Should The M.E Patient Community Adopt The New Prevalence Estimate of 65 Million?

With ME Foggy Dog, I double-check new research findings with the charity/organisation I represent to make sure we are aligned and consistent. Because Foggy and I are currently fundraising for Cure ME, I contacted the Cure ME research team to get their opinion on the latest published prevalence estimate, before deciding whether to accept the new figure in this research article.

To be clear, I think Dr. Hanson and co are top researchers and scientists in their field so this isn’t a criticism of their work. However, the original research that they took their data from was purely based on the US population.  I think it’s a stretch to apply the prevalence formula worldwide. Prevalence could vary according to which population you look at. No country on the planet can 100% confirm its M.E (or much wider and vague M.E/C.F.S) prevalence and so this seems to be premature.

There is still an entire continent, Africa,  that can’t even attempt to estimate it’s prevalence due to the lack of research and accurate diagnoses. Many patients in the more rural areas seek help from African Shamans (Medicine Men) and so aren’t included in ‘modern medicine’ statistics. Africa is a blooming big continent and it could not be accurately represented by US statistics. I agree with Cure ME and believe establishing regional prevalences should be a priority, this will then lead to a more accurate estimate of worldwide prevalence.

Of course, patients want to be able to accept the much higher figure as fact. It is a much more headline-grabbing statistic than the current 17-30 million patients and it adds weight to our ‘global crisis’ argument. I have always been of the opinion that 17-30 million is not big enough to be accurate and so I was not surprised to see a much larger figure in this research paper. I am just wary of the worldwide figure being based on the stats (which may well include misdiagnoses and ‘Chronic Fatigue’ in its results) of one country.

ME Foggy Dog is sticking with a worldwide prevalence of 17-30 million patients for the time being.

This is not, obviously, an official statement from Cure ME, I merely used their private input for my own clarity.