The evidence linking poor metabolic health to poor health outcomes is overwhelming and needs to be part of the holistic management of MS. Or should we ignore it and leave it up to others to manage?
Not sure it is up to a particular health care pro in general. Three years ago before my recent series of relapse that resulted in a 18 month rollercoaster to get a diagnosis I had a vo2 max of 66 as a 45 year old male and resting heart of 42. As I started my first relapse that effected my physical health presenting to three different gps that my health wasn’t right and detailed evidence as a keen cyclist able to demonstrate issues in my right ankle through the pedal stroke they just thought I was crazy! Clonus identified on later inspection. And I was over reacting and obsessive about my body. Was an extremely keen cyclist. Now vo2 of 33 and unable to ride a bicycle and limited to walking about 1 mile. To know my heart rate over the years was described as neurotic by a thoracic consultant - just go out on your bike she said unbeknown to her or I that I was having my 3rd relapse 15 months. So to sum up, HCP need to recognise the value of wearable tech and not dismiss it! As if the largest company in the world would equip their Watch with a gimmick hr and Sat oxygen monitors! I demanded a referral to a neurologist privately from the 4 th gp as previously the rheumatologist I was recommended, agreed with the 3rd doctor that it was in my head! Which was in right ball park just needed to toss the net wider and just go with the central nervous system catch all. Sorry rant over. I guess I self managed my health and when I needed a professional was let down a bit. Even when going private. 😞
A really interesting read. My bowel is a constant Yo-yo of constipation and frequent pooping. I turned down the latest migraine injectables as it can cause constipation and a few folk were hospitalised in the trials. A Dr who called me to discuss my reasons did not really get it. How miserable bowel dysfunction is.
I have a healthy diet and fast for 15 hours most nights. I get the exercise I can but if I miss the window of opportunity earlier in the day I have no energy.
I’ve often wondered about child hood trauma/ abuse flooding the developing brain with cortisol’s and setting some of us up for diseases such as MS. I know many MSers won’t have had these experiences and it’s a very sensitive subject, but being in fight/ flight or freeze on a regular basis has to be bad for our physical developing bodies.
Rehan et al. Association of adverse childhood experiences with adulthood multiple sclerosis: A systematic review of observational studies. Review Brain Behav. 2023 Jun;13(6):e3024. doi: 10.1002/brb3.3024. Epub 2023 May 1.
Introduction: Adverse childhood experiences (ACEs) are proposed to increase the risk of developing multiple sclerosis (MS) later in life. This systematic review aimed to explore the correlation between ACEs and MS development, age of onset, quality of life in MS patients and MS relapse rates.
Methods: We searched a total of six databases in June 2022 and retrieved the relevant studies. The population included adult (18+) individuals who either had been diagnosed or were at risk for developing MS and also had exposure to ACEs. Our primary outcomes include the risks of MS development, age of MS onset, and MS relapse rate in patients who were exposed to different types of ACEs.
Results: A total of 11 studies were included in our review. A study reported that among 300 women diagnosed with MS, 71 (24%) reported a history of childhood abuse; moreover, with further research, it was concluded that ACEs were associated with the development of MS. Abuse that occurred 2-3 times per week was associated with an 18.81-fold increased risk of having MS when compared to the unexposed sample. The relapse rate of MS was found to be substantially greater in severe cases of ACEs compared to individuals who did not report any ACEs.
Conclusions: Results support a significant association between ACEs and the development of MS; individuals with a positive history of ACEs develop MS symptoms earlier. Moreover, the severity of ACEs is also linked with increased relapse rates of MS.
I had an extremely traumatic childhood, which tbh continued for decades. Neglect and abuse by my family and the NHS. Literal PTSD. I know being denied treatment made my MS far worse than it would have been otherwise, but I have also wondered how big a part trauma played in my developing MS and it being highly active for decades. There's no answer to that, but it can't have helped. 🤕
Thank you for this research post. Given it’s recent research shows how the subject was suspected but not acknowledged. I read research on this decades ago but the doctor who wrote it was told to apologise to the abused MSers. Regards his suggestion. The article was taken down from the internet. However, I’d long suspected a link. It partly drove me to report my abuser and after a 6 year battle I saw him jailed.
Chris Hawkes. Is multiple sclerosis a sexually transmitted infection? J Neurol Neurosurg Psychiatry. 2002 Oct;73(4):439-43. doi: 10.1136/jnnp.73.4.439.
It is proposed that multiple sclerosis may be transmitted chiefly by sexual contact. Arguments favouring this include: migration studies that suggest a transmissible agent in adolescence; clusters of multiple sclerosis which have occurred in low prevalence areas following entry of young males; the similarity of multiple sclerosis to tropical spastic paraplegia, a known sexually transmitted infection with resemblance to primary progressive multiple sclerosis; an increased rate in drug misusers; a similar age of onset and sex pattern to that found in sexually transmitted disease; increased incidence of multiple sclerosis in those using oral contraceptives; low multiple sclerosis rates in societies with a strict moral code; longitudinal shifts in sex prevalence that show an increase in women after the sexual revolution of the 1960s; and important exceptions to the worldwide distribution corresponding to countries with permissive attitudes to sex. Family, conjugal pair, twin, and adoption studies are compatible with an infectious cause of multiple sclerosis if this is sexually transmitted. It is not proposed that sexual transmission is the only cause but that inherited factors create a susceptibility to a sexually transmitted neurotropic agent. It is hoped this hypothesis might encourage a new direction of neurological research.
