I am very keen to hear about your experiences in relation to peer-to-peer support. What can we take away from this new and emerging form of healthcare that improves the lives of pwMS?
Prof G. I think your own example and the Desmond/Mathilda scenario express exactly what I think. I have never been a joiner and choose not to be on social media, but that's OK for me, maybe not others. However, the current crisis in this milieu; trolling, badmouthing anonymously, support my position. What HCP would want to be subjected to this? You needed to hired legal help. Another HCP experienced sufficient stress to be off work for several months? Those who choose to attack anonymously on Twitter, Facebook and other platforms, appear to be very destructive and, worryingly, powerful enough to recruit their own constituencies. It's fine for me to eschew these platforms, but I'm well enough and robust enough not to need them. I also find plenty of online support via all the legitimate agencies concerned for pwMS; Barts, the MS Trust and Society and ShiftMS and OMS, though I don't follow the OMS life-style slavishly, reasonable though it is. It is also important to remember that groups can form that are malign despite seeming to be innocent enough initially. In other spheres we have seen the effects of online radicalisation, mysogyny and extreme political views. Their influence evolved subtly and sucked the naive and easily influenced in over time.
So there is a huge amount of bona fide MS advice online. The trick is to sort the wheat from the chaff. It must be tough if someone is lonely and desperate for information. The need to connect is a basic human one. If people are drawn to online groups they need to have positive experiences from them just as they do in face-to-face ones and the digital divide makes that tougher. Face-to-face can cause upsets just the same, but you know who is the problem. In the pandemic we have moved over to our computers, but that excludes the digital have-nots. It is a problem that will divide and upset in equal measure, but that's human nature I suppose .
I have moderated a couple of peer to peer support groups online, including co-hosting an online MS women’s group. I remember the days of CCSVI and the heated exchanges on some forums. I had to keep a tight lid on that particular powder keg in terms of moderating comments on the forum where I was an administrator. In general, I have found most forums to be supportive but I think it depends on good moderators, keeping a close eye on information being exchanged and being quick to intervene and to signpost to evidence based information. I volunteered for 10 years for a Helpline for an MS charity I quickly learned how important accuracy is when supporting others
Thanks for this. Do you think there is a need for a paper version of MS-Selfie to be posted to pwMS without internet access? Maybe an MS-Selfie book? But even then how do we access these people?
How we made it possible not only to practice with the choir but to perform with them too.
Having MS widens your own eyes to the limitations that society places on disability, far more than you place on your self. Suddenly, not, gradually, it dawns on you that you are viewed as trouble, disrupting the normal course of progress in abled people’s lives and must be limited somehow.
You become a fire risk to others, the force of unwanted modernity, the change agent of old buildings, the wrecker of the status quo. Best not to have around, easier and cheaper to restrict access and to move on.
.
This is an extreme version of disability discrimination, but never the less recognisable as a common modus operandi that we come across time and boring time again.
This is my story how we managed to effect change positively to enable me to perform the glorious piece I had been studying for.
I have MS and, as it is a progressive disease, it slowly gets worse over time. The things that you have got used to doing, like singing in a choir, become a difficulty. Not the singing, or participation in groups; you simply just can’t climb the stairs to the choir stalls, in old buildings - which in my case happens to be a major city venue, much loved by the community.
I belong to a city choir and have done for many years, singing wonderful choral works. I just love the process of learning new works, getting to know every single note, being amongst likeminded people and finally the joy and excitement of performing the piece to a fee paying audience. It is a heart warming experience, leaving you elated, a sense of shared purpose and a job well done. Quite a lot to give up or have the opportunity to take part if it something you want to do.
Long story short, unable to climb the stairs anymore I was getting people with muscle to help me. This we managed to do a few times with more and more help. Finally I had to resort to being carried up the stairs to where I sat and stayed till the whole performance finished. Then I was carried down again.
A tad humiliating but worth it for the elation of performing with such talented people, even when I was the only person left on the stage during the interval.
Much to my shock I was suddenly told not to perform as I was a fire hazard to the other choir members, impeding the fast exit of people in a burning building.
