Approaching recovery from myalgic encephalomyelitis and chronic fatigue syndrome (2017) Devondorf, Jason et al

http://journals.sagepub.com/doi/abs/10.1177/1359105317742195?journalCode=hpqa#articleShareContainer

 

Not open access! Was there a very similar paper to this recently too? Maybe I'm just confused and they're really the same thing.

 

Recovery?

 

Full text is at https://sci-hub.bz/https://doi.org/10.1177/1359105317742195

It takes a nice swing at PACE's assessment of recovery:

Some of the expects interviewed don't sound very useful, such as seeing patients only once typically. That's how BPS fatigue clinics operate, not real specialists:


This explains some of the stupid statements, and I think this paper would have been more meaningful if they'd screened out the "expert" idiots who must essentially believe that ME/CFS is psychosomatic, and/or have no idea what the actual ME/CFS symptoms are:

The authors of the paper seem to agree, since they recommend rectifying the problem by educating the doctors who are talking out of their asses:

As to the central question of defining recovery:

They mention that assessment is primarily via questionnaires like the SF36, and recommend including something more descriptive where the patient basically assesses their own illness and symptoms:

It sounds like some of the "experts" featured in this study could benefit from being told about PEM, and that it's a mandatory symptom Hopefully they'll read the paper and learn something:

I didn't know that the BDI-PC was a thing, but it sounds like a vast improvement for use in sick patients:

Too bad we don't get to know who the experts were

 

@Esther12, I did see a paper recently that concluded that a sound definition of recovery, according to clinicians, was the regaining of pre-illness health and function - duh! - but I'm not sure that it's this paper. I'd thought that that statement had been in the paper's abstract.

 

Yes, that's the one:

Just like anybody normal would. in other words.

 

I think it's good to try to see a range, rather than screen people on the basis of their views, then write a paper about their views. I'm deeply suspicious of all qualitative work like this tbh, but it's probably most useful when the researchers involved do as little as possible to manage the outcome of their work.

For people interested, this is what they say on selecting the 'experts'.

 

Well, it's supposed to be about expert definitions and opinions of problems. If they don't know what the symptoms of ME are or think it's a manifestation of depression, they probably aren't aware of any of the research or other evidence, and they certainly aren't experts Hence the usefulness of their input on the topic is rather negligible.

While it is useful to know what random doctors think, and how highly they self-rate their knowledge in an area, that should be a different project. The only thing they contributed to the present paper is to illustrate that one group of delusional "experts" needs to be educated by the actual experts, and that they should probably be kept away from patients until they learn how to read about the disease they're treating.

 

"The average age of the PACE ME/CFS subjects was in the late 40s to 50..."

Out by a decade. It was 38 at the start of the 12 month trial, and hence 39 at the end.

Which makes the comparison with the overall population instead of the age matched population even more absurd and unreliable.

 

I thought JHP said it was making all these articles open access.

 

I think that was just for the PACE special issue.

 

A problem if use a fatigue scale, for example.

 

I think a person can also feel very fatigued without any significant loss of physical function.

Edit: By this I mean people who do not have ME, can potentially be misdiagnosed as having it if care not taken.