I don’t know of any specific platform targeted at MS patients that presents research in enough detail to be helpful to a well informed patient (which most of your readers are!) if there is such a platform in addition to MS Selfie I’d love to know where, but currently I find your site the most useful to me as a MS patient with quite a good grasp of current research avenues, medical concepts relevant to MS and neurological terminology.
The materials provided by the NHS are (for broad ease of access to all patients) too simplistic to properly educated an informed reader. I really appreciate what you do for us here.
Agreed with Foreigner, here. Many of us want to discuss science with a scientist on top of MS research. You are a top researcher, you are also a health practitioner who has diagnosed and treated many. You are also challenging the current state of just drugs directed to reducing the rate of relapses, not targeting PIRA...
I suggest you keep updating us on every new scientific publication that is relevant for pw, and we keep asking updated questions ;).
For example, what is the current state for BTK? What is the most recent info?
I’ve also been reading a lot about frex lately. I am curious how you see frex vs btk used in practice in the next few years. When might someone switch toward one vs the other?
None of the other platforms challenge their readership with real life case studies on treatment selection. The more choice there is, the more valuable this becomes.
I don't find your selfie repetitive and I cannot find any information either online or through neurologists which compares to the information you supply. So please continue as you are if you have the energy! Thank you,
I really like reading about the latest research for types of MS issues, whether they are applicable to my situation or not. I am no longer on a DMT, but I am sure those who are really like the research and your feedback on DMT's. I really enjoy the question and answer posts. Reading your posts helps me to feel up-to-date and also gives me a sense of community.
Agree with others that this is a unique and truly helpful platform. Please continue. Working through recurring issues that many of us have but are under acknowledged is particularly good. For example, I deal with chronic foot pain, and many others do too. Yet my treating neurologist dismisses this since the lesions aren’t in the place she’d expect to have that effect. It’s great how you always take questions very seriously and dig deep - many of us would love to have a neurologist who did the same.
Think people with MS want to have hope, and talk more about real reymylinating therapies. When is this going to come out? When will we start being able to take it? When are we to potentially have some repair?
It would be great to hear your opinion, or any research information there may be, in regards to the links between menopause symptoms & progressive MS. symptoms.
Navigating both together is a mine field. It's hard not to assume things are just the progressive MS playing its games, (whilst also taking HRT for its bone health benefits etc.).
Yet, it makes it difficult fo know if anything should be raised wit MS team.
I second this. Looking at hormones, and the role they play would be incredibly useful. I was diagnosed in 2014 when I was 43, but had probably had MS for a long time, at least since my 20s. I believe the onset of perimenopause led to the relapse which triggered my diagnosis. I survived a breast cancer diagnosis 5 years later, and have been struggling ever since to get some support. I then had a full hysterectomy 2 years ago (ovaries and all) due to some precancerous cells on biopsy. Earlier this year at last I had a telephone appointment with a menopause specialist, and have a short term HRT prescription. I am currently trying to balance the risks with the benefits. In some ways there are too many specialists telling me contradictory things, and I have to work out for myself, be my own expert. My breast surgeon was totally against HRT, my gynae surgeon thinks the Tamoxifen I was put on after the breast cancer caused the uterus problems, which were luckily caught early, my GP despite being the person who knows me and my history the best was unable to give me HRT, my neurologist just agreed that pwMS have a worse menopause than others, but could offer me nothing. And menopause specialists are like gold dust! My review appointment was cancelled and I’m still waiting for this follow up. I work hard at being well, I eat very healthily, don’t smoke, hardly ever drink alcohol, do plenty of exercise. These of course would also be risks of breast cancer and yet no one says someone who smokes and drinks can’t have HRT!
I think you ought not worry about having to post as often, if you think you’re repeating yourself. Mainly, I believe we subscribe for the quality and honesty. You don’t shy away from topics other medics pussy foot around.
Sometimes I don’t understand the science. My cognition has slipped in the last few yew years and I get mentally drained. However, I always come here for my information.
I asked my Neurologist, only last week, his thoughts were on smouldering MS. He replied, “ oh Gavin is the expert”. He knows I follow this site by my questions to him. He also said that sometimes “MS burns itself out” maybe we can plateau for a while, then, how will we know if it will ramp up again ?
I’m fortunate to have good care, when I do get an appointment. However, it’s only time for pressing questions.
I still really enjoy the platform. I’m not familiar with anyone who does as thorough of job as this MS Selfie site. Could you cover low blood pressure in MS more? What might that mean going forward and best ways to go about dealing with it. Another interesting thing to cover would be about establishing baseline disability in more ways than just physical tests. Why might you want to do so and what would be recommended. Also, I recently heard how exercise once a day isn’t really good enough if you’re sitting for most of the rest of the day. Have there been any studies looking into more frequent low intensity exercise in MS? Maybe some nerding out topics that explain the blood brain barrier and how the CNS immune system differs from the rest of the body just for fun. Something I was always curious about. Either way, appreciate what you’ve done for the community and congrats on the OHAND study. Thanks!