Fast forward to letter writing, one to choir expressing my disappointment, this to-ed and fro-ed, trying to shift the blame where it could sit. Nothing could be solved locally so we wrote to the city MP asking for help.
This is when the turning point happened. It was quickly established that the university was responsible for providing the structure to enable me to participate. This led me and others to wonder if it was worth it, whether I was worth it.
Fortunately it was taken out of my hands to weigh the tricky ‘worth it’ conundrum. Thanks to my MP’s intervention, and the Equal Opportunities Act, an evacuation chair was bought, a team of muscly volunteers were easily found, and a plan quickly formulated, training given and I was safely taken on, performed sitting down as before and taken off again. On to scooter and home again. Job done and everybody survived to see another day. No animals were harmed either ….hallelujah.
Conclusion! There is almost always a solution around problem like these. The choir members and the venue staff worked seamlessly together and provided a a great solution, without causing loss of face, blaming and shaming and got the job done. This of course was not only for the likes of me but for anybody who would like to join in, but their disability precludes them in tricky situations.
We have come along way in getting good disabled access, as required by legislation. New builds and conversions mostly all provide great facilities; old buildings in medieval cities there are bound to present problems - but problems almost always have solutions, and this taught us all that a solution can often be easily found - if there is the will to search.
What a marvellous story! Evacuation chair - who knew! Another brick in the edifice of inclusion by default. In other words, where accommodation and integration are the first order of business, not an afterthought; where they are basic principles in design, not add-ons.
Even in retrofitting, when care is taken to anticipate needs, solutions will be incorporated before problems even arise. And when they do arise, the first impulse will be to solve them, not to erase them by means of exclusion.
I agree , you have the net at your disposal , or you dont . I too went to
Poland for CSSVI, at great expense, and no guessing it was. A nice holiday, caring staff and lovely food , but nothing else. Of course it didn’t work, was never going to work, but this was before I was IT savvy.
I felt quite honestly I had nothing to loose, I had never met anybody who was proactive, and felt after seeing my neuro that I should go home ,settle down with a bowl of buttons as there was nothing, nothing that could help in any way.
How times have changed, thanks to peer to peer support, social media and selfies such as yours. I really think your professional approach, you amazing knowledge, your incredible experience just to mention a few attributes , has been a real game changer for the MS Community. I also believe you have really positively influenced how the importance of swift treatment, and non discriminatory treatment is being given by other HPC s .
When I was diagnosed 9 years ago I joined a few forums but found most of them depressing as many people used them to vent their frustration and/or depression. I then found Dom Thorpe (MS) online fitness and motivation, and it's been a fabulous support network ever since. A couple of people are even Facebook friends after a few years. It concentrates on the positive achievements no matter how small.. DOM also has weekly on-line Q and A . I know it's about exercise but so helpful. If I want advice on other stuff I use the MS society forum.
Prof G., your Newsletters are superb and I pass them on to the over 100 members I have in my MS Group here in the New Forest . They are much appreciated . I know from having followed you and the 'Mouse Doctor' for years you have had some very tough times, and I am so glad your resilience has allowed you to continue.
I also pass these Newsletters on to the carers' groups I have across my county of Hampshire, they are for working age men who have a partner with MS. Begun 12 years ago when it was fashionable for carers to be largely ignored - this is not the case as much now! I have monthly meetings in a pub, with a meal ( often the only one they have not cooked themselves and possibly fed to their partners) and these groups have flourished as the men have a chance to talk, swap information and advice , off load and share very personal feelings with others who are in a very similar situation and 'get' it totally. The conversations may be very emotional and difficult sometimes, but the overarching feeling is of peer support and empathy and positivity coming out of it . During Covid times we zoomed , but thankfully we are face to face once more . My experience of these groups and those I run as part of the MS Society are that there is nothing as helpful as peer support, if it is done with a willingness to be positive and not as a moan - fest.
Dr Giavannoni, thank you… that is a very well written and thoughtful post. You covered many issues that are liable to come up, as you noted that a simple Q&A on P2P is not so straightforward with medical issues.
