Chronic fatigue syndrome and the athlete, 1995, Parker et al.

"Chronic fatigue syndrome (CFS), previously known as myalgic encephalomyelitis . . . " We're going back wards.

 

It could also possibly cause death with or w/o ME.

 

Back in the 90s, in Canada, it was known as ME before CFS. I'm pretty sure of this.

 

We used CFS and ME interchangeably. So now I'm not sure.

When CFS was beginning to make it's appearance as psychological, everyone avoided saying CFS like the plague.

 

Over 30 years ago I was diagnosed as having CFS.

Very early on, I had no idea this term would be met with such hostility.

I've watched this term go from CFS to ME/CFS to ME. (In Canada.)

 

This seems to be the pattern of usage in the US. In the early 2010s, CFS was common, but this decade, ME/CFS is most common in formal contexts. Usage of just ME in the media seems rare but increasing.

 

https://sci-hub.wf/10.1080/15438629609512057

 

There were many epidemics documented round the world, often named after the place like Akeyuri disease. There was a conference and it was decided to call it Benign (because it was not lethal, not because it was mild) Myalgic Encephalomyelitis which had been used in the UK.

When there was an outbreak in Incline Village the people who knew about ME recognised it as another case but the CDC under Strauss wanted disagreed. (When it was shown not to be EBV, his speciality, he wanted it to be psychological) There was a meeting about the name but the ME people walked out in protest and it became CFS.

In the UK Wessely and his crew just took over ME by talking over the people who had been researching and treating it for years. They changed the name AND the definition so people like me who had already been diagnosed with ME suddenly had a disease we did not have the symptoms of.

Since then it has been a mess.

Behan in Glasgow had been looking at athletes with ME. These were people who used to be able to run for 20 miles but were only managing 5 now. Using fatigue as the main symptom means that it became strange to think of people with CFS being able to exercise but it was accepted before that.

 

The 'experience some partial recovery, followed by a relapse' sounds about right too. It would be irresistable for many athletes to not try and build oneself up 'fitness-wise' - almost like GET - once they thought they were on the mend, and maybe either that meant they were more well and just unfit (compared to before they were ill) or 'now were on the mend so could'. The fact they fell back down doing this is pretty indicative so details would be interesting

 

@Mithriel, thank you for your historical knowledge, and perspective!

 

To think that after all these years - nay, decades! - we still don't know if getting back to too much activity too soon after an infection contributes to tipping a predisposed person into ME or if that would have happened regardless. We have tons of anecdotes but no good studies having a good, systematic look at this.

Interesting that about half the people in this study had a remission-relapse course of illness. A few of us here have described this as well but I had assumed we were a small subgroup, but maybe it's not that small after all? Again, we don't know because this type of illness course has been largely ignored. Just another major missed research opportunity.

One thing I can't quite square in this paper is the relatively low number of weeks absent from work in the context of the length and severity of illness of the participants. May be just me not thinking clearly and a minor and historical quibble at any rate. The main impression from the paper is that at least some researchers in 1995 understood ME a hell of a lot better than many do in 2022 (not that that is news, the holders of our community memory like @Mithriel commenting above are doing a good job making sure these facts are not forgotten - thank you all).