I believe it is. It feeIs familiar. I-recall it made me feel as if I was partially responsible, then angry. However, then I became driven to disperse the feelings and put responsibly where it belonged. So maybe not a totally unhelpful article after all. Resilience comes out on top when you believe in yourself. It does show the huge responsibility writers have on such sensitive matter. One person may feel empowered for justice another may feel it’s the last straw and it breaks them.
I pretty sure EBV causes MS and EBV is transmitted sexually in about 10% of people. However, it is mainly transmitted by saliva, hence the name kissing disease for infectious mononucleosis. Sorting out salivary transmission from sexual transmission is difficult.
I get that part having followed you and read about EBV. A lot of sexual abuse also includes kissing.
Do you think the Author was thinking EBV when he wrote the main article? I didn’t pick that up.
I think there are many components to this illness. Or rather, what makes are susceptible. Thanks for your insight. It’s always interesting and thought provoking. Good for my Brain 🤯🙂
yes - I wondered about my child hood trauma too . There are geat evidence based books on this and how it affects teh mind- body leading to increased riskk of autoimmune and other diseases
I read some years ago about the link but didn’t realise there is now evidence based books. It seems obvious to me that our emotional mind / brain will hugely impact our physical health. For decades they were seen as separate. Fortunately modern thinking Medics are seeing the light
Dr. Gabor Mate has written a book about childhood trauma and the link to diseases. He mentions MS several times in the book "When the Body Says No: The Cost of Hidden Stress. Here is a link to his website. https://drgabormate.com/
I was diagnosed as pre-diabetic 18 months ago. I eat a low carb Mediterranean diet, take short walks several times a day, eat 30-40 different plant foods a week including fermented foods eg kefir. I’ve lost 17lbs and my HBa1c score has dropped from 46 to 40 - back within normal limits. I also do 30 mins of MS related exercise classes online twice a week. I’m doing as much as my MS will allow. Glad to read your post about the importance of metabolic health.
I'm sort of doing self-treatment on what you refer to as metabolic health: intermittent fasting, exercise (although I could do more), various supplements,...
Given your interest in dyslipedemae and metformin, I wondered if you have looked into berberin?
My (current) neuro is also a proponent of a more holistic approach to MS, but in clinical practice (in Belgium), there's simply not enough time to discuss all this. So I usually do some study on one particular topic, select a few questions, and hope we are able to discuss those.
As for preventive medicine, evidently you are right. But I must admit I have only started to take my metabolic health seriously once I started having health problems. I'm afraid that's true for most people, and really hard to change.
This is fascinating, I don't pretend to understand half of it even, but I'm curious about the metabolic side of MS - is this why some of us have crippling fatigue despite low lesion loads? And does this mean that we can, perhaps, do something about it? Whenever I try any exercise other than weights and resistance, I crash for weeks. I'd love to be able to do HIT training or even anything vaguely aerobic to get those endorphins but my body won't let me. Is there a way?
Yes, HIIT can be done using upper body exercises. People with mobility issues can still do HIIT. You simply need to be able to exercise and get you heart rate up to >= 90% of predicted maximum.
Thank you, I don't have mobility issues particularly and my upper body strength is affected by lesion at C2C3. What I mean is that everytime I do exercise other than weights and resistance to the point that I get my heart rate up (so aquafit, or use an exercise bike or whatever) I enjoy it at the time but it triggers weeks long fatigue crashes with exacerbation iof all my MS symptoms and puts me in bed. I've been trying for seven years but it always happens. I can do my weights and resistance with no ill effect though, but even when my trainer tries five minutes of something to get the blood pumping it flares my symptoms (we've tried boxing so it's just arms, tried just legs, nothing works) I don't understand it and thought maybe the metabolic changes might explain why and hold the key to solving it
This sounds like fatigue or temperature-related conduction block.It can take quite a long time to reverse itself and can be associated with severe fatigue. What you also have to realise that deconditioning itself creates a viscous downward spiral. Have you tried a graded, but very gradual, exercise programme to try and increase your exercise tolerance over many months?
Not really, I've started several times but I get disheartened when I get to the point where I start being ill again. The temperature block sounds right, my vision goes now whenever I walk quickly or the weather is hot. Thank you for giving me the term to explain what happens. People seem to think I can push through, but it doesn't work like that.
