BBC: How Long Concussion could offer new insights into Long Covid

Well there are a very specific set of symptoms and characteristics that nearly everyone with severe and very severe (and many people with mild-moderate) ME/CFS fits into. They roughly fit the ICC and represent somewhere around 0.1-0.5% of the population. These people experience severe functional limitation due to a disease involving immune mechanisms which presents as a deterioration of the illness after any exertion over baseline. This could be as simple as seeing too bright lights, or having to make a decision.

Further down the spectrum, are people who are functionally limited by unexplained fatigue that seems to get worse with activity. Using this definition you get much higher percentages, and biological abnormalities are much harder to find because the population becomes much more heterogenous.

If you water this down even more, you get the kind of thing we saw in that iranian study, basically just fatigue, and you start having really high prevalence figures >10%.

It is really difficult to properly draw the line, and until we figure out clear biological markers it is nearly impossible. But the line needs to be drawn somewhere.

It is terrible that people with symptoms that ressemble ME are being psychologised unfairly. However, it is not scientifically prudent to include these people in ME criteria simply for that reason, as it leads to a slippery slope which can water down definitions so much they don’t mean anything anymore.

The problem, in my opinion, very clearly lies with how medicine is structured/prejudiced, and not with current ME diagnostic criteria. The only way we can get objective diagnostic criteria is if we find a biomarker. Until then, the best we can do is group patients by symptoms and other characteristics.

 

In the short-term and possibly for the entire life of many of such people, that will possibly unfortunately be the case.

But should one loosen those definitions, which patients and researchers have fought for, just so that everyone gets bulldozed and any research becomes inherently useless due to it being too unspecific? Because that is what inevitably will happen if one returns to unspecific definitions along the lines of Chronic Fatigue. Many people with autoimmune diseases suffer from some form of fatigue, but that doesn't mean that they are all suffering from the same thing as research has shown and that is precisely what one could think if one looks at the specificity of their symptoms.

The picture ME/CFS patients have been describing has been rather consistent and especially rather interestingly specific from a biomedical viewpoint.

I believe the hope for those left out is that once good and specific research is able to figure out ME/CFS, whenever that may be, those that have something somewhat similar or something that "resembles atypical ME/CFS" will ultimately benefit from this as well. Which is certainly better than nobody benefiting from unspecific BPS ideologies.

 

King-Devick Rapid Reading Test, from
Post-Concussion Assessment as a diagnostic and mechanistic framework for treating
patients with Long COVID, 2022

Example card