I do have positive feedback about P2P use, but I think the negative aspects are more exigent right now—especially with current events in the world. I grew up with computers and the networks involved (the internet being the largest currently), and there have always been elements of danger and mischief. It has since expanded widely as the internet is ubiquitous and available 24/7 in almost any area and environment, and that danger and mischief has grown as well. I think that easy access, as well as the inherent anonymity ascribed, present the biggest hurdle when related to P2P medical advice and knowledge gathering. There is a big 'but' in there too… lack of critical thinking. Just the ubiquity and anonymity should be dicey enough to make anyone uncomfortable enough to tread carefully, but nope. And some of the people espousing the information with authority are cause for alarm, and a vital need for fundamental knowledge of what is or could be total BS. A good example is the anti-vax movement that has grown up here in the US and exported everywhere—sincere apologies for that. Not only the unscientific and anti-science information and vitriol are corroding essential relationships and trust, but even educated and licensed doctors are jumping on the lunatic bandwagon. (https://www.google.com/amp/s/thehill.com/homenews/529082-doctor-who-questioned-federal-vaccine-mandates-invited-to-senate-hearing-on%3famp)
So along with other things that could be done to mitigate most issues, there needs to be a revolution in critical thinking, which currently seems to be absent in the universe, or just society in general. Also I do personally have a lot experience with this unfortunately, but fortunate for this thread… maybe.
Several years ago I decided to only read or listen to the news I pay for, which is why I spend a lot on subscriptions? One reason is to support journalism as a profession but also ensures I get my information from a reputable source. There is no such thing as a free lunch; all the free content that is available online is being paid for by advertising or by someone who has an agenda. So please be extra sceptical when you are reading free content; ask who is paying for the production of the content and why?
Thank you sir. Yes, I try to be very careful with all information, and go to very reliable sources to get clarification and to check validity—I am lucky to know professors at the university level here in California in the US as my mother used to work for the biological sciences department at the University of California in Irvine, and I am painfully aware that not everyone has access to such resources unfortunately. But it’s vitally important to make resources available that are fully upfront about their associations, backers, and their mission. There should be pages with lists of all the people involved, and their contact information, or at least a general contact manager. And critical thinking skills should definitely be part of scholastic curriculum of computer and online education. Maybe an adjunct to all the P2Ps could be a few pages of information on critical thinking and vetting of information, or links
I have found the groups to be very helpful. The support there has given me information it might have taken me a while to find. I have then been able to go on and do further research. I actually found this newsletter thanks to a group! And I often pass the information along. Of course, any network can be bad or not a good fit, I would recommend removing yourself when it’s unhealthy or unhelpful for you. I actually believe a lot of information from these types of groups help to reduce suffering.
Thank you Prof G, a bit of an eye opener with regards to the ‘cons’ of social media. I’m shocked to learn the problems you have had & how info & ‘dr google’ has & can have such a negative impact! I realised facebook was a great gift for families & friends, distance & hols snaps - but the ‘fake lives’ they projected were & are have such an impact on folk. The pics of everyone always having fun showed a great way of life - but for the young, who weren’t invited or felt their lives were relatively boring etc! Although, I know lots of people use it wisely & have lots of great business/professional & friends & family, but the use of our data & how the site can show this ‘fake news/life’ to be educated in the beginning, would be a good thing. I feel the MS Society UK, Shift MS & MS Trust are all well organised & extremely informative & they have helped me in the past. I also feel, access to your MS-Selfie Newsletter & Twitter to keep up to date with everything & understand the current COVID-19 situations - have been a life-line. We need somewhere to be honest, accurate & P2P support can be a way to bridge the gap until we get to speak to a HCP or GP. The problems we also face as pwMs is that we start to understand our disease & feel frustrated when the HCP/GP isn’t so well informed! We need to share our frustrations - as why should a patient’s experience, negative or positive not be important and understood. We won’t move forward with our understanding, support and ever increasing talking about the disease, if we are not allowed to share the ‘good with the bad!’ Obviously in a way that is professional and caring. P2P is great for interim or light hearted groups & or therapy discussions. It’s an extra layer of support & can run alongside the professional advice. We can all learn from each other of course & there are a lot of people who are not receiving the support they need or want atm. As I always keep say, a multi-disciplinary team of well informed HCPs is what is needed. To help run support groups online & in person. Why is mental health so very much neglected when it comes to MS & other neuro diseases. Why are medications not regularly checked to see how a patient is performing on them or whether the side effects are causing more harm! These areas need to be addressed & you can’t do this with P2P support . It would stop a lot of depression getting worse, people would feel valued & their worries & concerns wouldn’t need to go to social media to help them. Re-organised & re-think & lastly remember - a patient who is remembered & respected online or part of a support network in persons, will feel better, even if it is to ask about their feet & helping them set-up an podiatrist appointment :) We need both - but navigate carefully & stick to the more known & properly set up sites. There are apps you can use the give advice & support too! They are moderated & kept up to date with facts & info, they also offer a helpline number (usually free) too!