If you are looking to do more guests on the platforms, it would be cool to bring in other specialists to discuss why you may want to treat some of your MS symptoms and what that might look like with current treatments. I haven’t seen that, it’s asking a lot though.
I find MS-SELFIE extremely helpful and with which my knowledge of MS is being improved. Maybe as part of the evolving process it can include a focus on the family and social aspects of the disease
Im intrigued by the role General Practice is meant to play. I am literally told 'that's the hospitals role' or 'we're not funded for that' ALL THE TIME.
I so appreciate your column. The clarity and detail you provide about the science related to the treatment of MS is exceptional, and I do not think it’s replicated in other sites. As the science and medical treatments evolve, especially around issues related to progression and remyelination, I am especially interested in your perspective. I appreciate the question and answers, the case studies, the incredibly detailed and clear analysis of recent research – really all of it – even the parts that do not apply to me directly. If you are able and have the energy to continue, I hope you will. With gratitude…
I have always enjoyed your approach to MS, your willingness to explore ideas that are well out of the mainstream. Mainstream MS research always seems to focus on looking for drugs that treat the symptoms rather than look for the cause. Your columns have always impressed me because they look for the cause (surely EBV) and ask bold questions that others don’t – Is MS a dementia? Similarities between MS and leprosy . Also you are open minded enough to look at treatments like HBOT that get ignored. All I would say is please continue to look in places that others don’t or won’t look. Sadly there are very few neurologists who are prepared to be as open minded as you. Continue to be bold. We need you.
I would like more deep, medical, and difficult material on MS which might take serious specialist skills to understand . I want this blog to be something where if someone dedicate studies it for 5+ years, they are as good as an above average MS specialist if they are really interested and dedicated to learn. The simplified stuff is great, but I want to be at the forefront of MS research if I can. someone in my family as MS and I want to be super informed as much as a doctor would.
I can usually get quite far in my research by finding the sources Prof G references along with his higher level summaries of current research, but the more the better (in an ideal world! Prof Giovannoni already gives us plenty! :) )
Please keep it coming, always helpful, invaluable resource, Q&A useful. Like the coverage of difficult topics, recently DV, mental health. Maybe more on dealing with/weighing up treatment side effects (I’ve recently become eligible for Siponimod), exercise with progressive disease. I learn a lot from others in the comments too. Feels like a community.
That is a problem I’ve experienced too - there’s so much phenomenal info in here but it’s not always very easy to locate. I don’t know what the solution would look like, but it would be great if it were easier to find things.
I don’t know of any specific platform targeted at MS patients that presents research in enough detail to be helpful to a well informed patient (which most of your readers are!) if there is such a platform in addition to MS Selfie I’d love to know where, but currently I find your site the most useful to me as a MS patient with quite a good grasp of current research avenues, medical concepts relevant to MS and neurological terminology.
The materials provided by the NHS are (for broad ease of access to all patients) too simplistic to properly educated an informed reader. I really appreciate what you do for us here.
Agreed with Foreigner, here. Many of us want to discuss science with a scientist on top of MS research. You are a top researcher, you are also a health practitioner who has diagnosed and treated many. You are also challenging the current state of just drugs directed to reducing the rate of relapses, not targeting PIRA...
I suggest you keep updating us on every new scientific publication that is relevant for pw, and we keep asking updated questions ;).
For example, what is the current state for BTK? What is the most recent info?
I’ve also been reading a lot about frex lately. I am curious how you see frex vs btk used in practice in the next few years. When might someone switch toward one vs the other?
None of the other platforms challenge their readership with real life case studies on treatment selection. The more choice there is, the more valuable this becomes.
Gavin.
I don't find your selfie repetitive and I cannot find any information either online or through neurologists which compares to the information you supply. So please continue as you are if you have the energy! Thank you,
I really like reading about the latest research for types of MS issues, whether they are applicable to my situation or not. I am no longer on a DMT, but I am sure those who are really like the research and your feedback on DMT's. I really enjoy the question and answer posts. Reading your posts helps me to feel up-to-date and also gives me a sense of community.
Agree with others that this is a unique and truly helpful platform. Please continue. Working through recurring issues that many of us have but are under acknowledged is particularly good. For example, I deal with chronic foot pain, and many others do too. Yet my treating neurologist dismisses this since the lesions aren’t in the place she’d expect to have that effect. It’s great how you always take questions very seriously and dig deep - many of us would love to have a neurologist who did the same.
Think people with MS want to have hope, and talk more about real reymylinating therapies. When is this going to come out? When will we start being able to take it? When are we to potentially have some repair?
It would be great to hear your opinion, or any research information there may be, in regards to the links between menopause symptoms & progressive MS. symptoms.
Navigating both together is a mine field. It's hard not to assume things are just the progressive MS playing its games, (whilst also taking HRT for its bone health benefits etc.).
Yet, it makes it difficult fo know if anything should be raised wit MS team.
