The 'Chad King' syndrome
I don’t have much more to say on this case except to remind you that lifestyle interventions are an essential complimentary treatment for MS.
One of our MS-Selfie subscribers brought to my attention that the Grammy Award-winning singer-songwriter Chad King, who has MS, is stepping back from performing due to the disease (see CBS article 21-Feb-2025).
He was diagnosed with MS at age 21 in 2007. He went onto interferon-beta-1a (Avonex) shortly after diagnosis but stopped treatment after six months. He followed the Wahls protocol for years and “turned his health around" (his words). "Over the last decade, I’ve looked at optimal health through the lens of four pillars: diet/nutrition, physical activity, sleep, and stress management (via meditation, talk therapy, a spiritual practice, etc)" - from his Instagram account. He now needs a cane and has left-sided weakness, which also affects his speech. He is now on ocrelizumab (Ocrevus).
She wanted my thoughts on his case. Without all the background information, it isn't easy to make any judgments.
I am not surprised to hear his story; I can tell many similar stories. Left untreated and given time, the vast majority of people with MS (pwMS) will become disabled. Yes, lifestyle interventions help, but they are not a treatment for MS. They are complementary and not alternative treatments for MS.
Back in 2007, interferon-beta, glatiramer acetate, and natalizumab were licensed therapies for MS. I am not sure why, after stopping interferon, he was not offered glatiramer acetate and later natalizumab. If he had been started on natalizumab, he may still be fully functional. I still have a few legacy patients who have been on natalizumab from the very beginning, i.e. as part of the phase 3 AFFIRM study, who are fully functional, whilst others have become more disabled despite treatment. The former tend to be those treated very early— as I have said many times before, ‘time is brain and spinal cord’.
There is a chance he may not have been eligible for natalizumab treatment. On the NHS, you have to have rapidly evolving severe MS to be eligible for natalizumab first-line (two disabling attacks in the preceding 12 months and MRI activity) or highly active MS on a platform therapy to be offered natalizumab (relapse in the last 12 months on a DMT and MRI activity).
Active MS is the presence of relapses and MRI activity in the preceding two years. Chad King may not have fulfilled this definition once he had stopped interferon-beta for a year or two and hence may not have been eligible for treatment on the NHS. I have one patient who was diagnosed in the early noughties and went onto interferon beta for about 9 years. She stopped interferon because of injection fatigue. She was then monitored clinically and with annual MRI scans and remained stable and functional for the next 12-13 years. Now in her sixties and retired, she has noted worsening gait and cognition. Her MRI has shown a new lesion, but only recently, and is relatively non-specific. It may be due to small vessel disease rather than MS. Her delayed worsening is either due to smouldering MS or superimposed ageing. The dilemma we now have is whether she is eligible for siponimod or should wait for tolebrutinib to be licensed and greenlighted by NICE and NHS England. The evidence that either of these DMTs offers much to people in their sixties with MS is debatable.
People who promote lifestyle interventions as an alternative treatment to modern MS disease-modifying therapies are wrong. They are misinformation and, at worst, disinformation practitioners and don’t have a deep understanding of what MS is as a disease. A large number of these practitioners who promote lifestyle interventions as an alternative treatment for MS back up their positions with conspiracy theories. The commonest is that Big Pharma captured all the neurologists and brainwashed them by bribing them into thinking that their products were the only show in town.
It is essential that if someone with MS opts for lifestyle management of their disease, they are not abandoned and are added to the at-risk register of pwMS. I offer these patients more frequent MRI monitoring, and if there are new lesions and they see their scans, they are often open to starting a DMT. Others refuse scans and would rather not know what is happening to their MS. These patients should be seen regularly and educated about MS. Sometimes, it can take many years to get through the denial phase of having an MS diagnosis and coming around to starting treatment. Sadly, in some cases, the treatment comes too late to prevent disability. I hope that, in the case of Chad King, it will preserve his upper limbs, bulbar (swallowing and speaking), and cognition.
Many argue that the lifestyle warriors who do well on these programmes are living proof that lifestyle interventions work. Yes and no.
Yes, a small minority of them will do well because that is the natural history of MS. However, the proportion of those who do well gets smaller with time. In the Swedish data, after 40 years of follow-up, less than 5% of pwMS are defined as having benign MS. No, in that some of these people may not have MS. There are a few unpublished cases that are well-known in the MS community who claim to have MS, manage their MS with lifestyle modifications claiming they don’t need DMTs. Some of these pwMS have never been seen by a neurologist; hence, we don’t know if they have MS. The psychiatrists often refer to these patients as having a form of Munchausen syndrome.
It is also important not to be too harsh on someone who decided not to have a DMT in the noughties. Hindsight doesn’t quite get the context right. Back in 2007, we didn’t know what we know now, and treatments were not that effective. It was only after the emergence of natalizumab that we learnt what we know now about treating early to a target of no disease activity, flipping the pyramid, and adopting a marginal gains holistic approach to managing MS.
Both interferon-beta and glatiramer acetate came with unpleasant side effects, and patients often stopped taking them. In other words a large number of pwMS would be in the same boat as Chad King.
I don’t have much more to say on this case except to remind you that lifestyle interventions are an essential complementary treatment for MS. They are not a substitute for DMTs if you have active MS. If you have inactive MS and are not eligible for a DMT, make sure you are adequately monitored so that if your MS becomes active, you can start a DMT. Please don’t give up hope if you have smouldering MS. New treatments will emerge to treat smouldering disease.
I would be interested to hear how many of you have not been on a DMT, and now, many years later, you have smouldering MS and what you are doing about it.
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Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or 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.
Thank you so much for writing this, i'm so grateful for having had Lemtrada. I'm all for lifestyle changes or proactive approaches to health - like looking after your car and optimising it's running, however i am under no illusion that optimisation is not a replacement for medical intervention. When you get diagnosed with MS (and friends have said the same about other diseases such as RA or IBD) the amount of diet books which offer cures are astonishing. I don't think this is fair at all for a vulnerable population to be targeted for profits.
Thank you for this newsletter! This needs to be said loud and clear. Shouted from rooftops even! Thank you! Especially for the last liner on smouldering ms and not giving up hope. Good for us to be mindful of that distant light in the horizon.