We’re not far off this situation ourselves, so following closely. My 18 daughter is very unwell, bed-bound, tube-fed, catheter and extreme pain. She become very ill following the ‘care’ of EC, though we have managed to extract her from her clutches. Very interested in the idea of genetic testing. What could this throw up that might help? What is WGS or WES?
WGS is Whole Genome Sequencing (more expensive, but covers more)
WES is Whole Exome Sequencing (less expensive, but covers a significant portion of the locations covered by scientific studies)
If there is a doctor that wants to lock up your daughter, then I suggest testing privately at first so that you are in control of the data. Make sure it's not one of these genetic testing companies that gives you a summary of the variants found (a health report), but not the data. Nobody yet has a database with all the mutations known today. The data is where the money is and where you can rerun her variants as new pathogenic mutations and new scientific discoveries are found and as new databases are put online. I suggest testing with a company that provides VCF, FASTQ, and BAM files on a flash drive.
Then I would run the data through every database there is to pull out the variants. Then I'd figure out which mutations are pathogenic or deleterious or highly suspicious on disease/syndrome causing genes. It's a little like learning a new language, but then again, it's a step towards getting your daughter well, so it is very worth all the effort. There are geneticists who will do this, and if you can afford that it's great. However, once they are done, make sure you get the data. Don't allow a hospital to ever do genetic testing without first getting in writing that you will get the backup files. Also a geneticist will never spend the time that you can analyzing her variants, so make sure to do your own research in addition.
There are many reasons behind debilitating fatigue. There can be genetic reasons behind fatigue. Not all of the genetic mutations are known today. Yet, fatigue can be due to genetic mutations that cause Mitochondrial Disease/Dysfunction, Sleep Syndromes, Glycogen Storage Disease, etc.... Often times, fatigue can be multi-faceted. There are many disease causing mutations already known to scientists and in the medical journals.
There are a lot of theories behind CFS/ME and a lot of great scientific research (and some trash research) and more studies that we all here want done.. I wish I had all the answers, but I don't.
However, if a child is about to be institutionalized for debilitating fatigue and was about to be forced to undergo GET and psychiatric treatment due his/her symptoms, then one strategy is to prove that what the child has wrong with her is not in her mind. Any positive tests for anything including: labwork, MRIs, etc... that are abnormal and show things like gastroparesis or low oxygen uptake during exercise testing is very powerful. Those things cannot be faked.
The same thing goes for genetic mutations that cause disease/syndromes that have fatigue as one of the symptoms. Showing proof that the condition is real is very powerful.
You don't need to find the entire answer (such as what is CFS/ME and how to fix it -- yet that would be wonderful for all of us). What parents who are forced with the possibility of doctors force-ably institutionalizing their child in a psychiatric ward need to do is prove that it's not in the child's mind.
I feel very strongly about this because this could have been me or my children. My symptoms were dismissed as a teenager, my children's symptoms were dismissed. Then we learned that we have a pathogenic mutation for Mitochondrial Disease. The doctors are now studying our family.
When I went to doctors (before knowing about the MitoD), I learned to not bring up the label of CFS because doctors would then just suggest reducing stress and talk about the possibility of taking SSRIs. Instead of focusing on debilitating fatigue, I learned to focus the appointments on the issues that were proven, such as the exercise intolerance, the aminoaciduria, the diabetes insipidus, the chiari malformation, the autistic spectrum, the muscle spasticity and weakness, etc.... By focusing on things that the doctors could get their heads around, those doctors then understood that such things can go hand and hand with fatigue.
It's sad that we had to do this (focus on a secondary symptom when the most troubling symptom was debilitating fatigue). We don't have to do that anymore now that we know it's Mitochondrial Disease. Having a pathogenic mutation that impacts the mitochondria which are located in every cell in the body and produce more than 90% of the body's energy -- no wonder we are severely fatigued.
I look forward to the day when someone has a diagnosis of CFS and is taken seriously and doesn't see the eye roll from doctors. However, with me and the kids, we live in the real world and had to function -- so while CFS was diagnosed (as well as many other things), telling anybody in the medical community (my doctors) about the CFS just made them give up on helping me find out what was wrong and how to get better.
If you can get your daughter into a Mitochondrial Disease specialist or a doctor that specializes in glycogen storage issues, etc.... these doctors take the fact that someone can have a medical reason for debilitating fatigue that is not just a psychiatric issue.
But as I mentioned earlier, genetics has come a long way and might just provide you an answer for your daughter. It's just another tool, like lab tests, and MRIs in putting it all together.