**3. Results**

#### *3.1. Prior Teaching and Experience of ME, Doctors' Confidence*

Only 27% of respondents reported having previously received formal teaching on ME. Most of this was in the form of undergraduate or postgraduate lectures. 70% reported having had some experience of ME patients. This was in GP clinics, specialty clinics, or in hospitals. Twenty-three percent had had neither formal teaching on ME nor any experience of it.

A total of 89% of respondents admitted not knowing how to diagnose ME, which is very unsatisfactory. 93% did not feel confident dealing with ME patients. Only two respondents (5%) said they knew how to diagnose ME and also felt confident managing ME patients. However, one of them annotated "ish" against the answers indicating he/she was not fully confident, and the other annotated "If by ME chronic fatigue syndrome is meant," indicating he/she did not understand the difference between the terms. These results are summarised in Table 1.


**Table 1.** Prior teaching and experience of ME, confidence to diagnose and manage it.

> There was a significant association between being confident about diagnosing ME and feeling confident about dealing with ME patients (*p* = 0.029). These results are summarised in Table 2.


**Table 2.** Relationship between confidence in diagnosing ME and confidence in managing it.

by Fisher's exact test) = 0.029.

Doctors' confidence was cross tabulated against key indicators of understanding, diagnostic ability and management. Of the six respondents who felt they knew how to diagnose ME or felt confident dealing with ME patients (i.e., five who said they knew how to diagnose ME and three who said they felt confident dealing with ME patients, or six in total as two were confident in both), all thought ME was partly or wholly psychological, and none selected the right combination of diagnostic criteria. All thought ME could be treated with graded exercise therapy (GET) and four thought it could be treated with cognitive behavioural therapy (CBT) to help patients ge<sup>t</sup> out of the sick role. Therefore, it appears that the greater the doctor's confidence, the worse was his or her understanding of the illness and diagnostic skill. These observations are interesting, though they do not reach statistical significance since numbers were small.

On the central question of whether or not ME was thought to be entirely or in part a psychological or psychosomatic illness, respondents were given the options of psychological/psychosomatic or physical illness, and they were allowed to tick both (i.e., with a substantial psychological element). The correct answer, selected by only four respondents (9.1%), was a physical illness only, while 36 out of the 44 respondents (81.8%) believed ME was partly or entirely psychological.

The responses regarding whether participants had received prior teaching on ME or had seen ME patients were cross tabulated against responses to the question as to whether ME was thought to be a physical illness or at least in part psychological. All four respondents who understood that ME is a real, physical illness are among the ten who had received no formal teaching on ME, nor ever seen any ME patients (i.e., 40%), compared to 0% of respondents who had received previous formal teaching on ME or had seen any ME patients (Table 3). This was a very strong association (*p* = 0.0015). This begs the question as to what they were being taught on ME, and what they were told by their colleagues when they came across ME patients in the clinical setting.



*p* (by Fisher's exact test) = 0.0002.

#### *3.2. General Epidemiology*

Respondents performed fairly well on questions relating to the general epidemiology and chronicity of the illness. A series of propositions were put to respondents, who were asked to identify whether they were true or false. Correct responses ranged from 56.8% to 97.7% (average 82.3%). However, it was a matter of some concern that around a third of respondents considered the statement "children with ME miss school because their parents support their sick role and this should be discouraged" to be correct (Table 4).



#### *3.3. Definitions and Clinical Understanding*

Respondents performed poorly on overall categorisation, with 66% of them wrongly believing that ME belonged in the class of illness called medically unexplained symptoms and 59% of them not knowing the difference between ME, chronic fatigue syndrome and post viral fatigue syndrome. On the manifestations and impact of the illness, there was widespread appreciation that the illness was painful, but it was not generally appreciated that ME could affect all body systems and could be lethal. Nor was it appreciated that ME can be severely disabling. The approach to managemen<sup>t</sup> was equally misguided, with only two respondents (4.5%) disagreeing with the false proposition that "patients need to think positive and build up their strength with exercise or gradually increasing activity." (Table 5).

#### *3.4. Diagnostic Process and Diagnostic Criteria*

Respondents were asked which part of the process was the most important in making a diagnosis of ME, which is a careful history. In answer to "ME is mainly diagnosed with ... ", 40 (90.9%) of our 44 participants selected a careful history, of which 31 (70.5%) also selected physical examination and/or investigations, and 17 (39%) also selected a psychiatric history. Thus, only 23 (52.3%) participants selected the correct combination of a careful history without a psychiatric history, with or without physical examination or investigations. (Table 6).

Respondents were then presented with a number of propositions regarding clinical features required for a diagnosis of ME to be made. Some of these propositions were true and some were false. Thus, 38 participants (86.3%; 95% confidence interval: 73.3–93.6%) believed, erroneously, that six months of fatigue was necessary for diagnosis. A significant 39% of respondents did not realise that post exertional malaise is an essential requirement for the diagnosis of ME. Psychiatric features are not part of the diagnosis, but only 24 of 44 respondents recognised this (54.5%; 95% confidence interval 40.1–68.3). A total of 17 participants selected psychiatric symptoms, signs of anxiety or depression, or both, and three participants failed to select any answer. Only six of 44 respondents selected the correct combination of features (i.e., post exertional malaise and symptoms from multiple systems, without psychiatric features (i.e., 13.6%; 95% confidence interval 6.4–26.7). The results are detailed in Table 7.

#### *3.5. Disability, Impact and Clinical Manifestations of ME*

When asked about the level of disability suffered by ME patients, 64% of respondents under-estimated the level of disability compared to other common or serious illnesses (Table 8). Only 36% of respondents correctly recognised that ME patients can be as disabled as patients with all seven of the other conditions named. These are multiple sclerosis, cancer, advanced HIV, chronic respiratory disease, end stage renal failure, heart failure and a broken leg. In total, 45% of respondents over-estimated the ability of ME patients to stay in work (Table 5). The vast majority (97.7%, 43 out of 44, 95% confidence interval 88.2–99.6%) did, however, recognise that children with ME can miss long periods of school (Table 4). The majority of respondents (79.6%, 35 out of 44, 95% confidence interval 65.5– 88.9%) indicated that ME is painful but only a quarter of respondents (25.0%, 11 out of 44, 95% confidence interval 14.6–39.4%) knew that ME can kill (Table 5).



**Table 5.** Respondents' knowledge of definitions and clinical understanding.


#### **Table 6.** Respondents' views on diagnostic methods.




**Table 8.** The impact of ME—Perceived level of disability.

Of our respondents, 70% did not realise the breadth of manifestations and symptoms of ME (Tables 5 and 9). Seven body systems very commonly affected in ME were listed, and only 30% of respondents indicated that ME can affect all seven body systems, i.e., the nervous system, the cardiovascular system, the endocrine system, the musculoskeletal system, the gastrointestinal system, the immune system and cellular metabolism. These results are summarised in Table 9 below:

**Table 9.** The Impact of ME—Perceived extent of involvement of body systems.

