EUROPEAN ME ALLIANCE SURVEY AND REPORT a summary (part two)

Bonjour, 

Here's my second look and summary of the European ME Alliance survey and report on ME/CFS. It's a huge document and I can only read a little at a time. Plus I think that for those of you with this illness it's easier to understand in small amounts. 

First of all you can check out the first part here. 

You may also like to take a look at the interview done by David Tuller who interviewed the authors of the survey and report 

Symptoms and severity 

Severity 

The survey used a severity scale of the ICC (International Consensus Criteria) 

• mild (approx 50% reduction in pre-illness activity level) 
• moderate ( mostly housebound)
• severe ( mostly bedridden)
• very severe (totally bedridden and need help with basic functions) 

They also added two other categories 

• better than mild but not recovered 
• completely recovered 

The results were 

• 2.4% very severe 
• 16.0% severe 
• 53.8% moderate 
• 24% mild
• 3.7% better than mild 
• 0.2 % recovered 

It was also found that 

• more men than women had mild disease 
• more women than men had moderate disease 
• severe and very severe was a about the same for both 
• the young tend to have a more severe form of the disease
• early onset is a risk factor for severe disease

Symptom burden 

In the survey the respondents were asked which symptoms hindered them most in activities and daily living 

• the most restrictive was symptom exacerbation after exertion (PEM)
• sensitivity to light, sound and smell

Unfortunately cognitive problems (brain fog) was by mistake not included - probably because of brain fog! 

Fatigue that's mostly associated with ME/CFS was not rated as the most restrictive symptom regardless of severity. 

Comorbidities 

• 85% reported having at least one comorbidity 
• the most common being IBS, allergies and fibromyalgia
• plus postural orthostatic tachycardia syndrome (POTS)
• hypermobility or Ehler Danlos syndrome 
• hypermobile type (hEDS)
• thyroid problems 
• diabetes
• mast cell activation syndrome (MCAS) 
• 27% had one comorbidity 
• 25% had two 
• 48% had more than two 

Course of illness 

Little research has been done on prognosis of ME/CFS 

• 46% reported mainly deterioration
• 26% described a course of illness with initial fluctuations then deterioration
• 24% had experienced major fluctuations throughout the course of the illness
• 7% reported improvement 

• only 9% reported improvement during the previous year 
• 29% said they were stable during the previous year  
• 18% had experienced large fluctuations during the previous year 
• 44% reported deterioration in the last year 

Course of illness and disease duration

Among the respondents with a one year disease duration 37% reported experiencing large fluctuations. 

Large fluctuations decreased with disease duration - on average 17% with more than a 4 year disease duration 

Factors impacting the course of the illness 

• biological factors, like age of onset, gender and type of trigger
• how well the disease is accepted by family and friends 
• access to health care, social or financial benefits 
• management strategies 

I hope this format is easy to understand and follow. 

However, if you want to read the full document in your preferred language then follow the link here 

There's still more to come so look out for my next blog.

Au revoir

The French Femme 

xxx 

EUROPEAN ME ALLIANCE SURVEY AND REPORT - a summary (part 1)

Bonjour, 

Between May and August 2021 the European Myalgic Encephalomyelitis Alliance (EMEA) conducted an online survey of ME/CFS patients in Europe.

More than 11,000 people from 44 countries responded to the survey. A small minority were from three non-European countries: the US, Canada and Australia. 

Now the report has been released and translated into 15 languages. 

The full report is very long and obviously difficult for people with ME/CFS to read and interpret. So, as my cognitive skills are reasonably sufficient, I thought that I would provide a brief summary of some of the outcomes from the report. 

AIM 

The main purpose of the survey was to explore similarities and differences across European countries on a number of aspects related to the illness: distribution of patients across variables such as age, gender, severity, diagnosis period, course of illness and factors affecting it, experience with health care systems and other public services, and support from family and friends. 

• 84% of the respondents were female, 15% male, 1% no gender stated 
• the average age of the respondents was 50 years of age

DISEASE TRIGGERS

• infectious diseases was the most common trigger mentioned by 58% of the respondents
• 18% mentioned accident, physical trauma or surgery 
• 4% of the female respondents mentioned pregnancy and birth 
• most associated onset with a single event
• 8% with a combination of events 
• the most combination was infectious disease in combination with long term stress or traumatic life event
• or infectious disease and accident/injury 

YEAR OF ONSET

• 50% became ill before 2009
• on average it took 6.8 years to receive a diagnosis 
• becoming ill varies by age 
• the peak for women is between 35 and 39 
• a smaller peak between 15 and 19
• no similar peaks for men 
• many of those who had been ill for 25 years or more became ill as children 
• data from the survey indicates that ME/CFS often lasts for a long time and in many cases is lifelong 

DIAGNOSIS STATUS AND DIAGNOSTIC PERIOD 

• case definition used, diagnosis guidelines and practices vary greatly across European countries
• the more severe the disease the more likely the respondents received a diagnosis 
• among the severely ill 95% had been diagnosed and 77% among the better and mild group 
• the average age at diagnosis was 39 years of age 
• men on average diagnosed earlier than women

So what are your thoughts on the above? There's more to come from me when I've finished reading and done a brief analysis. 

In the meantime if you feel up to it you can download and read the full report for yourself. Here is the link. Choose your language by clicking on the relevant flag.

 

Au revoir 

The French Femme 

xxx