Thank you Prof G and Pip. I have a similar dilemma I’ve called the “3 steps forward 5 steps back” regarding exercise. I’ve been dealing with another kidney infection and the fatigue has caused sleeping round the clock. I will need a physiotherapist at this point, because it will become a downward spiral after weeks of this. I very much like my neurologist, but she is incapable of coordination of services. But the GP can’t connect the dots, although at least he is investigating the now chronic kidney function issues. I wish there were one place to deal with all of this. As we say, not everything is MS. My fatigue seems to be increasing, however, regardless of meds. Thanks for this.🌷
It's so difficult isn't it. I've only made progress over the past year because I found a personal trainer with an interest in neuro rehabilitation and he's been working with me to improve my strength and neurological function. It's a proper TRX type gym with weights rather than machines, not the sort of place I ever imagined I would go. He's been amazing though and after so many years of the exercises physiotherapists gave me not working and ending up making me ill, it is a huge relief to be gaining strength. I sent this article to him today and he's already been down a rabbit hole of research and is devising a plan for HIIT training for me. It'll be really interesting to see if we can manage to make it work. Its all too easy for people to tell us to exercise and eat well, but it's usually out of our control. I wish my body would let me exercise properly and my digestive system would let me eat healthily.
We definitely shouldn’t leave it to the GPs! I have always taken an active role in my health with regular exercise; a healthy diet; not smoking and good sleep habits. A couple of years ago I was put on HRT because I had osteoporosis and it has helped this. Now my GP is constantly talking about me coming off HRT (presumably because of the cost). I did mention that not only was it helping with the osteoporosis but probably also with the MS but he insists there is no research evidence to prove the latter. Do you have any specific research evidence to support this please.
There is no definitive age at which women should stop taking hormone replacement therapy (HRT). The decision to discontinue HRT should be based on an individual's specific circumstances and needs.
My GP isn’t basing it on my age, I’m only 54 and I have friends over 60 on it. My GP surgery say it’s because I don’t have peri-menopausal symptoms but that’s probably because I started on it in my late 40s before I had symptoms. The fact that it’s helping with the osteoporosis and possibly the MS is being ignored.
I don't think your GP has a medical reason to stop your HRT if you are menopausal. I would ask for the reason and then counter him/her with why the reason is not justified based on the evidence.
I did raise this with the neurologist at last review, asking whether I could look to him for support if the GP ever tried to stop my HRT, but got a rather luke-warm and non-committal response. Which isn’t to say the help wouldn’t be there if I actually needed it. But it sometimes feels like a game of cat-and-mouse, doesn’t it? It all costs energy, and there’s only a finite amount of that to fight one’s corner with.
“There is no definitive age cut off for HRT use as this should be determined by individual with risks versus benefits. Persistent symptoms on cessation of HRT or the need for bone protection are indicators for on-going treatment.”
Recommend watching the YouTube vid by Brigham and Women’s Hospital from three years ago: ‘ Neuroprotection Induced by Estriol Treatment’
Shared some of the key conclusions with my GP saying that unless there were any contraindications then I’m staying on Estrogel for life! (I’m 59) He replied that he was aware of studies showing HRT is of benefit to women with MS and that he endorsed my position on it. Unfortunately he’s since left the practice🤦🏻♀️
Certainly one reason I no longer watch much terrestrial TV here in the UK is because I object to the constant barrage of ads for fast food and home delivery services.
Carefully scripted and filmed to tempt, they are in my eyes just as irresponsible as the old ads for cigarettes and alcohol we used to see until they were banned.
I want sexy ads for delicious courgettes and berries!
Before my diagnosis of MS I had already identified that I was pre diabetic. I was chasing reasons for fatigue. I had to ask primary care to check my blood glucose levels and screen for diabetes. I have moderate family history of type 2 diabetes. I discovered that my blood glucose was within the “pre-diabetic” range. Weight loss, stress reduction and paying more attention to carbohydrate intake has led to a reduction in my blood glucose levels and me being often in what I call the pre- pre-diabetic range. I was already doing a lot of exercise. I measure my own blood glucose with a fairly cheap monitor but have to chase up primary care for my yearly HbA1c blood check which gives a more useful overview of my metabolic status. (I am also hypothyroid and on replacement). In primary care I meet some unhelpful responses. Despite the fact that if I flip over into diabetes I could cost the NHS huge amount more money I feel that the easy not very expensive test should be more easily obtained and my ‘self managing” should be encouraged. If I have managed to get my HbA1c below the pre diabetic range there is the suggestion to me that I do not need to be monitored even though this may just be marginally below and in the context of some hard work. There seems to be a lack of recognition that being at the very top of normal blood glucose must be very like being prediabetic in terms of effect on health and as I have shown the tendency to have high blood glucose I need continued if infrequent monitoring. I do not think that I would be adequately supported in primary care if it wasn’t for my own knowledge as a retired doctor and my gently pushing for monitoring.
The only aspect of screening that primary care have been pre-emptive about is lipids and statins. Sceptically or perhaps realistically I believe this is because of the financial aspect of prescribing the statins.
Since my last relapse of MS I have found it much harder to balance exercise and fatigue and I worry for the future if I am unable to exercise enough.
