Have honestly had enough. Is UK neurology really so far in the dark ages?? . Im worried this will go on my med record now. Wish I had never attended. What a massive step backwards!
A
subgroup of POTS
can be a' functional disorder' but only in mental health patients who are bedridden for months at a time with conditions like borderline anorexia who, post gentle exercise over time (via CBT/GET) have no organic dysautonomia and recover. NB: These patients commonly have no repeat TILT table test (once walking around) to save face. It would be negative, so they only met POTS diagnostic criteria when bedridden.
Recovery via GET is beneficial for them but for others with ME CFS who develop secondary POTS a disaster as then they are midiagnosed with
deconditioning POTS - this is what they think you have if as someone with ME CFS you have a positive TILT test for POTS.
Why does this matter also to organic POTS patients (e g. Autoimmune or Hyper POTS or Neuropathic POTS)? Well, the deconditioning POTS subset patients then pose as recovered genuine POTS patients online which makes the public presume POTS is a mental issue, case in point a glamorous young woman I won't name but I think she likes chocolate. She is now convinced POTS is caused by a bad diet but has forgotten the part she was bedridden by this bad diet and thus massively nutritionally deficient and had probably recovered naturally anyway from PVFS as her illness was very short.
UK charities use deconditioning POTS patients for their own reasons, believing in an all inclusive approach, no matter how damaging this is to patients with pure POTS, a POTS that exists even if you can walk around or even exercise - what POTS should be.
So with non organic POTS subset, their symptoms were functional, a normal physiological reaction to laying flat for months and developing a functional dysautonomia in which your ANS becomes sluggish.
The UK psych lobby know this (who deny ME) and exploit this subset as being relevant to anyone with ME CFS who has POTS because they presume you lay flat in bed all day, this is why in London (National Hospital for Neurology Queens Square) they give this misdiagnosis to patients with organic ME because they presume if you weren't deconditioned, you wouldn't have POTS because you don't have it anyway.
The worst offender for this in my experience is Professor Mathias or his 'team' who openly publish research claiming POTS patients is partly neurotic through neuro psych processes aligned to panic disorder.
The National reject the NICE guidelines on CFS/ME and won't even discuss ME. The doctors level of arrogance and defiance there is disturbing. Try going there, they will silence you in conversation. This means your ME symptoms never get discussed because to them, they are joining in with your delusional belief you have something called ME.
So to conclude, telling you, or writing to your GP
as someone with ME CFS you have a functional neurological disorder is a polite way to tell them you're mad because your behaviour is affecting your ANS, thus simulating POTS. Hence they see testing is pointless and hence CBT/GET is given to overcome your alleged fear of activity.
If it makes you feel better, they nearly killed me from neglect, diagnosed me with fake subset POTS then locked me up and no I'm not joking, and I also don't have depression but now I have PTSD as they caused it.
Top Tip. Don't return to any NHS doctor if you have organic ME CFS who tells you your symptoms are functional if you know you aren't neurotic and don't have anxiety fear avoidance issues.
If not, from bitter experience over decades of NHS abuse in the UK can do what the Wessely school has taught them to do - deny organic ME at all times and push for unexplained CFS. Once it's unexplained it's medically unexplained and thus your disability becomes functional.
Knowing this, stay away from them, they're like parasites who infect the mind of previously pleasant doctors who once you have a misdiagnosis of a 'functional neurological dusorder' will now view you as defective, far more than 'just having CFS/ME.
Functional means unexplained or non organic and thus the responsibility to recover is on you, not them - the very definition of a functional somatic syndrome and the 'justified' prescription of CBT/GET and antidepressants and a block on further outpatient neurological testing .
