**3. Results**

In Italy, 88 questionnaires were correctly completed, and in Latvia, there were 75 valid responses from patients and 91 completed responses from GPs. There were 448 completed responses to the UK survey. Comparative results are presented below under the following headings—sociodemographic information, household income, disease progression and management, perceived effectiveness of treatment, responsibility for medical care, personal care, difficulty explaining the illness, and quality of life. The results of the additional GP survey in Latvia on the managemen<sup>t</sup> of ME/CFS are provided in the concluding section.

#### *3.1. Sociodemographic Information*

The respondents ranged in age from 17 to 81, with an average of 50 years, and there was no significant difference between the three countries in terms of average age. In addition, there was no significant difference between the three countries in the gender distribution of respondents; in all three, a large majority of respondents were female. A very much higher proportion of UK respondents had post-school educational qualifications than in Latvia or Italy, but there was no significant difference between the latter two countries in that respect. Around half of all respondents in the three countries were married. In Latvia, a third of respondents lived alone. The proportions in Italy and the UK were lower, but these differences were not statistically significant. The results are detailed in Table 1.


**Table 1.** Sociodemographic data.

#### *3.2. Household Income*

According to literature, the disease significantly impacts on the personal income, because patients are frequently unable to work. International comparisons are very difficult due to the heterogeneity of average income in UE countries. Looking at Eurostat [12], the mean equivalized net income in 2018 was respectively €19,208 (Italy), €25,642 (UK), and €8740 (Latvia). However, in Italy and the UK, only 44.1% and 54.6% respondents respectively declared an income higher than €15,000, which supports the hypothesis of an impact of the disease on individual productivity. In Latvia, no patients declared an income higher than €15,000, but this is due to the fact that income is relatively lower in this country. This international comparison is summarized in Table 2.


**Table 2.** Household incomes.

#### *3.3. Disease Progression and Management*

There were significant differences between the three countries in the proportions of respondents reporting having had more than ten investigations, having experienced more than ten symptoms, or having had more than five treatments. Italian respondents reported the most investigations and treatments and the most symptoms, which may be associated with a lack of appropriates guidelines for diagnosing ME/CFS, and the Latvians least, with the UK respondents occupying an intermediate position. UK respondents were significantly more likely than others to report that their symptoms fluctuated in severity (Table 3).

#### *3.4. Perceived Effectiveness of Treatment*

As regards the use of non-pharmacological treatments, in all three countries there were free text responses concerning the treatments followed during the last five years, in particular physiotherapy, cognitive behaviour therapy (CBT) and graded exercise therapy (GET). For all countries, physiotherapy is the most widespread treatment, with 41.7% Italian patients receiving it (or having received it in the last five years), 30.8% Latvian patients and fewer UK patients (14.3%). CBT was also reported by 23.5% Italians, 33.3% Latvians, and 7.0% UK participants.

A specific question asked if patients considered non-pharmacological treatments effective. Whilst in Italy only 8% patients answered positively, this percentage rises at 52% for Latvia and 57.7% for UK.

With regards to this item, it seems that Italian patients are not satisfied with the therapies received. A specific response regarding GET was obtained only from the UK, and it is noteworthy that only one respondent found it effective. These findings are detailed in Table 4.

#### *3.5. Responsibility for Medical Care*

GPs were significantly more likely to have primary responsibility for medical care in Latvia than in either Italy or the UK. This probably reflects the situation that there is not a specific patients' organization for ME/CFS in Latvia, and the GP is a 'gate-keeper' for patients in diagnostic and treatment process. In Italy, the search for a correct diagnosis and the absence of appropriate guidelines for the disease identification pushes patients to ask for specialist consultations, as well as many diagnostic tests being performed before a final diagnosis is arrived at.


**Table 3.** Disease progression and management.

On the contrary, specialists had little involvement in the care of the UK patients. Other healthcare professionals were involved in the care of a higher proportion of UK respondents than was found in either Italy or Latvia. In the latter case, there was very little involvement of other professionals (see Table 5).