None of this has been discussed with me by the MS team.
Thanks Prof G - this is brilliant; collating all the 'how to effectively manage and improve your MS' evidence based strategies together. And yes I see that over the 8 years through my own research and experimentation, and through your MS selfie, I can tick all the boxes. I follow all the strategies. Result? I am better than I have ever been by miles. No medical professional has ever given me any of this advice, no medical preofessional has ever been interested when I try to tell them what I do, why, and the outcome. But other people are; they also follow the strategies and take control of their health - with great results which inspires them to do more. So no, do not leave it up to others; only we can find the right way to manage our health ourselves through your 'gold standard MS selfie, through our own research , and through sharing our stories and experiences. Thank you .
After some of your previous posts I’ve been trying to do more. Exercise and diet are a primary focus. Unfortunately, my gp’s won’t prescribe me metformin.
I would love to do intermittent fasting but have some insulin resistance so I’m told it’s not for me.
Doing what I can with roadblocks on the way! Thanks for another great post!😊
My metabolic health is excellent. Good diet, vitamin D, weight, etc. Yet I am so exhausted I’m far from functional these days. I finally have a CT scan scheduled for my kidneys after weeks of sleeping during and after kidney infection and months of right flank pain chalked up to back spasms. Any small task right now is challenging. I get something done, and then it’s back to sleep. This is the opposite of my raving insomnia. Which is worse, I ask myself? It’s a mystery to me…I wish my doctors would just coordinate.
I think I could be much better if I had an informed advocate beside me. It’s so very hard to assimilate so much information if you’re not a medical professional. Plus having relevant tests & hypothesis carried out. I usually have relapses around end of February. I started getting allergies/hay fever not long before my diagnosis - but it took me ages to get allergy testing and evaluate the results. I’ve dieted most of the time especially when trying to Eliminate foods that could give me reactions.
You are so right. Trying to connect the dots alone is impossible. (Ironically, used to be an advocate. Now I don’t have the energy!) Diet elimination is one of the most challenging, I think. This was a bad kidney infection which seems resolved, however, there is still considerable pain and a continuing high level of protein in my urine, yet my GP’s office sat on the CT until I nagged. Ironically, my neurologist and I had considered cladribine, but I’m too run down at this point. Drat! Feel better.🌷
For decades I had MS with no diagnosis/treatment and was denied a referal to a neurologist or MRI. Now that I have the right diagnoses, GPs treat me with less contempt, but still have zero interest in my 'metabolic health.' No GP is going to do that for me; either I do it or no one will.
I have an MS diagnosis because I gave up on the NHS, diagnosed myself, and went private. I now get one video chat a year with a neurologist. My MS Team don't get involved in my 'metabolic health.' I'm lucky I have an MS nurse I can email, but only about things like prescriptions. I'm going to have to go private again to have a neurologist tell me what all those years of medical negligence have done to my brain.
It's a daily struggle to take care of my 'metabolic health', knowing I can never make up for the damage the NHS did to my brain. It seems so futile. But I don't smoke or drink, I'm almost down to an ideal weight, I work hard on my sleep disorder, and stopped taking anticholinergic medication. I asked my GP if I can get Metformin, he got a good laugh out of it. I'm in every group listed for poor social health, but not a lot I can do about that. I need to do better on exercise. I try but it's really hard when one's barely surviving. 🤕
Great read - thanks Gavin - I am a huge supporter of using a holistic approach to manage my health - my knowledge of metabolic health is better because of your article - can I share your article in my FB Group, MS stands for Mindset Shift?
1.1. Semaglutide is recommended as an option for weight management, including weight loss and weight maintenance, alongside a reduced-calorie diet and increased physical activity in adults, only if:
it is used for a maximum of 2 years, and within a specialist weight management service providing multidisciplinary management of overweight or obesity (including but not limited to tiers 3 and 4), and
they have at least 1 weight-related comorbidity and:
a body mass index (BMI) of at least 35.0 kg/m2, or
a BMI of 30.0 kg/m2 to 34.9 kg/m2 and meet the criteria for referral to specialist weight management services in NICE's guideline on obesity: identification, assessment and management.
Use lower BMI thresholds (usually reduced by 2.5 kg/m2) for people from South Asian, Chinese, other Asian, Middle Eastern, Black African or African-Caribbean family backgrounds.
1.2. Consider stopping semaglutide if less than 5% of the initial weight has been lost after 6 months of treatment.
1.3. These recommendations are not intended to affect treatment with semaglutide that was started in the NHS before this guidance was published. People having treatment outside these recommendations may continue without change to the funding arrangements in place for them before this guidance was published, until they and their NHS clinician consider it appropriate to stop.
