Welcoem to posts!!
in the future - u will be able to do some more stuff here,,,!! like pat catgirl- i mean um yeah... for now u can only see others's posts :c
ECTRIMS Patient Community Day
ECTRIMS Patient Community Day is taking place on Friday 20 September 2024 – an online and onsite event hosted by the European Committee for Treatment and Research in Multiple Sclerosis and supported by MS-Selfie – is your opportunity to join a global gathering of education and support, and learn about the latest advancements directly impacting your ongoing care and treatment options.
Date: Friday 20 September 2024
Time: 14:00-17:00 BST
Location: Bella Centre Copenhagen, Denmark, and Online
This event is FREE to attend. Pre-registration is required, so be sure to secure your spot in advance.
SIGN UP TODAY - ectrims.eu/ectrims2024-patient-community-day/
What Awaits You
Empowering Insights: A roundtable panel of international experts will simplify complex research and share knowledge that matters most to you.
Engaging Q&A: Pose your questions to leading neurological experts and receive insightful answers about the latest research shaping the MS landscape.
Multilingual Experience: The event will be held in English, with AI-powered simultaneous translations in 50+ languages.
Ask Questions
Do you have a question about your MS diagnosis that you would like to ask our panel of MS experts? Submit them with this easy-to-use web form and during the event they’ll do their best to address them.
SEND IN YOUR QUESTION - ectrims.eu/ectrims2024-patient-community-day/ask-t…
Invite Others to Join with #ECTRIMS4me
Help us spread the word about ECTRIMS Patient Community Day using the #ECTRIMS4me campaign. Visit the socialise and share webpage to reach out to your community and invite others to participate in this inclusive event.
POST YOUR SUPPORT - ectrims.eu/ectrims2024-patient-community-day/ask-t…
Why This Event Matters
ECTRIMS understands the impact of MS and related neurological conditions on your lives. This event is a result of its commitment to share the ground-breaking research unveiled during its annual congress with the community that matters the most – YOU.
Proudly Supporting
theMSguide.com is supporting this event because I passionately believe that such collaborations provide us with an invaluable opportunity to push the boundaries of our knowledge and forge a stronger, more resilient path of collective support and well-being.
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An article I posted on LinkedIn
Or... Why Aren't MS Patients Worth It?
Recently, I was sent a genetic test that won much acclaim at ECTRIMS 2023. The test is simple, fast, and unequivocal.
Why is it important? As one of the 2.5 million plus Multiple Sclerosis (MS) patients in the world, it tells me something simple but incredibly valuable: Am I at greater risk than most patients on immunosuppressants in developing Progressive Multifocal Leukoencephalopathy (PML)? This risk affects everyone on a monoclonal antibody but especially if you take natalizumab/natalizumab-sztn (Tysabri/Tyruko).
The test tells me whether I have one of the four gene variants that mean my risk of developing PML is 10x more than normal, and PML is a terrifying brain infection with a low survivability rate (30-50% mortality). Even if you do survive you are left with varying degrees of irreversible permanent brain damage.
Currently, PML risk is conducted as a point-of-time test by measuring JC antibody levels in your blood during the treatment period. This genetic test doesn’t replace that test, but it does tell you and your neurologist ahead of time, or before treatment starts, whether you carry the 10x risk and require closer monitoring or having a discussion about alternative treatments. The test has been developed by an eminent British Neurology researcher, Dr. Eli Hatchwell, and establishes a simple fact that is unchanging; does the patient carry one of the four gene variants that elevates their risk 10x.
As if more evidence is required, the doctor who invented natalizumab, Dr. Larry Steinman thinks this test is an important new tool:
“It’s critical to be able to identify genetic mutations that greatly increase a person’s risk of this devastating infection. Preventative screening for these variants should become part of the standard of care. I wish we had more powerful tools like this for other therapies.”
What MS Neurologist wouldn’t want to know, either ahead of time or during treatment, that a patient has a 10x greater risk of developing PML? Blood tests and MRIs are all lagging indicators whilst this test establishes a simple fact that is unchanging. Does the patient carry one of the four genetic variations that elevates their risk 10x?
All of which leaves me wondering…why aren’t all the MS neurologists taking advantage of this opportunity to get an insight into the potential for future issues, instead of just relying on lagging indicators like blood and MRIs?
As ever, I’ll bet it is because they aren’t the ones being threatened by PML. My bet is that if the PML gun was pointed at their head they’d be using this test at every opportunity.