Social media has a number of now very obvious failure modes (cf. anti vaxxers for one) and between the 'no drugs cure yourself with food'-crazies, HSCT-zealots and all-around negative people, I mostly stay away from P2P. Give me the science, spare me the rest.
In fairness, I am privileged to be in a health system with exceptional access to doctors which I guess helps that approach.
Actually the other thing I found useful was the living well with MS group I attended at my hospital. Although it was only four weeks long some of us kept in touch afterwards - even though one of us turned out not to have MS after all!
I have unfollowed all of the Facebook MS groups I'm in! I found the Tecfidera group too negative ("did all your hair fall out? All my hair fell out" etc) and the Overcoming MS group a bit too heavily moderated and a bit extreme ("oh no I don't have dried fruit because it's impossible to find any that don't have oil").
But I've found Shift MS to be a welcoming, helpful platform. Their buddy system is particularly good I think, although life is too busy for me to volunteer for it right now.
Absolutely essential and life saving for RLS. RLS is serious, yet isn't taught on the medical curriculum in the UK so GPs and neurologists know very little. RLS UK help forum on Health Unlocked is superb. The members have so much knowledge. Most have had to research widely because their doctors have not known anything about the disease.
Dopamine agonists are a ticking time bomb with over prescription leading to ICD and augmentation. Withdrawal from DAs is hellish- yet doctors leave elderly patients to get on with it alone and without support.
I would advise any doctor to spend a few hours reading RLS-UK website and the help forum and they'd learn more in those hours than during their entire medical career.
Do you mean restless leg syndrome? I am desperate for some relief from this, keeps me up most nights, and now it’s started in the day! I’ve been prescribed gabapentin and baclofen…. Don’t really touch it🙈
Personally I find peer to peer support on the MS sub reddit and to a lesser degree Facebook pages ( I have shared links from this blog many times).
It can be very helpful for validating and giving names to symptoms, other pwMS can give helpful suggestions as to what might help, what has worked for them, even naming drugs that you can suggest to your own health care provider and explore potential that they might help you. There is also lots of good moral support and humour. It is a good information sharing platform.
However, right now I have unfollowed the sub Reddit and deactivated my Facebook, I find this is essential every now and again for my own wellbeing, other people’s reality is not yours, when you see a child or a spouse come on to seek support about their parent / partner with MS, or to tell the group that their parent with MS has ended their life by suicide it can be hard to take, when you read time and again about health inequalities and different approaches to MS treatment it can be frustrating. I think with tighter parameters around peer support it could work.
Nellie, have you ever considered inviting an HCP to one of your groups? However, I suspect this will change the dynamic and the raison d'etre of what you are trying to do.
We established our peer support service as a response to the pandemic and have seen just how valuable this has become for those joining us each week. The feedback we have received has demonstrated how much support, guidance and shared experience can be offered between others online. There are potential pitfalls, but the positives far outweigh the negatives and those who join us use it as an opportunity to share experiences and learn from one another. To find out more please visit the website https://www.ms-uk.org/peer-support-service or contact us at peersupport@ms-uk.org.
