Happy New Year: broken promises
In 2023 MS self-management will become the mainstream, driven by hyper-intelligent AI chatbots.
Promise, by Jackie Kay
Remember, the time of year
when the future appears
like a blank sheet of paper
a clean calendar, a new chance.
On thick white snow
You vow fresh footprints
then watch them go
with the wind’s hearty gust.
Fill your glass. Here’s tae us. Promises
made to be broken, made to last.
The holiday over the Christmas break is usually a time for reflecting on the past 12 months and what lies ahead. This year I came down with flu on Boxing day, which has been particularly bad, not quite man flu but almost [;-)]. It has really taken it out of me. The worst symptom has been a disabling hacking cough that has interrupted my sleep for the last week. It is so bad I rarely sleep for more than an hour. I wake feeling exhausted and have to cat-nap several times during the day. In addition to sleep deprivation, there is profound fatigue. Any physical activity leaves me exhausted. I appreciate this is how many pwMS feel on a daily basis, and yes, it is terrible.
I had a long list of writing tasks to complete over this period with deadlines, some self-imposed, and I have had to let them fly by. I feel the most guilty about some background research and text I promised a very close colleague and friend for a paper they needed to submit. It is not good to let people down. Maybe my New Year resolve should be to complete my ToDo list and not over-promise.
In the past, one of my favourite quotes was from Douglas Adams (The Salmon of Doubt): “I love deadlines. I love the whooshing noise they make as they go by.” Not anymore, not in 2023.
I have received many emails from subscribers asking me to predict the next big thing in multiple sclerosis research in 2023. The problem, at least for me, is that everything in MS research makes little sense outside Epstein Barr Virus and its causal link with MS. So, will 2023 be the year the MS community and MS stakeholders get behind the EBV hypothesis?
MS-Selfie More Evidence that EBV causes MS (6-Sep-2022)
From a clinical perspective, I need to be a little more circumspect. 2023 will likely be the year that MS self-management really takes off. The self-management revolution won’t be via MS-Selfie or one of the many MS apps available on Apple’s or Google’s app stores but via chatbots driven by artificial intelligence, for example, OpenAI’s ChatGPT.
I have been playing around with OpenAIs’ platform for about eight months and have seen it evolve and improve. The following is an example from today.
** Beginning of ChatGPT 1 **
Q: How do I manage overflow fecal incontinence?
A: Overflow fecal incontinence, also known as passive fecal incontinence, is a condition in which the rectum is full of feces, but the individual is unable to pass it due to a physical blockage or because the muscles used to pass feces are not strong enough. If you are experiencing overflow fecal incontinence, it is important to see a healthcare provider as soon as possible. They will be able to diagnose the underlying cause of the incontinence and recommend treatment options.
In the meantime, there are a few things you can do to manage the incontinence:
Wear absorbent pads or underwear to protect your clothing and skin from feces.
Use a perineal irrigation kit or enema to try to remove some of the feces from the rectum.
Practice good hygiene by cleaning the area gently with warm water and soap after a bowel movement.
Avoid constipation by eating a high-fiber diet and staying hydrated.
Use stool softeners or laxatives as recommended by your healthcare provider to help make bowel movements easier.
Try pelvic floor muscle exercises to strengthen the muscles used to pass feces.
Again, it is important to see a healthcare provider for proper evaluation and treatment of overflow fecal incontinence.
** End of ChatGPT1 **
Many MS neurologists roll their eyes when you question their advice and produce something contrary to what they have been saying. It is one thing to say this is what Prof G says on MS-Selfie, but can you imagine what your HCP is going to say when you produce a response from ChatGPT? I suspect most will be appalled that their hegemony on medical information and skill is being challenged by something outside of the medical profession. In contrast, enlightened HCPs are likely to embrace AI chatbots.
I predict that 2023 will be when the democratization of knowledge is completed, at least in the rich and free world. A new set of resources will emerge for pwMS that will be driven by AI and hence will always be up-to-date and likely to be ahead of HCPs. Most other resources, including MS-Selfie, may quietly disappear in time unless they can evolve. I have some ideas for MS-Selfie to keep it relevant. So significant will be the impact of ChatGPT and its offspring that I wouldn’t be surprised if HCPs start to use it themselves.
The following is a personal example. I was reviewing a journal manuscript for a colleague, and I want to know if the microglial activation marker, TSPO, used in PET imaging in MS is affected by sex. I got this from ChatGPT, and when I read it, I said, “Wow, this is going to revolutionise science and science writing.”
