Orkney has the highest rate of MS in the world

Background: 30 years ago very high MS prevalence rates were recorded in northern Scotland. A prevalence study was repeated in Aberdeen, Orkney and Shetland to see if prevalence rates had changed, assess which factors affect prevalence and record disability status.

Methods: Hospital, general practice and laboratory records were searched to identify prevalent MS patients (alive and registered with a participating general practice on 24 September 2009). Records were reviewed to confirm diagnoses applying Poser definite and probable and McDonald diagnostic criteria. Disability status (Expanded Disability Status Scale) was recorded from records and questionnaires. Rates were standardised to the Scottish population.

Results: 590 patients were found (Aberdeen 442, Orkney 82, Shetland 66). Mean age and disease duration were 53 and 19.4 years, respectively. The standardised prevalence rates for Poser probable/definite MS per 100 000 were: combined area 248 (95% CI 229 to 269), Orkney 402 (95% CI 319 to 500), Shetland 295 (95% CI 229 to 375) and Aberdeen 229 (95% CI 208 to 250). McDonald diagnostic criteria gave a lower prevalence (202, 95% CI 198 to 206). Prevalence was highest in women (2.55:1, 95% CI 2.26 to 2.89) with about 1 in 170 women in Orkney affected. Prevalence was lowest in the most deprived socioeconomic group. 45% had significant disability (Expanded Disability Status Scale ≥6).

Conclusion: The prevalence of MS has increased in the overall area, most markedly in Orkney, then Shetland, over the past 30 years. This increase could be due to a number of factors, but rising incidence as reflected by a rising sex ratio, influenced by gene-environment interaction, is the most likely. Orkney has the highest prevalence rate recorded worldwide.

“Can you imagine how guilty Scottish public health official will be if vD supplementation could prevent this epidemic? It is time they acted on this problem! Why wait? What reasons do they have for not acting?”

“One in every 170 woman living on the island of Orkney has MS! An almost incredible figure.”

16 thoughts on “Orkney has the highest rate of MS in the world”

  1. Surely the local council in the Orkney Islands should act if the Scottish Government are incapable of any positive action. The cost of vD supplementation through pregnancy and childhood is surely worth the small investment maybe JK Rowling could do this

  2. Re: "Surely the local council in the Orkney Islands should act if the Scottish Government are incapable of any positive action."I agree; it will need someone in the know to start a lobby. The thing about the Scottish, and I suspect the locals on the Islands, is that they don't warm to people south of the border telling, or recommending, them to do something. Can you help?

  3. Agreed – I am a southerner and wouldn't wish MS on anyone, whichever side of the border they live! As well as seeming immoral not to promote vD, how about the potential savings in terms of health care and tax revenue in the future? And as we know, there are suggestions (sorry, G, not very scientific!) that other diseases , conditions can be mitigated by the same vit.

  4. I agreeYes diabetes certainly is also associated with vD. Time to Lobby…..make the media aware…then politicans may wake up…it could be their children too.

  5. Re: "..the potential savings in terms of health care and tax revenue in the future?"Even if vD supplementation only reduced the incidence of MS by 20% this would have a major impact. George Ebers has been making this argument for awhile. Public Health officials are still reluctant to make a recommendation without better data.

  6. I'm getting email spam from this person too. Very irritating and obviously a quack.

  7. A small group of pwMS have made some FOI request to GP surgeries for the number of patients on their lists who have an MS diagnosis… the results have been consistent from where ever they originated in the country… 4 in 1000 people have an MS diagnosis. Orkney is 6 in a 1000.

  8. MicheleWhy do you think the incidence stated in the paper cited above disagrees so markedly with your stated figures? Could you be wrong perhaps?

  9. The prevalence of a health-related state in a statistical population is defined as the total number of cases of the risk factor in the population at a given time, or the total number of cases in the population, divided by the number of individuals in the population.In the above mentioned studies therate in the three areas was 250 per 100,000 which is 25 per 10,000and 2.5 per 1000 which is 1 in 500.In Orkeny it was 402 per 100,000 so that is 4 in 100,000 so one in 250 people. Obviously the rates are higher in women because they get disease more than menAt 4 in 100 that is one in 250 people (by country I assume you mean Scotland), at 6 in 1000 in Orkneys that is one in 170. Whilst the Freedom of Information route has found perhaps more MSers than found in the survey, they are not that different and says there is loads of MS in Scotland and loads of MS in the Orkneys The Scottish Government should be pro-active about doing something.

  10. Well there are all kinds of ways in which we could be 'wrong'. It all depends on how the figures are collected. Our question was very simple we asked how many people in the doctor's lists were diagnosed with MS and how many people were in their list. When you add all the people diagnosed and all the people in the lists and calculate the percentage one of the other you end up with 0.25% of the lists have MS. There are all kinds of other ways you could select the figures, but since we do not have the luxury of funds or staff, this was the easiest way to do it. I can send you a pdf of the figures we collected if you would like to see what we have done. This is a work in progress and different demographics might present different results, but so far 4 in a 1000 is constant.

  11. Dear Michele Yes it would be good to see. Is your study around the UK or just scotland?

  12. Our mini survey came from across the UK. It is something that I want to continue in the future, but I have my hands full with other things at the moment. Much of the time it takes is in finding email addresses for GPs surgeries, once that is obtained it is not a difficult job to do.Can I have an email address or do I send it to Prof G. For whom I can see an address.

  13. Sent MS Figures UK.pdf to Prof G, although could not find his address on the TEAM page. Could not find your address on the TEAM page either, as I do not know your name.Michele

  14. Dear MicheleI got it from Prof G, very interesting and for those reading this post, Michele's study was based on analysis from catchment of 775,000 people

  15. There are a couple of Registers being set up in the UK at present, but they are only collecting figures from Neurologists for newly diagnosed patients, as well as from direct input from patients themselves, that still leaves a lot of people out of the loop, and it is going to be a while before actual numbers are known. It was explained to me that GP lists were likely to be inaccurate on several counts, such as uncertain diagnosis, out of date records and uneven distribution (ie some surgeries have more MS patients than others). To my mind it would be easy enough for the NHS to collect all the figures from GPs and make some allowance for mistakes and ommissions and still get a good idea of the number of patients with MS. They collect figures for mental health, diabetes and asthma routinely as I understand it, so why not MS?

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