Prof G. I think your own example and the Desmond/Mathilda scenario express exactly what I think. I have never been a joiner and choose not to be on social media, but that's OK for me, maybe not others. However, the current crisis in this milieu; trolling, badmouthing anonymously, support my position. What HCP would want to be subjected to this? You needed to hired legal help. Another HCP experienced sufficient stress to be off work for several months? Those who choose to attack anonymously on Twitter, Facebook and other platforms, appear to be very destructive and, worryingly, powerful enough to recruit their own constituencies. It's fine for me to eschew these platforms, but I'm well enough and robust enough not to need them. I also find plenty of online support via all the legitimate agencies concerned for pwMS; Barts, the MS Trust and Society and ShiftMS and OMS, though I don't follow the OMS life-style slavishly, reasonable though it is. It is also important to remember that groups can form that are malign despite seeming to be innocent enough initially. In other spheres we have seen the effects of online radicalisation, mysogyny and extreme political views. Their influence evolved subtly and sucked the naive and easily influenced in over time.
So there is a huge amount of bona fide MS advice online. The trick is to sort the wheat from the chaff. It must be tough if someone is lonely and desperate for information. The need to connect is a basic human one. If people are drawn to online groups they need to have positive experiences from them just as they do in face-to-face ones and the digital divide makes that tougher. Face-to-face can cause upsets just the same, but you know who is the problem. In the pandemic we have moved over to our computers, but that excludes the digital have-nots. It is a problem that will divide and upset in equal measure, but that's human nature I suppose .
I have moderated a couple of peer to peer support groups online, including co-hosting an online MS women’s group. I remember the days of CCSVI and the heated exchanges on some forums. I had to keep a tight lid on that particular powder keg in terms of moderating comments on the forum where I was an administrator. In general, I have found most forums to be supportive but I think it depends on good moderators, keeping a close eye on information being exchanged and being quick to intervene and to signpost to evidence based information. I volunteered for 10 years for a Helpline for an MS charity I quickly learned how important accuracy is when supporting others
Thanks for this. Do you think there is a need for a paper version of MS-Selfie to be posted to pwMS without internet access? Maybe an MS-Selfie book? But even then how do we access these people?
Just thought I would share my latest P2P post.
Singing in the choir.
How we made it possible not only to practice with the choir but to perform with them too.
Having MS widens your own eyes to the limitations that society places on disability, far more than you place on your self. Suddenly, not, gradually, it dawns on you that you are viewed as trouble, disrupting the normal course of progress in abled people’s lives and must be limited somehow.
You become a fire risk to others, the force of unwanted modernity, the change agent of old buildings, the wrecker of the status quo. Best not to have around, easier and cheaper to restrict access and to move on.
.
This is an extreme version of disability discrimination, but never the less recognisable as a common modus operandi that we come across time and boring time again.
This is my story how we managed to effect change positively to enable me to perform the glorious piece I had been studying for.
I have MS and, as it is a progressive disease, it slowly gets worse over time. The things that you have got used to doing, like singing in a choir, become a difficulty. Not the singing, or participation in groups; you simply just can’t climb the stairs to the choir stalls, in old buildings - which in my case happens to be a major city venue, much loved by the community.
I belong to a city choir and have done for many years, singing wonderful choral works. I just love the process of learning new works, getting to know every single note, being amongst likeminded people and finally the joy and excitement of performing the piece to a fee paying audience. It is a heart warming experience, leaving you elated, a sense of shared purpose and a job well done. Quite a lot to give up or have the opportunity to take part if it something you want to do.
Long story short, unable to climb the stairs anymore I was getting people with muscle to help me. This we managed to do a few times with more and more help. Finally I had to resort to being carried up the stairs to where I sat and stayed till the whole performance finished. Then I was carried down again.
A tad humiliating but worth it for the elation of performing with such talented people, even when I was the only person left on the stage during the interval.
Much to my shock I was suddenly told not to perform as I was a fire hazard to the other choir members, impeding the fast exit of people in a burning building.
Fast forward to letter writing, one to choir expressing my disappointment, this to-ed and fro-ed, trying to shift the blame where it could sit. Nothing could be solved locally so we wrote to the city MP asking for help.
This is when the turning point happened. It was quickly established that the university was responsible for providing the structure to enable me to participate. This led me and others to wonder if it was worth it, whether I was worth it.
