Biomarkers for ME/CFS - discussion thread on the next steps for testing biomarkers, and why we need them

Moved post

A simple biomedical test that could identify ME/CFS might help those Very Severe who are trapped in terrible situations in the UK being denied assisted nutrition on the basis they must be psychologically refusing to eat - resulting in malnutrition to the point where they can no longer be saved. (ie inquest ongoing re case in Exeter and Dr Weir and Dr Speight's article on malnutrition in VSME). There are also children being taken from parents with false FII accusations and forced to exercise on the assumption the disease doesn't exist. I appreciate that there are psychs out there who will never be convinced by any amount of scientific evidence that the disease is biomedical - but a clear diagnostic test has to be of some benefit perhaps preventing these most vulnerable patients from ever ending up in front of substandard doctors in the first place.

 

I thought the whole point of such things was that you may not know up front. What if there are different disease variants that might be influenced by poverty issues, pre-ME/CFS private healthcare for other health conditions, etc. I thought the nearer to random selection you can achieve the better?

 

I guess this is what the BPS brigade exploit so much of the time. Coincidences abound within complexity, and if you cherry pick the ones you like, and studiously ignore the ones you don't, presenting your favoured ones as causal relationships ... then making silk purses out of sows' ears becomes routine.

 

And it could simply be a biomarker for something else, that has some correlation with having ME/CFS, though that could presumably still be very useful to know.

 

The perfect can be the enemy of the good.

My guess is many ME/CFS studies do not have a truly representative sample of the population.
Certainly I imagine that's the case in many US ME/CFS studies.

I think publishing data on the results from tests that had been paid for (esp. if you had other information on the sample population age, gender, etc. and restricted it to those with a confirmed diagnosis) would be better to not having any data.

 

From listening to the accents of callers to the helpline for the association I help run over the last 25 years, I can tell that people from lower socio economic groups/more deprived backgrounds are less likely to call. Similar things can be seen from their addresses from people who enquired.

My guess this is similar in many ME/CFS groups around the world and indeed I recall seeing some studies which suggest that also i.e. diagnostic rates are not even throughout society even in countries such as the UK with fairly universal healthcare.

Edited to add: I imagine such bias extends to partipation in much research in the field.

 

I'm sure you are right, but is that necessarily a justification for consciously introducing a potential source of bias, unless there is a way to correct for it?

 

As I understand it, the proposal was to get research done on the cheap by using existing data.

Future studies could use a different methodology.

 

Yes, (nothing is perfect of course), but that argument is immediately then prone to what someone's definition of perfection is, and what their motivation might be to label something as such. I'm speaking generally here, I emphasize.

I worry that line of argument can easily morph into the BPS' line of argument - that GET must be OK for pwME "because it is the best we currently have"; could almost paraphrase as "we can't have the perfection you seem to insist on, so what we already have must be OK".

Not for a moment suggesting that is what is going on in this case, but just a general observation, and how others could misuse.

 

Well in this case it relates to the level of bias and how important it is.

In some scenarios, not having a truly socio-economically balanced cohort could mean there was a large level of distrust about the findings. However I'm not sure where possible biomarkers and the like were being investigated in ME/CFS, that it would be a huge reason to doubt the findings in most cases?

And as I say the same question mark could be put over lots of existing research in the field. Biomedical studies in the field generally don't report the socio-economic status of participants and I imagine if they did, many would not be socio-economically balanced.