Webinar: European ME Alliance: ME/CFS in Europe - EMEA Roundtable II, 8th April 2022, 14:00 CET

[Andy]

"A Roundtable of European Stakeholders and Policymakers
ME/CFS in Europe

EMEA is now arranging the next roundtable on Myalgic Encephalomyelitis (ME/CFS) in Europe.

The meetings bring together a variety of initial stakeholders in Europe, including clinicians, researchers, policymakers, industry and patient representatives from EMEA's members, in order to create a better understanding of the many unmet needs and the devastating impact of ME/CFS on patients and families across generations.

In these times where similarities between ME and Long Covid are becoming more and more apparent then this meeting will also include discussions on the implications of Long COVID for ME/CFS."

Agenda and registration available from https://europeanmealliance.org/meineurt22-1.shtml#agenda

 

[Andy]

 

[Hoopoe]

Some results from the EMEA European survey



One of the results was that age of onset <20 years is associated strongly with having severe and very severe ME.

Infection trigger about half of cases. The recovered patients group had a different triggering event profile than those who were ill. Patients with traumatic event trigger tended to be less severely ill.

Delayed diagnosis is a big problem. It takes about 4 years for 50% of the sample to be diagnosed, but it takes 9 years for 75% to be diagnosed.

74% of patients say they get no or little support from the healthcare system.

The negative and positive factors affecting the illness are quite similar across countries.

 

[Trish]

Do you have a link to the source for those graphs, @strategist?

 

[Hoopoe]

They were just shared in the webinar.

 

[Hoopoe]

This pattern was generally also seen in other countries but I forgot to take a screenshot.

 

[Hoopoe]

Saugstad said two severely ill patients recovered in his new clinic (it's unclear if recovered meant no longer having illness). The treatment was CoQ10, B-12, and something that I understood was rehydration fluids.

I have a slightly bad feeling about this.