#### *3.6. Personal Care*

Significantly fewer Latvian respondents had family assistance with personal care than was found in either Italy or the UK. Other (non-family) sources of personal care assistance were reported by Italian or Latvian patients while nearly a fifth of UK respondents were cared for by non-family members. No external help with personal care was reported by nearly one in five of Italian respondents and a smaller proportion of UK ones. No response from Latvian patients. A large proportion of Italian and Latvian respondents reported

that they had capacity for self-care, as well as a

majority, of UK

**Item Country No. Respondents No. Responding 'Yes' % 95% Confidence Interval (%)** Treatments practiced in the last five years Physiotherapy Italy 84 35 41.7 31.7–52.9 Latvia 39 12 30.8 18.6–46.4 UK 28 4 14.3 0.0–49.3 Cognitive behaviour therapy (CBT) Italy 85 20 23.5 15.8–34.2 Latvia 39 13 33.3 20.3 = 49.0 UK 115 8 7.0 0.0–24.9 Graded exercise therapy (GET) Italy - - - - Latvia - - - - UK 70 1 1.4 0.0–25.2 Perceived effectiveness of non-pharmacological treatments (No. finding treatment effective): Italy 88 7 8.0 0.0–28.4 Latvia 75 39 52.0 36.0–68.0 UK 356 204 57.3 50.4–64.2

 **Table 4.** Perceived effectiveness of treatment.

(Table 6).

respondents

significantly

 smaller

proportion,

 but still a

#### **Table 5.** Responsibility for medical care.


**Table 6.** Personal care.


#### *3.7. Difficulty Explaining the Illness*

One of the major difficulties for CFS/ME patients consists in explaining the symptoms. In Italy and the UK, around three-quarters of all respondents reported difficulty explaining their illnesses to physicians, but in Latvia only a quarter of respondents had this problem. This difference was statistically significant. When it came to explaining the illness to the family, though, nearly three-quarters of Italian respondents had trouble, while for Latvia and UK this figure decreases to less than 50%. Again, this difference was statistically significant. A quarter of Latvian respondents expressed difficulty explaining their illnesses to friends, compared with about two-thirds of British respondents and more than fourfifths of Italian ones. All these differences were statistically significant. The Latvians least frequently had difficulty explaining their illnesses to employers, compared with more than half of UK respondents and nearly two-thirds of Italians. However, these differences were not statistically significant (Table 7).



#### *3.8. Quality of Life*

In all three countries, a marked diminution in quality of life (scored 0 to 100) between the year before illness and the most recent year was reported. All these changes were statistically significant. The reported quality of life prior to illness was significantly higher in Italy than in the other countries and was lowest in Latvia. The diminution in perceived life quality as a result of illness was lowest in Latvia, where the mean quality of life score during illness was significantly higher than in either Italy or the UK. Indeed, it was in Italy where the greatest decline in average quality of life as a result of illness occurred (Table 8). To this extent, a study was carried out in Italy aimed at demonstrating the impact of selected variables on the probability of experiencing a decrease higher than 50 points in self-reported quality of life. It turned out, for example, that having more than 10 symptoms and being treated with more than 5 treatments was associated with this large reduction in quality of life [13].



#### *3.9. Results of the Additional GP Survey in Latvia on the Management of CFS*

In Latvia, there were 91 valid responses to the GP survey, which included questions on the criteria for making a diagnosis, laboratory examinations, referral to specialists and methods of treatment. For making the diagnosis, the results showed that 13 responders (14%) used the Fukuda case definition. 61 responders (67%) used the ICD-10 code R53 (malaise and fatigue), while 18 (20%) used code G93.3 (post viral fatigue syndrome). 5 respondents (5.5%) used ICD-10 code B94.8 (sequelae of other specified infectious and parasitic diseases). The multiplicity of codes used to record diagnoses of ME/CFS contributes to the problem of determining numbers of patients. Moreover, 70% of GPs reported that patients had difficulty in describing their symptoms. All the participating GPs used laboratory tests in the diagnostic process, some more than others, with 35 respondents (38%) using more than ten different tests. 65 GP respondents (71%) referred patients for specialist care and diagnostic support. Specialists referred to included neurologists (62%), psychiatrists or psychotherapists (30%), and infectious disease or other specialists (13%). 70% of GP respondents indicated the presence of comorbidities in their ME/CFS patients. GP managemen<sup>t</sup> included medication, referral to physiotherapy, psychotherapy, osteopathy, homeopathy and lifestyle adjustment, but 59% of respondents regarded the disease as incurable. Improvements to the care of ME/CFS patients suggested by GP respondents included the development of a specialists' consortium, better information for patients, public funding for psychotherapy consultations, additional training, and more time for conversation with patients.