Fortunately it was taken out of my hands to weigh the tricky ‘worth it’ conundrum. Thanks to my MP’s intervention, and the Equal Opportunities Act, an evacuation chair was bought, a team of muscly volunteers were easily found, and a plan quickly formulated, training given and I was safely taken on, performed sitting down as before and taken off again. On to scooter and home again. Job done and everybody survived to see another day. No animals were harmed either ….hallelujah.
Conclusion! There is almost always a solution around problem like these. The choir members and the venue staff worked seamlessly together and provided a a great solution, without causing loss of face, blaming and shaming and got the job done. This of course was not only for the likes of me but for anybody who would like to join in, but their disability precludes them in tricky situations.
We have come along way in getting good disabled access, as required by legislation. New builds and conversions mostly all provide great facilities; old buildings in medieval cities there are bound to present problems - but problems almost always have solutions, and this taught us all that a solution can often be easily found - if there is the will to search.
What a marvellous story! Evacuation chair - who knew! Another brick in the edifice of inclusion by default. In other words, where accommodation and integration are the first order of business, not an afterthought; where they are basic principles in design, not add-ons.
Even in retrofitting, when care is taken to anticipate needs, solutions will be incorporated before problems even arise. And when they do arise, the first impulse will be to solve them, not to erase them by means of exclusion.
Thanks so much for sharing your experience.
I agree , you have the net at your disposal , or you dont . I too went to
Poland for CSSVI, at great expense, and no guessing it was. A nice holiday, caring staff and lovely food , but nothing else. Of course it didn’t work, was never going to work, but this was before I was IT savvy.
I felt quite honestly I had nothing to loose, I had never met anybody who was proactive, and felt after seeing my neuro that I should go home ,settle down with a bowl of buttons as there was nothing, nothing that could help in any way.
How times have changed, thanks to peer to peer support, social media and selfies such as yours. I really think your professional approach, you amazing knowledge, your incredible experience just to mention a few attributes , has been a real game changer for the MS Community. I also believe you have really positively influenced how the importance of swift treatment, and non discriminatory treatment is being given by other HPC s .
What more can I say! Nobel prize ?
Thank you, but Nobel prizes are given for scientific discovery not writing Newsletters.
Your newsletter is like a scientific discovery to me, every time I read it. You would have my vote.
When I was diagnosed 9 years ago I joined a few forums but found most of them depressing as many people used them to vent their frustration and/or depression. I then found Dom Thorpe (MS) online fitness and motivation, and it's been a fabulous support network ever since. A couple of people are even Facebook friends after a few years. It concentrates on the positive achievements no matter how small.. DOM also has weekly on-line Q and A . I know it's about exercise but so helpful. If I want advice on other stuff I use the MS society forum.
Prof G., your Newsletters are superb and I pass them on to the over 100 members I have in my MS Group here in the New Forest . They are much appreciated . I know from having followed you and the 'Mouse Doctor' for years you have had some very tough times, and I am so glad your resilience has allowed you to continue.
I also pass these Newsletters on to the carers' groups I have across my county of Hampshire, they are for working age men who have a partner with MS. Begun 12 years ago when it was fashionable for carers to be largely ignored - this is not the case as much now! I have monthly meetings in a pub, with a meal ( often the only one they have not cooked themselves and possibly fed to their partners) and these groups have flourished as the men have a chance to talk, swap information and advice , off load and share very personal feelings with others who are in a very similar situation and 'get' it totally. The conversations may be very emotional and difficult sometimes, but the overarching feeling is of peer support and empathy and positivity coming out of it . During Covid times we zoomed , but thankfully we are face to face once more . My experience of these groups and those I run as part of the MS Society are that there is nothing as helpful as peer support, if it is done with a willingness to be positive and not as a moan - fest.
Dr Giavannoni, thank you… that is a very well written and thoughtful post. You covered many issues that are liable to come up, as you noted that a simple Q&A on P2P is not so straightforward with medical issues.