#PML #JCV #RiskManagement #MultipleSclerosis #monoclonal #patientadvocacy #patientsmatter
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Hi there.
Firstly, I am back from ECTRIMS (MS Milan 2023) and this is Sunday morning. I arrived home lateish last night, collapsed and started sorting things out today and I have mostly unpacked all of my luggage.
I would like to thank my Patreon supporters as their help has enabled me to buy a proper tripod, the sort of thing you think you need, use it a bit and then wonder how you ever lived without it. Also a portable light and some v basic clip-on mics that are ok but definitely need upgrading. Only if it is because I have dreadful anxiety about the impossible to gauge battery life.
The though of interviewing someone and having the mic battery quit without warning and losing everything is quite concerning. Many of the people I talk to need their arms gently twisting to get any time from them so a repeat is unlikely.
The event was in Milan but it might have well of been in Reading for all I saw of Milan. I ended up walking (indoors mostly) an average of 15k steps a day. Just under 10 miles in old money and the only session I saw was the one where I was a panellist with some esteemed people of which I can only remember Prof Schmierer and Dr Riley Bove. The rest of the time was setting up for interviews, doing the interviews, breaking all the kit down, remembering to recharge the wretched mics and then setting up in another location. Thank the heavens for coffee and modafinil!
I have interviewed a ton of people, I haven't forgotten the plans about remyelination and the things said to us. All of a sudden I won't need to move from my desk for the next 3 weeks! There are topics about EBV, AI in MRI, the importance of Data Registries, more on the Exoband (Moveo is an Italian company and had a stand there) andf I will need to review my 25GB of files to say more.
I am still slightly shellshocked. More to come but only after settling in to watch the England match today.
Catch you all later and thanks again for all your support. If you have FOMO about not supporting theMSguide.com (I use the money for the channel running, not for me) through Patreon then please help here: www.patreon.com/theMSguide
Thank you.
Dominic
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I have asked to be on a speaker panel as part of the AIMS Charity - www.aimscharity.org - annual conference in Sheffield in November.
I feel like I am getting a little more radical as I get older and grumpier. I was asked about my talk and I wrote a synopsis for a Press Release:
1. What can attendees expect from your presentation?
But MS Won’t Kill You...
Dominic will be discussing how the advances in treatments and knowledge about the long term effects of MS have outpaced the change in attitudes regarding the treatment of MS and why this is.
To this day people are told not to worry, live their best lives, come back if it bothers you and Healthcare Professionals (HCPs) often excuse these approaches justifying them with remarks like, ‘I don’t want to scare the patient, they may fail to engage.’, or variations thereof. Ministrations like these are at best misguided and at worst irresponsible, merely serving to pass the burden of degeneration into the future. Aka - kicking the can down the road.
Regardless of how a patient may initially present it there is no way of telling from the evidence required to make a diagnosis just how the disease will progress, making it factually impossible to give an accurate prognosis.
The early initiation of high-efficacy interventions indisputably improves the long term outcomes for the patient. This means delaying the onset of disability and reducing the severity of the disability.
2. Where do you see the future of MS management and treatment heading in the next five years?
From a patient perspective I’d like to see several things change.
A pivot when viewing the disease away from the very academic and theoretical lens of ‘pure’ neurology to one that gives primacy to the quality of life of the patient over the next 20-50 years, not a year by year managing of decline.
A more holistic view to treatment. There is much lip-service paid to this concept but on the ground and in the clinic the depth of knowledge outside the pure silo of neurology is woeful. The importance of the holy-trinity of diet, exercise, and sleep is known but rarely followed through on barring ‘words of advice’.
Accuracy alert - I was looking at my medical records that are tied to the MS Register and it turns out I have had MS for 31y as I was diagnosed in 1993!
13 - 1
If you like a longer read then Professor B aka Mouse Doctor, a neuroscientist specialising in MS, has written a synopsis on the latest paper. multiple-sclerosis-research.org/2023/08/remyelinat…
Interestingly, there is always a tension between the hardcore academics and the cutting-edge tech and research side. In my opinion, both are right and both are wrong. The academics want incontrovertible proof and the more experienced ones like Prof B can set new research against their deeper experience yet the commercially driven people need to back a theory to research and promote. If they are right vast wealth awaits and if not they are the sort of people that dust themselves off and try again.
It is the Yin and Yang of the small c experienced and battle-hardened conservatives in academia and the cut and thrust innovators. I am always reminded of the famous Adaptability To Change distribution curve model popularised by Geoffrey Moore's book 'Crossing The Chasm' published in the dotcom boom.
