I think the question that Spinney Lainey is asking in this thread is whether the 23andme test (which costs around £110 in the UK including shipping), is worth paying for, in terms of the cost–benefits for ME/CFS.
I have taken the 23andme test myself, and although I was pleased I did, as I learnt many interesting things, I cannot say that there was anything I learnt which provided any direct benefit in terms of treatment and amelioration of my ME/CFS symptoms.
So if for example you have a limited budget of say £300 for ME/CFS tests, I suggest there would be more important and useful tests that you could order, such as tests for the infectious pathogens that are associated with ME/CFS (these pathogens include: coxsackievirus B & echovirus, Epstein-Barr virus, HHV-6, cytomegalovirus, parvovirus B19, Chlamydia pneumoniae and Giardia lamblia).
I think the knowledge of whether you have an active infection with one or more of these above pathogens is potentially much more useful, since infections with many of these pathogens can be treated, or partially treated. Most of these pathogens can be tested for in the UK (at labs like
TDL in London), with the exception of chronic coxsackievirus B & echovirus infections, which Dr Chia says can only be accurately tested for at ARUP Lab in the US, or by the immunohistochemistry test.
Another useful test for ME/CFS patients might be a comprehensive digestive stool analysis, to determine if you have any overgrowth of pathogenic bacteria in your gut.
Perhaps others here may suggest further tests which have a good cost–benefit ratio in terms of leading to an amelioration of ME/CFS symptoms.
Though one's personal 23andme results are fascinating to read, and you may potentially learn some very interesting things about your health and metabolism, even though they may not directly relate to ME/CFS.
The genetic health analysis provided by 23andme includes:
• Your risks for developing common diseases (like MS, Alzheimer's, various cancers, etc).
• Your inherited genetic conditions (ie, any genetic diseases or metabolic abnormalities that you may have — most people will have a few of these).
• Your traits (like whether you are resistant to HIV, whether you are likely to have lactose intolerance, etc).
• Your drug responses (how you respond to various drugs, and whether certain drugs might be more toxic to your metabolism than normal).
Sadly I believe some of this health information is no longer offered on new 23andme tests, though still available for those people who got their 23andme results before the FDA stopped 23andme providing this health analysis interpretation of their genetic results. I am not sure what health information is still offered in new tests, and what health information has now been discontinued as a result of the FDA.
The 23andme test also provides ancestry data, detailing where you genotype comes from geographically.
However, to reiterate: in general, it seems to me that little of this 23andme info provides any direct benefit for ME/CFS. But others here may feel that they did gain benefits from their 23andme results. The reason I started
this thread here was to determine whether any ME/CFS patients have derived major benefits from their 23andme test. It is possible that people on the methylation protocol for ME/CFS (which does seem to significantly benefit around 25% of ME/CFS patients — see
this poll) may have gained some useful insights into the genetic blockages in their methylation as a result of their 23andme test, and may consequently have been able to better compensate for these blockages.