I second this. Looking at hormones, and the role they play would be incredibly useful. I was diagnosed in 2014 when I was 43, but had probably had MS for a long time, at least since my 20s. I believe the onset of perimenopause led to the relapse which triggered my diagnosis. I survived a breast cancer diagnosis 5 years later, and have been struggling ever since to get some support. I then had a full hysterectomy 2 years ago (ovaries and all) due to some precancerous cells on biopsy. Earlier this year at last I had a telephone appointment with a menopause specialist, and have a short term HRT prescription. I am currently trying to balance the risks with the benefits. In some ways there are too many specialists telling me contradictory things, and I have to work out for myself, be my own expert. My breast surgeon was totally against HRT, my gynae surgeon thinks the Tamoxifen I was put on after the breast cancer caused the uterus problems, which were luckily caught early, my GP despite being the person who knows me and my history the best was unable to give me HRT, my neurologist just agreed that pwMS have a worse menopause than others, but could offer me nothing. And menopause specialists are like gold dust! My review appointment was cancelled and I’m still waiting for this follow up. I work hard at being well, I eat very healthily, don’t smoke, hardly ever drink alcohol, do plenty of exercise. These of course would also be risks of breast cancer and yet no one says someone who smokes and drinks can’t have HRT!
I think you ought not worry about having to post as often, if you think you’re repeating yourself. Mainly, I believe we subscribe for the quality and honesty. You don’t shy away from topics other medics pussy foot around.
Sometimes I don’t understand the science. My cognition has slipped in the last few yew years and I get mentally drained. However, I always come here for my information.
I asked my Neurologist, only last week, his thoughts were on smouldering MS. He replied, “ oh Gavin is the expert”. He knows I follow this site by my questions to him. He also said that sometimes “MS burns itself out” maybe we can plateau for a while, then, how will we know if it will ramp up again ?
I’m fortunate to have good care, when I do get an appointment. However, it’s only time for pressing questions.
I still really enjoy the platform. I’m not familiar with anyone who does as thorough of job as this MS Selfie site. Could you cover low blood pressure in MS more? What might that mean going forward and best ways to go about dealing with it. Another interesting thing to cover would be about establishing baseline disability in more ways than just physical tests. Why might you want to do so and what would be recommended. Also, I recently heard how exercise once a day isn’t really good enough if you’re sitting for most of the rest of the day. Have there been any studies looking into more frequent low intensity exercise in MS? Maybe some nerding out topics that explain the blood brain barrier and how the CNS immune system differs from the rest of the body just for fun. Something I was always curious about. Either way, appreciate what you’ve done for the community and congrats on the OHAND study. Thanks!
So little information about low blood pressure
If you are looking to do more guests on the platforms, it would be cool to bring in other specialists to discuss why you may want to treat some of your MS symptoms and what that might look like with current treatments. I haven’t seen that, it’s asking a lot though.
Yes, more specialists would be great.
I find MS-SELFIE extremely helpful and with which my knowledge of MS is being improved. Maybe as part of the evolving process it can include a focus on the family and social aspects of the disease
Im intrigued by the role General Practice is meant to play. I am literally told 'that's the hospitals role' or 'we're not funded for that' ALL THE TIME.
I so appreciate your column. The clarity and detail you provide about the science related to the treatment of MS is exceptional, and I do not think it’s replicated in other sites. As the science and medical treatments evolve, especially around issues related to progression and remyelination, I am especially interested in your perspective. I appreciate the question and answers, the case studies, the incredibly detailed and clear analysis of recent research – really all of it – even the parts that do not apply to me directly. If you are able and have the energy to continue, I hope you will. With gratitude…
I have always enjoyed your approach to MS, your willingness to explore ideas that are well out of the mainstream. Mainstream MS research always seems to focus on looking for drugs that treat the symptoms rather than look for the cause. Your columns have always impressed me because they look for the cause (surely EBV) and ask bold questions that others don’t – Is MS a dementia? Similarities between MS and leprosy . Also you are open minded enough to look at treatments like HBOT that get ignored. All I would say is please continue to look in places that others don’t or won’t look. Sadly there are very few neurologists who are prepared to be as open minded as you. Continue to be bold. We need you.
I would like more deep, medical, and difficult material on MS which might take serious specialist skills to understand . I want this blog to be something where if someone dedicate studies it for 5+ years, they are as good as an above average MS specialist if they are really interested and dedicated to learn. The simplified stuff is great, but I want to be at the forefront of MS research if I can. someone in my family as MS and I want to be super informed as much as a doctor would.
I can usually get quite far in my research by finding the sources Prof G references along with his higher level summaries of current research, but the more the better (in an ideal world! Prof Giovannoni already gives us plenty! :) )
Please keep it coming, always helpful, invaluable resource, Q&A useful. Like the coverage of difficult topics, recently DV, mental health. Maybe more on dealing with/weighing up treatment side effects (I’ve recently become eligible for Siponimod), exercise with progressive disease. I learn a lot from others in the comments too. Feels like a community.
Hi again, actually my only comment would be that sometimes I find this site hard to navigate and search for past information. Thanks again!
Me too.
That is a problem I’ve experienced too - there’s so much phenomenal info in here but it’s not always very easy to locate. I don’t know what the solution would look like, but it would be great if it were easier to find things.