** Beginning of ChatGPT2 **
Q: Is the expression of TSPO affected by sex?
A: TSPO (translocator protein) is a protein that is expressed in various tissues throughout the body, including the brain, heart, liver, and spleen. TSPO has been found to be expressed at higher levels in certain conditions, such as inflammation, cancer, and neurodegenerative diseases. Some studies have suggested that TSPO expression may be influenced by sex hormones, but more research is needed to fully understand the relationship between TSPO and sex.
One study found that TSPO expression was higher in the brains of male mice compared to female mice, and that estrogen treatment reduced TSPO expression in female mice. Another study found that TSPO expression was higher in the brains of female mice compared to male mice, and that testosterone treatment increased TSPO expression in male mice. However, these findings may not be directly applicable to humans, as there can be differences in TSPO expression between species.
It is also important to note that TSPO expression can be influenced by other factors, such as age, genetics, and environmental factors, in addition to sex. More research is needed to fully understand the relationship between TSPO expression and sex.
** End of ChatGPT2 **
I covered the topic of medical gaslighting on MS-Selfie last year. I was shocked by the results of the survey you completed. One of my fellows and I have penned a commentary on the topic and have invited some people with multiple sclerosis to contribute. The purpose of publishing the survey results is to make the MS community aware of the problem, and hopefully, it will lead to them addressing this issue and the other pervasive problems we have in healthcare linked to unconscious biases. I was, therefore, not surprised that ‘Gaslighting’ was Merriam-Webster’s Word of the Year in 2022. I, therefore, predict that MS HCPs will be named-and-shamed (me included) in 2023 in relation to medical gaslighting, and we will be forced to change our behaviour. Do you agree?
MS-Selfie Medical Gaslighting (22-Aug-2022)
MS-Selfie Gaslighting: an institutional problem (25-Aug-2022)
Resolutions and predictions
In conclusion, I resolve to not over-promise things in 2023 and plan not to miss deadlines. You have no idea how hard this resolution will be for me to stick to. I predict the EBV hypothesis of MS will get the necessary due diligence it has been craving for over 20 years. In 2023 MS self-management will become the mainstream, driven by hyper-intelligent AI chatbots. The dynamics of the HCP-patient relationship will be changed beyond recognition; pwMS will be more empowered with curated, highly relevant, up-to-date knowledge and HCPs will not be able to ignore or gaslight them.
As for the other aspects of MS research, I am not expecting anything earth-shattering; it will continue to move at a glacial pace that will frustrate pwMS and their families.
If you have any predictions or resolutions to share with us, please do. As always, the success of MS-Selfie is that it is a community, albeit digital, of like-minded people, and that includes sharing our thoughts and aspirations.
Happy New Year
I wish you a Happy New Year and hope 2023 will be joyous and happy. Recent events in my life are such that I have little reason not to be joyous and happy. Thank you.
Subscriptions and donations
Paid subscriptions to MS-Selfie are being used to administer the Newsletter and associated MS-Selfie microsite currently in development. At the request of several readers, I have now added the option of making a one-off donation. To keep this initiative open to all readers, I would appreciate it if those who can afford a subscription, please subscribe. For active paying subscribers, thank you; your contribution is much appreciated.
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
Another example from ChatGPT:
Q: Does EBV cause multiple sclerosis?
A:Epstein-Barr virus (EBV) is a common virus that infects most people at some point in their lives. While EBV is not considered to be the direct cause of multiple sclerosis (MS), research suggests that it may play a role in the development of the disease.
MS is a chronic autoimmune disorder that affects the central nervous system (CNS). The immune system mistakenly attacks and damages the myelin, a protective layer surrounding the nerves in the CNS. This damage can lead to symptoms such as muscle weakness, difficulty with coordination and balance, and problems with vision.
Studies have shown that people with MS are more likely to have been infected with EBV, and that having a history of EBV infection may increase the risk of developing MS. However, it is not clear whether EBV infection directly causes MS or if it is simply a risk factor for the disease.
It is important to note that while EBV infection may be a risk factor for MS, it is not the only factor. Other factors, such as genetics and environmental triggers, may also play a role in the development of the disease.
CLEARLY IT IS NOT THAT AHEAD OF THE CURVE ;-)
For those of us who are struggling cognitively using even more technology can feel mentally exhausting. Such a sad state we are in when what we need is “care”. Not a robotic system. Sometimes I despair at what is a head for us older MSers. Then those who’s DMTs fail them.