I am bedridden 24/7 with severe M.E. I paid for a private doctor to visit me at home whom has an interest in autonomic dysfunction. I have orthostatic intolerance as a part of my M.E, I suspect POTS, but am too ill for proper testing.
In his letter to my GP, he wrote 'the pathogenesis of ME/CFS complex is unknown and a spectrum disease, ranging from pure autonomic failure through to pure psychological problems'. I feel this statement is wrong but I am not intelligent enough to refute it. Can anyone share how one responds to such statements?
Context. In the UK with the kinds of failures, errors and limitations, if you got a large cohort of patients together they would indeed range from autonomic failure to things like depression and anxiety. Most of these are misdiagnoses. In all cases of misdiagnosis the core symptom, PEM in one definition variant or another, is ignored.
ME however has very specific pathophysiology. Here are two tests that can demonstrate that, though I don't think you can easily get either done at the UK, and one of them is not a great idea for the more severely ill. The first is natural killer cell
function not numbers. The second is a two day CPET ... but only to be done by those who are fairly sure they can handle it as it involves deliberately inducing a crash, and that most likely would not be anyone with severe ME. Other useful tests include the tilt table test, a sleep study, and a quantitative EEG. All these involve travel to test facilities so might not be good for someone with severe ME. There are many additional tests but I think most will be more readily argued with, at least until we have more definitive testing.
The problem with severe ME is that until doctors are more familiar with the testing on the less severe, and while these tests are problematic or impossible for a severe patient, there is not a lot that can be done.
If you do have to engage with this doctor again, ask them how they would start ruling out autonomic dysfunction, or autoimmune. Put the question back to them. Make it their responsibility to figure it out. The risk with this is they might start to sink into psychobabble though.