Not sure it is up to a particular health care pro in general. Three years ago before my recent series of relapse that resulted in a 18 month rollercoaster to get a diagnosis I had a vo2 max of 66 as a 45 year old male and resting heart of 42. As I started my first relapse that effected my physical health presenting to three different gps that my health wasn’t right and detailed evidence as a keen cyclist able to demonstrate issues in my right ankle through the pedal stroke they just thought I was crazy! Clonus identified on later inspection. And I was over reacting and obsessive about my body. Was an extremely keen cyclist. Now vo2 of 33 and unable to ride a bicycle and limited to walking about 1 mile. To know my heart rate over the years was described as neurotic by a thoracic consultant - just go out on your bike she said unbeknown to her or I that I was having my 3rd relapse 15 months. So to sum up, HCP need to recognise the value of wearable tech and not dismiss it! As if the largest company in the world would equip their Watch with a gimmick hr and Sat oxygen monitors! I demanded a referral to a neurologist privately from the 4 th gp as previously the rheumatologist I was recommended, agreed with the 3rd doctor that it was in my head! Which was in right ball park just needed to toss the net wider and just go with the central nervous system catch all. Sorry rant over. I guess I self managed my health and when I needed a professional was let down a bit. Even when going private. 😞
A really interesting read. My bowel is a constant Yo-yo of constipation and frequent pooping. I turned down the latest migraine injectables as it can cause constipation and a few folk were hospitalised in the trials. A Dr who called me to discuss my reasons did not really get it. How miserable bowel dysfunction is.
I have a healthy diet and fast for 15 hours most nights. I get the exercise I can but if I miss the window of opportunity earlier in the day I have no energy.
I’ve often wondered about child hood trauma/ abuse flooding the developing brain with cortisol’s and setting some of us up for diseases such as MS. I know many MSers won’t have had these experiences and it’s a very sensitive subject, but being in fight/ flight or freeze on a regular basis has to be bad for our physical developing bodies.
Rehan et al. Association of adverse childhood experiences with adulthood multiple sclerosis: A systematic review of observational studies. Review Brain Behav. 2023 Jun;13(6):e3024. doi: 10.1002/brb3.3024. Epub 2023 May 1.
Introduction: Adverse childhood experiences (ACEs) are proposed to increase the risk of developing multiple sclerosis (MS) later in life. This systematic review aimed to explore the correlation between ACEs and MS development, age of onset, quality of life in MS patients and MS relapse rates.
Methods: We searched a total of six databases in June 2022 and retrieved the relevant studies. The population included adult (18+) individuals who either had been diagnosed or were at risk for developing MS and also had exposure to ACEs. Our primary outcomes include the risks of MS development, age of MS onset, and MS relapse rate in patients who were exposed to different types of ACEs.
Results: A total of 11 studies were included in our review. A study reported that among 300 women diagnosed with MS, 71 (24%) reported a history of childhood abuse; moreover, with further research, it was concluded that ACEs were associated with the development of MS. Abuse that occurred 2-3 times per week was associated with an 18.81-fold increased risk of having MS when compared to the unexposed sample. The relapse rate of MS was found to be substantially greater in severe cases of ACEs compared to individuals who did not report any ACEs.
Conclusions: Results support a significant association between ACEs and the development of MS; individuals with a positive history of ACEs develop MS symptoms earlier. Moreover, the severity of ACEs is also linked with increased relapse rates of MS.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10275535/
I had an extremely traumatic childhood, which tbh continued for decades. Neglect and abuse by my family and the NHS. Literal PTSD. I know being denied treatment made my MS far worse than it would have been otherwise, but I have also wondered how big a part trauma played in my developing MS and it being highly active for decades. There's no answer to that, but it can't have helped. 🤕
Thank you for this research post. Given it’s recent research shows how the subject was suspected but not acknowledged. I read research on this decades ago but the doctor who wrote it was told to apologise to the abused MSers. Regards his suggestion. The article was taken down from the internet. However, I’d long suspected a link. It partly drove me to report my abuser and after a 6 year battle I saw him jailed.
Is this the article you were referring to?
Chris Hawkes. Is multiple sclerosis a sexually transmitted infection? J Neurol Neurosurg Psychiatry. 2002 Oct;73(4):439-43. doi: 10.1136/jnnp.73.4.439.
It is proposed that multiple sclerosis may be transmitted chiefly by sexual contact. Arguments favouring this include: migration studies that suggest a transmissible agent in adolescence; clusters of multiple sclerosis which have occurred in low prevalence areas following entry of young males; the similarity of multiple sclerosis to tropical spastic paraplegia, a known sexually transmitted infection with resemblance to primary progressive multiple sclerosis; an increased rate in drug misusers; a similar age of onset and sex pattern to that found in sexually transmitted disease; increased incidence of multiple sclerosis in those using oral contraceptives; low multiple sclerosis rates in societies with a strict moral code; longitudinal shifts in sex prevalence that show an increase in women after the sexual revolution of the 1960s; and important exceptions to the worldwide distribution corresponding to countries with permissive attitudes to sex. Family, conjugal pair, twin, and adoption studies are compatible with an infectious cause of multiple sclerosis if this is sexually transmitted. It is not proposed that sexual transmission is the only cause but that inherited factors create a susceptibility to a sexually transmitted neurotropic agent. It is hoped this hypothesis might encourage a new direction of neurological research.
https://jnnp.bmj.com/content/73/4/439.long
I believe it is. It feeIs familiar. I-recall it made me feel as if I was partially responsible, then angry. However, then I became driven to disperse the feelings and put responsibly where it belonged. So maybe not a totally unhelpful article after all. Resilience comes out on top when you believe in yourself. It does show the huge responsibility writers have on such sensitive matter. One person may feel empowered for justice another may feel it’s the last straw and it breaks them.
