to be more common in people with MS https://pubmed.ncbi.nlm.nih.gov/25326228/ and APS can also mimic MS – an MRI is the crucial investigation in distinguishing between the two conditions, as APS does not lead to inflammatory lesions in the brain and spine, whereas MS does.
Can vagus nerve stimulation help with MS? From Blaise
Absolutely. The vagus nerve is an amazing thing, as it meanders (it means “wandering” in latin) throughout much the body, and is vital in restoring balance to our autonomic nervous system. It is responsible for the “relaxation response”, the crucial rest and repair circuit that is thought to be activated by meditation and mindfulness practice. A formal stress reduction practice is a vital part of MS management, and a key part of the OMS recovery program.
Breathing exercises and even cold-water immersion also activate the vagus nerve – lots of interesting research into this at the moment! https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6334714/
Have you heard about bioidentical hormones?
Yes, I wonder if you are referring to the bioidentical hormones often used as an alternative to HRT? They are derived from plant sources, rather than being manufactured in a lab or derived from the traditional animal sources.
They are a source of much controversy, proponents claim that they are safer and a “natural” source, and that patient outcomes are superior to those using traditional HRT methods. https://pubmed.ncbi.nlm.nih.gov/19179815/
The counter argument is that the regulation is nowhere near as tight as for HRT, as bioindentical hormones are considered a supplement rather than a medication, so not subject to the same controls. Also, the safety and efficacy data are generally taken from much smaller studies than the large-scale, long-term HRT data. https://pubmed.ncbi.nlm.nih.gov/17627398/. Nonetheless they are very widely used, and many women appear to derive significant benefit.
Neuropathy in the toes what can one do if it happens with MS? Drugs didn't help with the pain. From Michelle
It is now well accepted that meditation and specifically mindfulness techniques can be a very effective method of chronic pain management. You are essentially teaching your brain to “turn down” or ignore the abnormal pain signals and create new circuits, and over time this can lead to a significant improvement in your symptoms. It is also important to remember the important role that exercise can play in pain relief, specifically yoga and pilates, which can both be very beneficial.
Another question from Northern Ireland. I was diagnosed in November 2019 and had another MRI in March 2020. I had 4 new lesions in this time, is this normal? I am new to OMS and hoping that with this and Tysabri it will slow down the progression. Thanks Emma
I wouldn’t be at all surprised that there were more lesions so soon after diagnosis. Any DMD usually takes 6-12 months to have its full effect, and we know on average it can 3-5 years to see the full benefits of OMS. Hang on in there Emma.
Why are swallowing problems an issue with covid, like age? From Michelle
If someone has difficulty in controlling their swallowing, there is an increased likelihood that they might inhale fluids or foods into the airways or lungs (aspiration), as the wind pipe (trachea) and feeding tube (oesophagus) are very close to each other, and a reflex from the brain controls a flap that covers the airway as we swallow.
If the reflex isn’t functioning correctly due to MS related brain-stem damage, then this aspiration can lead to a very severe form of pneumonia that can be very serious and difficult to treat. It therefore seems logical to assume that there may be at increased risk of complication from any respiratory infection, as the normal functioning and protective reflexes in the airways could be impaired.
My thigh and lower leg is getting thinner on my weak side (drop foot, but able to walk 15 kilometers with my odfs), while muscles on my strong side develop as im training. Can I train my weak leg to look normal? From Ka
Like any muscle, the more you work it, the stronger (and bigger) it becomes. It is no different in MS, it is simply that you must adapt to force the weaker side to work, as the strong will naturally try to compensate. It would perhaps be worthwhile getting in touch with a trainer with experience of working with pwMS or other neurological conditions, or a physiotherapist. They could provide some focused exercises to work on the weaker side and rebuild some of the lost muscle.
What do you think about using Tavegil (Clemastine) to improve the prognosis in MS? FRom Sue
There is evidence from a small early study that high dose clemastine increased nerve transmission speeds in the optic nerve of pwMS. The proposed theory is that this is due to remyelination of the damaged pathways, which is a very exciting early development. But, there needs to be a much larger study assessing disability scores and relapse rates before we can say anything for sure. It is also worth noting that the dose in the study was double the normal hayfever dose, the significant side effect of which is drowsiness, which could of course worsen fatigue.
I feel like my feet are permanently freezing, though in reality they aren't. Would hypnosis be of any help with this? From Erika
This is likely due to MS related damage to the nerves that sense temperature in the lower limbs, and is a very common symptom. There is evidence that meditation generally, and mindfulness specifically can help in chronic pain – retraining the brain to “turn down” the abnormal signals over time. I would imagine that the same principle applies to your own problem too, and I highly recommend it. With regards to hypnosis, this is something that is notoriously difficult to study, but again there is some evidence that it can help in chronic pain, so it may be worth a try – there is nothing to lose, and it certain cannot do any harm.
Can cognitive decline (inc. brain fog) increase without tangible relapses or how can this be explained? From Claudia
This is difficult to answer without knowing the specific details, but yes, it is possible. We know that there is a real “iceberg phenomenon” in MS, with much of the disease activity going on under the surface, and not necessarily manifesting as a relapse. An MRI would demonstrate if there is new activity in the brain, but cognitive issues can be caused by a variety of factors and it may be worthwhile discussing this further with your medical team.
Hi, I’ve been on Tysabri for 10 years and my infusions have been extended from every 4 weeks to 6 weeks. Is this typical of the new norm? Thank you. From Laura
Yes this is being used widely now. It is called Extended Interval Dosing, and has been shown to be as effective as monthly dosing in terms of relapse prevention and disability progression, whilst also reducing the risk of PML, which is extremely important in those using Tysabri for more than 2 years (at which point PML risk starts to increase), or with a positive JCV titre.
As fasting and the fasting-induced autophagy seem to have positive effects on MS, is fasting safe in Sars-CoV-2 times. Or would it weaken the immune system’s response to a Sars-CoV-2 infection? Do we know anything on this? From Beate
To the best of my knowledge there haven’t been any studies specifically looking into fasting and COVID-19, it is simply too new a disease for research like that. The focus at present is on finding effective medical treatments, and in developing a vaccine.
That said, there is some evidence to say that fasting during infection may help to regulate the immune response, and often the factors that make us most unwell are those manufactured in the body as a response to infection, rather than the pathogen itself. We know that this is the case in many severe forms of COVID-19, the so-called “cytokine storm” that causes the most severe lung damage is due to an “over-reaction” of the immune system. This is one of the reasons why vitamin D is felt to be so important in COVID-19, as it is a very potent regulator of the immune system. Fasting has a similar effect, so it could very well be of benefit. The old saying of “feed a cold, starve a fever” may have a degree of truth to it.
A word of caution though, there are also mice studies that show certain longer types of fasting can lower the white blood cell count, and these cells are the “soldiers” of the immune system, needed to mount the initial attack against a foreign bacteria or virus. So, as with everything in MS, there seems to be a very fine balance.