This document has a few good points notably saying that ME is not CFS, however yet again the tests to rule out other diseases are weak, it does not mention that the reference ranges for B12, Vitamin D and TSH still used by almost all labs have been shown to be wrong, They don’t require Homosysteine to be tested; it doesn’t say to do T4 which will lead to cases of central hypothyroidism being missed. There is no mention that I can see of testing for celiac. It doesn’t say to tests for Transferrin saturation which is a far better tests for hemochromatosis then relying on Ferritin, No glucose tolerance test to check for insulin resistance, LH and FSH are not mention nor are tests for Porphyria, Wilson’s etc, etc, etc it’s very likely that many people will have their correct diagnoses missed relying on the tests in this document.
It is also far too long to be used by many doctors, mainly because they have decided to use what looks like every study that has ever found any anomalies in CFS patients as proof that these are found in ME, almost all of this research has not been replicated and many other studies have not been able to find these anomalies. Plus many of the studies this research was done on will have been on mixed cohorts. E.g. although some studies have found changes on SPECT scans others haven’t, this hasn’t been sorted out scientifically yet. They should not be writing about this in a way that implies it is a scientific fact!
So when they are saying that all these anomalies have been found in ME it won’t help their cause because it hasn’t been replicated yet and many scientists and doctors will immediately lose faith in this document because of this.
On the whole it’s not much different than the CCC, a large collection of common symptoms with multiple choices as to what symptoms the patients can have, (which means you can select patients with extremely different symptoms using this document and yet they will all qualify for a ME diagnosis.) With a poor list of testing to rule out the other diseases that can cause these symptoms, put into a document that is so long the average doctor won’t read it, most doctors won’t use the check lists in this document because they are too long and will take longer than the average doctor will be prepared to spend on them. And on top of this they are implying that there are many measurable anomalies that are proven scientific facts, when these results have not been independently replicated so therefore they are not scientific facts, they are avenues of future research that need to be explored further, until this has been done they shouldn’t be included in a document like this.
So can’t say I’m particularly impressed, pretty much another CCC that at least’s stops combining ME and CFS and calling it ME/CFS sure it’s better than the likes of Fukuda and NICE, but it’s testing for other diseases is far too weak to insure that people with other diseases are not wrongly given ME diagnoses and included in further research.
All the best