I pretty sure EBV causes MS and EBV is transmitted sexually in about 10% of people. However, it is mainly transmitted by saliva, hence the name kissing disease for infectious mononucleosis. Sorting out salivary transmission from sexual transmission is difficult.
I get that part having followed you and read about EBV. A lot of sexual abuse also includes kissing.
Do you think the Author was thinking EBV when he wrote the main article? I didn’t pick that up.
I think there are many components to this illness. Or rather, what makes are susceptible. Thanks for your insight. It’s always interesting and thought provoking. Good for my Brain 🤯🙂
yes - I wondered about my child hood trauma too . There are geat evidence based books on this and how it affects teh mind- body leading to increased riskk of autoimmune and other diseases
I read some years ago about the link but didn’t realise there is now evidence based books. It seems obvious to me that our emotional mind / brain will hugely impact our physical health. For decades they were seen as separate. Fortunately modern thinking Medics are seeing the light
Dr. Gabor Mate has written a book about childhood trauma and the link to diseases. He mentions MS several times in the book "When the Body Says No: The Cost of Hidden Stress. Here is a link to his website. https://drgabormate.com/
I was diagnosed as pre-diabetic 18 months ago. I eat a low carb Mediterranean diet, take short walks several times a day, eat 30-40 different plant foods a week including fermented foods eg kefir. I’ve lost 17lbs and my HBa1c score has dropped from 46 to 40 - back within normal limits. I also do 30 mins of MS related exercise classes online twice a week. I’m doing as much as my MS will allow. Glad to read your post about the importance of metabolic health.
I'm sort of doing self-treatment on what you refer to as metabolic health: intermittent fasting, exercise (although I could do more), various supplements,...
Given your interest in dyslipedemae and metformin, I wondered if you have looked into berberin?
My (current) neuro is also a proponent of a more holistic approach to MS, but in clinical practice (in Belgium), there's simply not enough time to discuss all this. So I usually do some study on one particular topic, select a few questions, and hope we are able to discuss those.
As for preventive medicine, evidently you are right. But I must admit I have only started to take my metabolic health seriously once I started having health problems. I'm afraid that's true for most people, and really hard to change.
This is fascinating, I don't pretend to understand half of it even, but I'm curious about the metabolic side of MS - is this why some of us have crippling fatigue despite low lesion loads? And does this mean that we can, perhaps, do something about it? Whenever I try any exercise other than weights and resistance, I crash for weeks. I'd love to be able to do HIT training or even anything vaguely aerobic to get those endorphins but my body won't let me. Is there a way?
Yes, HIIT can be done using upper body exercises. People with mobility issues can still do HIIT. You simply need to be able to exercise and get you heart rate up to >= 90% of predicted maximum.
Thank you, I don't have mobility issues particularly and my upper body strength is affected by lesion at C2C3. What I mean is that everytime I do exercise other than weights and resistance to the point that I get my heart rate up (so aquafit, or use an exercise bike or whatever) I enjoy it at the time but it triggers weeks long fatigue crashes with exacerbation iof all my MS symptoms and puts me in bed. I've been trying for seven years but it always happens. I can do my weights and resistance with no ill effect though, but even when my trainer tries five minutes of something to get the blood pumping it flares my symptoms (we've tried boxing so it's just arms, tried just legs, nothing works) I don't understand it and thought maybe the metabolic changes might explain why and hold the key to solving it
This sounds like fatigue or temperature-related conduction block.It can take quite a long time to reverse itself and can be associated with severe fatigue. What you also have to realise that deconditioning itself creates a viscous downward spiral. Have you tried a graded, but very gradual, exercise programme to try and increase your exercise tolerance over many months?
Not really, I've started several times but I get disheartened when I get to the point where I start being ill again. The temperature block sounds right, my vision goes now whenever I walk quickly or the weather is hot. Thank you for giving me the term to explain what happens. People seem to think I can push through, but it doesn't work like that.
