Pam, I can appreciate the trials of your NHS, but here in the US, we are hemmed in by insurance companies, if we are lucky to have insurances. They decide what they will pay for or not.
My ME/CFS specialist is not in the insurance network, nor are many of the tests and treatments I've had, for which I have had to spend thousands of dollars out of pocket. And, if I had not gone to extraordinary measures, leaving no stone unturned, I would still be sleeping 16 hours a day and spending most of my time in bed.
I had Hashimotos to begin with, high reverse T3, and have been on an unconventional thyroid regimen for 8 years and still am still taking thyroid, even though conventional MDs are disturbed about my nonexistent TSH. The thyroid problem has changed character over time as I went through cancer treatment, for ME/CFS, and gone through treatment for ME/CFS.
But, though having my thyroid dosing adjusted has been helpful, it has had very little to do with treating my ME/CFS.
Finding that my immune system was dysfunctional, not only underactive, but with multiple chronic infections that caused autoimmune problems (POTS and MCAS), depleted nutrients, messed up my HPA axis, caused hypercoagulation, with treatment disrupting my microbiome, and attacking this Pandora's box of problems has greatly helped me improve and simplified the number of problems yet to solve.
Not everyone will have the exact components of this disease. But, as a patient, I found it fascinating that a doctor is never met or heard of put together a framework that explained the variety of tests my doctors had been running and treatments if been getting, well into this saga. And, it seems that many other patients have many of the same issues if their doctors would bother to look.
I will say that I've gotten a lot farther in getting tests and treatments paid for if the doctors used ANY ICD10 code, except for ME/CFS. Infectious mononucleosis, chlamydia pneumoniae, hypogammaglobulinea, bitten by a parrot, etc. each have ICD10 codes that can be used that go with diagnostic test codes and treatment codes that will help make progress.
I was impressed early on, funding the ME-Ireland's website putting a clinic with testing and treatment for ME/CFS. It lists many of the tests and treatments used here. Is there any way you all can advocate for what's on that list?
This is challenging to all of us, the best way to attack this is through good science and not being hemmed in by bureaucracy.