I do have positive feedback about P2P use, but I think the negative aspects are more exigent right now—especially with current events in the world. I grew up with computers and the networks involved (the internet being the largest currently), and there have always been elements of danger and mischief. It has since expanded widely as the internet is ubiquitous and available 24/7 in almost any area and environment, and that danger and mischief has grown as well. I think that easy access, as well as the inherent anonymity ascribed, present the biggest hurdle when related to P2P medical advice and knowledge gathering. There is a big 'but' in there too… lack of critical thinking. Just the ubiquity and anonymity should be dicey enough to make anyone uncomfortable enough to tread carefully, but nope. And some of the people espousing the information with authority are cause for alarm, and a vital need for fundamental knowledge of what is or could be total BS. A good example is the anti-vax movement that has grown up here in the US and exported everywhere—sincere apologies for that. Not only the unscientific and anti-science information and vitriol are corroding essential relationships and trust, but even educated and licensed doctors are jumping on the lunatic bandwagon. (https://www.google.com/amp/s/thehill.com/homenews/529082-doctor-who-questioned-federal-vaccine-mandates-invited-to-senate-hearing-on%3famp)
So along with other things that could be done to mitigate most issues, there needs to be a revolution in critical thinking, which currently seems to be absent in the universe, or just society in general. Also I do personally have a lot experience with this unfortunately, but fortunate for this thread… maybe.
What can I say? I agree with you.
Several years ago I decided to only read or listen to the news I pay for, which is why I spend a lot on subscriptions? One reason is to support journalism as a profession but also ensures I get my information from a reputable source. There is no such thing as a free lunch; all the free content that is available online is being paid for by advertising or by someone who has an agenda. So please be extra sceptical when you are reading free content; ask who is paying for the production of the content and why?
Thank you sir. Yes, I try to be very careful with all information, and go to very reliable sources to get clarification and to check validity—I am lucky to know professors at the university level here in California in the US as my mother used to work for the biological sciences department at the University of California in Irvine, and I am painfully aware that not everyone has access to such resources unfortunately. But it’s vitally important to make resources available that are fully upfront about their associations, backers, and their mission. There should be pages with lists of all the people involved, and their contact information, or at least a general contact manager. And critical thinking skills should definitely be part of scholastic curriculum of computer and online education. Maybe an adjunct to all the P2Ps could be a few pages of information on critical thinking and vetting of information, or links
I have found the groups to be very helpful. The support there has given me information it might have taken me a while to find. I have then been able to go on and do further research. I actually found this newsletter thanks to a group! And I often pass the information along. Of course, any network can be bad or not a good fit, I would recommend removing yourself when it’s unhealthy or unhelpful for you. I actually believe a lot of information from these types of groups help to reduce suffering.
Thank you Prof G, a bit of an eye opener with regards to the ‘cons’ of social media. I’m shocked to learn the problems you have had & how info & ‘dr google’ has & can have such a negative impact! I realised facebook was a great gift for families & friends, distance & hols snaps - but the ‘fake lives’ they projected were & are have such an impact on folk. The pics of everyone always having fun showed a great way of life - but for the young, who weren’t invited or felt their lives were relatively boring etc! Although, I know lots of people use it wisely & have lots of great business/professional & friends & family, but the use of our data & how the site can show this ‘fake news/life’ to be educated in the beginning, would be a good thing. I feel the MS Society UK, Shift MS & MS Trust are all well organised & extremely informative & they have helped me in the past. I also feel, access to your MS-Selfie Newsletter & Twitter to keep up to date with everything & understand the current COVID-19 situations - have been a life-line. We need somewhere to be honest, accurate & P2P support can be a way to bridge the gap until we get to speak to a HCP or GP. The problems we also face as pwMs is that we start to understand our disease & feel frustrated when the HCP/GP isn’t so well informed! We need to share our frustrations - as why should a patient’s experience, negative or positive not be important and understood. We won’t move forward with our understanding, support and ever increasing talking about the disease, if we are not allowed to share the ‘good with the bad!’ Obviously in a way that is professional and caring. P2P is great for interim or light hearted groups & or therapy discussions. It’s an extra layer of support & can run alongside the professional advice. We can all learn from each other of course & there are a lot of people who are not receiving the support they need or want atm. As I always keep say, a multi-disciplinary team of well informed HCPs is what is needed. To help run support groups online & in person. Why is mental health so very much neglected when it comes to MS & other neuro diseases. Why are medications not regularly checked to see how a patient is performing on them or whether the side effects are causing more harm! These areas need to be addressed & you can’t do this with P2P support . It would stop a lot of depression getting worse, people would feel valued & their worries & concerns wouldn’t need to go to social media to help them. Re-organised & re-think & lastly remember - a patient who is remembered & respected online or part of a support network in persons, will feel better, even if it is to ask about their feet & helping them set-up an podiatrist appointment :) We need both - but navigate carefully & stick to the more known & properly set up sites. There are apps you can use the give advice & support too! They are moderated & kept up to date with facts & info, they also offer a helpline number (usually free) too!