Thank you Prof G and Pip. I have a similar dilemma I’ve called the “3 steps forward 5 steps back” regarding exercise. I’ve been dealing with another kidney infection and the fatigue has caused sleeping round the clock. I will need a physiotherapist at this point, because it will become a downward spiral after weeks of this. I very much like my neurologist, but she is incapable of coordination of services. But the GP can’t connect the dots, although at least he is investigating the now chronic kidney function issues. I wish there were one place to deal with all of this. As we say, not everything is MS. My fatigue seems to be increasing, however, regardless of meds. Thanks for this.🌷
It's so difficult isn't it. I've only made progress over the past year because I found a personal trainer with an interest in neuro rehabilitation and he's been working with me to improve my strength and neurological function. It's a proper TRX type gym with weights rather than machines, not the sort of place I ever imagined I would go. He's been amazing though and after so many years of the exercises physiotherapists gave me not working and ending up making me ill, it is a huge relief to be gaining strength. I sent this article to him today and he's already been down a rabbit hole of research and is devising a plan for HIIT training for me. It'll be really interesting to see if we can manage to make it work. Its all too easy for people to tell us to exercise and eat well, but it's usually out of our control. I wish my body would let me exercise properly and my digestive system would let me eat healthily.
We definitely shouldn’t leave it to the GPs! I have always taken an active role in my health with regular exercise; a healthy diet; not smoking and good sleep habits. A couple of years ago I was put on HRT because I had osteoporosis and it has helped this. Now my GP is constantly talking about me coming off HRT (presumably because of the cost). I did mention that not only was it helping with the osteoporosis but probably also with the MS but he insists there is no research evidence to prove the latter. Do you have any specific research evidence to support this please.
There is no definitive age at which women should stop taking hormone replacement therapy (HRT). The decision to discontinue HRT should be based on an individual's specific circumstances and needs.
My GP isn’t basing it on my age, I’m only 54 and I have friends over 60 on it. My GP surgery say it’s because I don’t have peri-menopausal symptoms but that’s probably because I started on it in my late 40s before I had symptoms. The fact that it’s helping with the osteoporosis and possibly the MS is being ignored.
I don't think your GP has a medical reason to stop your HRT if you are menopausal. I would ask for the reason and then counter him/her with why the reason is not justified based on the evidence.
I’m girding my loins for the same fight one of these days. Keeping my head down for now.
I did raise this with the neurologist at last review, asking whether I could look to him for support if the GP ever tried to stop my HRT, but got a rather luke-warm and non-committal response. Which isn’t to say the help wouldn’t be there if I actually needed it. But it sometimes feels like a game of cat-and-mouse, doesn’t it? It all costs energy, and there’s only a finite amount of that to fight one’s corner with.
Yes, it all costs energy, which is a wear out of its own. Too true.🌷
“There is no definitive age cut off for HRT use as this should be determined by individual with risks versus benefits. Persistent symptoms on cessation of HRT or the need for bone protection are indicators for on-going treatment.”
from https://www.chelwest.nhs.uk/professionals/gp-hrt-advice-guidance#
Recommend watching the YouTube vid by Brigham and Women’s Hospital from three years ago: ‘ Neuroprotection Induced by Estriol Treatment’
Shared some of the key conclusions with my GP saying that unless there were any contraindications then I’m staying on Estrogel for life! (I’m 59) He replied that he was aware of studies showing HRT is of benefit to women with MS and that he endorsed my position on it. Unfortunately he’s since left the practice🤦🏻♀️
Thank you, I’ll look that up.
Certainly one reason I no longer watch much terrestrial TV here in the UK is because I object to the constant barrage of ads for fast food and home delivery services.
Carefully scripted and filmed to tempt, they are in my eyes just as irresponsible as the old ads for cigarettes and alcohol we used to see until they were banned.
I want sexy ads for delicious courgettes and berries!
Before my diagnosis of MS I had already identified that I was pre diabetic. I was chasing reasons for fatigue. I had to ask primary care to check my blood glucose levels and screen for diabetes. I have moderate family history of type 2 diabetes. I discovered that my blood glucose was within the “pre-diabetic” range. Weight loss, stress reduction and paying more attention to carbohydrate intake has led to a reduction in my blood glucose levels and me being often in what I call the pre- pre-diabetic range. I was already doing a lot of exercise. I measure my own blood glucose with a fairly cheap monitor but have to chase up primary care for my yearly HbA1c blood check which gives a more useful overview of my metabolic status. (I am also hypothyroid and on replacement). In primary care I meet some unhelpful responses. Despite the fact that if I flip over into diabetes I could cost the NHS huge amount more money I feel that the easy not very expensive test should be more easily obtained and my ‘self managing” should be encouraged. If I have managed to get my HbA1c below the pre diabetic range there is the suggestion to me that I do not need to be monitored even though this may just be marginally below and in the context of some hard work. There seems to be a lack of recognition that being at the very top of normal blood glucose must be very like being prediabetic in terms of effect on health and as I have shown the tendency to have high blood glucose I need continued if infrequent monitoring. I do not think that I would be adequately supported in primary care if it wasn’t for my own knowledge as a retired doctor and my gently pushing for monitoring.
The only aspect of screening that primary care have been pre-emptive about is lipids and statins. Sceptically or perhaps realistically I believe this is because of the financial aspect of prescribing the statins.
Since my last relapse of MS I have found it much harder to balance exercise and fatigue and I worry for the future if I am unable to exercise enough.
None of this has been discussed with me by the MS team.
