What are the tests that do currently exist?

I've seen a bit of back & forth on here, Twitter etc about whether there are any tests to help in ME diagnosis. Obviously general NHS line here seems to be that there aren't, but I think I've seen people say there are some.

The only name I can remember is CPET.

So, what thoughts do people have about if there are any, what they are, and why they can help diagnosis / what they indicate?

 

There isn't anything the NHS accepts or will do. There are plenty of potential biomarkers for this group of conditions in the blood and physical tests from research but nothing has gone through the accepted trial process yet. At some point one of the various tests needs to be trialed appropriately to be used as a diagnosis tool, there are a bunch to choose from over the last decades. Usually they aren't done by the reseachers but by healthcare systems so while the NHS is stuck on BPS and Psychology I doubt we get the necessary progressing trial.

Even CPET isn't really accepted in the NHS for anything but research and doing them is a very bad idea since its maximal exercise done across two days.

 

I’ve come across several accounts of people using neuropsychological evaluations to help in the ME diagnosis.

 

I think testing to r/o other diseases/illnesses has to be number one to start and then go from there with a proper history et

 

Excluding other things is certainly the one thing that is of known value.
The problem with potential biomarkers is not about trials. It is simply that the evidence that any of these really are biomarkers is not reliable enough to be convincing. Nothing to do with the NHS or healthcare systems. The evidence just isn't there. In most cases we have enough failed replication attempts to be pretty sure they are not biomarkers after all.

 

As I understand it, developing a biomarker is much harder than finding some chemical whose levels are different in healthy vs pwME. To publish a paper, you just need to show there's a statistically significant difference between healthy people and pwME. To develop a biomarker, you have to prove the difference needs is big enough that levels in the two groups overlap little and that most other disease don't give a false positive. Then you have to reproduce the results thoroughly.

 

Not necessarily. A lot of biomarkers have much more fluid relations to specific illnesses - ESR, rheumatoid factor, calcium level, etc. The simple problem for ME is that we have not got to the first stage yet - showing reliably that there is even a statistical association.

 

Aside from the question of a definitive biomarker, or biomarkers, there are suggested tests that may indicate abnormalities, but these are not of course recognized biomarkers of ME.

As others have said, there isn't a recognized biomarker for ME. Also as others here have said, exclusion of other diseases is important.

In my experience, after exclusion of all else, what was left for me was "cfs", or "Chronic Fatugue Syndrome", much later confirmed by an expert, who at that time used the term ME/CFS.

The ME expert looked at my tests that mirrored some results that other pwME had, noted my symptoms, did some more tests, and confirmed my diagnosis.

If a person's aim is to indicate there is some form of dysfunction or some level of disability, this might be a lower bar to meet.

Research has found abnormalities in some pwME. I would suggest the Canadian Consensus Criteria (CCC) for ME/CFS, and it's Overview. Page 18 of the Overview lists the tests ME experts have found to be abnormal in some pwME. The CCC was written by 11 ME experts who had seen 20,000 pwME by time of publication on 2003. The Overview came out in 2005, if I'm not mistaken.

This info can be found on the website for the ME/FM Action Network. I will add the link to these a bit later. MEpedia probably also has these documents.

As well, the 2015 Institute of Medicine report on ME/CFS has info on tests. I think MEpedia also has this document.

 

@josepdelafuente

Here are the links to the documents I noted above:

https://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf

https://www.mefmaction.com/images/stories/Medical/ME-CFS-Consensus-Document.pdf

https://me-pedia.org/wiki/Institute_of_Medicine_report

ETA: It's difficult to get many if not most of these tests covered by mainstream health care. One's physician might go along with a supine/versus standing heart rate and pulse measures in office, as described on page 18 of the CCC Overview. Given certain circumstances, there might be other tests in the Overview and the IOM report that might be covered by government health care. It unfortunately, is a mixed bag.

 

Hi @livinglighter and @josepdelafuente

I found this link to the Massachusetts ME/CFS & FM Association re neuropsychological testing:

https://www.massmecfs.org/resource-...iewsneuropsychological-testing-for-cfs-and-fm

ETA: It's indescribable how really terrible pwME have been treated. Over 30 years ago, neuropsychological test findings indicated deficits in brain functioning for pwME. And yet, ME has been publicized as a psychosomatic condition/hysteria/wrongful beliefs etc.