6 - 1
Remyelination update - I have approached Novoron and Atara to discuss the topic so we can have a view from the commercial cutting-edge side. I am in touch with several academics (one even sent me a paper they published yesterday but my science brain struggled with the fine details)
We'll hear from the person leading the clemastine research as well. On top of that I am going to speak with several patients at different stages of the disease to explore their hopes and understanding.
19 - 6
So far, remyelination is winning. I am thrilled and frustrated. Thrilled because I want to do the video and frustrated because several people are proving very difficult to nail down. Have no fear though. I am working on it. I am trying to talk to Atara. It will happen, it won't happen as fast as you and I want.
In the meantime, the travel video is just in the final throes of editing so it is likely that'll be sooner. Scottie shot a ton of amazing footage and I think you'll enjoy it when Pete finishes editing it.
With the channel taking off in popularity - relatively speaking, I am NOT Mr Beast! - I feel this added sense of responsibility to make even better content. It slows me down a bit as I am putting a lot more thought and effort into my videos so they are less 'off the cuff' meandering efforts.
I accidentally snapped a screenshot of me puzzling over something. Probably a very boring spreadsheet of UK wide patterns in drug prescribing for MS. Now there is a horror story...you can get great care of rubbish care...If you are an Excel whizz (I'm not) and feel like getting into the data then here it is opendata.nhsbsa.net/dataset/activity/secondary-car…
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Hi there and welcome if you are a new subscriber. I have several projects on the go and am trying to work out which order I should release them in. Please vote for the one you'd like to see next. Thank you.
8 - 4
Hi there all you good people that follow the channel. In two years I am just shy of 2000 followers. I am really grateful.
Many of you will know that I recently had Round 2 of Lemtrada (alemtuzumab) at Barts in London.
I have a dreadful mental condition that doesn't let me rest because I feel lazy. I shot the basics for a video yesterday and am trying to edit it. I am being slightly hampered by the fact I feel pretty grotty. Oddly, my eyeballs feel one size too large for my skull. I blame the diet of anti-virals and antibiotics that I have to take as a prophylactic measure. I trust my docs so faithfully take them and shovel down Paracetamol (Tylenol) and ibuprofen as much as is safe. My poor tummy...
Still, please forgive my lack of output as I am feeling good one minute and rough the next.
Keep your eyes peeled as I did an off-the-cuff video with all the pills I take after 30y of MS. Some prescribed and some not.
Here is the begging part (and anyonwe who knows Brits knows this doesn't come easily) :- I really struggle to run the channel. I don't have a job and make bits and pieces here and there. Please please please support the Patreon as I use the money (still under a £100 a month) to help pay for a professional editor.
Go to www.patreon.com/theMSguide and pledge away. It can be for small amounts and it makes a massive difference. Thank you.
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Hi there all you good people that follow the channel. In two years I am just shy of 2000 followers. I am really grateful.
Many of you will know that I recently had Round 2 of Lemtrada (alemtuzumab) at Barts in London.
I have a dreadful mental condition that doesn't let me rest because I feel lazy. I shot the basics for a video yesterday and am trying to edit it. I am being slightly hampered by the fact I feel pretty grotty. Oddly, my eyeballs feel one size too large for my skull. I blame the diet of anti-virals and antibiotics that I have to take as a prophylactic measure. I trust my docs so faithfully take them and shovel down Paracetamol (Tylenol) and ibuprofen as much as is safe. My poor tummy...
Still, please forgive my lack of output as I am feeling good one minute and rough the next.
Keep your eyes peeled as I did an off-the-cuff video with all the pills I take after 30y of MS. Some prescribed and some not.
Here is the begging part (and anyonwe who knows Brits knows this doesn't come easily) :- I really struggle to run the channel. I don't have a job and make bits and pieces here and there. Please please please support the Patreon as I use the money (still under a £100 a month) to help pay for a professional editor.
Go to www.patreon.com/theMSguide and pledge away. It can be for small amounts and it makes a massive difference. Thank you.
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Please support my solo efforts for less than a cup of coffee a month: patreon.com/theMSguide
Empowering patients through knowledge to achieve the best outcomes possible with their MS. The aim is to educate and inform, not persuade. I was diagnosed in 1994, am on my fifth DMT and talk with many different MS patients from around the world about their MS experiences. I'll also talk to experts to get understandable and relatable information for us, the patient community.