Thanks Prof G - this is brilliant; collating all the 'how to effectively manage and improve your MS' evidence based strategies together. And yes I see that over the 8 years through my own research and experimentation, and through your MS selfie, I can tick all the boxes. I follow all the strategies. Result? I am better than I have ever been by miles. No medical professional has ever given me any of this advice, no medical preofessional has ever been interested when I try to tell them what I do, why, and the outcome. But other people are; they also follow the strategies and take control of their health - with great results which inspires them to do more. So no, do not leave it up to others; only we can find the right way to manage our health ourselves through your 'gold standard MS selfie, through our own research , and through sharing our stories and experiences. Thank you .
After some of your previous posts I’ve been trying to do more. Exercise and diet are a primary focus. Unfortunately, my gp’s won’t prescribe me metformin.
I would love to do intermittent fasting but have some insulin resistance so I’m told it’s not for me.
Doing what I can with roadblocks on the way! Thanks for another great post!😊
My metabolic health is excellent. Good diet, vitamin D, weight, etc. Yet I am so exhausted I’m far from functional these days. I finally have a CT scan scheduled for my kidneys after weeks of sleeping during and after kidney infection and months of right flank pain chalked up to back spasms. Any small task right now is challenging. I get something done, and then it’s back to sleep. This is the opposite of my raving insomnia. Which is worse, I ask myself? It’s a mystery to me…I wish my doctors would just coordinate.
I think I could be much better if I had an informed advocate beside me. It’s so very hard to assimilate so much information if you’re not a medical professional. Plus having relevant tests & hypothesis carried out. I usually have relapses around end of February. I started getting allergies/hay fever not long before my diagnosis - but it took me ages to get allergy testing and evaluate the results. I’ve dieted most of the time especially when trying to Eliminate foods that could give me reactions.
You are so right. Trying to connect the dots alone is impossible. (Ironically, used to be an advocate. Now I don’t have the energy!) Diet elimination is one of the most challenging, I think. This was a bad kidney infection which seems resolved, however, there is still considerable pain and a continuing high level of protein in my urine, yet my GP’s office sat on the CT until I nagged. Ironically, my neurologist and I had considered cladribine, but I’m too run down at this point. Drat! Feel better.🌷
For decades I had MS with no diagnosis/treatment and was denied a referal to a neurologist or MRI. Now that I have the right diagnoses, GPs treat me with less contempt, but still have zero interest in my 'metabolic health.' No GP is going to do that for me; either I do it or no one will.
I have an MS diagnosis because I gave up on the NHS, diagnosed myself, and went private. I now get one video chat a year with a neurologist. My MS Team don't get involved in my 'metabolic health.' I'm lucky I have an MS nurse I can email, but only about things like prescriptions. I'm going to have to go private again to have a neurologist tell me what all those years of medical negligence have done to my brain.
It's a daily struggle to take care of my 'metabolic health', knowing I can never make up for the damage the NHS did to my brain. It seems so futile. But I don't smoke or drink, I'm almost down to an ideal weight, I work hard on my sleep disorder, and stopped taking anticholinergic medication. I asked my GP if I can get Metformin, he got a good laugh out of it. I'm in every group listed for poor social health, but not a lot I can do about that. I need to do better on exercise. I try but it's really hard when one's barely surviving. 🤕
Great read - thanks Gavin - I am a huge supporter of using a holistic approach to manage my health - my knowledge of metabolic health is better because of your article - can I share your article in my FB Group, MS stands for Mindset Shift?
Sure you share anything from MS Selfie
Is elevated bmi and ms enough to warrant request for semaglutide from gp even in the absence of pre diabetes or diabetes?
NICE/NHS Recommendations
1.1. Semaglutide is recommended as an option for weight management, including weight loss and weight maintenance, alongside a reduced-calorie diet and increased physical activity in adults, only if:
it is used for a maximum of 2 years, and within a specialist weight management service providing multidisciplinary management of overweight or obesity (including but not limited to tiers 3 and 4), and
they have at least 1 weight-related comorbidity and:
a body mass index (BMI) of at least 35.0 kg/m2, or
a BMI of 30.0 kg/m2 to 34.9 kg/m2 and meet the criteria for referral to specialist weight management services in NICE's guideline on obesity: identification, assessment and management.
Use lower BMI thresholds (usually reduced by 2.5 kg/m2) for people from South Asian, Chinese, other Asian, Middle Eastern, Black African or African-Caribbean family backgrounds.
1.2. Consider stopping semaglutide if less than 5% of the initial weight has been lost after 6 months of treatment.
1.3. These recommendations are not intended to affect treatment with semaglutide that was started in the NHS before this guidance was published. People having treatment outside these recommendations may continue without change to the funding arrangements in place for them before this guidance was published, until they and their NHS clinician consider it appropriate to stop.
https://www.nice.org.uk/guidance/ta875/chapter/1-Recommendations
I started the Swank diet immediately after being diagnosed with MS 9 years ago. I still follow it, and feel very well.
Many thanks.