Queen Elizabeth II diagnosed with multiple sclerosis
As the UK celebrates Queen Elizabeth II's platinum jubilee it is worthwhile reflecting on what would have been if the Queen had been diagnosed with multiple sclerosis in 1952.
As the UK celebrates Queen Elizabeth II's platinum jubilee it is worthwhile reflecting on what would have been if the Queen had been diagnosed with multiple sclerosis in 1952.
A state of the art review on MS published in the British Medical Journal in 1952, written by J.W. Aldren Turner a neurologist at St. Bartholomew’s Hospital in London, illustrates how MS would have been diagnosed and managed in 1952.
Please note St. Bartholomew’s Hospital is generally referred to as Barts and is part of the NHS group of hospitals in which I work and take care of pwMS in 2022.
TURNER JW. Disseminated sclerosis. Br Med J. 1952 Sep 27;2(4786):713-5.
The review starts by referring to MS as disseminated sclerosis and states that it is one of the most common neurological diseases in the UK and occurs rather more often in women than in men. The review then refers to the age of onset of MS and describes the clinical features and how to diagnose the disease. The diagnosis of MS in 1952 was based largely on the history and neurological examination and how the disease evolved over time. A lumbar puncture and spinal fluid analysis was needed to exclude neurosyphilis which could mimic MS.
The section on the clinical features of MS is much the same as a contemporary review article would describe it 70 years later. The section on prognosis is grim reading and essentially described the natural history of MS, but makes the point that it would be difficult to accurately predict the outcome in individuals with MS. It does mention that in exceptional cases with a lesion in the brain stem, death may result from respiratory failure, but the common causes of death in chronic cases are respiratory or urinary infections or toxaemia from bed sores, while a number of patients die of some coincidental disease. Turner states that “it had been estimated in 1952 that the average duration of life of someone with MS is about 20 years from the onset of the disease”.
So if the Queen had been diagnosed with MS in 1952 she would not be celebrating her 96th Birthday or platinum jubilee in 2022. She would have died at the age of 52 in 1972 from the complications of secondary progressive MS.
Please note other celebrities with MS from the pre-DMT era didn’t live very long. Ann Rowling, JK Rowling’s mother, died from the complications of MS in 1990 aged 45. Jacqueline du Pré, regarded as one of the greatest cellists of all time, had her career cut short by MS and was forced to stop performing at the age of 28. She died 14 years later in 1987 at the age of 42. Theresa May’s mother, Zaidee Braisher, died in her 50’s from the complications of MS.
These anecdotes remind us how far we have come in the last 70 years. The latest data from the Nordic countries indicate that the life expectancy of someone with MS is now only 3 years less than that of someone from the general population. The improved survival of pwMS over the last 70 years is a real success story. I suspect it is down to DMTs and general improvement in the medical care of pwMS.
Turner states in his BMJ review that treatments are notoriously difficult to assess in a disease which has spontaneous remissions, but it was generally agreed that no drug treatment known at present has any effect in arresting the course of the disease. The review then lists the drugs that have been tried in MS including arsenicals, copper, gold, dicoumarol and tetraethylammonium bromide. Please note all of these drugs were very toxic and Turner concludes: “In a condition in which there is no reliable evidence that any medicinal treatment can alter the course of the disease it is unwise to use a potentially dangerous drug, and it is preferable to employ as a placebo some substance that will not harm the patient”. In 2022 the use of placebos to manage a disease would be considered unethical. Turner goes on to describe liver injections and quinine as acceptable placebos to treat MS. He recommends against using fever or hyperthermia as a placebo as could exacerbate MS symptoms.
Creating a counterfactual of the Queen being diagnosed with MS in 1952, not being treated with an effective DMT and dying 20 years later in 1972 from the complications of MS, illustrates to me why we need to celebrate the progress we have made in the field of MS over the last 70 years. Do you agree?
If you have the time please read the Tuner review; it will help you understand and appreciate how far we have come during the Queen’s reign. A truly remarkable achievement. I am very proud to have played a small part in this success story.
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 or Barts Health NHS Trust. The advice is intended as general advice and should not be interpreted as personal clinical advice. If you have problems please tell your own healthcare professional who will be able to help you.
“illustrates to me why we need to celebrate the progress we have made in the field of MS over the last 70 years. Do you agree?” Are there drugs to stop the underlying neurodegeneration / progression? Are there drugs which stimulate repair of a brain / spinal cord damaged by MS? I’d be surprised if anyone diagnosed with PPMS today would share your view on the progress made. My 57 year old friend (diagnosed 2005) operates her electric wheelchair with one finger and relies on multiple carers (her husband walked out ten years ago). She’s got nothing to celebrate. My GP visits a local care home where there are two women with MS who are in their mid to late 30s. No careers, no family life, no future…. even my GP gets choked up when she mentions them. They won’t be the only cases in the country. Piggy backing on the Jubilee is an odd way of trying to show the progress made in the field of MS. Progress in the MS field has been slow and patchy, with the main work (stopping progression, encouraging repair) still to do - no reason to wave the flags or let off any fireworks. In 1952 no one knew the trigger cause / trigger of MS. In 2022 (70 years later) a paper pointed the finger at ebv. Although even you admit that you don’t know how ebv is involved (another recent paper came up with 10+ possible ways ebv may trigger / drive MS). More research required! Maybe in ten years time (BTK inhibitors, anti-virals targeting ebv, remyelination therapies) the world of neurology can reassess the progress made in treating MS. Compared to the progress made in other fields eg cancer, neurology is at the back of the queue. Don’t get me started on MND ((family friend) or Huntington’s (colleague’s wife).
She would never have had to contend with undignified applications for PIP and other state support in lieu of lost salary.
She would never have had to make painful decisions on whether to leave the house uncleaned or try to find and afford a cleaner.
She would have been able to continue enjoying her pets and livestock knowing that there’s a domestic machinery to keep everything running regardless of her own presence, interest or ability.
Forgive my bitterness but she has always lived in outrageous privilege and to see such widespread public servility this weekend has felt rather embarrassing. I’m glad she’s never had to contend with the nastiness of MS, but if she had, she would’ve endured it in unimaginable comfort and material security.