Social media has a number of now very obvious failure modes (cf. anti vaxxers for one) and between the 'no drugs cure yourself with food'-crazies, HSCT-zealots and all-around negative people, I mostly stay away from P2P. Give me the science, spare me the rest.
In fairness, I am privileged to be in a health system with exceptional access to doctors which I guess helps that approach.
Actually the other thing I found useful was the living well with MS group I attended at my hospital. Although it was only four weeks long some of us kept in touch afterwards - even though one of us turned out not to have MS after all!
I have unfollowed all of the Facebook MS groups I'm in! I found the Tecfidera group too negative ("did all your hair fall out? All my hair fell out" etc) and the Overcoming MS group a bit too heavily moderated and a bit extreme ("oh no I don't have dried fruit because it's impossible to find any that don't have oil").
But I've found Shift MS to be a welcoming, helpful platform. Their buddy system is particularly good I think, although life is too busy for me to volunteer for it right now.
Absolutely essential and life saving for RLS. RLS is serious, yet isn't taught on the medical curriculum in the UK so GPs and neurologists know very little. RLS UK help forum on Health Unlocked is superb. The members have so much knowledge. Most have had to research widely because their doctors have not known anything about the disease.
Dopamine agonists are a ticking time bomb with over prescription leading to ICD and augmentation. Withdrawal from DAs is hellish- yet doctors leave elderly patients to get on with it alone and without support.
I would advise any doctor to spend a few hours reading RLS-UK website and the help forum and they'd learn more in those hours than during their entire medical career.
Getting off my soap box now...
Do you mean restless leg syndrome? I am desperate for some relief from this, keeps me up most nights, and now it’s started in the day! I’ve been prescribed gabapentin and baclofen…. Don’t really touch it🙈
Yes. Definitely join the forum on Health Unlocked. You will find all the latest up to date info on treatments and research
Personally I find peer to peer support on the MS sub reddit and to a lesser degree Facebook pages ( I have shared links from this blog many times).
It can be very helpful for validating and giving names to symptoms, other pwMS can give helpful suggestions as to what might help, what has worked for them, even naming drugs that you can suggest to your own health care provider and explore potential that they might help you. There is also lots of good moral support and humour. It is a good information sharing platform.
However, right now I have unfollowed the sub Reddit and deactivated my Facebook, I find this is essential every now and again for my own wellbeing, other people’s reality is not yours, when you see a child or a spouse come on to seek support about their parent / partner with MS, or to tell the group that their parent with MS has ended their life by suicide it can be hard to take, when you read time and again about health inequalities and different approaches to MS treatment it can be frustrating. I think with tighter parameters around peer support it could work.
Nellie, have you ever considered inviting an HCP to one of your groups? However, I suspect this will change the dynamic and the raison d'etre of what you are trying to do.
We established our peer support service as a response to the pandemic and have seen just how valuable this has become for those joining us each week. The feedback we have received has demonstrated how much support, guidance and shared experience can be offered between others online. There are potential pitfalls, but the positives far outweigh the negatives and those who join us use it as an opportunity to share experiences and learn from one another. To find out more please visit the website https://www.ms-uk.org/peer-support-service or contact us at peersupport@ms-uk.org.
Another one is Health Unlocked. They have all different groups of people there but there is a great group of pwMS there that is loving and supportive.